1. Conference Resource: Mental Health and Adults with ASD

 

 

Suggested Articles:

Diagnosis

 Family 

 Skill Development 

  1. Understanding Social Challenges in ASD
  2. Increasing Social Involvement
  3. Importance of Life Skills
  4. Sexual Education
  5. Accessing and Finding Services and Supports
  6. Medication Use for Mental Health, Neurological and Behavioural Problems

Recreation, Leisure and Health 

Volunteering and Employment 

 First Person Perspective 

Post Secondary Education 

Professionals and ASD 

 

2. About the Knowledge Base


Visitors to the Autism Ontario Knowledge Base can search articles by using the list of categories in the left margin or by typing in a topic of their choice. The primary goal of this project is to develop and make accessible through an on-line, searchable database, a series of brief, easy-to-understand documents that are relevant to the lives of youth and adults on the autism spectrum and their families.  

Contribute to the Autism Ontario Knowledge Base: Individuals and organizations are invited to submit articles to be considered for inclusion in the on-line library. Articles can be submitted in an abstract or full article format, in either official language. Topics should be relevant to library users across Canada and beyond. Please note that submission of an article infers that the author (s) provides permission for the material to be translated. For inquiries about the submission process, please send an email to info@autismontario.com.  

Online and Download PDFs: The documents, which can be read online or printed in PDF format, address a variety of topics and most are available in both official languages, therefore benefiting Anglophone and Francophone families/caregivers, service providers, educators and individuals with ASD (Autism Spectrum Disorder), across Canada.

Article Process: In order to ensure relevance, practicality and accuracy of material, the development of this online library included the following process:

  •  Topics were suggested by individuals with ASD, family members and a variety of professionals;
  •  Articles were written by individuals with ASD, siblings and other family members, professionals and researchers from the field of ASD;
  • Family members and content experts reviewed final documents prior to posting.

Our Supporters: Creators of this online library wish to acknowledge Autism Speaks Canada Family Community Grants as a funding agency for this project. Visitors are invited to watch for their logo while browsing the library and take the opportunity to explore their website athttp://www.autismspeaks.ca/. Additional funding support was provided by the AMR Group’sKids’ Charity Golf Tournament. (Please note that the views expressed in material posted on this site do not necessarily reflect the views of Autism Speaks Canada, Autism Ontario or any other donor or funding agency.)

Thank You: Autism Ontario would like to acknowledge and thank everyone involved in this project and believes this centralized resource will enrich the lives of children, youth and adults with ASD and the people who support them.

Visit often and check for updates. 

 

3. Features and How to Use this Site
 
 
1. All articles are available in English and French
2. Every article is available as an RSS Feed (for your RSS reader application)
3. Articles can be emailed
4. Articles can be printed as plain black and white text
 
 
 
 
 
5. Search by keyword
 
 
 
 
6. All articles include PDF versions that you can download and save
 
4. 2 Diagnosis
4.1. Thinking About Autism

ASD is a life-long neurological disorder that affects the way a person communicates and relates to the people and world around them. ASD can affect behaviour, social interactions, and one’s ability to communicate verbally. ASD is a spectrum disorder, which means that while all people with ASD will experience certain difficulties, the degree to which each person on the spectrum experiences these challenges will be different.

For a simple, clinical definition of ASD, please visit the POND Network, the Province of Ontario Neurodevelopmental Disorder Network. Autism Ontario is a proud partner of their Parent Advisory Committee.

According to the National Epidemiological Database for the Study of Autism in Canada (NEDSAC), ASD is one of the most common developmental disabilities, in Canada, 1 in 94 children is diagnosed with ASD. Autism Ontario speaks to this number because it reflects the work and research being done about ASD in Canada. According to the Canadian Medical Association Journal, approximately 1% of the Canadian population is affected by ASD, which means there are approximately 100,000 Ontarians on the autism spectrum.

ASD crosses all cultural, ethnic, geographic and socioeconomic boundaries.


 

Changes to the Diagnostic Terminology

The terminology, the words or terms we use to diagnose ASD are constantly changing. As assessment tools are developed, the set of described behaviours are defined in new ways. There have been many changes made to the diagnostic terminology over time, and while it is important to know the history, what is most important, is meeting the needs of people on the spectrum, and their families.

For more information about changes to the DSM 5 or the diagnostic criteria, please contact your local Chapter or your local Family Support Coordinator.



Talking about Autism Spectrum Disorder

There are lots of different ways to talk about Autism Spectrum Disorder (ASD). We can talk about ASD medically, we can describe it through behaviour, we can talk about prevalence rates, we can talk about early detection and the importance of early evidence-based intervention, we can talk about the need for support for people with ASD across a lifespan, or we can talk about why advocacy is vital for building communities equipped to meet and support the changing needs of people on the spectrum.

It’s easy to think about ASD as a diagnosis, however, we are not talking about a diagnosis. We are talking about a person with ASD. We are talking about a person with individual needs. We are talking about a person with loving family members. We are talking about a person who needs to be accepted and included in her or his community, we are talking about a person who is granted equal opportunity preparing for and succeeding in adulthood.



The Unique Challenges of ASD

Ontario must support the individual needs of a person with ASD throughout their lifespan using evidence-based treatment and intervention, while remembering that developmental trajectories are constantly changing.

Whether someone with ASD is affected mildly, severely, or somewhere in between, they might have difficulty verbalizing their thoughts, managing their anxiety, dealing with change, or participating in group activities. This can sometimes result in unintended conflicts with community at large; it can lead to engagement with mental health sector, as well as criminal and family justice systems. Without the proper support, a person with ASD can experience joblessness, homelessness, strain and stress. This can have a major impact on their quality of life.

Focusing on the Full Life of a Person with Autism

Early intervention is critical to the development of all children on the autism spectrum. Waiting lists for evidence-based services are unacceptable. In some places in Ontario it can take up to four years to receive a diagnosis of ASD.

ASD doesn’t go away in adulthood; the system in Ontario must be responsive to the needs of children transitioning into adulthood. After high school, there is little support for youth looking to access post-secondary education or employment opportunities. While early intervention and services for children are critical, attention must also be given to the wide-ranging and overlooked needs of older youth and adults with ASD.

Unfortunately, the supports and services for adults on the spectrum are inadequate and fragmented, and fail to address needs across the entire lifespan. There is a societal cost to families withdrawing from workplace to act as caregivers, increasing responsibility as parents age and resources diminish. Housing for people with ASD continues to be segregated and expensive. People with ASD require affordable, safe, supported residences, where they are a meaningful part of their communities.

Because ASD changes over time – in its expression, challenges and delights; Ontario must be prepared to support children, youth and adults within the context of development, learning, family and community. Supportive, understanding and inclusive communities ensure that each person with ASD is provided the means to achieve quality of life as a respected member of society.

SaveSave
4.2. Autism Spectrum Disorder Factsheet - American Psychiatric Association

One of the most important changes in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is to autism spectrum disorder (ASD). The revised diagnosis represents a new, more accurate, and medically and scientifically useful way of diagnosing individuals with autism-related disorders.

Using DSM-IV, patients could be diagnosed with four separate disorders: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, or the catch-all diagnosis of pervasive developmental disorder not otherwise specified. Researchers found that these separate diagnoses were not consistently applied across different clinics and treatment centers. Anyone diagnosed with one of the four pervasive developmental disorders (PDD) from DSM-IV should still meet the criteria for ASD in DSM-5 or another, more accurate DSM-5 diagnosis. While DSM does not outline recommended treatment and services for mental disorders, determining an accurate diagnosis is a first step for a clinician in defining a treatment plan for a patient.

The Neurodevelopmental Work Group, led by Susan Swedo, MD, senior investigator at the National Institute of Mental Health, recommended the DSM-5 criteria for ASD to be a better reflection of the state of knowledge about autism. The Work Group believes a single umbrella disorder will improve the diagnosis of ASD without limiting the sensitivity of the criteria, or substantially changing the number of children being diagnosed.

People with ASD tend to have communication deficits, such as responding inappropriately in conversations, misreading nonverbal interactions, or having difficulty building friendships appropriate to their age. In addition, people with ASD may be overly dependent on routines, highly sensitive to changes in their environment, or intensely focused on inappropriate items. Again, the symptoms of people with ASD will fall on a continuum, with some individuals showing mild symptoms and others having much more severe symptoms. This spectrum will allow clinicians to account for the variations in symptoms and behaviors from person to person.

Under the DSM-5 criteria, individuals with ASD must show symptoms from early childhood, even if those symptoms are not recognized until later. This criteria change encourages earlier diagnosis of ASD but also allows people whose symptoms may not be fully recognized until social demands exceed their capacity to receive the diagnosis. It is an important change from DSM-IV criteria, which was geared toward identifying school-aged children with autism-related disorders, but not as useful in diagnosing younger children.

The DSM-5 criteria were tested in real-life clinical settings as part of DSM-5 field trials, and analysis from that testing indicated that there will be no significant changes in the prevalence of the disorder. More recently, the largest and most up-to-date study, published by Huerta, et al, in the October 2012 issue of American Journal of Psychiatry, provided the most comprehensive assessment of the DSM-5 criteria for ASD based on symptom extraction from previously collected data. The study found that DSM-5 criteria identified 91 percent of children with clinical DSM-IV PDD diagnoses, suggesting that

2 • DSM-5 Autism Spectrum Disorder Fact Sheet

most children with DSM-IV PDD diagnoses will retain their diagnosis of ASD using the new criteria. Several other studies, using various methodologies, have been inconsistent in their findings.

DSM is the manual used by clinicians and researchers to diagnose and classify mental disorders. The American Psychiatric Association (APA) will publish DSM-5 in 2013, culminating a 14-year revision process.

APA is a national medical specialty society whose more than 36,000 physician members specialize in the diagnosis, treatment, prevention and research of mental illnesses, including substance use disorders. Visit the APA at www.psychiatry.org. For more information, please contact Eve Herold at 703-907-8640 or press@psych.org.

© 2013 American Psychiatric Association

4.3. Red Flags for Autism

Warning Signs of Autism Spectrum Disorder in Early Childhood

If you observe items on the following list it may mean that your child is developing differently.  Parents should discuss this with their family doctor or pediatrician and ask about a referral for further assessment.

 

  • Doesn’t point to show others things he/she is interested in
  • Inconsistent or reduced use of eye contact with people outside the family
  • Rarely smiles when looking at others or does not exchange back and forth warm, joyful expressions
  • Does not spontaneously use gestures such as waving, reaching or pointing with others
  • Does not respond to gestures and facial expressions used by others
  • More interested in looking at objects than at people’s faces
  • May be content to spend extended periods of time alone
  • Doesn’t make attempts to get parent’s attention; doesn't follow/look when someone is pointing at something; doesn’t bring a toy or other item to parent to show them
  • Inconsistent in responding when his or her name is called
  • Seems to be in his/her own world  
  • Doesn’t respond to parent’s attempts to play, even if relaxed
  • Avoids or ignores other children when they approach or interact
  • No words by 16 months or no two-word phrases by 24 months
  • Any loss of previously acquired language or social skills
  • Odd or repetitive ways of moving or holding fingers, hands or whole body (rocking, pacing). Walks on toes. 
  • Displays a strong reaction to certain textures, sounds or lights (e.g., may reject clothing or want to be completely covered, put hands over ears, stare at lights)
  • May appear indifferent to pain or temperature
  • Lacks interest in toys, or plays with them in an unusual way (e.g., lining up, spinning, smelling, opening/closing parts rather than using the toy as a whole)
  • May engage in prolonged visual inspection of objects (e.g., may stare along edges, dangle string or move items closely in front of his/her eyes)
  • Insists on routines (has to perform activities in a special way or certain sequence; requires a particular route or food and is difficult to calm if even small changes occur)
  • Preoccupation with unusual interests, such as light switches, doors, fans, wheels – difficult to distract from these activities
  • Unusual fears but may not seek comfort from adults

 

 


Autism is treatable.
Early intervention is critical.
Know the warning signs of autism in young children.
Act early.


 

Keywords:  Autism, Autism Spectrum Disorder, Diagnosis

SaveSave
 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
4.4. What is the Best Estimate of the Prevelance of Autism Spectrum Disorders in Canada?

NEDSAC

 What is the best estimate of the prevalence of autism spectrum disorders in Canada?

The National Epidemiologic Database for the Study of Autism in Canada (NEDSAC) has been monitoring the prevalence of autism spectrum disorders (“autism”) in Newfoundland and Labrador, Prince Edward Island and Southeastern Ontario since 2003. Based on information from our most recent year of data collection (2010 in Prince Edward Island and Southeastern Ontario; 2008 in Newfoundland and Labrador), our best estimate of the prevalence of autism spectrum disorders in Canada is 1 per 94 children.

What does “prevalence” actually mean, and how is it calculated?

The prevalence of a condition refers to what proportion of the population has that condition at a certain point in time.  For NEDSAC, the prevalence of autism is reported on a calendar-year basis. Our prevalence estimates were calculated by dividing the number of children identified with autism who lived in the surveillance region (e.g. Prince Edward Island) at any time during a given year by the total number of children who lived in that region in that year. 

What age group is the 1 in 94 figure based on?

Since individuals with autism often are not diagnosed until they reach school age, the estimate above is based on children 6 to 9 years of age.

Why don’t you report the prevalence for 8-year-olds, like the Centers for Disease Control and Prevention does in the United States?

Our population in Canada is much smaller than that of the United States. We can get more reliable estimates by reporting the prevalence for an age group rather than a specific age.

Is the prevalence of autism increasing in Canada?

The prevalence of autism does appear to be increasing, based on the information we have collected since 2003. You can view a full report of our findings at www.nedsac.ca under Publications à Reports.

 

For more information, please contact:

Hélène Ouellette-Kuntz, PhD

NEDSAC Director and Associate Professor
Department of Community Health and Epidemiology, Queen’s University
Tel: 613-548-4417 x 1198
Email: helene.kuntz@queensu.ca

 

 

 
 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
4.5. Is it possible that my partner has an undiagnosed Autism Spectrum Disorder such as Asperger Syndrome?

By Kevin P. Stoddart, PhD & Lillian Burke, PhD

Increasingly, adults are diagnosed for the first time with Asperger Syndrome (AS) and other Autism Spectrum Disorders (ASDs). Many of these adults were not suspected of having an ASD and therefore were not diagnosed as children or youth because of our lack of understanding of the breadth of the autism spectrum. Historically, we believed that individuals with ASDs generally have a little success in the some of the milestones associated with adult life such as getting a post-secondary education, having productive careers, finding a partner, or raising children. Some adults with ASDs are identified when they find themselves in the mental health, developmental services, or legal systems. Others are suspected of having an ASD in response to a crisis in their lives such as the dissolution of a marriage or experiencing problems in their employment. Often, adults come to the attention of a diagnostician following the diagnosis of a family member or child with an ASD or another neurodevelopmental disorder, such as Attention Deficit Hyperactivity Disorder (ADHD) or Learning Disability (LD).

Many adults come to diagnosing clinicians because their spouse or partner feels that something is concerning about the way in which they express themselves, demonstrate affection, carry out tasks, and relate to others. Problems may have increased over the months or years in a relationship, and often are most obvious when a couple has children. Although some adults with AS find parenting and the presence of children in a house rewarding and easy, others may struggle with the role of being a parent. On occasion, their troubles in intimate relationships may have been explored with marriage and family therapists who use standard marital therapy approaches; it is most often found that these approaches are not successful. Marital therapists even suggest that one of the partners has AS. Previously, the partners seen in clinical practice were males, but women are increasingly being seen as they also struggle with undiagnosed traits. In the latter case, their overt presentation may be milder, but the impact of AS features can be equally distressing.

Below, we list some of the most common signs that a partner may have traits of an ASD:

  •  Has difficulty relating to you or others socially and requests the need for a lot of “alone time”
  • Seems emotionally distant
  • Is intensely interested in a few subjects, to the exclusion of others
  • Has unusual sensory responses or preferences
  • Has problems relating to their children and/or addressing their needs
  • Struggles to see themselves as a part of a family unit or household
  • Has problems with organization and focus, especially for tasks that are not enjoyable or of interest
  • May have difficulty expressing their sexual needs in conventional ways
  • May struggle with expression of emotions and knowledge of their own and other’s emotions
  • Previous therapy (individual or couple) has not been successful or productive
  • Struggles with symptoms of mental health or neurodevelopmental issues such as anxiety, depression, ADHD or LD
  • “Lectures” to you and others instead of engaging in reciprocal conversation
  • Has difficulty processing emotionally-laden communication and becomes overwhelmed

If you suspect that your partner has an ASD, it is important that you begin to discuss your suspicions with others, and with them. It is best to do this when they will be most receptive to this information, and not during a dispute or period of intense conflict. Providing them with books, reputable Internet sites, and on-line questionnaires for Asperger Syndrome will allow the individual to come to their own conclusions about whether AS is an issue for them. If you are actively engaged in couples counselling, this topic might be raised in therapy. Similarly, you or your partner’s individual therapist or clinician may provide a sounding board for your early suspicions.

When provided information in a non-confrontational and non-judgmental manner, many adults are relieved to find there is “a name” that explains their struggles in relationships and life. In these cases, it is important that contact be initiated with a professional knowledgeable about diagnosing ASDs in later life. Suitable professionals would be those who have extensive experience supporting adults with AS.

While the suggestion that they have AS may be received positively, others reject the possibility that they may have an ASD. In this case, it might be difficult for the unaffected partner to feel that progress can be made in their relationship; they may therefore need to decide on whether to stay or leave. “Separation therapy” may be helpful at these times. As well, separation and divorce mediation specialists are increasingly having contact with couples where one partner is affected by a neurodevelopmental disorder such as autism. 

The following reading material may be helpful:

  • Ariel, C.N. (2012). Loving Someone with Asperger's Syndrome: Understanding and Connecting with your Partner. Oakland CA: New Harbinger Publications Inc.
  • Aston, M.C. (2001). The Other Half of Asperger Syndrome: A guide to an Intimate Relationship with a Partner who has Asperger Syndrome. London: The National Autistic Society.
  • Bentley, K. (2007). Alone Together: Making an Asperger Marriage Work. Philadelphia, PA: Jessica Kingsley Publishers.
  • Finch, D. (2012). The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome and One Man’s Quest to Be a Better Husband. New York, NY: Scribner.
  • Marshack, K. L. (2009). Life with a Partner or Spouse with Asperger Syndrome: Going over the Edge? Practical Steps to Saving You and Your Relationship. Shawnee Mission, KS: Autism Asperger Publishing Co.
  • Simone, R. (2009). 22 Things a Woman Must Know if She Loves a Man with Asperger's Syndrome. Philadelphia PA: Jessica Kingsley Publishers.
  • Stanford, A. (2003). Asperger Syndrome and Long-term Relationships. Philadelphia, PA: Jessica Kingsley Publishers.

Keywords: Adults, Asperger Syndrome; Diagnosis; Relationships

 

Kevin P. Stoddart, PhD is Director of The Redpath Centre (Toronto and London, Ontario) and Adjunct Professor at the Factor-Inwentash Faculty of Social Work, University of Toronto. He has worked in the fields of Autism Spectrum Disorders, developmental disabilities, and child and adult mental health. For the last twenty years, his clinical focus has been children, youth and adults with Asperger Syndrome and the co-morbid social and mental health problems that affect them. 

Lillian Burke, PhD is a Psychologist and Assistant Director at The Redpath Centre (Toronto and London Ontario). In her practice, her primary activity is assessment of and consultation to individuals who have ASDs. She has carried out research and given presentations related to ASDs. She has published extensively in ASDs and Developmental Disabilities.

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
4.6. Frequently Asked Questions: Getting a Diagnosis of Autism Spectrum Disorder (ASD) in Adolescence or Adulthood

Kevin P. Stoddart, PhD & Lillian Burke, PhD

Even though we have known about autism for several decades, it is still common for older youth or adults to come to the attention of clinicians while seeking assessment for a possible Autism Spectrum Disorder (ASD). Below are some of the most common questions from parents of youth or adults, or from the adults themselves, when seeking an ASD diagnosis.

What is the purpose of a diagnostic assessment in adulthood? 

The purpose of a diagnostic assessment is to provide individuals with a diagnostic label that will help them understand what is contributing to their lack of success with appropriate tasks of adulthood and will guide intervention. A diagnosis may provide access to funds or programs (e.g., disability benefits), promote a more positive self-understanding, provide opportunities to address co-existing concerns (e.g., sensory or organizational), and facilitate better relationships (e.g., spousal and work relationships). It may also improve health (e.g., awareness of food sensitivities), provide opportunities to affiliate with those who also have similar struggles, enable individuals to receive specialist treatment, and alert them to the presence of, or potential   for, mental health problems.

Who is qualified to diagnose a youth or adult with ASD?

Medical doctors (GPs, psychiatrists) and psychologists are permitted to give a formal diagnosis. Social workers, occupational therapists, and speech-language pathologists may provide a professional opinion about the likelihood that an individual has the disorder. However, this impression must be confirmed by one of the previously mentioned professionals for this to be a formal diagnosis. Unfortunately, it can be difficult to find professionals who have experience diagnosing older youth and adults on the spectrum. Specialized ASD organizations such as Autism Ontario, Aspergers Society of Ontario, and Autism Society Canada have on-line listings of professionals in Ontario and across Canada.

Is a diagnostic assessment covered under OHIP? 

A diagnosis provided by a medical doctor (e.g., psychiatrist) or a psychologist employed in a healthcare setting is covered under OHIP. The services of psychologists in community settings are covered under some employee benefits plans, but not by OHIP. These employee benefit plans may not fund the entire cost of a diagnostic assessment. Individuals in post-secondary education receiving OSAP can apply for special financial assistance for diagnostic assessments.

Is it useful for an older adult (40+) to be diagnosed with ASD? Sometimes it can be useful for an older adult to receive a diagnosis. If they are functioning well without a formal diagnosis, or if a diagnostic assessment would not mean any change in their self-perception, services available to them, or treatment approach used, a full assessment may not be necessary.

Should I do anything to prepare for the assessment?

The assessor may want to see any previous assessments you have had, if any. As a part of the assessment, developmental milestones will be discussed. Understandably, in adulthood these may be difficult for parents or other family members to remember. It is helpful to think of these beforehand and gather any records, such as report cards. Make a list of the characteristics, problems, or behaviours that are concerning you before the appointment. As well, write out any questions that you may have for the assessor.

Do I require a formal diagnosis to receive appropriate services?

Although some ASD services in Ontario require a diagnosis before you can receive clinical services from them, many do not. Begin to explore those that do not require a diagnosis. Reading the literature on ASD or attending workshops can be helpful. Finally, begin to explore strategies that may be useful in interacting with an individual with ASD (for example, presenting information visually) and try them out. The success or lack of success of these interventions is useful in helping better understand your needs and is important information for the diagnostic assessment.

What is involved in the assessment process?

The assessment process depends on the professional completing the assessment and the individual being assessed. Some doctors may not make a diagnosis immediately and will prefer instead to gather detailed information. Those who are familiar with ASD may feel confident making a diagnosis after one appointment. During the interview(s), the assessor will want to know the characteristics that are concerning and the adult's medical and developmental history. Standardized tests may be a part of an assessment, especially if the diagnostician is a psychologist. Parents, family members or spouses may also be asked questions and to complete standardized questionnaires.

What are the clinical issues that should be assessed in adult ASD?

When a person is referred for an ASD assessment, the assessor looks not only at the specific characteristics of the ASD, but also considers features of other alternative or concurrent disorders. Psychologists will review history and current behaviours and concerns, as well as administer a variety of measures to determine a diagnosis. Specific concerns to be addressed in adult assessment may include:

 

  • Intellectual/Cognitive ability: assesses intellectual abilities; specifically, verbal and perceptual processing abilities;
  • Academic ability: provides information about individual academic achievement overall, and identifies areas of academic strengths and challenges;
  • Memory and attention: examines ability to remember or recognize information in short- and long-term memory, as well as working memory, and determines an individual's ability to attend;
  • Functional or Life-skills: assessment of functional abilities or daily living skills, with suggestions for areas in need of development;
  • Executive Functioning: examines ability to plan, initiate, organize activities and tasks, self-monitor, and regulate behaviour and emotion;
  • Mental Health: assessment of anxiety and depression relative to age and gender-matched peers, other mental health concerns such as obsessive and compulsive behaviours, and ability to identify and express emotions;
  • Sensory Concerns: to gather information about sensory seeking and avoiding behaviours and specific sensory-related behaviours or concerns (and may result in referral for an occupational therapy (OT) consultation);
  • Disorder-specific characteristics: assessing characteristics of specific neuro-developmental disorders such as Asperger's Disorder, Autistic Disorder, or Attention Deficit Hyperactivity Disorder (ADHD).

 

I do not usually do well in testing situations. What should I do about this?

Many adults with ASD do not function optimally in a testing situation for various reasons such as anxiety, inability to focus, or sensory distractions. Tell the individual that is assessing you what your experience has been, and if there are any strategies that have helped to address this problem in the past. A good assessment will usually contain a statement by the assessor about whether they feel the test results are representative of the individual's true abilities.

Is it possible that more than one person in the family has a form of ASD?

Studies are increasingly pointing to a genetic basis for ASD. We are seeing multiple occurrences of the disorder in the same generation or across generations in families, with varying degrees of severity. Addressing this openly, as a family, may sometimes be stressful or, alternatively, bring feelings of relief and greater understanding from family members. If you know or suspect there is a history of ASD or other similar symptoms in the family, this is useful information for the diagnostician to know.

Does it matter if the person is diagnosed with a specific ASD (such as Autism or Asperger’s) as opposed to ASD generally?

It is important to remember that eligibility for certain services may be in part determined by the specific ASD diagnosis an adult has been given.

Knowing the adult has some form of ASD is most important initially; over time, the specific labels used may change, and it isn’t necessary to re-establish that a person has an ASD unless they feel the original diagnosis given did not reflect their real ASD profile. In such cases, the label can be "fine-tuned" if needed.

The person with suspected ASD already has another diagnosis. Will that diagnosis remain if they are identified with ASD?

Sometimes, a label that is given before a diagnosis of an ASD addresses some of the specific problems that may be evident (for example, a learning disability). This label may however not account for the many behavioural, learning, or emotional characteristics that ASD encompasses. Many people have concurrent diagnoses of an ASD and a Learning Disorder or some other disorder. It is helpful to think of the individual as having the diagnosis that is most inclusive of all the symptoms that he or she presents. Therefore, if a person has a diagnosis of an ASD and has some obsessive or compulsive features, these may be subsumed under the label of the ASD rather than the person also receiving an OCD diagnosis. If an individual has symptoms that are not fully explained by a diagnosis of ASD (such as severe depression or severe anxiety), these may be kept. All diagnoses may need specialized and focussed attention in the individual's treatment plan.

Who should I tell about the diagnosis?

Any professional involved with the adult should know that they have been diagnosed with an ASD. Sometimes, if the person is mildly affected by ASD or Asperger Syndrome, it may not be necessary to tell others. Usually, however, telling people helps them understand the person better and interact more effectively with them.

It was recommended there be further assessments by other professionals after the diagnosis. Is this necessary?

A question that should be asked before agreeing to any assessment is: “What specifically can this process add to the treatment plan or approach?” Searching for assessment services may also delay active treatment. The major benefit of multiple assessments is that specific issues and concerns can be looked at from a multi-disciplinary perspective. Therefore, a person who has significant sensory processing issues may benefit from an OT assessment or consultation after they receive their diagnosis.  If they need therapy to address anxiety or depression, however, they should not delay that therapy until after they see the OT.

I am a female with suspected ASD, but professionals and others have tended to discount my suspicions. What should I do?

While diagnoses of ASD in males continue to increase, the referrals and diagnoses for women have not followed this pattern and females may be diagnosed later in life, especially if they are considered “high functioning”. There are a few possible reasons for this, including socialization to a “gender role”, better abilities to cope with stressful situations, and better developed social skills. Signs and symptoms of an ASD may be less obvious; therefore, it is important to see a diagnostician who is familiar with the presentation of ASD in females.

I have just been diagnosed. What's next?

When anyone is diagnosed, the most important next step is for professionals and family members involved with the person to learn about the methods of support and intervention used with individuals with ASD and apply them to their interactions with this person. Local agencies specializing in developmental disabilities in general or ASD in particular, and resources on the Internet, are excellent places to look for this information. The diagnosis will also allow parents of adults to find support groups with those in similar situations.

 

 
Kevin P. Stoddart, PhD is Director of The Redpath Centre (Toronto and London Ontario) and Adjunct Professor at the Factor-Inwentash Faculty of Social Work, University of Toronto. He has worked in the fields of Autism Spectrum Disorders, developmental disabilities, and child and adult mental health. For the last twenty years, his clinical focus has been children, youth and adults with Asperger Syndrome and the co-morbid social and mental health problems that affect them. 

Lillian Burke, PhD is a Psychologist and Assistant Director at The Redpath Centre (Toronto and London Ontario). In her practice, her primary activity is assessment of and consultation to individuals who have an ASD. She has carried out research and given presentations related to ASD. She has published extensively in the area of ASD and Developmental Disabilities.

Keywords: Adults, Adolescents, Diagnosis, Self-advocacy


 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
4.7. Red Flags for School Age Children: Screening for Autism Spectrum Disorder in School-Aged Children and Youth Introduction

Introduction

Autism Spectrum Disorder is characterized by a wide range of features. Some school-aged children and youth with characteristics of Autism Spectrum Disorder are not identified earlier because their features have not been recognized as being related to this disorder due to the subtle and wide-ranging nature of the features.

This document is NOT a diagnostic tool but may be used by parents or professionals to help them to explore if a child should be referred for follow-up. This document can be used to provide a focus for discussion by highlighting specific behaviours of concern. Follow-up may include assessment and/or intervention which may be obtained through Community Service Providers and/or In-School Teams.

The following list of characteristics and/or behaviours should be considered as Red Flags for a possible Autism Spectrum Disorder. Every child with ASD is unique and may show some or many of these features. Some of these characteristics are not unique to ASD and may be exhibited by children who do not have the disorder.

The features associated with ASD are typically grouped into the areas of Social, Communication and Behaviour. Check the applicable features.

SOCIAL

May display:

  • Limited ability to develop and maintain friendships with peers over time despite a desire for friendship e.g. engages in solitary activities, seldom joins groups successfully
  • Easier interactions with adults than with peers
  • Limited ability to initiate, maintain and end a conversation appropriately e.g. often sustains a conversation on topic of his/her own interest, talks off-topic frequently, difficulty with conversational turn–taking, greetings
  • Rigid adherence to rules and routines; becomes very upset if rules are not followed e.g. supply teacher, change in schedules/timetables, peer games
  • Limited ability using and understanding non-verbal skills e.g. appears rude, displays flat affect, difficulty with unspoken social rules, interpreting facial expressions and gestures, may show emotions that are not appropriate to the situation, may violate rules of personal space/stand too close to others
  • Difficulty understanding that other people have different thoughts and feelings than student (perspective taking) or assumes that others understand their thoughts and feelings
  • Social naivety; e.g. bullied or bully, rejected, taken advantage of by others

COMMUNICATION

May display:

  • Use of complex words and phrases (good grammar skills/ strong vocabulary skills) however may not fully understand what they are expressing
  • Highly verbal skills e.g. may spend more time talking than listening
  • Peculiarities in speech e.g. jargon, unusual noises, atypical rhythm in speech, odd inflections, monotone pitch, speaking in an overly formal manner, lack the ability to modulate the volume of voice,
  • Echolalic speech (repeats phrases over and over again) e.g. repeats back words or phrases he/she has heard previously or in other contexts, mimics television, movie, and/or computer phrases,
  • Excessive or repetitive questioning
  • Difficulties answering questions, especially open-ended questions or why questions unless related to student’s area of special interest
  • Difficulty understanding jokes, metaphors and sarcasm e.g. interprets speech literally and has difficulty understanding idioms and/or sarcasm
  • Difficulty expressing complex, feelings, emotions and/or thoughts

BEAHVIOUR

May display:

  • Self injurious behaviour or aggression to others e.g. skin picking, nail biting, pinching
  • Stereotypical and repetitive motor mannerisms e.g. hand or finger movements, posturing, grimacing
  • Awkward and uncoordinated movements e.g. may overshoot when reaching for materials and drop things on floor; may “touch” others with enough force to hurt; may hold pencil with light grip so that pencil marks are too vague to read or with too much force so that paper tears, poor ball skills
  • Unusual sensitivities to noise, light, touch, smell, taste, and/or movement
  • Unusual or limited coping skills e.g. may be quick to run away, and/or hide
  • Significant or unusual anxieties e.g. greater than expected distress/concern over other people touching their possessions, strong need to arrange, organize, or line up objects,
  • Unusual and often socially inappropriate personal habits such as picking at body parts, smelling inedible objects, and/or unusual personal hygiene
  • Poor self-regulation e.g. becomes very angry or frustrated quickly (student goes from calm to meltdown in seconds), difficulty calming him or herself
  • Highly developed memory e.g. bus routes, sports statistics
  • Uneven profile of skills e.g. highly advanced in one area and very weak in other areas
  • Unusual interests relative to peers

NEXT STEPS

Intense interest in a few prescribed topics/activities, often at the exclusion of other topics/activities or more than would be expected in peers

For parents, take this completed document to your family doctor or paediatrician and request further assessment.

For professionals and/or community members, review this completed document with parents and suggest consultation with family doctor or pediatrician

For educators, refer to your In-school Team and consult with Area/Regional Support Staff.

Used with permission from the guide entitled York ASD Partnership Evidence Based Practice Guide to Screening and Assessment (June, 2015).

5. 3 Family
5.1. Travelling with a Child with Asperger's Syndrome
Angèle Desrochers: teacher and parent of a child with Asperger’s Syndrome

Traveling with a child can be a challenge. That challenge is multiplied when traveling with a child with Asperger’s Syndrome.  Planning is the key to preventing, or at the very least reducing, the child’s level of stress.  Here are a few ways of decreasing the stress and anxiety related to travel:

  1. Prepare a book with pictures of each step of the trip. Include a short explanation with each picture. This allows the child to read the book like a story and also helps ensure that every person who reads the book with the child uses the same language and presents the same details.
    • Review this book frequently before the trip.
  1. Navigate your destination’s Website so the child can ‘see’ where they will be going.
  2. Clearly communicate the beginning and ending of each activity (e.g. the flight, meals, performances, etc.)
    • Use different methods for illustrating the length of an activity. For example: a watch or a timer, the length of a television program or movie, a sand timer, etc.  
  1. Review the daily schedule every morning and allow the child to ask questions. This is a great opportunity to inform the child not only about the day’s activities, but also the order in which they will be occurring.  
  2. Bring along food the child likes, especially if traveling to places where the food is different.
  3. Maintain a certain daily routine.
    • Time for meals, rest and bed.
  1. Allow the child to bring an item that provides security or a few games or activity books.
    • Make sure the items chosen are permitted on board if traveling by plane.

The number of pictures to include in the book will depend on the activity, the level of detail the child needs and the amount of information they are able to process. If necessary, a book can be created for each part of the trip. This allows the child to review one part of the trip at a time, and for multiple reviews, as needed.

The following are examples of pictures to include in the book:

  • The airport: waiting area, baggage area, security procedures, and washrooms.
  • The plane and the flight schedule: seats, security procedures, and activities such as movies, music, snacks or meals that will be served.
  • Means of transportation once you arrive at your destination: bus, taxi, and shuttle service.
  • The hotel: lobby, elevators, and room.
  • The local area and activities: dining room, restaurant, beach, theatre, and pool.
  • Details about the return trip.

It’s understandable that a trip can cause anxiety for a child with Asperger’s Syndrome but it is important to provide the child opportunities to live new experiences.  In planning for a trip, it is imperative that the child knows as much as possible about the upcoming adventure.  

 

Key words: Asperger’s Syndrome, anxiety, travel, tips for parents

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
5.2. When You Have a Child with ASD: Looking After the Rest of the Family

Tip Sheet

Susan Day Fragiadakis, M.A. Sc., ASD Consultant

Adapted from an article originally published in Autism Matters, Summer 2008, with quotes from Cindy Alves, Lisa Foxcroft, Anne-Marie Pap and Melanie Coulter.

 

 
When you have a child with special needs it is not uncommon for his or her needs to overshadow those of the rest of the family.  It is essential to remember that every family member has needs and to find ways to meet these needs.

Hobbies

  • You were a person with interests before you had a child with ASD and you need to find that part of yourself again
  • It is good for you and your family to realize they can survive without you for a few hours
  • You will be a better parent if you are happy and fulfilled

 

“I have been lucky enough to have the opportunity to act in our local community theatre. Taking on the personality of a totally different character has quite often given me a wonderful perspective on my own life. It is the classic example of ‘And I thought I had problems!’ ”

Keeping a Journal

  • A place to write your thoughts (ones you share with others, and ones that are just for you)
  • Your dreams, needs, wishes, hopes as a person
  • What you are thankful for, proud about from the day
  • It is not being marked so if you miss a day, don’t sweat it!

 

“Having a diagnosis of autism for my son has been a “blessing in disguise”.  It has truly changed my outlook on life. I had considered seeing a counsellor to help sort out issues with my personal life and the stressors of having a child with autism. Instead, I decided to compile a journal about me and my thoughts. 

Sibling Needs

  • All family members should have their needs met, not just the child with ASD
  • Siblings often feel guilty asking for undivided attention, but they need it and should have it
  • Many siblings become major supports for their sibling with ASD in adulthood, so it is important that they feel their needs were also met in childhood
  • Your other children can provide you with wonderful parenting experiences you do not want to miss!

 

“My daughter’s siblings have giant hearts and the patience of saints but they all need to have a day of what we call “special time” with one or both parents. Each year we take each child on an outing separately.”

Support from Other Parents

  • Professionals can be a great source of information, but other parents have real life experience 24 hours a day
  • Other parents can listen without judging since they have been there too
  • Parents can share positive experiences and honest opinions about services and professionals
  • You have someone who understands it is as important to celebrate the small victories as the large ones

 

“My suggestion to moms and dads would be don’t be shy. Find a friend who also has a child with autism and share your dreams, fears and hopes because we all have aspirations for our children. Let’s help them achieve their goals!” 

Maintaining Your Partnership as a Couple

  • Two heads (or set of hands) can make life easier - so if you have a partner it is important to keep your relationship intact!
  • You were a couple before children and autism entered your life, and you can be a couple still, you may have to sometimes make the relationship the top priority
  • If you are supported and happy it will help with the ups and downs of everyday life in navigating the world of autism

 

“As difficult as it is to not talk autism, the topic is off limits when my husband and I go out for dinner or an overnight stay.

Health and wellness are also important considerations.  While it may be a challenge, making an effort to get enough sleep, eat well, exercise and find ways to relax and de-stress are important for everyone’s well-being.


 

 

Keywords: Coping, Family, Parents, Siblings, Tips for Parents

 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
5.3. My Brother... Just Doesn't Fit In

By Michelle Tyler

My brother David is 42. He was diagnosed with Type 1-Juvenile diabetes when he was 2 or 3. Later on in his childhood he was diagnosed as “moderately retarded”, sorry for the non-pc term (this was the terminology of the time).

David has limited problem solving and decision making abilities and due to his health problems and autism he cannot live independently. He lived at home with our mom for all his life.

David has many lovely and positive qualities. He is very sociable, a sweetheart and has an enormous laugh. He loves cars and will remember what car you drove back in 1978 and all the cars after that. He also loves movies, Wii games, and Singstar. So, although he lacks important basic life skills; he can and will beat you in Wii bowling.

David is well known for his strict schedule. Trust me, you will be informed when it is breakfast, lunch, dinnertime and all snack times like clockwork. Briefly, when I was really little, I did not realize my brother was different. I thought everybody had a detailed list of instructions on how to use the toilet. Who knew the order of those steps was so important…! My mom would tell me that I would help direct David. I think that was code word for bossy! It really wasn’t until I was 9 or 10 going to summer camp that I realized how different he was. I hated summer sports camp. Instead of learning the fine art of T-ball I was fending off some serious bullies. I got my first taste of my role as the protector and really just how cruel kids can be.

So, as I progressed onto a lovely, thoughtful teenager, I dreaded family outings. I would try and hide if we all went to the grocery store. My brother was and still is quite loud, singing and yelling as we went down the grocery store aisles. I could not crouch low enough. That just wasn’t cool! I went to your stereotypical high school and my brother attended a vocational high school in a different city; which was great for him. He was still an outsider; but he graduated and went onto a work placement at a garage, which has turned into a permanent full-time position for 20 years.

Our parents divorced in the 1980’s. My mother continued as my brother’s primary care giver for all of his life. My mom took care of everything, from the mundane stuff such as balanced meals and hair cuts to outings with the group from Woodview Manor (for a respite weekend). My mother was the driving force behind my brother’s successes. She taught him as many life skills as he could absorb. My mother fought hard for many years for any opportunities David could have. She had the most patience of anyone I ever met. She unfortunately passed away suddenly in 2010. I was left with some very big shoes, which I could not fill.

I had to make many decisions. This was not the life I had envisioned. I thought one husband was enough to fill that criterion of 1.7 children! So, what were we going to do as a family? A lot changed for me when my mom died. I had to turn into a caregiver overnight; from sister to mother. I tried hard to keep my brother’s routine going; but I was slowly falling into a big dark hole.

One of my first concerns was to not kill my brother. This may sound like an obvious necessity but we had some issues with his insulin injections and poor David ended up in the hospital a few times. My mom knew how to tweak his diet and insulin just by looking at him. I did not possess these skills. So, after many painful finger pricks and swabs we got his glucose numbers under control. During this process I had been lost as a sister and became the primary care giver. My brother would try to communicate his needs but it always felt like an order. Some days I resented him; felt like his maid. I finally came to the conclusion I could not handle being a full time caregiver to my brother. I felt a lot of frustration, sadness and guilt. In the end we had to look into other living arrangements.

That is when we started our journey through Contact Hamilton (Children’s and Developmental services). There was hardly any paper trail. My mom was last in contact with them 10 years earlier.

We finally went for an intake evaluation, and even went through the painfully long new Developmental Services Intake Assessment. I thought I could take a breath. These people can finally help me. However after many tears and begging, we were still left with very few options. They were unable to place David at that time. He didn’t fit in.

We were instructed to look at nursing, retirement homes and secondary lodging homes. Nursing and retirement were out of the question; he was 40 and still working.

My husband and I viewed several lodging homes in Hamilton but these were not a good fit either. Most weren’t willing to take on someone with his diabetes, unless he was independent with his injections. During this time, my brother had to learn a lot of new skills. He now had mastered loading his insulin pens, delivering the correct insulin, and checking his blood glucose. These skills were all coming along but not enough for most of these facilities. And besides, I wouldn’t live in most of the places we looked at so there was no way I was going to let my brother live there!

Luckily, we were told about Dromore house. It is a special place in Dundas, Ontario that is a lodging home which is home to 6-7 other men with various disabilities. Most of the residents are dealing with mental health problems rather than autism disorders. They were willing to take on his diabetes and autism and work with me to find ways to help David continue some sort of routine, go to work and try to be happy again. We finally found a place where David fits in!

Now, this was a huge adjustment for him; he was leaving his home of 40 years. He would get angry, he would get quiet, he would slam his arms, slam doors at times, I think to express himself.

I begged for psychological counseling. The experts were all telling me due to his level of functioning it would be of no help. I was told it would really only benefit me. So, there was no help for helping my brother deal with his grief and coping with change. If he was higher functioning there might be a couple of programs but once again, he just didn’t fit in. I brainstormed with several other intelligent people and we tried a few things. One thing that helped was a photo album. We took pictures of the house, all the parts he liked and he could look at them whenever he wanted.

We had to pack up and downsize his things. This was a painfully slow process. We sat down and went through every car book, magazine, comb, and penny collection. I am no counsellor but I think it helped him have some sense of control and in the end we sorted it all.

One of the toughest situations was saying goodbye to his home he had known for 40 years. I started him off by walking around the inside of the house. We then followed it by pacing straight up and down the lawn saying good-bye to important items, e.g., “Good‑bye tree.” When David was done his ritual he came back to me, gave me a hug and asked why I was crying. He was perfectly okay; that process of letting go worked for him. I tried to follow his lead several weeks later but it did not work as well for me.

ODSP (Ontario Disability Support Program) and DARTS (Disabled and Aged Regional Transit) were other important issues that needed to be addressed. ODSP provides additional funding for David’s housing, diet, medication and transportation. Without this support the family is responsible for making up the difference or finding alternate funding. This process was pretty straightforward once I knew about the monthly paperwork and responsibilities.  DARTS is the transportation service out of Hamilton. David had been using this service for almost the entire 20 years he had been working. This is what enabled him to go to work. We were warned that changing his route to work might be difficult. Luck was on my side and they were able to change his route with little disruption in his schedule.

David did not possess a bank account. He is not a good money manager as my mom managed all his money. The bank eventually came back with an acceptable solution: a joint bank account. I now manage his money and his bills.

Ultimately my brother ended up with some support structures again. He was involved with Contact Hamilton again, social services, even had a bank account. He had more structures in place then he had had for over 10 years. Even though I had family and friend support, I felt really relieved that I wasn’t doing this alone as our mother did. Because, a lot of the time you do feel like you are alone and no one is listening. And if they are, they can only do so much.

I think my mom had given up on the system. I think she was still a fighter for his cause in the end; but did not know how to use what energy she had left. My biggest issue at the moment is working on my brother’s guardianship. Officially he does not have one. Originally a lawyer told me that this could be an expensive and long process. But since talking and listening to presentations at an autism conference I feel I can tackle this challenge. This designation will help me address his future healthcare needs. His diabetes will be an ongoing, progressive issue that I want to fully be a part of. I also cannot start an RDSP (Registered Disability Savings Plan) without this title. I want to secure funds for his future needs.

So, I guess the issues I would suggest to parents, caregivers, and others to think about are: what will be the future needs of your adult children be? How are you going to meet those needs? Where will they live? Are they going to be able to manage independently or dependently? Are their enough supports available and in place?

In my opinion, there are not enough appropriate living options for adults with autism and not enough social workers to go around either.

How to make it better? How to see those issues change? I am not sure. I think it starts with communicating. Discuss with the other adult siblings what your future wishes are and start to make plans. Set-up the infrastructure - continue to work on those important life skills, organize bank accounts, prepare your wills and prepare yours and your children’s Power of Attorney or guardianship.

I continue to be inspired by all the people who have helped me and continue to help me; friends, family and people who were strangers a year ago. People like Robin who works at Woodview, believes in everybody’s abilities and strives to see change happen and people like Josephine & Michael at Dromore House, who continue to monitor my brother’s day-to-day welfare. All these people continue to see people’s abilities and truly want to help.

As for my awesome brother, who didn’t fit in most places; now he is fitting in. I am so proud and amazed at how well he is adapting and coping and also of all the new skills he acquired. He may never be able to fully cope with all his losses but he continues to go to work, enjoy his new routine and be my brother again.

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
5.4. Autism: A Sibling's Perspective

By Kathy Chorneyko

 

On April 3, 2012, my brother John and I had the great pleasure of participating in the sibling session of the 4th biennial Stages of Autism: Adolescence and Beyond Conference. We shared with the audience a bit of John’s and our family’s story which hopefully is summarized with some coherence in the paragraphs that follow.

Early Years

John was born on March 12, 1968, the third in what was to be a family of four children. At the time he had an older brother by twelve years, myself the older sister by five, with a younger brother to arrive two years later. My memories of John’s early childhood are somewhat hazy and as far as I recall nothing seemed amiss in the beginning but when John was around two, things started happening that weren’t completely usual. For example, he became particularly sensitive to loud noises and unusually frightened of seemingly innocuous things. There was one particular television commercial for laundry detergent that would send him running away in fear.

As John grew older other things became apparent: social interactions and the usual childhood group activities were difficult for him. On the other hand there were things he was spectacular at, like building with Lego® and remembering all sorts of minute details and facts. I recall a multitude of doctors and assessments and unfortunately a pervasive undercurrent of guilt put on our parents for John’s problems. To their credit, our parents weathered this well although I can only imagine now, after becoming a parent myself, the overwhelming stress and anxiety which they shielded us from. There was one particularly difficult family session where we were all observed from behind a two-way mirror. After a very short time, my parents packed us all up and left. In all likelihood these early encounters contributed to the very delicate trust they had for the psychiatrists, psychologists and social workers that were to come. It was the case also that there was a general lack of educational facilities/programmes for children like John. At someone’s well-meaning intention, my parents went to visit a suggested institute and while they never shared with us the details, my mother was particularly quiet for some days and finally made it clear to us all, that in no uncertain terms would John ever be in a place like that. It seemed to be a profound moment for my parents and I wouldn’t be surprised if it was then that they understood how they would have to closely organize John’s future.

So my parents spent countless hours and days investigating options for John, reading about different treatments and programmes, talking with a variety of professionals, non-professionals and basically keeping their eyes and ears open for possibilities. With their guidance and attentiveness, John completed high school, his last courses done in an adult school and by correspondence. They took him to the Mayo clinic for assessment and they have always credited the professionals there for finding, finally, a medication regime that seemed to work for John. To my knowledge, with some slight modifications, he is still on this combination today. My parents never gave up trying to help John in any way they could. During all of this, they involved us relatively peripherally and I suspect in many ways being busy with our own education and careers, we weren’t so interested to get more involved. However, the foundations of John’s care and the principle of how things should be in the future was communicated to us to some extent by their words but largely by their actions.

Adjusting to change

While our parents were still able, they felt that they should still look after things for John but age and illness spare no one. A number of years ago our father began showing signs of cognitive decline and our mother became his primary caregiver. Then she herself became unwell with a difficult to control cancer. She continued to want to do as much as she could for John despite all of these things and up until the last few months of her life, almost miraculously, she was able to do this. My parents had discussed with us arrangements for John and as siblings we had begun to think about what losing her would mean. Mostly though, we thought about financial/power of attorney/guardianship issues, which are tremendously important, but there are other things equally deserving of consideration:

Support for your sibling with autism as they struggle to deal with illness, aging and death. Seeing your mother or father very ill is not an easy thing for anyone and no less so for an individual with autism. How they come to terms with this and the grieving process may be different or the same but no less acute or deserving of a thoughtful, sympathetic and empathic approach. John and our family have been extremely fortunate to have the support of the Woodview Manor community.

Understand yourself in the context of your family. Taking on or feeling responsible for tasks that you don’t feel comfortable with might not go well in the long run. Up front, open communication about how you feel about issues with your parents and other siblings will help to alleviate pressures later on when the inevitable does happen. Also keep in mind that there are many ways to provide support within a family and no family is the same so what works for one, may not for another.

Make things fit for you as much as possible. Our parents did a great deal in organizing our brother’s disability benefits, drug and dental needs. After our mother passed away we had and still do have some homework to do about understanding how these things work, but mostly it has become a matter of making them work in ways that fit our routines and lifestyles which are substantially different from our parents. We can’t be our parents to our brother or sister, nor should we try to be. But we can aim to be supportive siblings in the best way we can.

In Conclusion

At the conference the panel was asked whether it would have been helpful to have other people to talk to who also had a sibling with autism. Certainly from my point of view this would have been very useful and hopefully the sibling panel is a small beginning in this regard.  

 

 

Keywords: Adults, siblings, planning

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
5.5. A Good Life: Critical Success Factors for Adults with ASD

By: Christopher O’Connor and Patricia O’Connor 

In the next 5-10 years thousands of children with ASD will leave the school system and enter the world of adulthood. This should come to us as no surprise since the diagnosis has increased considerably in the past decade with the prevalence rate of Autism Spectrum Disorder (ASD) being 1 in 110. In Ontario, there are an estimated 100,000 individuals with ASD (Autism Ontario). The question in the minds of many parents and professionals now is how we ensure that our young adults lead a good life. The definition of a good life may vary from person to person and family to family, but most can agree that independence, meaningful relationships and employment would factor into the equation.

The following account/interview is from a middle-aged man with ASD that has been involved in life’s adult journey for some time now. It is the story of my brother and how he, with supports, has maneuvered life’s challenges in a formidable manner to experience an independent, dignified and meaningful life.

Background Information:

Christopher is 39 years old and he enjoys many different activities. His favourite foods are steak, spicy chicken wings, pizza, Chinese food and poutine and he likes to drink iced tea, Monsoon Mai Tai’s, Shirley Temples and beer. His schedule is a little different every day but usually involves sleeping in (since his job ends at midnight), seeing friends, doing household chores and taking part in some of his favourite activities: biking, fishing, swimming, computers, video games and movies. Chris loves dogs. He gets around by bike and by city bus.

Making his own choices is really important to Chris and he makes many of them every day. He decides who to spend time with and what they will do. He decides when he will do things and what food he is going to eat and how his day goes. He makes a lot of his own plans and decisions and that is the way he likes it.

Structured Schedule:

A structured schedule is necessary for all individuals leaving the school setting. Even though school may not have provided all of the skills that are necessary to undertake life’s next steps, it did provide structure. A schedule involving work, (volunteer, self-employment and/or competitive employment), community involvement, social relationships, leisure time and opportunities to reduce anxiety by being physically active are all necessary components of fulfilling lives. On many occasions, individuals across the spectrum transition from school into their parents’ homes full time. This can be devastating for all involved since apathy, malaise and idleness lead to depression and hopelessness. Once these patterns become the “new normal” they are difficult to change. It is essential that our young adults move into an active level of involvement outside the household with increasing steps towards independence. Chris has had this experience and it has been extremely beneficial.

Social Life:

Chris has 4 or 5 friends who he sees often. All of these friends have some challenges but they all live by themselves, in a supported living situation, except for two people who live with their parents. He sees one couple twice a week for supper and gets together with the others for biking, “hanging out”, going to the mall or going out for supper. He has known most of his friends since he was younger and he thinks friends are supposed to stick together, do things together and do favours for one another. He has had lots of disagreements with friends and he was not quite sure how they got resolved but they keep getting together.

He has had some bad experiences with people that didn’t turn out to be friends. Sometimes they borrowed money or his possessions and didn’t return them. He doesn’t talk to those people any more.

Housing:

Chris has lived in 3 different places in his adult years. He has lived at home, at his “old place” for 13 years and in the place he is in now. He really liked his previous place since it was in a house and had lots of room: a kitchen, living room, bedroom, bathroom and a large porch. The landlord was good and Chris helped around the house with shoveling, garbage and odd jobs. The rent was cheap and he could walk to the grocery store and other stores, too. The new place is a bachelor apartment in a basement and is OK. It is farther from everything and really small but it is comfortable. He has had to store most of his belongings and would like to get them back. He does not want to move again because the last move was stressful but in the future he would like to get another place that is bigger and closer to work. He has been on a waiting list for subsidized housing for 4 years.

Community Involvement:

Chris has been involved in Special Olympics for most of his adult life. His main sport is Nordic skiing. He has competed at national and international levels and won two gold and two silvers in Saskatoon in 1992 and gold, silver, and bronze in Austria in 1993. He began skiing at the age of 6 and continues to ski weekly throughout the winter months. He loves to do it on his own and enjoys watching for woodpeckers and animal tracks. He also curls every Sunday during the winter months and sometimes the team competes out of town. Track and field, swimming and power lifting are other sports that he has been involved in.

Anxiety Reduction:

Medication has been part of his life for many years but the best things Chris does to keep calm are exercise, listening to music, seeing friends and sometimes being alone. He occasionally rides his bike for long distances. He is not getting any counseling at this point, but has in the past. He thinks that it is really important to keep a positive attitude.

When Chris was younger he had many sensory issues related to all modalities: sight, sound, touch and smell/taste. Malls presented huge issues with loud sounds, too many people and wide-open spaces. At 39, many of these issues have diminished but loud noises (such as babies crying) are difficult to cope with so he tries to ignore them and get away from the source of the noise. If he is at work, he leaves the room.

Employment:

Chris has had many jobs since high school. These included: a convenience store where he stocked shelves; a restaurant where he washed dishes and cleaned; a police station where he worked as a janitor and was treated well by other staff; A truck stop where he washed dishes (he found this job stressful because it was very busy, never-ending and the people were sometimes hard to deal with); a pizza shop where he cleaned and made pizza dough and assembled boxes plus got a free meal every day and at a retirement home where he worked as a janitor and found the residents and staff friendly. Chris found all of these jobs through Community Living.

Currently Chris works as a janitor at the bus station. This is a regular job paying minimum wage. There are positive and negative things about the job. Some of the people can be very rude and he has to deal with mentally ill people and people who are drunk and stay there a long time. He knows some of them now and they are getting better but sometimes he has to get a bus driver/supervisor to help him out because he states that, “he is not great at dealing with the public issues”. Most of the bus drivers are nice and helpful except one that he has decided to totally ignore. Sometimes he has to clean up big messes as part of the job. There are lots of good things about this job. He gets to work on his own and he really likes that. He gets paid well and works part time. At a later date he may want to work full time, but for now part time work is OK. He likes his boss because she gives warnings about changes in the schedule and gives him really good holidays.

At every job, Supported Employment, through the Community Living Association has been available to help. The workers change frequently but if Chris has a work related problem he can go to them for assistance. Over the years, Chris has had some challenges in the workplace, but he has learned many social and communication skills. He is a hard worker, reliable and has a very low absenteeism rate all of which have contributed to his success. Other positive characteristics that Chris exhibits are determination, adaptability – now, courteousness, a friendly nature, honesty, optimism and sincerity.

Supports:

Although Chris leads a very independent life, he has sometimes needed and received help from other people in a variety of ways. Mom helps him with lots of different issues that have happened over the years. She lives in the same town and Chris sees her every Sunday for supper. Chris likes to go on vacations to visit his sisters and brother and his niece and nephews. He texts them on a very regular basis. He goes to the cottage with his mom for two weeks in July and in August every year. Supported Independent Living (SIL) Program helps when finances, forms or household activities are causing difficulty. They come to the apartment once weekly to discuss and help him solve problems. Friends and people he knows will provide support if he asks for help.

Hopes and Dreams:

What are your dreams for the future?

“Maybe I’d like a full time job and a better apartment. I’d like to get a job fixing computers or something to do with computers in a computer store. I might want to get a scooter. I want to try scuba diving and see all the different kinds of fish, go swimming in the ocean and travel to some tropical place.”

Conclusions:

After talking to Chris about his life it became evident that all human beings have the same needs whether or not we have ASD. We have a need to contribute to society, have friends and have fun. We have the need to be as independent as we possibly can and that makes us feel good about ourselves. The components of a good life for individuals with ASD are not difficult to understand but the supports and guidance required to ensure that this occurs is the key to success. These supports are often not available. As government supports diminish, and the number of individuals with ASD entering adulthood continues to increase, all sectors of society must find innovative ways to support this vulnerable population during this challenging transition. This will ensure that these capable individuals have opportunities to demonstrate their skills and live an independent, dignified and meaningful life.

“The best part of life is that I don’t have to worry about anyone but myself. I do what I want, when I want to and the best thing of all is that I am very independent.” Christopher O’Connor

 

Keywords: Adults; Job Skills; Siblings; Housing; Leisure; Strengths; Anxiety

 

Pat O’Connor has been involved in the field of ASD almost all of her life. She is currently focusing on consultation, coaching, advocacy, training and program development for young adults with Asperger Syndrome transitioning into life. Her company is Integrated Autism Consulting and she can be reached at patriciaoconnor@rogers.com.

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
5.6. Tips for Coping With, and, Enjoying Your Kids

From a Mom with 5 Children on the Autism Spectrum

by Sylvie Charron

Sylvie, you seem uniquely qualified to address this topic. Please tell us a little about your family.

I have been blessed with beautiful, healthy children. My oldest daughter was born in 1998. She came as a surprise as I was still in university. She was full-term but needed some help coming out so she was born by caesarian-section. My second daughter was born 2 years later in 2000. She came to us at 40 weeks and had trouble breathing on her own at first. In 2001, at 18 weeks of pregnancy, I had a miscarriage. Fortunately I was blessed with another pregnancy soon after, so in 2002, I had my first son. He was born healthy but also by caesarian-section. In 2005, our 4th child, another son, was also born healthy although quite small.

In the spring of 2013 I had four children all of whom are on the autism spectrum ranging from mild to moderate. I felt very blessed.

In the summer of 2013 my husband and I decided to adopt another child on the spectrum. He came to us just before Christmas; a beautiful baby boy of 23 months. He didn’t have an official autism diagnosis but showed obvious signs. He currently receives a lot of therapy for his developmental delays. Now here we are with five wonderful children.

How would you describe your attitude or approach to raising five children on the autism spectrum?

Each has their own unique gifts and challenges and I wouldn’t change any of it for the world. Mostly, I see their ASD as a gift and, as their mother I make it my job to help them develop their gifts. It is not always easy for them or those around them. Sometimes that gift might look more like a curse but with a little time, some perseverance and a lot of patience, their gifts flourish.

The one thing I’ve never done for my children is to try to make them “normal”. For sure I want them to fit in and be happy, but as themselves. I always try to encourage their special interests by showing an interest in it myself. I also encourage all my children to show an interest in each other’s special interests. Usually, we all enjoy each other’s interests and develop a taste for a variety of things along the way.

The biggest rule in my home is respect. I taught them what it means to have respect for one another from a very young age and we are always working on it. By being respectful, they know that they can’t hurt each other physically or verbally. They also know each other’s sensitivities and quirks and so they work really hard to be mindful of them.

What are some other strategies that you have found helpful?

Something I’ve done in terms of their “stimming” (repetitive) behaviours is find ways to fill their need in a more acceptable way. For example, my son likes to rock himself and although this isn’t a “bad” behaviour in itself, my other children thought it made him look weird. To help him with this behaviour, we purchased a swing, which we put up in the house to help him get this sensory need met. It was an easy solution that worked immediately. Another example is for my two younger sons who like to spin themselves in circles. We found a large lazy Susan that we put in the middle of our living room. They love to lie on it to be spun or they sit and spin themselves. Again, this is an easy solution with immediate results.

I also try not to burden my children with unnecessary stressors. By that I mean no extra-curricular activities when they are young. Going to school is stress enough for them. They need down time to focus on their own needs and interests.

With children on the spectrum, routine and predictability are very important. It makes them feel more secure and calm. They also like to know ahead of time what to expect in order to be prepared mentally. In my home, I always tell the children ahead of time that a certain event will be happening. For example, even for mealtime I warn them at least 5 minutes in advance. When we need to go out for any reason I tell them at least a day in advance, and then provide reminders on the day of the outing. Whether it is a trip to the grocery store, the doctor or a museum, they all get advance notice. I find that the older a child gets, the more warning time he or she needs.

Can you explain a little more about how you do this?

In my house, there are calendars everywhere. The children all have their own where they mark down all their activities. They also mark their achievements, such as having a dry pull-up in the morning. We also have a family calendar posted for everyone to clearly see. It is a good visual strategy with the weekends clearly marked in a different colour. All events and outings are posted on this calendar. Also, after a day has passed, we cross it out. This helps with understanding the passage of time.

Something else I’ve always done with my children is to give them a run down of what is to be expected during a specific outing. For smaller outings, like going to church or grocery shopping, I usually do this while in our vehicle once we reach our destination. I make sure they understand before leaving the car. For a bigger outing, like a trip to another city, I go over it at least a month in advance, sometimes verbally, and sometimes with pictures. It all depends on the outing and which child I’m dealing with.

Limiting my children’s “screen time” is another strategy I find helpful. Their limits are clear and consistent so there is no room for confusion. Children on the spectrum seem to like logic and reason, so I explained to my children why there is a need for these limits. They might not necessarily be happy with the limits but they accept them.

Have you ever tried adjusting their diet?

I find it extremely helpful (and it makes our lives less stressful) to limit all refined sugars in our diet. When all my children were younger, we went completely refined-sugar free. It was very difficult at first but once I knew how to live without it, things changed for the better. We saw a noticeable improvement in the children. There was a dramatic decrease in meltdowns and aggressive behaviours. They seemed more in control of their actions and were more pleasant to be around. After approximately six years of being refined-sugar free, we started to reintroduce it slowly. The children are now a little older, except for our new son, and they seem to be able to handle it better.

Other things you have found helpful?

The children all have their own little place to hide or to escape to when they need time by themselves. My daughter has a little pop-up tent in her bedroom. My son likes to go in his closet. No matter where their spot is, I encourage it. When we go out of town, whether we are staying with relatives or in a hotel, I always try to find a couple of quiet spots for them to use if they need to. This helps everyone to stay calmer.

I also try to be prepared for the unexpected whenever I leave the house. I make sure to bring enough snacks and drinks, as well as some fidget toys. I’d rather be safe than sorry.

Where do you get support and help?

As for the role my husband plays in all this, well he is my friend. He lends an ear when I need to talk or vent. He loves his children but doesn't play a big role in the child rearing. When the children were smaller he was often away on business. Now he doesn't travel as much but he isn't around much to help out. He is always happy to do what I ask him to do but basically the children are my responsibility. This is fine with me because I was born with enough patience for both of us. I am always doing research to learn to be a better mother and better person. I attend workshops and courses to learn from and share ideas with other parents. My husband provides for us and supports me though it all.

Do you have some final words?

Finally, the last bit of advice I have is to enjoy your kids. You might be surprised at what you can learn from them. Just don’t sweat the small stuff!

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
5.7. How do I explain autism to a sibling?

By Maureen Bennie, Autism Awareness Centre Inc., autismawarenesscenter.com

Siblings of children with autism play a unique role in the family. Important as that is, they are often the ones who get less attention, alone time with parents, and adjustments to make in their lives due to the demands of the child with autism. The key to family harmony is fostering an understanding of autism and the importance of the role a sibling plays in a child who has autism.

How to explain autism to a sibling is a question I am asked frequently. The answer to this depends on the child’s age and explanations will need to change as the child ages. Jean Piaget, a Swiss developmental psychologist, identified 3 stages in the development of concepts:

1. The Preoperational Stage – until age 7. Children do not use logic to formulate their thoughts but draw on their own experience to form an idea. Telling them theoretical information may not affect the concept they have formed in their mind.

2. Concrete Operational Stage – ages 7 – 11. Concepts still grow from direct experience, but varied experiences may be linked together because logical thinking is emerging. They can see they are variations on a basic concept.

3. Formal Operational Stage – 12 years and up. The child thinks more like an adult and they have the ability to use abstract reasoning. They can think about hypothetical events and information that they have not directly experienced or perceived.

Keep these stages in mind when discussing autism. Too often, we want to introduce information about autism to young children before they can process the information in a meaningful way. Here are some tips for telling your child about autism:

Early Childhood

 

  • You can’t catch autism.
  • It’s nobody’s fault.
  • He hasn’t learned how to talk yet.
  • I will keep you safe.

 

I think a good place to start an introduction to autism is through books about differences like Todd Parr’s It’s Okay to Be Different or Special People, Special Ways.

Middle Childhood

 

  • Autism occurs before birth or when they are a baby.
  • It is a problem in the brain.
  • It causes problems with talking, playing, and understanding other people’s feelings.
  • People with autism can learn but it takes a lot of work.
  • If your brother/sister is aggressive, it is my job to help, not yours.
  • You can help by playing and showing how to do things.
  • If your friends have questions, I can help you figure out what to say.

 

Good books for middle childhood are All About My Brother, Can I Tell You About Asperger Syndrome,This is Asperger Syndrome, Can I Tell You About Autism, My Best Friend Will, and Everybody’s Different.

The autism discussion should be an on-going one and not a one-time big discussion. Because of the 3 stages mentioned earlier, the sibling’s view of autism will be changing and new questions will emerge. I like these tips for autism discussions from the Siblings of Children with Autism:

 

  • Hear your child out before correcting errors.
  • Stay neutral and try not to judge your child’s answers.
  • Praise your child for sharing feelings and acknowledge that you understand where misconceptions about autism may have come from.
  • You want your child to feel comfortable speaking with you again.
  • Be prepared for intense emotions ranging from sympathy to guilt or anger. Try to remain neutral as a parent. Your child is allowed to have these feelings. Open communication will encourage more positive emotions.
Here is an idea on how to get the autism conversation started. “I realize we have not talked about John’s disability. Since he’s important to both of us, I thought we should learn about each others thoughts and feelings. Do you know what his disability is called?”

 

A thought about the adolescent years – the challenge will not be explaining autism because teens will do much of their own reading and research through the internet. What influences their understanding of autism is their own feelings around it. The challenge for parents will be helping the teenager understand what autism means for himself, his sibling, and dealing with the feelings that knowledge brings. One book I like for teens that is a positive read is Asperger’s Syndrome and Self-Esteem which is about historical figures who have been on the autism spectrum.

A final thought on this topic – if family difficulties continue to be a problem, consider family counseling. The sibling may require one on one counseling as well to help them through their struggles. Also look for sibling workshops.

5.8. Five Things To Do For a Family Dealing With Autism

By: Jonathan Alderson, Autism treatment specialist, founder/director Intensive Multi-Treatment Intervention, Harvard grad and author of the book Challenging the Myths of Autism

This article first appeared on HuffPost Living Canada online on 06/24/2014

 Your nephew, grandchild or work colleague's son received a diagnosis of autism and now you feel uncomfortable talking with the family about it? Or maybe your neighbour's daughter is autistic and you aren't sure what exactly you could do to help.

Believe it or not, it's fairly common for family and close friends to pull away. Whether because of discomfort or simply not knowing what to say or do, many parents caring for a child with autism feel isolated from people they once thought cared. Ironically, friends and family explain they are acting on their best intentions to "give the family space" and to "not impose" because the parents seem so busy.

You're probably right that they're completely consumed by the world of autism, but they still want to know that you're there. Forget the formalities. Reach out, communicate, and support them. An email, a voice message, or a text to say "I'm here and sending you love," even if unanswered, can be supportive in and of itself, more than you might ever imagine.

Keep in mind that on the other side of your voice message or text, these parents face incredible demands within a society that isn't designed for special needs. They weather inconsolable tantrums; they fight school system inflexibility, and act as interpreters to decipher their autistic child's language delay. It's extremely hard to find babysitters who can manage the different autistic behaviors. Toddler-parent-drop-in centers are often too loud for their sensory disordered children. Along with routine parent duties like changing diapers and cleaning up the daily breakfast tornado that hits the kitchen, many parents of children with autism also have to cope with sleep disorders, bed wetting into the teen years, and cooking special diet meals. This becomes their life. On top of earning a living, they coordinate intensive therapies that can run up to seven days a week. They pay for many of these therapies out-of-pocket which adds financial strain. It's exhausting.

But you can make a positive difference. Understanding more about their situation is a good first step. Don't be shy to ask the parents directly to explain more about the diagnosis and what kinds of challenges and triumphs they are dealing with. It's better to ask than to assume or to ignore. Online resources abound and I also recommend my recent book Challenging the Myths of Autism (Harper Collins) specifically because it provides research that cuts through negative stereotypes to offer a practical and hopeful reframing of this misunderstood disorder.

Over the past two decades I've had the honour to educate and train hundreds of parents of children diagnosed with autism. I think of them as all-star parents. There are hundreds of thousands who care for children with special needs around the world and at least a few in your very own neighborhood; each family has different resources, varying levels of support, and some are in desperate situations.

Here are some concrete actions that neighbours, friends, and family can confidently take to give these parents a boost of support.

5 Ways to Help and Be Supportive

1. Listen 

Much of their time with other adults is spent explaining about autism and their child. There is almost never time to chat about the latest movies, fashion, and other frivolous news. More importantly, with so much focus on their child, there is often no space for them to talk about what's going on for themselves. Spend time just listening, without an agenda, without giving advice, and without feeling sorry for them. Create space for them to let their thoughts and feelings out and to chat about whatever they need to express.

2. Let Them Sleep

Years and years of broken sleep because of their child's bed wetting, sleep disorders, and hyper-activity can have a serious negative effect on physical and emotional health. Offer to babysit for an hour or two at a time so they can just nap. Turn the TV down, close the bedroom door, and anything else you can do to create an environment for the parents to have a restful sleep.

3. Don't Judge

Have you ever thought to yourself that a parent you know should stop giving her child certain foods or that she should not let her child cry for so long? Like any parent, the moms and dads of children with autism are trying to do their best with a very challenging situation that they themselves are still learning about. They are doing their best to allocate limited resources. Everyone has an opinion looking from the outside in. These parents have almost always done endless hours of research and consulted professionals. Better to bite your tongue and give them the benefit of the doubt.

4. Be a "Typical" Friend

Over the years I have heard from so many moms that as soon as their child received a diagnosis many of their friends disappeared. Friends who used to call several times a week just to check in and to invite them for a movie or to a party stop calling. Friends assume these parents are overwhelmed, emotional, and don't want to be bothered. Even long-time friends can feel uncomfortable not knowing what to do or say about a child with autism. Instead of retreating, continue being that old familiar friend. A glass of wine with a friend and regular check-in phone calls can be just the right trick to balance the intensity of raising an autistic child. It's nice for a parent to know you are there to help when times get rough. But don't wait for rough times. Simply be a regular presence of friendship in their lives. If they need more or want less, trust that they'll tell you.

5. Be a Cheerleader for Even Small Steps

Cheerleaders encourage their team throughout the game and cheer even louder when the team scores points. Put your advice for an autistic child's parents aside and instead pick a project they are working on for their child and become the world's most enthusiastic cheerleader. It is reinforcing to be acknowledged for accomplishing a goal, but for many parents of children with autism the steps toward goals are mini and slow. Take the time to let them know that you notice their parenting efforts and the positive development you see in their child. In other words, be a cheerleader of the process not just the end goal. Call them or write a note and share a specific example of what they should feel good about. Maybe you notice their son is talking a little more or you notice their daughter is more attentive and listens better. Whatever the accomplishment, it can be reason to celebrate!

5.9. Making the Most of the Holidays for Your Family and Your Son/Daughter on the Autism Spectrum

Contributed by Cathy Pratt, Ph.D., BCBA-D, Director, Rachel Hopf, M.A., Graduate Assistant, Kelsey Larriba-Quest, M.Ed., Graduate Assistant, Indiana Resource Center for Autism

While many happily anticipate the coming holiday season, families of sons/daughters on the autism spectrum also understand the special challenges that may occur when schedules are disrupted and routines broken. Our hope is that by following these few helpful tips, families may lessen the stress and anxiety created by the holiday season and make it a more enjoyable experience for everyone involved. The following tips were developed with input from the National Autism Society, the Autism Society of Indiana, Riley Child Development Center, Easter Seals Crossroads, LOGAN Autism Learning Centers, and the Indiana Autism Leadership Network and are updated annually.

1. Preparation is crucial for most individuals. At the same time, it is important to determine how much preparation a specific person may need. For example, if your son or daughter has a tendency to become anxious when anticipating an event that is to occur in the future, you may want to adjust how many days in advance you prepare him or her. Preparation can occur in various ways by using a calendar and marking the date of holiday events, or by creating a social story that highlights what will happen at a given event.

2. Having decorations around the house may be disruptive for some. It may be helpful to revisit pictures from previous holidays that show decorations in the house. If such a book does not exist, use this holiday season to create a picture book. For some, it may also be helpful to take them shopping with you for holiday decorations so that they are engaged in the process. Or involve them in the process of decorating the house. And once holiday decorations have been put up, you may need to create rules about those that can be touched and those that cannot be touched. Be direct, specific, and consistent. We also realize that with some individuals, decorations may not be feasible. Create a visual schedule for decorating and other holiday events. See examples of numerous visual supports on our website at: https://www.iidc.indiana.edu/pages/visualsupports.

3. If your child has difficulty with change, you may want to gradually decorate the house. For example, on the first day put up the Christmas tree. On the second day, decorate the tree, and so on. And again, engage them as much as possible in this process. It may be helpful to develop a visual schedule or calendar that shows what will be done on each day. At the same time, it may also be helpful to inform them of the process for removing decorations. This process may be disruptive for some individuals as well.

4. If your child begins to obsess about a particular gift or toy they want, it may help to be specific and direct about the number of times a child can mention the toy. One suggestion is to give your child 5 poker chips. They are allowed to exchange one poker chip for 5 minutes of talking about the desired gift. Also, if you have no intention of purchasing a specific toy, it serves no purpose to tell the child that maybe they will get the gift. This will only lead to problems in the future. Always be clear and concrete about your intentions.

5. You and your child can make a list of what he or she wants for the holiday. The list could include the website where the gift can be purchased, the price, and other critical information. This list should be organized with a small box at the end or beginning of each item. The list can be shared with family members or friends who want to “register” to purchase gifts by putting their initials in the box.

6. Teach your child how to leave a situation and/or how to access support when an event becomes overwhelming. For example, if you are having visitors, have a safe/calm space set aside for the individual with their favourite items/toys available. The individual should be taught ahead of time that they should go to their space when feeling overwhelmed. Practice this strategy often throughout the year and when the individual is calm. This self-management tool will serve the individual into adulthood. For children who are not at that level of self-management, develop a signal or cue for them to show when they are getting anxious and prompt them to use the space. For children with more significant challenges, practice using this space in a calm manner at various times prior to your guest’s arrival. Take the child into the room and engage them in calming activities (e.g., play soft music, rub his/her back, turn down the lights, etc.). Then when you notice the child becoming anxious, calmly remove him/her from the anxiety-provoking setting immediately and take him/her into the calming environment. Make sure others respect your child’s need for space and do not intrude.

7. Teaching your child how to use a break card or some other signal by modeling or directly teaching this approach in advance may help your child communicate the need to leave when situations become overwhelming.

8. If you are traveling for the holidays, make sure you have the child’s favourite foods, books, or toys available. Having familiar items readily available can help to calm stressful situations. Also prepare them via social stories or other communication systems for any unexpected delays in travel. If your son/daughter is flying for the first time, it may be helpful to bring your child to the airport in advance and to help them become accustomed to airports and planes. Use social stories and pictures to rehearse what will happen when boarding and flying.

9. Know your child and how much noise and activity they can tolerate. If you detect that a situation may be becoming overwhelming, help your child find a quiet area in which to regroup. And there may be some situations that you simply avoid (e.g., crowded shopping malls the day after Thanksgiving (United-States) or Boxing Day (Canada). Again, a break card may be helpful.

10. Prepare a photo album in advance of the relatives and other guests who will be visiting during the holidays. Allow the child access to these photos at all times and also go through the photo album with your child while talking briefly about each family member.

11. In preparation for the holiday season, you might want to practice opening gifts, taking turns and waiting for others, or giving gifts to others. Use a visual turn taking card to help with this process. Role-play scenarios with your child in preparation for them getting a gift they do not want. Talk through this process to avoid embarrassing moments with family members. The New Social Story Book by Carol Gray (2010) contains a number of social stories on gifts.

12. If planning to attend a religious service, pre-exposure to the environment can be very beneficial for your child. When previewing the environment, practice routines that your child will likely encounter, such as kneeling, taking shoes off, sitting on benches, singing songs or praying. Religious services also mean having to sit for an extended period of time. It may be helpful to provide your child with a picture or written schedule of the program of events that you or your child can check off after each event is done. Fidgets and other quiet toys may be helpful to bring along to the service.

13. You might also choose to practice certain religious rituals throughout the holiday season. Work with a speech language pathologist or other professionals to construct pages of vocabulary or topic boards that relate to the holidays and family traditions.

14. It may also be helpful to prepare family members for strategies to use to minimize anxiety or behavioral incidents and to enhance participation. Help them to understand if your son/daughter prefers to be hugged or not, needs calm discussions, or provide other suggestions that will facilitate a smoother holiday season. If your child becomes upset, it might also be helpful to coach others to remain calm and neutral in an effort to minimize behavioral outbursts.

15. If your family member is on a special diet, make sure there is food available that they can eat. And even if they are not on a special diet, be cautious of the amount of sugar consumed.

16. Since holidays may place extra stress on a child, this may not be the time to introduce them to new demands. Your son or daughter may need the comfort of their routines. For example, try to maintain a sleep, meal, and other important routines.

17. Above all, know your child. Know how much noise and other sensory input they can take. Know their level of anxiety and the amount of preparation it may take. Know their fears, and know those things that will make the season more enjoyable for them.

18. During dinner, it may be a challenge for your child to eat at the same table as the entire family. Have options available. Realizing that the holidays are stressful, make sure that some of your son/daughter’s favourite foods are available during dinner. Again, this may not be the time to force them to try new foods.

19. If feasible, hire a respite provider or babysitter to be available during a section of the holidays so that other family members may be able to enjoy the day.

20. In preparation for the family holiday event, rehearse conversation topics in advance with your son/daughter. Develop a signal to help them understand when they should shift topics. Make a list of acceptable topics and a list of those they should not discuss. Practice this list in advance. Equally important is to prompt family members about topics of discussion that they can engage your son/daughter in and those they should avoid.

21. Holiday shopping may be stressful for your child with ASD when stores are crowded and noisy. You may enlist your child to be in charge of the list of presents or groceries, and have them help you find the items and check them off. As a reward, the last item on the list can be a preferred item, such as a candy bar from the checkout aisle or their favourite food from the mall food court.

22. Holidays are a time for the whole family to enjoy, but it can be tricky to keep everyone happy. It is important to make sure that siblings are aware of how the holidays can be stressful for their brother or sister with autism. Parents can remind their child of their sibling’s sensory issues, communication difficulties, or frustration tolerance and discuss with them how they can avoid potential triggers. While much of parents’ attention will be focused on having a successful holiday for their child with autism, parents can ask siblings about their favourite holiday traditions to ensure that these activities are special for them.

23. Adults with an ASD may want to purchase gifts for family members, friends, and co-workers. Some individuals may need guidance in determining preferences of their family/friends in order to decide what would be an appropriate gift. These individuals may also need help budgeting for gifts and planning out the steps to purchase the gift, wrap it, and deliver it appropriately.

24. Parties are frequent during the holiday season and involve many social (and unwritten) rules. As such, it may be important for adults with an ASD to review social etiquette when invited to another person’s home. For instance, perhaps he or she will need to check to see if they should remove their shoes at the door, or if they need to bring an appetizer, dessert, or any other small gift for the hostess. If the party is at work, some conversational topics might be off limits, and the expected dress code may be more formal. Therefore, it may also be beneficial to review what is appropriate for discussion or attire across different social settings.

25. Adults with an ASD may have certain food sensitivities. If so, it may be important for these individuals to remind families or coworkers what foods they find tolerable. In situations where these individuals have no control over the menu, it will be important to plan ahead by either eating before a social gathering or packing a snack.

Most important, remember to relax and not get unduly stressed. Your son/daughter may in all likelihood react to that stress. And most of all have a wonderful holiday season!


Hopf, R., Larriba-Quest, K., & Pratt, C. (2016). Making the most of the holidays for your family and your son/daughter on the autism spectrum. The Reporter, 21 (9). Retrieved from https://www.iidc.indiana.edu/pages/making-the-most-of-the-holidays-for-your-family-and-your-son-daughter.

5.10. A Perfect Square that Cannot be Broken

By Bill Gingras

When I met my wife Anne 26 years ago, it was an occasion that really should not have led to us being together all these years. I am 6 years older than she, I liked to partake in activities with alcohol, had a tremendous social life, large enough network of friends…all things Anne did not seem to have or do. And yet, it wasn’t long before we became an item, and both of our lives changed. I calmed down, she opened up a bit. We met, if not in the middle, then close enough not to matter.

I look back at the last paragraph, and knowing all the things I know now, I realize there were signs in abundance that I was in for a ride, had I the wit to know it. Autism, ASD, Asperger’s, all were words not even on the horizon of my mind. For me, I was with someone quirky, someone who draws outside the lines in life, even though on paper she could not do so. It wasn’t long until, as a couple, we realized our social life was going to change. When together, Anne and I craved our alone time, avoiding family functions when it was possible. But to us, this was typical, right?

We married in July 1992, and one year later had our first son, Alexandre. What a joy!! From the age of 10 I had always dreamed of being a father. A pirate, drag-racing, karate champion and secret agent father, sure...but ‘dad’ nonetheless. And I was living the dream. Having this child changed everything for us. Our focus was on him, and we became secondary.

And like most parents I know that have had to face up to the unavoidable initial terror and confusion that an Autism diagnosis brings with it. We stood like deer caught in the headlights of life.

Thankfully, Anne is an educator. Without her training, instinct, courage, and tenacity, there is no way our son Alex would have come as far as he has. The countless hours of therapy, of ‘good cop/ bad cop’ routines by Anne and me, she doing the dirty work on the floor day in and day out, performing IBI when there was no such thing, I being the guy who came home and tagged into the ring, Anne collapsing in fatigue while I got to do all the fun stuff, pretty much oblivious to what went on most days.

We were fortunate to have awesome schooling for Alex. He was educated in a caring, loving environment, one which worked effectively with us, that gave him the chance to grow, that brought him socially out of his shell. Enough so to become class president for grade 8. He inspired others with ASD to do things they were told they couldn’t. ‘If Alex can, we can!’ This continued through High School, then now College, a place we surely never dreamed he would go, given the severity of his first 6 years.

His brother Mackie, born 5 years later, was tremendously important in this catharsis in Alex. Mackie helped Alex retrace the steps of babyhood, we think helping rewire many a path and moving him along at a quicker pace. He has been an unwavering supporter of Alex, and we are very thankful to have him.

Lost in all this….is Anne. She is drawn to work with children with Autism. It is her gift. She has a patience for these special, wonderful people. And it is because of this and the contacts she has made in the Autism community that led her to get the best gift for herself: her official diagnosis of Asperger’s Syndrome.

I am not sure how much of a difference it would have made in our lives had we known sooner, although I am sure it would have been different. Not necessarily better. It took her 19 years of marriage to get this diagnosis, and on that day, it’s like all the pegs in our lives that did not quite fit in their holes shifted ever so slightly and dropped into place. We had answers to unasked questions. We now had the ‘why’ to many of the ‘wtf’s?’.

Four years have passed since this fateful day. Our lives are more complete. We give each other space, and I really have come to understand her in a way I may never have. Her anxieties, her social hindrances, her differences are no longer so. Because we now live our lives knowing what we know, we flow with the Universe instead of against it. Like-minded people in our lives have certainly helped the process, and helping others has kept us grounded.

We no longer fight for Autism Awareness. We now push for Autism Acceptance. My family, two with autism, two without, form a perfect square that cannot be broken. I wish this kind of acceptance on everyone!

6. 4 Skill Development


6.1. The Emotional Toolbox

Adapted from Attwood, T. (2008). The Complete Guide to Asperger’s Syndrome. Jessica Kingsley Publishers, London, UK.

Tony Attwood, a well-known psychologist in the field of Autism Spectrum Disorders (ASD), conceptualized the Emotional Toolbox. It represents a collection of tools (strategies) designed to help people deal with negative emotions. The Emotional Toolbox for individuals with an ASD is designed to increase the number of strategies available to prevent and manage negative emotions such as anxiety, anger and sadness. The Emotional Toolbox aims to do two things: reduce the intensity of the emotions being experienced and help the person understand the role thoughts play when one is faced with anxiety-producing situations. There are eight types of tools, each of which is defined below.

Physical Tools: physical activities that quickly release emotional energy

  • Jump on a trampoline, on the spot or on a big ball
  • Go on the swing
  • Take a walk, go for a run or a bike ride, dance, swim
  • Play sports or do exercises
  • Do house work
  • Watch a comedy (to laugh)

Relaxation Tools: slowly release emotional energy and help to calm and lower the heart rate

  • Retreat to a quiet place
  • Do progressive muscle relaxation (tension-release)
  • Draw or paint
  • Do crafts, read, listen to music
  • Rock gently
  • Access fidget items (e.g. stress ball, stones, soft objects, worry beads)
  • Organize personal belongings or do relaxing chores
  • Watch a television program, favourite film, look at a photo album
  • Listen to a recorded message from an important person in one’s life (parent, grand-parent)
  • Ask for a break and incorporate breaks into the day

Social Tools: help manage emotions and change moods through interaction with a person or an animal 

  • Go see a person you trust
  • Talk to a friend, teacher, parent, grand-parent, counselor or support person
  • Show altruism – help others or do something for someone
  • Volunteer (help classmates, students in another classroom, in the library or office, at a local pet store)
  • Spend time with a pet

Thinking Tools: capitalize on intellectual strengths to teach how to change thinking and manage emotions

  • Replace poisonous thoughts with antidotes (positive self-talk)
  • Create a mantra (positive and calming statement)
  • Imagine a calm, positive or happy scene or area
  • Imagine a positive result through visualization or Cognitive Picture Rehearsal
  • Use logic and facts to put the situation in perspective
  • Engage in an academic task that helps one calm down and feel successful
  • Keep an object that symbolizes calm
  • Create a “happy book/album” of successes, fun activities, talents and strengths
  • Peruse “self-help” information
  • Refer to strategies on the 3-point or 5-point scales, emotional thermometer, etc.

Special Interest Tools: provide pleasure, relaxation and serve as an ″off switch”

  • Engage in a special interest for a specific amount of time (make time more concrete with a timer, watch, etc.)
  • Incorporate special interests into the schedule
  • Incorporate special interests or talents into the curriculum, employment or volunteer work

 Medication: used to treat mood disorders

  • Work collaboratively with health care professionals
  • Follow the physician’s instructions
  • Record any side effects (positive and negative) and discuss with the physician
  • Understand that medication is a tool but that it should not be the only tool in the toolbox

 Other Tools: reduce anxiety or effects of negative emotions but do not belong in a specific category

  • Read biographies and autobiographies of people with an Autism Spectrum Disorder (ASD)
  • Develop self-advocacy skills
  • Educate others about strengths, needs and accommodations necessary for success
  • Self-reinforce for using new tools
  • Identify sensory tools that allow avoidance of certain negative sensory stimuli or minimize their effects
Inappropriate Tools: tools which are harmful or counter-productive; it is crucial to identify inappropriate tools so that they may be replaced with more appropriate tools 
  • Substance abuse
  • Prescription or illicit drugs
  • Alcohol
  • Self-harm or suicidal ideation
  • Violence, aggression and revenge
  • Promiscuous behaviour

It is imperative to start filling the Emotional Toolbox at a young age. Learning is a lifelong process and it is important to regularly add tools to the toolbox, examine the tools to make sure they are still useful and remove harmful tools or any tools that negatively impact the well being of the person with an Autism Spectrum Disorder. Have an open-mind and discover the limitless possibilities for tools that can be added to the Emotional Toolbox.


Key words: Anxiety, Emotions, Relaxation, Self-regulation

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.2. A Bird’s Eye View of Our Cooking School for Persons with Autism

By Penny Gill  

There are 4 students in a class, each at his or her own cooking station in one large kitchen, each preparing one or more recipes different from the other students’ recipes, and each with individual support from his or her own cooking coach (or teacher). Together, all these recipes form a well-balanced meal that we share at the end of our two-hour class. During that meal the coach sits beside her student and uses some innovative techniques to foster social/communication skills.

 

Who are Our Students?

Age & Diagnosis: Our students all have a diagnosis on the spectrum of autism disorders. We give priority placement to people who are at least 18 years old, with no upper age limit. We have served students over 50, as well as those as young as 14. People under 18 years can register for a term, if no one 18 or over is available to take the spot.

Profile: Students need to be literate because we use the written word so much as an instructional tool during both the cooking portion and the eating portion of classes.

Because we work with the full range of kitchen utensils and appliances, students cannot exhibit behaviours that could put themselves or others at any risk. Anyone who might push or hit people, throw things or engage in any aggressive behaviour would not be suitable for this class. With chopping knives lying on counters, pots of boiling pasta being carried to sinks for draining, and 450 degree ovens being opened, maladaptive conduct could result in serious injury. We have had no injury of any sort since we began the cooking school in 2002 and intend to maintain that record.

No prior cooking experience is required of students, but those who have already done some cooking are welcome. Students are assigned recipes suitable to their skill level.

Both genders attend our cooking school.

Catchment Area: We do not restrict our catchment area. Some students travel long distances to attend our classes. As long as they can arrive at class on time and can bring along the utensils they will need to use during a particular class (a list of which will be supplied to them beforehand), we will not disqualify them from attending simply because they live far away from the Town of Dundas, Ontario where our classes are conducted.

What is the Registration Process? 

Inquiries about registering for the cooking school can be made by e-mail to autism@bell.net. If there is a waitlist when you first make contact with us, it is still worthwhile going through the intake process because we do offer some service to those on the waitlist. When any student registered for a term is absent from class we contact someone on the waitlist to attend that class instead. This is an excellent way for incoming students to “test the waters” and decide if this is a group activity that suits them, before committing to a full term. Potential students are also welcome to observe a class in session before starting the registration process. Observing beforehand may help them better determine if they want to participate in this program.

The formal intake process begins with a telephone conversation, usually with a parent or guardian, during which basic information about the applicant is gathered. Then a face-to-face meeting is scheduled with the applicant and a parent or guardian to review a long list of foodstuffs to find out what the applicant likes and dislikes. This enables us to schedule recipes for students to prepare that they will find appetizing when they attend our classes.

When and Where are Our Classes Held?

Classes are usually held Friday evenings from 5:30 to 7:30 PM in the Town of Dundas, Ontario. Each term is 8 weeks long. We have 3 terms per year: an autumn term, a winter term and a spring term. We do not have summer classes.

Our facility is not wheelchair accessible.

Who are Our Teachers?

All our teachers, or cooking coaches as we call them, have had prior, verifiably successful experience working with people on the spectrum of autism disorders before they start working at our cooking school. Some have full-time jobs in the autism field. We give them training specific to our cooking school as well as opportunities to attend suitable workshops about autism. We have had both genders serve as cooking coaches.

What are Our Goals and Methods? 

We teach students how to cook delicious, healthy food from scratch, using fresh produce, poultry, fish, whole grains, lean meat and so on, rather than using commercially processed ingredients. Students can use this skill wherever they live -- whether in the family home, in an independent or semi-independent living arrangement, or elsewhere.

Cooking coaches use modeling, verbal prompts, and a lot of hand-on-hand guidance to teach cooking methods. We task analyze recipes, breaking them down into tiny, manageable steps, expressed in simple language and supplemented by instructional line drawings and graphics.

Students begin with recipes that are easy to prepare. Gradually, as their capabilities expand, we have them prepare recipes that are more complicated, never confronting them with something that will be too challenging.

Although our cooking school is not a vocational program, some of our students have marketed their cooking skills in the workplace environment and have secured remunerative jobs in restaurant kitchens preparing food.

We instill sound eating habits by having our students consume a well-balanced meal at our classes week after week, and by explaining to them what elements make a particular meal healthy. We also have some interactive tools for students to use when they finish their recipe earlier than others – interactive tools that teach in a graphic, visual way about sound eating habits and that indicate the degree to which a student is meeting the standards of healthy eating.

We augment social/communication skills during both the cooking and the dining periods of our classes. During the cooking part of class, there are plenty of opportunities for interaction between students -- for example, when they are using the same ingredients in their different recipes (“Are you finished with the flour yet? Can I use it now?”), when one student finishes cooking quickly and can offer to help someone else clean up, or when a student simply inquires of others what they are each cooking that day. Cooking coaches are always on hand to give whatever support is necessary – such as modeling or prompting – so that students negotiate these interactions successfully.

At mealtime, placed in the middle of the table, is a stand with a few easy-to-read general questions (visible wherever you are seated) that are suitable to start conversations. This is the “Conversation Menu.” It gives participants ideas about ways to converse with others. The cooking coach may quietly encourage her student to use one of the questions to start talking with someone else, or may help students give more detailed answers to questions put to them and can model how to pose follow-up questions after answering someone else’s query. In other words, coaches help students develop a sense of the rhythm of a conversation, of the back-and-forth pattern necessary for chatting with others.

Different questions appear week by week in the Conversation Menu, with some reappearing from time to time, so that students will more easily remember them to use outside the cooking school. 

What Role Do Parents Play? 

Parents (or the principal caregivers) of our students are welcome to visit our classes at any time without notice. We solicit feedback throughout the term, and are genuinely eager to learn anything that will ensure our classes are an enjoyable, successful experience for our students.

Parents are not obliged to attend any classes, but at the end of every term we do ask students (sometimes with the help of parents) to complete an evaluation of our classes. We use this feedback to make any adjustments that can improve our school.

To ensure that students generalize their cooking skills outside of our cooking school kitchen, we do ask them to prepare something at home once during a term and then to tell us about how it went. This can be a recipe they’ve cooked with us, or a favourite family recipe. They can prepare it independently or can get whatever support they need at home. We give plenty of notice by what date the cooking-at- home assignment is to be completed, and parents often play an important role in encouraging students to fulfill this expectation of the course.

What Do Our Cooking Classes Cost?

Our classes are currently in the range of $37.00 per class. They are likely to rise gradually in the next few years. For anyone with Special Services at Home or Passport grants, our fees can be refunded.

Students are not required to supply any groceries, but we do ask them to bring from home the utensils they will need to prepare their recipes each week. This allows them to learn how to use the utensils they will ultimately be working with independently at home. There is a wide variation between different models of kitchen utensils, so it makes sense to learn how to use the particular implement you own. 

End-of-Term Celebration

The last class of each term has the usual cooking and eating portions of the class, but we also include a celebration of the achievements of each student that term. Each coach pays tribute to her student by presenting the student with a certificate of achievement and a gift of a new kitchen utensil. Parents and friends of students are welcome to join the party.

Assisting Others to Adapt Our Cooking School Model in Their Own Communities

Our program is easily transportable. We are happy for others to copy or adapt our program to meet their own needs and are prepared to help them do that. For this reason, we have published a cookbook, Coach in the Kitchen, with 290 pages of our task-analyzed recipes. It also includes a 26-page manual and toolkit setting out everything you need to launch and operate a cooking school like ours. Details of how to purchase the cookbook and toolkit are on our webpage at www.cookingwithautism.com.

We also offer a workshop entitled “Teaching People with Autism to Cook Really Well for Jobs, Health & Friendship”. The workshop shares tips that can be used at home, in school, in residential settings and elsewhere to ensure cooking with someone on the spectrum is as successful as possible. More details about the workshop can be found on our website as well.

 

Keywords: Cooking; job-readiness skills; adults; adolescents; communication 


 

 

SaveSave
 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.3. Simple Strategies that Work

(For more able students with Autism & Asperger Syndrome)

Smith Myles, B., Adreon, D., & Gitlitz, D. (2006). Simple Strategies That Work, helpful hints for all educators of students with Asperger Syndrome, high-functioning autism, and related disorders. Autism Asperger Publishing Co. Kansas: Shawnee Mission. With permission. 

These strategies are a good general guideline when providing support for students but they are also important to remember at home and in other settings.
  1. Operate on Asperger time
    1. Twice as much time, half as much done
    2. Modify requirements – focus on essentials
    3. Reduce or eliminate handwriting
    4. Avoid rushing
  2. Manage the environment
    1. Prepare for change
    2. Incorporate the student’s preferences
    3. Build in relaxation
    4. Provide choices
  3. Create a balanced agenda that conserves energy
    1. Monitor demands
    2. Engage the student in a familiar or calming activity early in the school day to prepare him or her for work
    3. Incorporate special interests into assignments
    4. Alternate difficult and less difficult tasks as well as interchange non-preferred and preferred activities
    5. Provide “down time” in the schedule
    6. Use calming and alerting activities
  4. Share the agenda
    1. Use visual supports to provide information and encourage independence
  5. Simplify language
    1. Watch for literalness
    2. Teach the “hidden curriculum” (unwritten social rules)
  6. Set a calm, positive tone
    1. Model acceptance
  7. Live out loud
    1. Verbalize your actions
  8. Be generous with praise
    1. Foster attribution and understanding (for the student)
  9. Listen to the words
    1. Seek and offer clarification
  10. Provide reassurance
    1. Reduce uncertainty

  

Keywords: Teaching Strategies, Asperger Syndrome, Education

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.4. Understanding Social Challenges in ASD

 

This article is an excerpt (pages 8 to 10) from a full report published by Autism Ontario in 2011: SOCIAL MATTERS: Improving Social Skills Interventions for Ontarians with ASD. Click here to view the full report: http://www.autismontario.com/Client/ASO/AO.nsf/object/SocialMatters/$file/Social+Matters.pdf


 

Autism Spectrum Disorders (ASD), also referred to as Pervasive Developmental Disorders (PDD), are believed to be caused by neurological differences in brain development with possible genetic origins. Although there is significant research exploring the neurological and genetic causation of ASD, we are still a long way from truly understanding the cause for autism symptoms in any individual.

In 1943, the term “infantile autism” was first coined by Dr. Leo Kanner to describe the most severely affected children who showed extreme social withdrawal. Today, the Diagnostic and Statistical Manual of Mental Disorders (4th Edition Revised, American Psychological Association, 2000) used by physicians and psychologists to make diagnoses includes five variants of Pervasive Developmental Disorders: Autistic Disorder, Asperger’s Disorder, Rett’s Disorder, Childhood Disintegrative Disorder and, for those whose autism symptoms do not quite meet the criteria for one of those four disorders, Pervasive Developmental Disorder – Not Otherwise Specified. (For more information on PDD diagnoses see:www.autism-society.org/about-autism/diagnosis/diagnostic-classifications.html).

For all individuals with diagnoses under the PDD umbrella there is agreement that people with ASDs share challenges in three domains:

Social Interaction
Children and adults with ASDs have difficulty interacting with other people. This will likely include challenges in initiating, responding to or maintaining interactions or conversations, and will present differently depending on age and cognitive level of functioning. In the most severe cases, the individual will actively avoid interactions or may appear oblivious to others’ presence. While at the other end of the spectrum, they will demonstrate a desire to interact, but lack the appropriate skills to make social interactions effective.

Communication
All individuals with ASD have qualitative difficulties in how they communicate, both verbally and non-verbally. These challenges will range from a lack of language and gestures in the most severe cases, to the use of complex language that may be odd or inappropriate in those who have Asperger Syndrome (AS) or high functioning forms of Autistic Disorder (AD) where speech and intellectual abilities are within the normal range.

Behaviour
For individuals with ASD of all ages and abilities, they may show one or more highly repetitive and often non-functional behaviours (e.g., hand-flapping, spinning objects). This could also include inappropriate and/or inflexible routines within daily activities or play or a highly restricted range of interests within play or conversation.

While all individuals with ASD have some sort of difficulty in each of these areas, the specific difficulties vary from person to person. It is important to remember that no two individuals 

will share the exact same pattern of difficulties. This is why autism is now commonly referred to as a spectrum disorder to represent the broad range
of abilities and challenges found among those with autism.

What are the social challenges faced by Individuals with ASD?

Preschool

Social challenges for most children with ASD are detectable in early childhood or even infancy (Wicks-Nelson & Israel, 2006). For those with autism, problems with eye contact, responding to their name, sharing attention and imitation skills are some of the earliest signs of social challenges. These signs may persist, especially for those with more severe cognitive challenges, and they may remain socially indifferent or even socially avoidant. At the other extreme, toddlers and preschoolers who receive a diagnosis of Asperger’s Disorder or Asperger’s Syndrome (AS) or Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) may have social challenges that initially go undetected because they are very similar to the behaviours seen in typical children going through the “terrible twos” (for example, defiance, tantrums). What may distinguish children with ASD from typical two-year-olds is the extreme social inflexibility, insistence on sameness, and severe tantrums or “meltdowns” associated with change in routines, transitions or any situation where the child is not able to control the situation or get what he or she wants. These highly inflexible patterns that lead to meltdowns are quite common in children with ASD of all ability levels. For verbal children, such as those with AS and High Functioning Autism, their inflexibility often shows up as a strong need to control and direct the play or activities of siblings and peers, and they may be unwilling to follow someone else’s direction or example. The impact of extreme inflexibility and frequent and persistent upsets is to stigmatize and further isolate the child from peers and potential friends.

School-Age

Without effective early social intervention, the problems of early childhood are likely to persist and may escalate with the increased social demands of school. Children with ASD often have limited play abilities and show minimal interest in play with peers. However, when there is interest in peers, which is more typical in children with some language development, these children usually lack the appropriate skills to initiate play, to respond to the play invitations of peers, or to learn to play through observation of peers. Their attempts at social interaction may be immature and may include intrusions into personal space, inappropriate touching or even aggression. For many children, their confusion about the social world and failures in interacting or making friends may lead them to avoid social interactions altogether. When they do have friends, their friends tend to be very accommodating children who acquiesce to their need to control play. Maintaining friendships as they get older can be very challenging given that typical children become less tolerant of the one-sided nature of the friendships, especially when the conversational skills of the child with ASD are limited or the topics of conversation are restricted to special interests that don’t match the peer’s.

Adolescence

As children with ASD move into junior high and high school, they are likely to be increasingly isolated from peers. For those who have severe autism or significant cognitive challenges, they are likely to persist with the same interests and play patterns of early childhood, which may lead to stigmatization amongst peers. However, the school’s efforts to create an environment of acceptance and inclusion may help to minimize stigmatization and increase the potential for peer friendship. For those with higher language abilities, they may have greater awareness of their differences and greater potential for learning how to fit in. However, it is common that by adolescence they will have experienced social rejection or bullying, as well as the social anxiety that would naturally accompany these stressors. Anxiety Disorders or Obsessive Compulsive Disorders are more likely to be diagnosed in adolescence, to some degree a product of the increasing social pressures. Not surprisingly, these teenagers gravitate toward spending more time with adults who encourage them in their special interests, or they spend more time on their own, strengthening their knowledge or skill in areas of special interest or ability.

Adulthood

The challenges of adolescence persist into adulthood and are exacerbated by growing demands for independence beyond high school and, in most cases, fewer supports or services for building social connections and friendships (as pointed out in our past publication, Forgotten: Ontario Adults with Autism and Adults with Aspergers). As identified in our Forgotten report, socialization challenges include, “being overwhelmed by the presence of too many people, and/or by noise. They may be unable to concentrate sufficiently to learn new skills or participate in group activities. All of the above can lead to misunderstandings, frustration and behavioural issues” (2008, p. 11).

In the Forgotten report, it is suggested that, for some individuals with ASD, they may not have received a diagnosis until their late teens, meaning that they may have struggled through adolescence and early adulthood without appropriate services. As well, some young adults may have received an incorrect diagnoses or a diagnosis that no longer fits their profile. Without an appropriate diagnosis, the individual may not have access to any social skills interventions. To date, we have very little information on adult social skills programming for those with ASD.

Key words: Social interaction, social skills, diagnosis

 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.5. What to Look for When Choosing Social Skills Programs for People with ASD


This article is an excerpt (pages 26 to 28) from a full report published by Autism Ontario in 2011: SOCIAL MATTERS: Improving Social Skills Interventions for Ontarians with ASD. Click here to view the full report: http://www.autismontario.com/Client/ASO/AO.nsf/object/SocialMatters/$file/Social+Matters.pdf 

In choosing what components to look for in a social skills program, whether you are designing your own child’s or student’s program or evaluating the best options available in your community, we are recommending that you consider the following:

1. Social Skills Curriculum

Of all curriculum-based models, the PEERS model for teens (Laugeson et al., 2008) and the Children’s Friendship Training (CFT) model for children (Frankel et al., 2010) have the strongest research evidence to support their use for individuals with ASD. The use of these manualized friendship-training programs will require appropriate training from those who have been trained by Frankel, Laugeson and colleagues, as well as ongoing evaluation to ensure effectiveness and generalizability of skills to real life situations. Other Social skills curricula that have some research support are listed in Appendix A.

2. Ongoing Program Evaluation 

In evaluating the implementation of any social skills curriculum, parents and professionals are encouraged to collaborate with researchers or those trained in program evaluation to ensure that the evaluation provides an accurate and comprehensive assessment of the program. Social skills assessment tools to be used in the evaluation can be drawn from the research studies listed in this literature review. Several assessment tools that may be useful are listed in Appendix C.

3. Choosing Social Skills Interventions
If you choose to design your own social skills program rather than using a pre-existing curriculum, you have a range of intervention strategies to choose from that research has shown to be evidence-based or promising.

a. Evidence-based practice. Video modeling is the only social skills intervention that has sufficiently strong research support to be considered suitable for inclusion as an “evidence-based practice”. Despite the strength of the research on video modeling procedures, ongoing research and evaluation is needed to determine how these procedures can be used with individuals of different ages and ability levels.

b. Promising Interventions. The following intervention strategies have sufficient research support to consider them promising and worthy of using in your social skills program with persons with ASD: 

  • Social skills training groups
  • Parent training
  • Cognitive behavioural therapy (CBT) strategies 

More research is needed on these interventions to determine the conditions under which they are effective (for example, with which age groups or developmental levels). Ongoing evaluation at the individual level will be needed to ensure effectiveness and skill generalization.

c. Interventions with insufficient research or variable results. For the following interventions, there is either insufficient research or the results across studies have been variable when the intervention was applied to teaching social skills to persons with ASD: 

  • Self-management training
  • Activity-based interventions
  • Peer-mediated interventions
  • Social Stories™. 

It is recommended that further research be carried out to clarify under what conditions these interventions are efficacious or effective. At this time, the inclusion of these strategies in social skills programs is questionable and, if used, should be closely monitored for effectiveness.

4. Focus on Skill Generalization and Maintenance
Very few research studies included opportunities to directly assess whether skills learned during social skills training actually generalized to real life social situations and led to better social functioning. As well, few studies incorporated follow-up assessments more than a couple of months following intervention to assess long-term maintenance or the need for “booster sessions” to re-establish gains if needed. Strategies for generalization and maintenance of social skills are provided in Appendix D.

5. Focus on Larger Social Goals
Making and maintaining friendships was one of the primary goals that parents in our survey had for their children participating in social skills groups; however, 46% of parents reported poor outcomes in maintaining relationships following intervention. It will be important for any social skills program to not only look at how to promote generalization and maintenance of specific social skills, but to consider curriculum models that promote these larger social goals. Details on the PEERS model for friendship development can be found in Appendix A.

6. Strive for Quality Adaptation of Social Skills Curricula
Material translated into French can vary greatly in terms of consistency of terminology, accuracy of autism related language, quality and universality of the French. Material must be adapted, not simply translated, and reviewed by people knowledgeable in the field of ASD to ensure quality and applicability. When using translated material, it is recommended that regionally relevant language be used to facilitate generalization to the natural environment.

 

Keywords: Social Interaction, social skills, instruction 

 


 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.6. Ideas for Promoting Generalization of Social Skills

This article is an excerpt (pages 35 & 36) from a full report published by Autism Ontario in 2011: SOCIAL MATTERS: Improving Social Skills Interventions for Ontarians with ASD. Click here to view the full report: http://www.autismontario.com/Client/ASO/AO.nsf/object/SocialMatters/$file/Social+Matters.pdf

What is generalization?

Generalization refers to the transfer of what is learned in one setting or situation to another setting or situation without explicit teaching or programming in the second transfer setting.  In Applied Behaviour Analysis, when we talk about generalization, we are often talking about teaching skills in one setting or situation and having the person naturally start using those skills in another setting or situation. For example, if a child learns to tie her shoes with her mother at home, she will naturally be able to tie her shoes when at school in the presence of her teacher or on her own. In typical development, generalization is assumed to be natural and the norm, to be expected.

Another kind of generalization that we often talk about as behaviour analysts is the generalization of treatment effects. If in the home, a parent uses time-out to punish aggression between siblings and rewards the children for using their words to ask for what they want, we would expect to see aggression decrease and verbal requesting increase. When this happens consistently in the home and is maintained over time, we would say the intervention was effective. To say that generalization had occurred, we would have to see the children reduce their aggression and increase their verbal requesting with other children (e.g., peers in daycare) without having to set up the same reward and punishment contingencies in the daycare. From this example, you can see that even in typically developing children, generalization may not happen naturally. We need to program for generalization – that is, we need to arrange the environment so that generalization of skills or treatment effects is more likely to occur.

Programming for Generalization
In the early years of Applied Behaviour Analysis, two prominent behaviour analysts, Dr. Trevor Stokes and Dr. Donald Baer wrote a paper on generalization (Stokes & Baer, 1977) that has guided the thinking and actions of behaviour analysts and behavioural researchers over the past three decades. After reviewing 120 studies on behavioural intervention, they identified eight general techniques that had been found effective in promoting the generalization of treatment effects, including the reduction of behaviour problems and the increase in adaptive behaviours and skills.

1. Train and Hope: Training and hoping that we will get generalization of social skills to new settings or situations are our typical ‘default technologies’. In many cases, social skills may generalize naturally, especially in typical child development. However, for individuals with autism and those with related intellectual disabilities, we are less likely to see generalization happen as predictably. Therefore other technologies are needed to increase the chances.

2. Consistency of strategies across settings, people and situations: It is common that we will first find teaching or behaviour change strategies that are effective in one setting. Then we will observe how these changes generalize to new settings or situations. If generalization does not occur, we will need to add in the effective intervention strategies to see behaviours improve or skills generalize.  Although this may be common practice, it may be inefficient to wait and see if generalization will occur, especially in working with people who have demonstrated challenges with generalization.  Working form the start to have consistent intervention across different settings, people, and situations is preferred. If the same social challenges or social skill deficits are occurring in the home, school and community, parents, teachers and ASD professionals will want to work together to come up with strategies that can be applied consistently across settings. These strategies include environmental changes, teaching and prompting strategies, and behavioural contingencies. This most basic strategy of consistency will go a long way to promote generalized skills and behaviour change.

3. Introduce to Natural Maintaining Contingencies: When we are first teaching social skills to people with ASD, they may have very little motivation to learn as they’ve never found social interactions very rewarding. In fact, social interactions may be confusing, anxiety provoking and aversive. So in teaching social skills, we are likely to add in some “extrinsic” rewards to establish the social skill, such as giving token rewards for approaching peers or initiating play with peers; these tokens are later traded in for a high preference activity not necessarily related to the social context. Sometimes (not all the time), it is only through the use of extrinsic rewards that we can get past the anxiety and motivate the person with ASD to engage with peers; and it is only after having lots of engagement and positive experiences with peers that the person’s anxiety will reduce and he/she can begin to enjoy what most of us love about being social (such as, the pleasure of people smiling at us, including us in play or conversation, sharing high preference toys or interests). If we need to use artificial rewards to get the interactions started, we will want to fade out these rewards as quickly as possible - as soon as we see the person is starting to experience pleasure from just being with peers. Social behaviour that is maintained by these natural social contingencies of reinforcement (smiles, praise, sharing, being included, etc.) has a much better chance of generalizing to new situations because most people in the other settings will be naturally trained and able to provide social reinforcement.

4. Train Sufficient Exemplars: When we teaching any new skill, if we only teach with one example, we cannot expect the person with ASD to generalize the skill to novel situations.  So it is important when planning your social intervention (e.g., a social skills group), that you consider how to give the person lots of practice with many different social partners, across many different settings, and in many different social contexts, real or simulated. For example, if we are teaching someone how to ask questions of a peer to show interest in that person’s interests, we would want to provide a wide range of general questions and comments that can be applied to conversations with people with diverse interests (e.g., “What do you like to do?”, “Do you have a hobby?“, “That’s interesting! That sounds fun. Tell me more”, etc.). With this set of generic questions, you may then train through role play across at 5-10 examples (a.k.a., exemplars) with different kinds of interests before the person with ASD could generalize to conversing with a new person about his or her novel type of interest.

5. Train Loosely: We have a tendency in teaching social skills to people with ASD to use scripts to ensure consistency of training and to make it easier for the person to learn the new skill. One of the limitations in using scripts is that the person with ASD may end up sounding stilted or robotic in their responses, or get stuck and not know what to do or say when people in natural settings don’t follow the training script.  We need to train a wide range of responses that give the person many response options. We also need to ensure that there are lots of opportunities to practice using these options. For example, if we train the person with ASD to use several different ways to initiate an interaction (e.g., sitting beside someone and smiling at them, waving from a distance, saying “Hey do you want to play?” “What are you doing?”, “That looks interesting”, “Can I join you?”), they will have a better chance of finding something appropriate to say or do in novel situations.

6. Use Indiscriminable Contingencies: When we are teaching a new skill or trying to increase a low rate behaviour, we know that it is most effective and efficient to be consistent in reinforcing every attempt to use the new behaviour – learning happens faster!  However, the social world doesn’t work that way – we don’t always get rewarded every time we engage in an appropriate social behaviour. In fact, sometimes we are ignored. So how do we teach so that the person becomes resilient to being ignored or not getting what they want every single time? As teachers, it is our job to quickly move from “continuous reinforcement” to what is called “intermittent reinforcement” where not every response is rewarded.  Intermittent reinforcement makes it difficult for the person to know when he or she will get rewarded. Rewarding the person randomly after several appropriate responses would make the learner more attentive and have him/her work harder to get the reward. Typically we start with high rates of reinforcement (that is, reward after every appropriate response or every couple responses) and gradually and systematically “thin” our reinforcement until the person cannot predict when the reward is coming. In social skills training, rewarding the person during natural interactions with peers may be too disruptive to the interaction. So we often use delayed reinforcement. For example, we might video play interactions or conversations with peers in natural settings (with permissions, of course!) and play the video back to the person or group later so they can identify when they were using the specific target social behaviours and get praise or other rewards; also they can see where they were not using the appropriate social behaviours and get feedback and practice on this social skill.

7. Program Common Stimuli: When teaching social skills in a formal setting, such as a therapy group or in a special room in a school, we will want to consider how similar or different the setting is to the generalization settings where the social skills will be needed.  What are some “common stimuli” that could be included across training and generalization settings to promote generalization? We could include same peers, teachers, toys, activities, equipment, physical space, room set up, or contingencies (e.g, use of token system). The more similar the people, activities and environments, the easier it will be to get generalization in non-training settings.  In fact, for people with severe challenges in generalizing, we may want to avoid any type of simulation and only train in the same settings as where the social skills will be needed.

8. Mediate Generalization: Any time the person practicing social skills sets a goal for using a newly acquired social behaviour in a natural setting and then goes ahead to actually engage in that social behaviour, we can say that this was “mediated generalization”.  The promise or goal setting is the mediating variable that can help to promote generalization. Mediation might involve self-report; for example, where a child states before the play session starts what behaviour she is going to engage in with peers (usually a behaviour that has just been taught) and then, at the end of the generalization session, she reports on and is reinforced if she engaged in the target social behaviour.  The correspondence between saying what we will do and doing what we say is a learned behaviour that is not always present in young children; however, it can be taught through explicit reinforcement for correspondence between self-report and report from an adult observer. For example, the child might be taught to share toys and then asked to report on whether she shared her toys; if she says yes, and the teacher observed her sharing as well, she would get reinforced with praise or a tangible reward.

Train “To Generalize”: Most of the time we are teaching and reinforcing very specific target social behaviour.  This could put limitations on the range of behaviours the person with ASD might engage in.  If we were to explicitly ask the person to generalize (e.g., “I want to see you use what you learned today in social skills group when you are in your classroom or at recess”) and then we were to set up contingencies to reinforce trained behaviours when they happen in the non-training settings, then we are likely to see generalization.  This is somewhat different than the goal setting described above as, here, we are talking about reinforcing diversity of social responses.  Diversity could be related to one specific context, for example, in learning conversational skills, the person would be reinforced for saying new things or asking new questions, while repetition of a question or comment would not be reinforced. Diversity of response could also be reinforced across various social context, for example, within a social skills group where there are many targets taught sequentially, participants can be reinforced for generalizing any of the previous targets to natural interactions. Parents in the home and community and teachers in the school could be trained to watch for and reinforce instances where any of the targeted social skills were observed.

These nine strategies for promoting generalization provide a foundation from which we can increase the chances that the social skills we teach will actually get used in real life situations. We have a long way to go in perfecting social skills interventions. The one thing of which we can be confident is that programming for the generalization and maintenance of social behaviours from training settings to natural environments will greatly increase the opportunity for sustained social growth for our clients, students and loved ones with ASD.

_____________

Stokes, T.F. & Baer, D.M. (1977). An implicit technology of generalization. Journal of Applied Behavior Analysis, 10 (2), 349-367.

Keywords: Social Skills, teaching

 


 

 


 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.7. Experts in Social Skills Interventions for People with ASD

This article is an excerpt (pages 31-33) from a full report published by Autism Ontario in 2011: SOCIAL MATTERS: Improving Social Skills Interventions for Ontarians with ASD. Click here to view the full report: http://www.autismontario.com/Client/ASO/AO.nsf/object/SocialMatters/$file/Social+Matters.pdf

 

Information is provided below on seven of the best-known experts on social skills interventions for persons with autism spectrum disorders (ASDs). All of these experts were referenced in the Professional and Parent Surveys. This information is provided as a resource to parents, educators and professionals seeking materials for teaching social skills to their children, students and clients.

Expert’s Name

(Alphabetical) 

Social Skills Contributions to the ASD Community

Important Publications/Resources Written by the Expert*

Tony Attwood

Dr. Attwood is a clinical practitioner who supports children and adults with AS, an international lecturer, and an adjunct associate professor and supervisor to post-graduate clinical students at Griffith University in Brisbane, Australia. Dr. Attwood’s work is focused on improving individuals’ social understanding, managing anxiety and anger, strategies for reducing bullying and teasing, helping children understand and cope with being different, as well as educating and training caregivers in increasing the quality of life for individuals with Asperger’s Syndrome. Dr. Attwood has also been highly involved in academia and clinical practice focused on the use of Cognitive Behaviour Therapy (CBT) to decrease anxiety symptoms and manage anger in children with ASD.

Asperger’s Syndrome, Vol. 2 DVD Anger Management, Teaching Teachers, and Teenage Issues: Future Horizons Inc. (2003)

Exploring Feelings: Cognitive Behavior Therapy to Manage Anger: Future Horizons Inc. (2004)

Jed Baker

Dr. Baker is currently providing social skills training for students with ASD in Milburn Public Schools in New Jersey, as well as serving on the ASPEN professional advisory board and directing the Social Skills Training Project. As Director of the Social Skills Training Project, which uses a cognitive-behavioural approach to social skills training, his goals are:

To provide relevant social skill instruction that will generalize into daily routines.

To make socializing fun so that students want to socialize.

To help “typical” peers and professionals become more understanding, accepting, and engaging of those with social difficulties

No More Meltdowns, Future Horizons Inc. (2008) (Southwick)

Social Skills Training for Children and Adolescents with Asperger Syndrome and Social-Communication Problems. Autism Asperger Publishing Co. (2003) (Smith Myles)

Fred Frankel and Elizabeth Laugeson

Dr. Frankel is the Director of the Parenting and Children’s Friendship Program at UCLA, in Los Angeles, California, which offers empirically-based parent training and social skills training to children and adolescents with ASD. Dr. Frankel has conducted research on parent training to decrease behavioural difficulties and increase social skills in children and adolescents with ASD. As well, he is the Principal Investigator of the Parent-Assisted Friendship Training in Autism project which focuses on increasing friendship skills in children with HFA who are included in typical elementary school classrooms from grades 2-5. In partnership with Dr. Elizabeth Laugeson (at UCLA),Frankel has adapted the Children’s Friendship program for a teenager population and called it PEERS – Program for the Education and Enrichment of Relational Skills. The parent component, which runs concurrent to training for both children and teens, addresses how parents can support their children in using what they learn in group to make and keep friends and to be accepted by those within their age group.

Children’s Friendship Training: Brunner-Routledge (2003)(Myatt)

Friends Forever: How Parents Can Help Their Kids Make and Keep Good Friends: Jossey-Bass (2010)(Frankel)

Social Skills for Teenagers with Developmental and Autism Spectrum Disorders- The PEERS Treatment Manual: Jossey-Bass (2010) (Laugeson & Frankel)

 

Carol Gray

Carol Gray is the Director of The Gray Center for Social Learning and Understanding in Grand Rapids, Michigan. Carol Gray is best known for developing Social Stories and Comic Strip Conversations, intervention tools which are used by parents and educators to share accurate social information to an individual with ASD in an easily understood manner with the intent to help the person understand not only what is expected behaviour in specific social situations, but why the behaviour is important and what difference it makes for future interactions. She has written numerous articles, books, resources, and chapters on the subject of increasing social skills in individuals with an ASD and has over 20 years of experience in working with students in this population in public schools as a teacher and consultant.

My Social Stories Book: Jessica Kingsley Publishers (2002)(White)

New Social Story Book- Revised and Expanded 10th Anniversary Edition: Future Horizons (2010)

 

Steven Gutstein

Dr. Gutstein developed and directs the Relationship Development Intervention (RDI) Program for ASD at his Centre in Houston, Texas. The RDI Program is described as “a tailored set of objectives, extending from the Family Guided Participation Program and intended to target the core deficits of individuals with the diagnostic distinction, Autism Spectrum Disorder. More specifically, the program operates as a comprehensive set of developmentally sequenced steps, committed to re-building the Guided Participation Relationship as the cornerstone for neural development. It also helps families construct opportunities for the child’s neural growth and support their children in forming reciprocal friendships, mature emotional relationships, engaging in flexible/adaptive thought and mastering problem-solving abilities necessary for job attainment and success in the modern world.

Relationship Development Intervention with Children, Adolescents and Adults: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD, NLD: Jessica Kingsley Publishers (2002)(Sheely)

Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD and NLD: Jessica Kingsley Publishers (2002)(Sheely)

Brenda Smith Myles

Dr. Smith Myles is an associate professor in the Department of Special Education at the University of Kansas where she co-directs a graduate program in ASD. Dr. Smith Myles has sat on many advisory boards across North America involved in conducting applied research, providing direct services or education, raising awareness to caregivers and the community, and addressing mental health challenges associated with an ASD diagnosis.

Dr. Smith Myles is best known for her work on The Hidden Curriculum, in which she makes explicit the myriad of social rules and conventions that are not taught in schools and without which one cannot survive in the social world.

 Dr. Smith Myles has many publications and writes about topics including: managing anger and rage cycles, bullying, practical classroom strategies, social inclusion and the use of visual supports.

The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social Situations: Autism Asperger Publishing Co. (2004)(Trautman & Schelvan)

Asperger Syndrome and Difficult Moments-Practical Solutions for Tantrums, Rage, and Meltdowns: Autism Asperger Publishing Co. (2005) (Southwick)

Michelle Garcia Winner

Michelle Winner is the director of the Social Thinking Centre based out of San Jose, California. Michelle Winner, Speech Language Pathologist and creator of Think Social Publishing, has developed a comprehensive Social Thinking curriculum and a myriad of resources to teach the kind of thinking that is foundational to learning social skills. Her ILAUGH model of social thinking assists teachers and parents in teaching concepts needed to process and react to social situations in order to succeed in solving social challenges. In their clinical work, Winner and her colleagues Pamela Crooke and Stephanie Madrigal work with small groups matched for age and social cognitive level to provide broaden social understanding and practise social skills within clinic and community settings.

Thinking About You, Thinking About Me: Jessica Kingsley Publishers Ltd. (2003)

Madrigal, S. Superflex... A Superhero Social Thinking Curriculum Madrigal & Winner (2008) (Note: This resource is not written by Winner, but is published through Think Publishing )

Socially Curious, Curiously Social Think Social Publishing (Crooke) (2011)

 

 

 

Keywords: Social Skills

 

This article is an excerpt (pages 31 to 33) from a full report published by Autism Ontario in 2011: SOCIAL MATTERS: Improving Social Skills Interventions for Ontarians with ASD. Click here to view the full report:

http://www.autismontario.com/Client/ASO/AO.nsf/object/SocialMatters/$file/Social+Matters.pdf

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.8. The issue of Eye Contact

Leslie Broun, M.Ed., ASD Consultant

As society has developed a deeper understanding of Autism Spectrum Disorders (ASD), we have access to more information about the issue of eye contact, much of which has come from persons with ASD who have been able to report on their experience:

 

  • “I can look at you or I can listen to you, but I can’t do both”.  Jean Paul Bovee, 1998
  • “When I look someone straight in the eye, particularly someone I am not familiar with, the feeling is so uncomfortable that I cannot really describe it. If I don’t look away, then whilst someone is talking, I find myself staring really hard and looking at their features and completely forgetting to listen to what they are saying.” Luke Jackson, 2002
  • “Making eye contact with a speaker can result in a breakdown of communication. How much easier it is to hear someone if you can’t see his or her face. Then words are pure and not distorted by grimaces and gestures. I can listen better to the tone of someone’s voice when I am not confused by the unwritten words of their facial expressions.” Wendy Lawson, 1998
  • “With people having autism and Asperger Syndrome, the nonverbal component can be so difficult to decode that it interferes with getting meaning from the verbal channel. As a result, very little, if any communication occurs.” Stephen Shore 2001

 

Usually, the need for eye contact belongs more to the neurotypical person than the person with ASD, particularly in the context of social interaction. Social situations and conversations are the contexts in which neurotypical persons expect eye contact therefore encouragement and training for play and social interaction may be the most appropriate starting point.

 

  • Clarify what is meant by eye contact. Parents and instructors need to be in agreement about what this means:
    • Establishing eye contact?
    • Sustaining eye contact? For how long?
    • Alternating looking between the other person’s eyes and mouth area?
    • Establishing eye contact and then looking at an object or in another direction?
  • Analyze your own degree of eye contact. Most people do not sustain eye contact with a communicative partner. Eye contact may be established and re-established many times in neurotypical conversation.
  • Observe the child to see if he or she tends to look more at the mouth than the eyes. Many persons with ASD find communication easier if they look at the mouth of the communicative partner as it allows for “lip-reading” which may help with language processing. The mouth and positions of the lips also convey many messages to the listener/observer.
  • If eye contact is the instructional goal, use familiar and comfortable materials and activities. When in the early stages of instruction, use the same partner. Often, as a child becomes familiar with a social partner and the sound of their voice, he or she may be more likely to look at that person comfortably.

 

During instructional interactions, the goal is for the student to learn how to do the task, which may mean that there is no eye contact involved. Do not assume that if you request and get eye contact, that the student will be able to follow your instructions or understand your message. Establishing joint visual attention with learning materials or a book will be more important than the social aspects of an instructional interaction.

 

  • A student may need to look down at his or her desk or at the wall or even close his or her eyes in order to process the auditory input of verbal instructions. When sharing information or instructions verbally, provide a visual support, such as a sheet of instructions, a diagram or a sample of what a finished product should look like.
  • Allow time for the student or child to redirect his or her attention. Research has shown that many persons with ASD experience difficulties with shifting their visual attention: looking from one person or thing to another in social and learning situations.
  • Do not physically manipulate or turn a child’s face to force him or her to look at you. The child may find this to be overwhelming and may then do this to other people.
  • Creating and using a story written to increase social understanding may be very useful in helping a student learn why and when people usually establish eye contact. It is important for individuals with ASD to understand that people generally like it when a speaker or listener looks at them occasionally during an interaction.

 

When considering the work that must be done by the person with ASD to live in the world of the neurotypical, we must ask ourselves to what extent we can respect and accommodate individual abilities and preferences when it comes to the issue of eye contact. The ultimate goal is communication. If we insist on eye contact, we may prevent the person who has an ASD from deriving meaning from the experience.

 

 

 

Keywords: eye contact, social interaction, instruction, joint attention

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.9. Teaching Social Skills: Peer Network Interventions in Inclusive Elementary School Settings

By Suzanne Murphy 

It is a well-known fact that people with an autism spectrum disorder (ASD) face significant challenges in the areas of social skills and social interactions. This is a real concern for parents, school staff and community service providers alike. Deficits and social differences are evident from an early age. Individuals with an ASD can show a range of social characteristics, from aloofness and avoiding social situations to a desire for friendships and actively seeking social interactions although usually lacking the skills to do this successfully.

Social deficits and the failures that result from them impact the short-term and long-term well being as well as quality of life of individuals with ASD. Where to start? What to teach? What is the most effective level of intervention? How to ensure generalization of skills from one environment to another or from one person to another? These are only some of many questions that arise when attempting to address the multiple social needs of individuals with ASD.

Another type of question touches upon peer involvement in social learning.  How can the importance of peers in social learning be underlined?  What structures are necessary to fully benefit from this naturally occurring social network?  During her presentation at the 2012 Association for Behavior Analysis International (ABAI) Autism Conference, Debra M. Kamps (Ph. D.) associate director and senior scientist at the University of Kansas clearly presented the necessity for social intervention starting at a young age. Peer mediated interventions are a key strategy for social learning. Circles of Friends and social skills groups made up of children or youth with ASD and neurotypically developing peers are two examples of this type of intervention.

According to Kamps, neurotypical peers interact with one another about 40 percent of the time, which is not the case for children and youth with ASD. She shared results of research which examined the impact of peer networks, defined as small groups of peers with specific roles including offering support and assistance, tutoring or acting as reinforcing agents with the students with ASD.  Intervention based on peer networks differs from other interventions in two important ways: training of peers and peer involvement in the choice of activities and goals. Seventeen studies involving forty-five participants attributed progress in social communication and exchanges to the length of interactions between the student with ASD and their peer network and to the fact that peers considered themselves ‘agents of change’.

Reasons for training peers are many, most notably that they are part of the natural environment. Peers spend the entire school day with the student with ASD and they move up together from year to year. However, the fact of being physically in the same classroom offers no guarantees of successful interactions or positive attitudes towards students with special needs. Furthermore, students with special needs are more likely to be victims of bullying than their neurotypical peers. Peers play an important role in social learning, but without guidance they may unknowingly encourage interfering behaviour of the student with ASD or fail to reinforce desired behaviour.

Results of a five-year longitudinal study, carried out by Kamps and her colleagues, demonstrated the positive impact that peer networks can have. The study followed forty-five students with ASD in elementary school and each student was part of one to four peer networks per year. Peer networks included social groups or games, peer tutoring sessions and recess or lunch groups and were active three to four times per week. Results showed significant differences in interactions between the students with ASD and peers who received training in comparison to interactions with unfamiliar or untrained peers.  Interval recording demonstrated interaction in 30% of intervals with unfamiliar peers, 40% of intervals with familiar peers but almost 70% of intervals with trained peers, an impressive increase. 

Kamps noted a few key evidence-based features of interventions based on peer networks:

 

  • Sessions and activities are structured and include one student with ASD and two to four peers;
  • Direct instruction is used to teach communication and social skills;
  • Visual supports are used and include graphics and words;
  • Scripts are used for the student with ASD and with peers;
  • Peers interact with the student with ASD. The role of the adult is to encourage peers to prompt the students with ASD to participate;
  • Reinforcement is incorporated into the intervention.

 

In addition to these features, Kamps underlines the following:

 

  • The ‘30 second rule’ is in effect. This means that if the student with ASD stops participating for more than 30 seconds, the adult prompts the peers to encourage participation. Peers can prompt the student with ASD a maximum of two times. If this does not result in participation, the adult intervenes directly;
  • Peer networks can exist with different frequencies.  It is not necessary for them to occur every day. Having said that, Kamps adds that a ‘dose’ of regular interaction is a way to overcome challenges related to autism;
  • Peer networks increase social interactions, can contribute to improved language and provide tools useful for better functioning in society.

 

It was also noted that although peer networks are effective, teaching staff struggle with incorporating them into the school schedule.  Kamps ended with a vision for moving forward and some questions to ponder:

 

  • How does one adapt interventions based on peer networks so they can be less intensive and less costly?
  • What might peer networks look like at the secondary school level and in adulthood?
  • What are target skills within community contexts?
  • What teaching strategies are essential to include?
  • What are the priorities to achieve significant results?

 

Although research can lead to additional questions, results of research to date support implementation of peer networks. It is impossible to negate the characteristics of ASD, the complexity and enormity of the social realm and the need to include a social component to programs designed for children with ASD.  The National Research Council (2001) recommends using peer mediated techniques to improve interactions and promote social development of children with autism.  Essential elements of peer networks are evidence-based and generally have a positive impact on the student with ASD as well as on the peers, two key parts of successful interactions.

Suzanne Murphy is consultant with over thirty years of experience in the field of child and youth work.  She specialises in the fields of autism spectrum disorders (ASD) and behaviour.

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.10. Increasing Social Involvement

Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Increasing Social Involvement

By Barbara Muskat, PhD, RSW & Jason Manett, M.A., Ph.D. (Cand.), The Redpath Centre

Social involvement and friendships are important contributors to quality of life. Individuals with friends enjoy greater psychological well-being and have a greater sense of self-worth (Bagwell, Bender, Andreassi, Montarello, & Muller, 2005; Bukowski, Motzoi, & Meyer, 2009; Gupta & Korte, 1994; Voss, Markiewicz, & Doyle, 1999). Conversely, individuals who lack peer relationships experience loneliness, boredom, lower self-esteem, and negative mental health outcomes including depression and anxiety (Bagwell et. al., 2005; Carbery & Buhrmester, 1998; Orth, Robins, & Roberts, 2008; Whitehouse, Durkin, Jaquet, & Ziatas, 2009).

Struggles with social interaction are among the diagnostic criteria for Autism Spectrum Disorder (ASD) (APA, 2000). While these difficulties are commonly first observed in childhood, they may become embedded and more complex as individuals with ASD enter adolescence and adulthood. During this period, individuals with ASD may become increasingly aware of their social and behavioural differences, more motivated to engage in relationships, and develop more sophisticated understandings of friendship (Kanner, Rodriguez, & Ashenden, 1972; Szatmari, Brenner, & Nagy, 1989). Nevertheless, adolescents and adults with ASD continue to have few social opportunities and friendships (Barnhill, 2007; Engstrom, Ekstrom, & Emilsson, 2003; Jennes-Coussens, Magill-Evans, & Koning, 2006).

Individuals with and without ASD demonstrate similarities in the meaning they assign to long-term friendships (Bauminger et. al., 2008; Locke, Ishijima, Kasari, & London, 2010).  Consequently, those with ASD are significantly affected by feelings of loneliness and isolation when they fail to form them (Frith, 2004; Howard, Cohn, & Orsmond, 2006; Locke et. al., 2010; Tantam, 1991). Therefore, addressing the poverty of social opportunities and experiences among adults with ASD is critical from both a quality of life and a health perspective.

Very little is known about social interaction trends among youth and adults with ASD.  An early study of peer relationships and participation in social and recreational activities by adolescents and adults with autism who live at home found that the likelihood of having friendships, peer relationships, and participating in social and recreational activities was low (Orsmond, Wyngaarden Krauss, & Malik Seltzer, 2004). A more recent study (Liptak, Kennedy, & Dosa, 2011) found that many youth had not gotten together with friends in the previous year, nor had they talked on the phone with a friend. The study concluded that numerous adolescents and young adults with autism become increasingly isolated over time. 

Qualitative research examining the experiences of youth and young adults with ASD about their experiences with social relationships and friendship also reveals responses ranging from retreating from friendships to feeling ambivalence about friendship to pursuing friendships (Marks, Schrader, Longaker, & Levine, 2000). Others, interested in socialization, have described using a technique of "masquerading" (Carrington, Templeton & Papinczak, 2003), to mask/hide social difficulties in an attempt to conform and fit into their high school social scene. 

Studies with adults with ASD found similarly divergent points of view (Jones, Zahl & Huws, 2001). Internet sites of adults with ASD reveal that participating individuals expressed a sense of alienation from society, frustration with the world, feelings of overall depression, and a pervasive sense of fear.  In contrast, more positive themes were found by Hurlbutt and Chalmers (2002) where adults described valuing support systems offered through family and spiritual communities. Howlin, Goode, Hutton, & Rutter (2004) also found adult socialization outcomes were variable with some individuals having meaningful social relationships and others remaining isolated and dependent. 

In our recent Ontario study of 480 youth (16+) and adults living with ASD (Stoddart et al., 2013), individuals with ASD and family members responded to questions about their social involvement. The findings support what was already described in the literature and highlight the lack of progress made in assisting young adults with ASD to become more socially involved. In open-ended questions about social activities and involvement, both family members and individuals expressed a desire for more social interaction juxtaposed with reluctance to participate in social activities, as well as feelings of social isolation. The majority (81.8%) of respondents indicated they had difficulties taking part in social activities; 73.7% stated that they did not find it easy to make friends; 60.9% indicated they did not have as many friends as they would like to have and 59.1% said that they did not find it easy to keep friends.  A further 57.3% noted they did not have a “best friend”. Almost half the respondents (43.6%) noted that there were limited or no social programs/groups for adults in their community.

Of those respondents who reported social activity, 33.1% said that they engaged in on-line social networking; 32.1% reported they have had a romantic or intimate relationship in the past; and 14.9% stated they were currently in a romantic relationship. Many respondents reported a desire to be social and to have and maintain friendships. Individuals with ASD and communication challenges were even more limited in their social participation, as their limited verbal and behavioural repertoire acted as barriers to successful socialization. Participants’ responses indicated that the programs that do exist for this population tend to be part of day programs, or tailored to those with developmental disabilities, which are not suitable for individuals with ASD and higher cognitive ability. Finally, respondents indicated that the family served as the primary social network for many adults with ASD.

Challenges:

  • Lack of early support for youth with ASD to prevent and address negative social experiences
  • Lack of community-based opportunities for small group socialization for individuals with ASD at all levels of cognitive ability
  • Lack of sufficient community-based leisure activities that can accommodate the special needs of adults with ASD
  • Limited therapeutic supports to help young adults with ASD cope with social anxiety and take social risks
  • Increased dependence on un-monitored on-line social interaction

 

Recommendations for the Community:

  • Create a centralized resource guide of social opportunities for individuals with ASD
  • Provide government funding for the creation and facilitation of small interest-based groups for individuals with ASD
  • Expand funding opportunities to hire support workers who assist individuals with social integration in the community
  • Create residential programs with an assisted living component that include facilitated social opportunities for adults with ASD with multiple, complex needs
  • Create residential programs for students with ASD in post-secondary settings

 

Recommendations for the Individual and Family:

  • Recognize that many appropriate social opportunities for adults with ASD can be found outside of treatment-based resources
  • Prioritize participation in extra-curricular activities for individuals with ASD at all ages
  • Identify social opportunities that capitalize on special interests (www.meetup.com is one resource)
  • For students in post-secondary education, identify social groups for students with ASDs at the institution, frequently run through the Disability Office
  • For students in post-secondary education, encourage participation in peer mentorship programs
  • Encourage young adults with ASD to gain employment and/or participate as a volunteer in settings that include social interaction with others

 

References

See attached pdf.  

About the Authors:

Barbara Muskat, PhD, RSW is Child and Adolescent Therapist at The Redpath Centre, Director of Social Work at the Hospital for Sick Children and Assistant Professor (status only) at the Factor Inwentash Faculty of Social Work, the University of Toronto. Her clinical and research interests include: addressing the social and emotional sequelae of Learning Disabilities and Asperger Syndrome, group interventions, and development and evaluation of programs to support parents of children with neurodevelopmental disorders.

Jason Manett, M.Ed, PhD (Candidate) is an Academic and Life Skills Coach at The Redpath Centre and Disability Counsellor at Accessibility Services, University of Toronto. He is also a doctoral candidate in the Human Development and Applied Psychology program at OISE/UT. His clinical and research interests include children, adolescents and adults with ASD, learning disabilities, ADHD, mood and anxiety disorders.



 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.11. Importance of Life Skills

Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: The Importance of Life Skills

By Priscilla Burnham Riosa, PhD & Claudia Accardi, MSW, RSW, The Redpath Centre

This article summarizes some of the information contained in the report entitled: “Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems”.

Whether youth or adults are ‘mildly’ or ‘severely’ affected by an Autism Spectrum Disorder (ASD), deficits in adaptive skills (also called ‘life skills’ or ‘functional skills’) present challenges which are not well-understood or sufficiently addressed in our service system. Studies and clinical practice show that learning and use of these skills are problematic for individuals with ASD because of difficulties with generalization of learned skills from one setting to another, behavioural inflexibility, sensory sensitivities, gross and fine motor difficulties, mental health struggles, difficulties with executive functioning, lack of interest, and perceptual challenges (Kanne et al., 2011; Smith et al., 2012; Stoddart et al., 2013). Moreover, daily life skills challenges affect not only the life of the individual with ASD, but also his or her family and couple relationships (Stoddart, Burke & King, 2012).

Although research on life skills in youth and adults with ASD is relatively scarce, existing studies show life skills development needs to start early, transition planning is required, and continuous support in the young adulthood years are crucial (Smith et al., 2012; Kanne et al., 2011; Hendricks & Wehman, 2009; Thomson et al., 2011). With the acknowledgement of the significant role that functional life skills play in good youth and adult outcomes along with provision of appropriate life skills services and supports, functional skill development can continue throughout adolescence and into adulthood. A recent study investigated the trajectories of daily living skills for adolescents and adults with ASD and found that “skills improved during adolescence and the early 20s, plateaued around the late 20s, and began to decline in the early 30s” (Smith et al., 2012, p.629).

In our study of 480 youth (16+) and adults living with ASD in Ontario (Stoddart et al., 2013), we gathered information on whether or not the individual required help with twelve life skills including: planning and preparing a meal, managing finances, attending to personal care, remembering schedules, arranging or attending appointments, using transportation, and finding and using services and supports. Overall, we found that services and supports in the area of adaptive skills were lacking and that an increased focus on family-centred supports is needed. Specifically, 81.1% of the participants reported that they always or sometimes required help with finding and using services, compared to only 15.8% of participants who did not. This finding not only speaks to the need for increased services for youth and adults, but also for supports to find and use services, and improved system navigation and self-advocacy skills.

In the same study (Stoddart et al., 2013), more than 50% of the participants reported that they always required help in several areas, including “paying and managing finances”, “doing basic household repairs”, “arranging and attending appointments”, “dealing with mail and letters” and “shopping for clothes and groceries”. These results reinforce the idea that when support for basic life skills is in place, the individual with ASD will be able to function successfully in his or her daily life, which also means being able to manage medications, maintain a healthy lifestyle, seek and maintain employment, and pursue an independent life. The development of daily life skills is critical for successful outcomes for adults with developmental disabilities (Smith et al., 2012), and when planning for supports and services they must be individualized and needs-driven (Hendricks & Wehman, 2009).

Acquiring life skills is a life-long process that requires persistence, perseverance, and regular practice. Different strategies have been used to teach life skills to youth and adults with ASD, including: verbal, gestural, or physical prompting, reinforcement and/or praise, task analyses, error correction procedures (Thomson et al., 2011); role-playing social situations, scripts, making use of a hands-on “life coach” or “organizational coach” (Stoddart, Burke & King, 2012); pictures and videos prompts (Laarhoven et al., 2010).

Challenges for the Development and Maintenance of Life Skills:

  • Sensory sensitivities, gross and fine motor challenges, and other diagnoses such as mental health problems may make participation in essential day-to-day activities challenging
  • Participation in daily life activities traditionally motivated by social pressures may not appeal to individuals with ASD in the same way as those without ASD (e.g., household chores, personal hygiene)
  • Dependency on family to support and perform many life skills may create chronic stress and worries related to the future of the individual with ASD

 

Recommendations for the Community:

  • Increase person-centred funding and programs for functional life skills services and supports for individuals across the entire range of adaptive abilities seen in ASDs
  • Create life skill resources, tools, and social networking opportunities for families and professionals to share knowledge and life skill training resources that include recommendations on how to foster basic and advanced independent living skills
  • Provide a lending library that includes user-friendly life skill resources such as teaching tools, curricula, and assessment measures that can be easily accessed by individuals with ASD, family members, and professionals
  • Enhance training for teachers, educational assistants, support workers, behaviour therapists, and other professionals on how to teach adaptive skills with a specific focus on promoting personal independence
  • Emphasize functional life skills as critical to success in the classroom and beyond; weave and highlight life skills training programs into academic programs and transition planning
  • Conduct longitudinal research on the effect of functional life skills on individual and family quality of life
  • Increase access to integrated residential and life skills support models

 

Recommendations for the Individual and Family:

  • When choosing functional life skill goals, select ones that are personally meaningful to the individual and his or her family, and teach them early so that there is time to learn the skill (e.g., teach shaving before facial hair becomes coarse and long)
  • Create goals that are appropriate given the individual’s strengths, personal preferences, and interests
  • Select skills that are relevant to the current situation as well as geared toward potential future living situations
  • Teach self-advocacy skills (e.g., asking for help, navigating and accessing services, safety) early on to promote choice-making and personal independence
  • Teach functional life skills in the natural environment whenever possible to avoid challenges with generalizability
  • Use individualized supports to learn and teach self-management and independence-related skills – e.g., activity schedules (pictures, text, video models), personal organizers, electronic devices, and apps
  • Consider using the services of a life skills coach trained in task analysis and behaviour supports
  • Seek assistance of friends and family members; however, distribute your requests to different people whenever possible to minimize the stress upon each individual in your support network (e.g., ask one person to help with managing finances, and ask another to help with remembering appointments)
  • Employ professional supports when feasible, such as a bookkeeper for help with financial needs, or a cleaning person/organizational coach to help with cleanliness and organization around the house

 

References:

Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with Autism Spectrum Disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24(2), 77-88.

Kanne, S. M., Gerber, A. J., Quirmbach, L. M., Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. A. (2011). The role of adaptive behavior in Autism Spectrum Disorders: Implications for functional outcome. Journal of Autism and Developmental Disorders, 41, 1007–1018.

Laarhoven, T. V., Kraus, E., Karpman, K., Nizzi, R., & Valentino, J. (2010). A comparison of picture and video prompts to teach daily living skills to individuals with Autism. Focus on Autism and Other Developmental Disabilities, 25(4), 195–208.

Smith, L. E., Maenner, M. J., Seltzer, M. M. (2012). Developmental Trajectories in Adolescents and Adults with Autism: The Case of Daily Living Skills. Journal of the American Academy of Child & Adolescent Psychiatry, 51(6), 622-631.

Stoddart, K.P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., Burnham Riosa, P., and Bradley, E. (2013). Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems. Toronto, ON: The Redpath Centre.

Stoddart, K.P., Burke, L., & King, R. (2012). Asperger Syndrome in Adulthood: A Comprehensive Guide for Clinicians. New York, NY: Norton Publishers.

Thomson, K., Walters, K., Martin, G. L., & Yu, C.T. (2011). Teaching adaptive and social skills to individuals with Autism Spectrum Disorders. In J.L. Matson, P. Sturmey (eds.), International Handbook of Autism and Pervasive Developmental Disorders: Autism and Child Psychopathology Series (pp. 339-354), New York, NY: Springer.

About the authors:

Priscilla Burnham Riosa, PhD is Clinical Research Coordinator at the Hospital for Sick Children, Research Assistant, The Redpath Centre and a Behaviour Consultant supporting children and youth with ASD. She is also a sessional instructor at the University of Guelph-Humber and Brock University. She has worked with individuals with ASDs and their families for over ten years.

Claudia Accardi, MSW is Research Assistant at The Redpath Centre and Factor-Inwentash Faculty of Social Work, University of Toronto. Among various research projects, she is currently involved in a project examining the marital relationships in families of children with ASDs. Her interests include program evaluation, the use of technology in counselling, and research in ASDs, developmental disabilities, and learning disabilities.

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.12. Sexual Education for Adolescents and Young Adults with an Autism Spectrum Disorder: Themes and Adapted Steps

The Sexual Profile

 
By: Isabelle Hénault, Ph.D.  Psychologist & Sexologist 

There is remarkably little research and clinical knowledge on the sexual understanding and profile of adults with Autism Spectrum Disorder (ASD). One hundred thirty-one subjects living in Canada, Australia, France, Denmark and the United States completed the Derogatis Sexual Functioning Inventory (DSFI; Derogatis and Melisaratos, 1982). The DSFI examines a range of aspects related to sexuality including knowledge and experience, desire, attitudes, affect, role, fantasies, body image and general sexual satisfaction. It provides a comprehensive assessment of behavior and attitudes relevant to sexuality.

The results suggest that individuals with ASD have levels of sexual interest and drive comparable to those of the general population.  On the other hand, the communication difficulties that they experience combined with their lack of social skills serves to increase the likelihood that symptoms of depression and inappropriate socio-sexual behaviours will appear (Hénault, Attwood & Haracopos, 2010).

When these difficulties arise, individuals need understanding and support from their partner, family, friends and relationship counselling agencies. This support should be open-minded, positive and based on adapted services. The remedial programs on social cognition, particularly in the areas of friendship skills and empathy that begin in early childhood, continue as the person matures and include information and guidance on puberty, dating, sexual knowledge and identity and intimacy. The goal is to provide greater knowledge and positive experiences to contribute to better decision making and self-esteem. The programs must accommodate the person’s circumstances and the cognitive profile associated with ASD. The author has developed a socio-sexual program for adolescents and adults with Asperger’s syndrome (Henault, 2005).

During adolescence and young adulthood, several subjects need to be addressed.  These constitute the basis of sexual education. Here are some examples (Sex Information and Education Council of the U.S., 1992):

Sexual organs of both sexes: names, functions and concrete descriptions

Bodily changes that accompany puberty

Self-esteem

Information on nocturnal emissions

Values and steps in decision-making

Intimacy: private and public settings

Sexual health: behaviours and initial examination of sexual organs/gynaecological examination

Communication about dating, love, intimacy and friendship

How alcohol and drug use influence decision-making

Sexual intercourse and other sexual behaviours

Masturbation

Sexual orientation and identity

Birth control, menstruation and the responsibilities of child-bearing

Condoms, contraception and disease prevention

Emotions related to sexuality should be included in discussions since they motivate many behaviours.

The first step in intervention and sexual education programs involves teaching general knowledge, which is tailored to the individual’s chronological and developmental age.  This information allows the individual to make informed choices.  It also enables the person to better understand the limits within his learned behaviours that can be explored and experienced, while respecting his own values and those of others.  The goal of the intervention is to both provide a structure for appropriate sexual behaviours and offer many opportunities for learning and obtaining enriching experiences. 

The following themes, which are adapted to the reality of more able adolescents and adults with Autism Spectrum Disorder, cover as a whole, the characteristics linked to their social and sexual development (Hénault, 2006):  

Information on nocturnal emissions

The value of, and stages involved in making decisions

Intimacy: both private and non-private parts of the body; different environments

Sexual health and initial examination of genital organs – or gynecological exam

Communication: interpersonal, intimate, love, and friendly relationships

The effect of alcohol and drugs on the ability to make decisions

Sexual relations and other sexual behaviours

Self-stimulation (masturbation)

Sexual orientation and identity

Planning for pregnancy, menstruation, and parental responsibilities

Condoms, contraception, and the prevention of sexually transmitted diseases (STD’s)

Hygiene

Friendship: recognition of abusive/unfriendly relationships

Dangerous relationships: age difference, intention, bullying, aggression

Qualities of a healthy relationship: sharing, communication, pleasure, interest, respect

Intensity of relationships: finding a balance and learning the limits

Social skills: presentation, interactions, reciprocity, sharing, etc.

Boundaries and the notion of informed consent

Conclusion

Sexual education has both short and long-term goals. In the short term, it allows adaptive sexual behaviors to emerge with respect to communication, emotions, and interpersonal relationships. Over the longer term, adolescents and adults with ASD will be in a better position to understand what interpersonal relationships consist of and will engage in appropriate behaviors in a variety of relationship contexts.  They should also be able to explain what is meant by a sexual relationship, how it unfolds, and the circumstances (time, place, appropriate individuals) under which it is possible for one to take place all while conducting themselves in a manner that is consistent with the situation.  Finally, these individuals will understand what is meant by informed consent in the context of a sexual relationship (Tremblay, Desjardins & Gagnon, 1993).  The ultimate goal is to allow individuals with ASD to fully experience social integration, healthy sexuality and access a better quality of life.

 

 

 

 

 

 


 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.13. Pointers from the Pool

By Micole Ongman, Program and Aquatic Supervisor, Town of Whitchurch-Stouffville

Swimming instructors and lifeguards are taught many principles that may be appropriate and transferred easily to those working with children with autism. It is most important for instructors and lifeguards to understand whom they are working with, that each child is different, that children want to trust their teacher, to have fun and to enjoy their experience. Here are 25 pointers that have applications well beyond the pool.

 

  • Safety is always first and foremost
  • Establish rules right from the start and associate them with a picture/visual if possible. Pick the important ones and keep it simple
  • At each class, go over the rules again. Dont expect them to be remembered. Point or the visual if the rule is broken so that they understand why the rules exist
  • Be aware and be prepared for medical concerns
  • The water may be very intimidating, take progressions slowly
  • Dont miss out on successes. What you think they should be doing for success may not be what they are actually able to accomplish and many of their successes go unseen. For example, the instructor may be frustrated that the child may be focusing on the water, getting to know the texture and feel. For them that is a huge success
  • Praise successes based on personal bests and skill building. Dont compare them to the other kids or to the criteria on the worksheets. There is always an accomplishment. Sometimes you need to look really hard and understand the child to recognize it.
  • If you think they arent listening, you are probably wrong.
  • Learn from parents who their favourite characters are, then relate learning activities to that character. They mat not be able to do something because they are shy or overwhelmed but they might be able to do it as Dora the Explorer, etc.
  • Follow their lead and try to get what you want done inserted into what their focus is. Work with their focus rather than expecting them to keep up with you.
  • Lead transitions smoothly. If you are at one end of the pool blowing bubbles and need to go to another area, do walking bubbles or something that links the activities.
  • IF they are focused on an activity and doing well at it, ask yourself if you really need to move on to the next thing right now or can you go with the moment and allow them to do this longer
  • Establish routines that do not change. Always meet at the same place for the beginning of the class. Start with the same activity to get them comfortable. End the class with the same activity to end with a success and to allow them to be aware that the next step is going out of the pool and class is over
  • Be consistent
  • What works for one child may be a disaster for another. Dont try to do canned lessons. Read in the child what works and what doesnt and adjust lessons as necessary
  • Use one command/direction at a time. Keep it simple. If they dont do it, it probably means that they need it explained again in another way
  • Everyone must respect the others personal space. Before you touch them to assist with a float or skill, let them know what you are going to do and that you need to touch them. Deomonstrate on someone else if possible
  • Skills that are usually broken down into two or three steps may need to be broken down to 10 or 20 steps
  • Assist children from the change room
  • Use their names whenever possible. Make sure you introduce yourself in any situation. Children are usually much more comfortable once they know your name
  • If there is a problem between two children, there is usually a reason and it is often in response to something once child did. Find out what the trigger was. It may be helpful to ask caregivers what types of triggers there may be and avoid those situations if possible
  • Rules and consistency are very important. They need to be clear, to the point, vusla if possible and explained
  • If necessary, have a dry run of a visit to the pool. Bring the child in with their parents, siblings, etc. And let them practice or role play how to obey pool rules
  • Have a plan in place on how to deal with issues. If a rule is broken or they are not listening, have a meeting place that they are asked to go to so that things can be discussed, they can calm down, etc.
  • It is too distracting to yell out directions or questions when they are in the pool. Devise a hand signal to alert them of the need to come to the side. Practice that with them over the course of the swim.

 

Be creative and have fun. Dont let their personal achievments slip by your notice. There is always something to praise.

About the Author: Micole is very active in Autism Ontario York Region chapter and has a young son with ASD. She brings personal experiences to her professional work. Micole also sits on the Council for the Lifesaving Society, Ontario Branch.

(From: The Autism Newslink, Summer 2006).


 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.14. Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Accessing and Finding Services and Supports

By: Claudia Accardi, MSW, RSW & Priscilla Burnham Riosa, PhD, The Redpath Centre

This article summarizes some of the information contained in the report entitled: “Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders:  Complex Needs in Unprepared Systems”.

Information regarding effective and necessary services and supports for the broad spectrum of youth and adults with ASD is lacking (Piven & Rabbins, 2011; Shattuck et al., 2012; Stoddart et al., 2013). Development of this knowledge base requires recognition of the diverse presentations of ASD and an understanding of their complex bio-psycho-social needs in a variety of areas including:  living arrangements and residential care; recreational and social activities; physical and mental health; employment; and transition services. Ultimately, research is required to inform policy and create a unified, integrated system of care that speaks to the diverse needs of youth and adults with ASD, their families and communities.

Findings from our recent Ontario study of 480 youth (16 years and older) and adults with ASD, family members, and professionals (Stoddart et al., 2013) revealed that respondents were frustrated with uncoordinated, inaccessible, and insufficient ASD services and supports. They also indicated that few professionals were knowledgeable about working with youth and adults with ASD.

Caregiver concerns regarding staff training were also reported in a study by Krauss, Seltzer, and Jacobson (2005). Likewise, Bruder and colleagues (2012) surveyed primary care physicians and found that the majority of physicians felt they had insufficient training to care for their adult patients with ASD; both physicians who had adult patients with ASD as well as those who did not have patients with ASD expressed the need for further training. Overall, capacity building across service sectors is needed to promote ASD awareness, understanding, and skills among a variety of professionals.

The service provision needs of youth and adults with ASD permeate all facets of adult life and do not only relate to their core ASD characteristics, but also to multiple co-existing challenges. This continuum of services includes residential supports (Krauss et al., 2005), employment opportunities (Hendricks, 2010), socialization experiences (Graetz, 2010), health care needs (Lunsky, Gracey, & Bradley, 2009), transition support (Stoddart et al., 2013), and advocacy training (Clark et al., 2004; Feldman et al., 2012). A survey of caregivers’ perceived opportunities for their family members with ASD indicated needs in the areas of socialization, employment, and residential living (Graetz, 2010). According to the same study, the greatest caregiver needs were in the areas of lifelong planning and for additional services. Dissatisfaction with adult services was expressed by a majority of the participants – particularly those caregivers whose family members were more severely affected by ASD (Graetz, 2010).

Not only is it important to consider how individuals with ASD can be integrated into the existing systems, but also the ways in which society can be sensitive to the needs of individuals with ASD and accommodate them (Newsom, Weitlauf, Taylor, & Warren, 2012). Provision of stable funding is an important component in delivering successful ASD services throughout an individual’s lifespan (Bryson & Autism Society Ontario, 1991). Furthermore, the integration of funding and service provision must be tailored to the unique needs and strengths of each individual with ASD (Newsom et al., 2012).

Challenges to Developing and Accessing Effective and Relevant Services and Supports:

  • Lack of stable funding for individuals and families which may increase financial and emotional stress upon the family
  • Uncertainty around funding for service providers may result in lack of consistent, high-quality programs
  • Inadequate integration between service providers and institutions across different domains (e.g., educational services, mental health services, developmental services, employment services, health services)
  • Insufficient data on the service use and needs of youth and adults with ASD in Canada and the effectiveness of programs to support these individuals

 

Recommendations for the Community:

  • Promote and fund integrated approaches to service delivery to improve cross-system service coordination and program implementation. Examples of services that could be integrated include: social skills intervention; employment support; psychological and pharmacological intervention; behavioural support; residential services.
  • Develop funding mechanisms that encourage program evaluation and increase data collection on the services and supports use and needs. Organizations that offer evidence-based services will continue to do so, and those that do not, will be encouraged to evaluate their services and take measured steps towards improvement.
  • Develop standards and guidelines for youth and adult service providers so that they have clear benchmarks on how to deliver quality services. 
  • Increase ongoing collaboration between training institutions (e.g., colleges and universities) and current service providers through internships, cooperative learning programs, and collaborative projects. As a result, young professionals entering the field of ASD will have the current knowledge and skills essential to work with this unique population. Likewise, service providers already in the field of ASD will remain current regarding new research and effective interventions.
  • Encourage cross-discipline knowledge exchange and training to enable professionals from a range of disciplines to increase their understanding of ASD and how to serve their clients with ASD more effectively. For example, cross-discipline information exchange may occur between the following professions: career counsellors at post-secondary institutions; physicians and medical students; adult mental health services providers; social workers; psychologists; occupational therapists
  • Explore alternative and complementary methods of in-person service delivery, (including the Internet-based delivery) to increase service accessibility and options, especially to remote areas of the province (e.g., online individual intervention, video conferencing and team consultations). Encourage research and evaluation on the effectiveness of these new methodologies.

 

Recommendations for the Individual and Family:

  • Connect with your local Developmental Service Ontario agency, service providers, and advocacy groups.  Avoid isolating yourself or your family member. The encouragement and knowledge sharing that occurs within the local community are powerful tools to obtain support and information about relevant services. 
  • Embrace a spirit of collaboration with service providers to identify the services and supports that are a priority for you or your family member.
  • Provide feedback on the quality of the services and supports that you receive thereby allowing service providers to continue doing what they do well, while simultaneously facilitating improvement in areas of their delivery models/programs requiring further development.
  • If you are still in high school, participate in developing your transition plan and consider enrolling in transitional services that focus on life skills training, independent living, and employment support.
  • If you are not sure about the quality or the effectiveness of the service(s) or support(s) that you are receiving, talk to your friends, family members, counsellors, or support workers. Share your concerns and seek their help.

 

References:

Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief report: The medical care of adults with autism spectrum disorders: identifying the needs. Journal of Autism and Developmental Disorders, 42(11), 2498-2504.

Bryson, S. E. & Autism Society Ontario. (1991). Our most vulnerable citizens: Report of the Adult Task Force. Toronto, ON: Author.

Clark, E., Olympia, D. E., Jensen, J., Heathfield, L. T., & Jenson, W. R. (2004). Striving for autonomy in a contingencygoverned world: Another challenge for individuals with developmental disabilities. Psychology in the Schools, 41(1), 143-153.

Feldman, M. A., Owen, F., Andrews, A., Hamelin, J., Barber, R., & Griffiths, D. (2012). Health selfadvocacy training for persons with intellectual disabilities. Journal of Intellectual Disability Research, 56(11), 1110-1121.

Graetz, J. E. (2010). Autism grows up: Opportunities for adults with autism. Disability & Society, 25(1), 33-47.

Hendricks, D. (2010). Employment and adults with autism spectrum disorders: Challenges and strategies for success. Journal of Vocational Rehabilitation, 32(2), 125-134.

Krauss, M. W., Seltzer, M. M., & Jacobson, H. T. (2005). Adults with autism living at home or in nonfamily settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49(2), 111-124.

Lunsky, Y., Gracey, C., & Bradley, E. (2009). Adults with autism spectrum disorders using psychiatric hospitals in Ontario: clinical profile and service needs. Research in Autism Spectrum Disorders, 3(4), 1006-1013.

Newsom, C. R., Weitlauf, A. S., Taylor, C. M., & Warren, Z. E. (2012). Parenting adults with ASD: Lessons for researchers and clinicians. Narrative Inquiry in Bioethics, 2(3), 199-205.

Piven, J., & Rabins, P. (2011). Autism spectrum disorders in older adults: Toward defining a research agenda. Journal of the American Geriatrics Society, 59(11), 2151-2155.

Shattuck, P. T., Roux, A. M., Hudson, L. E., Taylor, J. L., Maenner, M. J., & Trani, J. F. (2012). Services for adults with an autism spectrum disorder. Canadian Journal of Psychiatry, 57(5), 284-291.

Stoddart, K.P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., Burnham Riosa, P., & Bradley, E. (2013). Diversity in Ontario’s youth and adults with Autism Spectrum Disorders: Complex needs in unprepared systems. Toronto, ON: The Redpath Centre.


About the authors:

Claudia Accardi, MSW is Research Assistant at The Redpath Centre and a research consultant specializing in survey design and data analysis, proposal and grant writing, the use of technology in counselling, and research in ASD, developmental disabilities, and learning disabilities.

Priscilla Burnham Riosa, PhD is Clinical Research Coordinator at the Hospital for Sick Children, Research Assistant, The Redpath Centre and a Behaviour Consultant supporting children and youth with ASD. She is also a sessional instructor at the University of Guelph-Humber and Brock University. She has worked with individuals with ASD and their families for over ten years.


 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.15. Medication use for mental health, neurological and behavioural problems

By: Kevin P. Stoddart, PhD and Lillian Burke, PhD, The Redpath Centre

This article summarizes some of the information contained in the report entitled: “Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems”.

Medication use in youth and adults with ASD is fairly unexplored terrain; specifically, we know little about frequency of specific medication/class of medication use, dosing practices, service pathways to prescription of medication, and those symptoms that are targeted and monitored in clinical practice (Stoddart, Burke, & King, 2012). However, compared to medication use for physical ailments that exist in ASD (such as gastrointestinal and respiratory problems), medication targeting mental health, behavioural dysregulation, irritability and inattention are better researched. Given we know there is no pharmacological remedy to alter the core features of ASD, here we focus on medications used to reduce mental health struggles, neurological symptoms or disorder(s), and behavioural problems.

Research and reviews of the usefulness of medications examine their ability to target specific behavioural or mental health symptoms commonly associated with ASD (Sloman, 2005; Stoddart, Burke, & King, 2012; Towbin, 2003). A review of research on 13 to 30 year olds with ASD found only eight relevant studies—four were of ‘fair’ quality and four were labeled as ‘poor’ (Dove et al, 2012). A similar systematic review published five years earlier found only five double-blind, randomized controlled trials (Broadstock, Doughty, & Eggleston, 2007). In the absence of multiple, well designed research studies, “...many clinicians rely on results from treatment of other psychiatric disorders (ADHD, schizophrenia, OCD) and extrapolate these findings to the [ASD] population” (Blankenship, Erickson and McDougle, 2010, p. 208). This may be helpful and appropriate, but caution is also warranted as some youth and adults with ASD may have idiosyncratic responses to medication (Burke & Stoddart, in press) or respond optimally to lower doses (Sloman, 2005). As well, individuals with ASD may have difficulty articulating or recalling subtleties in feeling states, in response to questions by their support team.

During the introduction of any medication it is therefore imperative to: (1) start with lower than normal doses of any medication and increase (if appropriate) very slowly, (2) define clear, expected outcomes of medication administration (e.g., reduce anxiety), (3) target accompanying specific and idiosyncratic mental health or behavioural symptoms (e.g., reducing repetitive speech and behaviours), (4) monitor the increase or decrease of these symptoms using narrative medication diaries or specific repeated quantitative measures, and (5) discuss the above regularly with all individuals on the support team (e.g., medical personnel, parents, group home staff, etc.). 

Selective serotonin reuptake inhibitors (SSRIs) are one of the main treatments for depression and anxiety and other mental health disorders in the general population. Examples of SSRIs include Prozac, Luvox, Paxil, Zoloft, Cipralex and Celexa. A study in Toronto that examined medication use found these medications, sometimes combined with others, were frequently used to manage anxiety, behaviour and depression in adults on the autism spectrum (Stoddart, Burke & Temple, 2001). Studies of this group of medications for adults are at an early stage; they are often at an open label, small uncontrolled trial, or case report level (Dove et al, 2012; Stoddart, Burke, & King, 2012) although they are routinely used in clinical practice.

A second class of medications used in the youth and adult ASD population are anti-psychotics. The newer, atypical antipsychotics include Risperdal, Seroquel, Zyprexa, and Abilify. Many of these are used to address behavioural problems, irritability, anxiety, and psychosis. Again, compelling research on the usage, dosing and symptoms successfully treated in youth and adults is early, but promising results have been found for Risperdal, for example (Dove et al., 2012). Third, stimulants have gained increasing use with higher-functioning youth and adults with ASD (such as Asperger Syndrome) since we have recognized that distractibility and inattentiveness may successfully be reduced by medications such as Ritalin, Dexedrine, Adderal, Strattera and Concerta (Sloman, 2005; Stoddart, Burke, & King, 2012,).

Due to the medication sensitivity experienced by many individuals with ASD, and as a result, anxiety about the use of medications, many are drawn to alternative medical treatments.  Some of these have been useful, such as Melatonin, in assisting with sleep issues (Paavonen, Neiminen-von Wendt, Vanhala, Aronen & von Wendt (2003).  However, as many “natural” remedies are sold under different names, and as there are side effects to these (as there are with prescribed medications), we caution individuals to speak to their physician, pharmacist or naturopath to ensure the product they are taking is safe, does not interact with other products, and that they are using appropriate doses.

For our recent study of youth and adults (16+) who had been diagnosed with ASD (Stoddart et al., 2013), we asked if they were prescribed medication and if so, what the medication(s) were. Of 480 individuals, 36.9% were on no medication, 19.0% were taking one, 17.3% were taking two, 9.8% were taking three, and 17.1% were taking four or more. The average number of medications was 1.65 with 63.1% of the sample taking medication for a range of psychological, neurological and medical disorders. There were 12 medications taken by the sample 10 times or more. In order of frequency they included: 124 subjects on SSRIs (Zoloft, Celexa, Prozac, Cipralex and Paxil), 26 on benzodiazepines (Lorazepam and Clonazepam), 22 subjects on anticonvulsants (Divalproex and Tegretol), 19 subjects on Effexor (SNRI), 11 on antipsychotics (Risperdal, Seroquel and Abilify), 10 on Wellbutrin (NDRI), and 10 on a stimulant (Concerta).

Considering that medication is routinely used in the treatment of some of the mental health, behavioural and neurological symptoms related to ASD in youth and adults, research and education on their use in Ontario remains an urgent priority for this underserved group.

Challenges to Developing and Accessing Effective and Relevant Services and Supports:

  • Lack of expertise in the community when prescribing medication for mental health, neurological or behavioural disorders
  • In the absence of research, practitioners may use existing research which does not take into account unique symptoms and responses in ASD
  • Lack of Canadian research on older youth and adults with ASD
  • Lack of medical expertise available, even in specialist centres

Recommendations for the Community:

  • Develop resource listings for those with experience prescribing medications in ASD
  • Create professional networks for clinicians who are faced with medication requests from the public
  • Participate in research on medication and ASD

Recommendations for the Individual and Family:

  • Target specific symptoms (e.g., anxiety, depression) and monitor them closely with healthcare provider(s)
  • Decide with the healthcare team what behaviours may be suggestive of specific disorders in situations where the individuals cannot express their internal symptoms (e.g. repetitive pacing, self-injury, isolation)
  • Have realistic expectations of what medication can accomplish over a certain period of time, taking into consideration that many SSRIs take several weeks to show therapeutic effects
  • Ask your healthcare provider about his or her experience prescribing to individuals with ASD
  • Use symptom checklists or rating scales repeatedly (e.g. for anxiety or depression) to assess the effectiveness of specific medications over time 

References:

Blankenship, K., Erickson, C. A., & McDougle, C. J. (2010). Pharmacotherapy of autism and related disorders. Psychiatric Annals, 40(4), 203–209.

Broadstock, M., Doughty, C., & Eggleston, M. (2007). Systematic review of the effectiveness of pharmacological treatments for adolescents and adults with autism spectrum disorder. Autism: International Journal of Research and Practice, 11(4) 335–348.

Dove, D., Warren, Z., McPheeters, M. L., Taylor, J. L., Sathe, N. A., et al. (2012). Medications for Adolescents and Young Adults with Autism Spectrum Disorders: A Systematic Review. Pediatrics, 130(4), 717–726.

Paavonen, E.J., Nieminen-von Wendt, T., Vanhala, R., Aronen, E. T. & von Wendt, L.  (2003). Effectiveness of melatonin in the treatment of sleep disturbances in children with Asperger disorder. Journal of Child and Adolescent Psychopharmacology, 13(1), 8395.

Sloman, L. (2005). Medication use in children with high–functioning pervasive developmental disorder and Asperger syndrome. In K. P. Stoddart (Ed.), Children, youth and adults with Asperger syndrome: Integrating multiple perspectives (pp. 168–183). London UK: Jessica Kingsley Publishers.

Stoddart, K. P., Burke, L., & King, R. (2012). Asperger Syndrome in Adulthood: A Comprehensive Guide for Clincians. New York, NY: Norton Publishers.

Stoddart, K.P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., Burnham Riosa, P. & Bradley, E. (2013). Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems. Toronto, ON: The Redpath Centre.

Towbin, K. E. (2003). Strategies for pharmacologic treatment of high functioning autism and Asperger syndrome. Child and Adolescent Psychiatric Clinics of North America, 12(1), 23–45.

About the Authors:

Kevin P. Stoddart, PhD is Founding Director, The Redpath Centre and Adjunct Professor, Factor-Inwentash Faculty of Social Work, University of Toronto. For over twenty years, his clinical focus has been children, youth and adults with ASDs, primarily Asperger Syndrome, and the co-morbid social and mental health problems that affect them.

Lillian Burke, PhD is Psychologist at The Redpath Centre in London, Ontario. Her primary clinical activity is assessment of adults who have ASDs. She has a special interest in assessment of and support for women with Asperger Syndrome and other developmental disorders, as well as parents with Asperger Syndrome.


 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.16. Fidget Toys

45 Ideas for Classroom Friendly Fidget Toys

By Bec Oakley

** View or download the attached pdf for visuals examples of these toy types

What are fidget toys?

Kids who have trouble regulating sensory input can easily become distracted, seeking out sensation to either stimulate or calm their nervous system. Fidgeting gives them this input, usually in a way that is disruptive to both them and their classmates - wriggling, biting their nails, doodling, moving about the classroom.

A fidget toy is an object that the student can use to get this input in a less distracting way. They can help improve concentration and attention to tasks by allowing the brain to filter out the extra sensory information.

Who needs them?

Most children can be fidgety at one time or another, but kids with ADHD, autism and sensory integration disorder are particularly prone to be distracted in this way. 

What makes a good fidget toy?

A good fidget toy is one that is both effective at helping the student to concentrate and can easily fit into a classroom environment. That means that it needs to be:

  • Safe
  • Small
  • Quiet
  • Inexpensive
  • Able to be used without distracting others

Choosing a toy that will be a satisfying fidget replacement for your students will depend on their individual abilities, challenges and sensory needs:

  • Which times of the day do they most need one?
  • What are their fine motor skills like?
  • Do they have the hand strength to manipulate the toy?
  • What sensations and textures do they seek out?
  • Which ones do they avoid?
  • Do they tend to put objects in their mouth?
  • Do they like to throw things?

Tips for Using Fidget Toys

Use them intermittently Students can often become desensitized to the sensory benefits of an object, so use it for short periods at times when concentration is most needed or swap between toys over the course of the day.

Try toys with a variety of surfaces Lumpy, squishy, different materials, bits that move

If they’re likely to lose it or throw it... Attach the toy to a ribbon and let them wear it as a bracelet or necklace. You could also attach a retractable cord and clip it to their belt, so they can easily access it when they need to.

Tactile Fidget Toys

  • Sponges
  • Bumpy shells
  • Play dough
  • Origami Packing away toys
  • Bull or alligator clips
  • Unfilled balloons
  • Silly putty
  • Pencil grips
  • Stress balls
  • Bubble wrap
  • Tactile fidget toys
  • Abacus
  • Smooth stones
  • Beads
  • Plush and beanie toys
  • Rubber bands Bumpy piping Paper clips
  • Hide toys in a
  • bucket of sand
  • or rice
  • Tactile fidget toys
  • Bean bags
  • Push puppets
  • Rubber duck
  • Linking rings
  • Newton’s cradle Slinky
  • Bendable dolls
  • Pin art
  • Fill balloons with sand, rice, or play dough using a funnel or squirt bottle
  • Visual fidget toys
  • Snow globe
  • Chewable fidget toys
  • Spinning top
  • Flashlight
  • Sand timer
  • Lava lamp
  • Glow sticks
  • Drinking straws Plastic piping
  • Chewable jewellery

Vestibular & Deep Pressure Fidget Toys

  • Mini trampoline
  • Fill socks to make a weighted lap toy
  • Hacky sacks
  • Wrap an elastic bungee cord around the chair leg for student to pull with her feet
  • Microwaveable wheat heat packs Fingerless gloves with weights attached
  • Toys with a rubber mallet

 www.snagglebox.com

I hope this guide has inspired you to make fidget toys for your students from things you can find around your classroom!

For more tips on kids with sensory needs (especially autism), visit my blog at See you next time!

Bec Oakley

 

 

All images © Microsoft except the following images used under Creative Commons license:

Pin Art from Flickr user jrhugs - http://www.flickr.com/photos/68386867@N05/6221504711/

Hacky sacks from Flickr user ikayama - http://www.flickr.com/photos/ikayama/7497340794/

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.17. Sensory Strategies for Teens and Adults

By Jennifer Cantello Daw and Suzanne Murphy

People of all ages can require strategies that help regulate (stimulate or calm) their nervous systems. “Sensory-seeking individuals often continue to crave input as they get older…sensory-seeking can impact an individual’s work, leisure and self-care. Remember the need for intense input does not automatically disappear just because a person is older.” 1

What are fidget items?

A fidget item is a small object used to provide input into any of the senses and “may help improve concentration and attention to task”. 2 Unless specific items are identified and used in a planned way, people may engage in a wide range of sensory behaviour, that at least can be distracting to others and at worst, harmful.

Guidelines for selecting and using fidget items:

A good fidget item is one that provides the input being sought, helps maintain a calm, alert state and can be used in a variety of environments, while not causing distraction for the user or those around him or her.

Additionally, the item should be safe, quiet, relatively small and portable.

Selection should be based on a number of considerations:

  • The sensations and textures the person seeks out or avoids;
  • When and where the fidget items are most likely to be needed;
  • The person’s fine motor skills and hand strength;
  • The suitability of the item to be used in a public place;
  • Behaviour that can be socially stigmatizing or dangerous (e.g., putting objects in mouth, throwing items, etc.);
  • Items that the person is interested in or motivated to use;
  • Have a variety of items available and continue to expand possibilities. Avoid relying on a limited number of very specific items.

Guidelines for introducing and using fidget items:

  • Identify where the items will be kept (e.g., in a specific place, in their backpack/pocket/desk/locker, etc.), as well how and when the person can access them and when they need to be put away.
  • Pair accepting and using the fidget item with reinforcement.
  • Attach the item to prevent it from being lost.
  • Monitor (or teach the person to self-monitor, when possible), not only the effectiveness of the fidget item in meeting sensory needs but also how socially acceptable it is.

Examples:

Tactile Fidget Items


  • Origami
  • Shells, smooth or shiny stones
  • Worry beads, dolls, stones
  • Jewellery (necklace, bracelet, anklet, digit fidget/ring, earrings, charm bracelet)
  • Paperclip/paperclip chain
  • Rubik’s cube
  • Key chain
  • Paper clips, rubber band
  • Linking rings
  • Small piece of specific fabric
  • Hacky sacks
  • Leather bracelet
  • Visual Fidget Items
  • Pen toppers or pens with moving parts
  • Small sand timer
  • Lava lamps
  • Glow sticks
  • Apps
  • Picture books
  • Video clips on phone/iPad (e.g., waterfalls, car races, nature, etc.)
Oral Fidget Items


  • Hard candy
  • Sour candy
  • Gum
  • Straws
  • Crunchy/chewy snacks available
  • Pen toppers designed to be chewed
Scented Fidget Items


  • Locket with scent inside (necklace or bracelet)
  • Preferred air freshener (e.g., in the car, on a timer)
  • Incense
  • Scented candles
  • Essential oil sachet/pillow
Auditory Strategies


  • Earphones, earplugs, headphones
  • Jewellery/key rings with chime or soft bell
  • Ticking watch
  • Music on iPod
Movement (vestibular) and deep pressure


  • Daily physical activity/physical education class
  • Weight room
  • Heavy backpack
  • Tie a resistance band to chair or desk legs
  • Sit and move cushion
  • Fingerless gloves
  • Clothing that provides deep pressure
Sensory Strategies Across the Day

One of the most effective ways of meeting a person’s sensory needs is to incorporate individualized items and activities into daily routines or to teach them to access activities that provide the sensory input they require, such as:

  • Make favourite scents, colours and textures part of activities;
  • Consider sensory needs in self-care routines (e.g., loofa sponge, scented soap, heavy towel, electric toothbrush);
  • Incorporate exercise and movement routines (e.g. dancing, stretching, yoga) at intensity needed;
  • Allow standing or other alternative seating;
  • Create calming routines before bedtime.

1 Jordan, K.A. (May, 2014). Sensory Strategies for Older Students- Sensory Seeking in Teens and Adults. Indiana Resource Centre for Autism. http://www. iidc.indiana.edu/irca

2 Oakley, B. (August, 2012). 45 Ideas for Classroom Friendly Fidget Toys. Retrieved from http://www.Snagglebox.com/articles

SaveSave
6.18. 5 Tips for Young Adults to Ease Transition into Adulthood

By: Patricia O’Connor

Growing up is a tough job for everyone! But if you have an Autism Spectrum Disorder (ASD) you usually need more time to adjust to the idea (it’s that difficulty with change/transition thing) and more direct teaching to learn what you have to do to live your life as independently as possible. There are no quick fixes but here are a few tips to move you forward into a positive new schedule and a healthy lifestyle once you leave the comfort of that secondary school nest.

WARNING: This information contains an attempt at humour scattered with some sarcasm!

Meaningful schedules are powerful tools to get us moving in the right direction. Get to bed at a decent hour and 3:00 am is not decent. If you want to live in the land of the living you have to be awake during the day since that is when most work and post-secondary opportunities are available. Remedy - reduce video game/computer time, schedule bed and wake times daily and reward yourself for sticking to it! Get some help with this one – I know it is a tough one to break! I work with many nocturnal people who struggle to get back on track!

Get some outside social contacts – and I am not referring to Facebook friends and the question I have is…are they really friends?? Get involved with small groups and/or people with similar interests and get connected with other people outside your home on a weekly basis.

Learning new life skills is something that everyone has to do if they ever intend to live on their own. Here are a few for you to learn while in the comfort of the family abode or by immersion once you move out.

Meal planning, grocery shopping, food preparation and clean up. You can start small with one meal a week and it doesn’t have to be fancy. (Pizza, pasta, grilled cheese and canned soup can sustain life but remember variety is the spice of life.)

Laundry – the whole deal – sorting, washing, drying (yes the wrinkles do stay there until the next time you wash the shirt – if you leave it in the dryer for days!) and last but not least, folding and putting them away. Please don’t leave clean clothes in the basket and start piling your dirty clothes on top!

Shower daily and then learn the skill of shower and bathtub cleaning. (It is hard to believe that this does not occur on it’s own! I think that every young adult thought there was a bathtub-cleaning fairy until they moved out on his or her own. Why not learn the technique in the comfort of your own home under the guidance of a master - mom?)

Public Transportation: How do you get around your town or city? If mom or dad is the answer – time to learn how to use public transportation.

Money management: Where does one begin? With money… yes but, if you don’t have a job yet – start with the first point - meal planning and grocery shopping for your family. It will teach you the fine art of how much food costs and will begin the budgeting process.

Get involved in your community. Never underestimate the value of volunteering your time to help others. Not only does this assist the organization that you are volunteering for but it also provides real experience and builds your resume. It is a definite TWO-FOR (Two for one deal!)

Include daily exercise into your schedule. Anyone who has ever worked with me knows how much I harp about this one… (Blah, Blah, Blah …Pat!) Exercise is important for people with ASD who continually deal with anxiety. Yes - there are many other ways to combat your anxious neurological state of being but begin here. It really works!

Really the most important thing to remember is that being an adult has tons of benefits! So learn the necessary skills, get into a positive schedule and enjoy the ride!


About the Author: Patricia O’Connor is the author of the course and has a Training/Coaching Centre for young adults. She could be called the Director or Founder but thinks a more appropriate title for the work she does is Change Agent!

Integrated Autism Consulting provides coaching and training for young adults with Autism Spectrum Disorders to assist them to live independent, engaged and meaningful lives. One of the programs offered is the Transition to Life course. https://www.integratedautismconsulting.com/transition-to-life-about.html This life preparation course is designed for people with Asperger Syndrome aged 18-28 who require support with the transition into adult life.

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.19. Supporting Success and Safety in Relationships
Smith, L., Szidon, K., & Hedges, S. (2015, June). Supporting Success and Safety in Relationships (Autism at-a-Glance Brief). Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, CSESA Development Team.

Autism at-a-Glance is a publication of the Center on Secondary Education for Students with ASD (CSESA)

Autism at-a-Glance is a series of practitioner and family-friendly documents created by the Center on Secondary Education for Students with ASD (CSESA) designed for high school staff members supporting students on the autism spectrum, as well as family members of adolescents with ASD. The purpose of the Autism at-a-Glance series is to provide a current summary of topics relevant to high school students with ASD as well as practical tips and resources for school and community personnel and family members.
This Autism at-a-Glance was designed to support high school staff, family members, and individuals on the autism spectrum in understanding and supporting success and safety in dating relationships.

Like other teens, many teens on the autism spectrum desire friendships and romantic partners. Due to challenges with social communication, some teens with ASD may have limited experience dating and could benefit from explicitly learning skills associated with successful and safe dating experiences. Teens with ASD may benefit from developing skills in the following areas: basic dating readiness skills, safety skills related to dating, and social skills related to dating. School staff and families both play important roles in supporting these skill areas.

Basic Dating Readiness Skills

  • Identify the purpose of dating. Educators should spend time discussing what dating is. For example, dating is a shared experience between two people and it should involve someone who the teen likes and who likes them back.
  • Establish a shared understanding of the dating process. Teens may need support in understanding a reasonable timeline for dating and how a dating relationship typically develops. For example, a dating relationship usually evolves over time, starting as acquaintances which may develop into a casual friendship over several months, and finally become a romantic relationship.
  • Understand the differences between acquaintances, friendships and dating. Teens should be able to demonstrate an understanding of expected behaviors in different relationships including how to behave with strangers, community members/ helpers, family, friends, and romantic partners.
  • Demonstrate dating readiness. Teens with ASD also might benefit from discussing dating readiness including grooming habits, independent skills, and confidence.
  • Be aware of, and develop a plan for, dealing with sensory sensitivities. Often, teens with ASD have hypo- or hyper-sensitivities to sensory information such as sound, smell, and touch. These sensory differences can impact social relationships and should be discussed to develop strategies for coping in the context of a dating relationship.
Teens with ASD may benefit from developing basic dating readiness skills, safety skills related to dating, and social skills related to dating.
 

Scenario 1: Possible Challenges Associated with Basic Dating Readiness Skills

Sam was interested in dating girls at his high school. He had talked to his teacher and guidance counselor about his disappointment at not ever having had a date. Sam’s teacher and Teens with ASD may benefit from developing basic dating readiness skills, safety skills related to dating, and social skills related to dating.
 

Safety Skills

  • Identify abusive behavior and illegal sexual behaviors and how to avoid them. Teens with ASD are vulnerable to being abused by others. Due to immaturities in social understanding, some teens with ASD might be more likely to behave inappropriately themselves. Teaching teens to identify abusive and illegal behaviors, as well as the “grey” areas to consider, protects the teen with ASD and others.
  • Discuss relationship dangers faced on the internet. Since many teens with ASD have access to the internet and enjoy online communication, it is essential to instruct teens with ASD on ways to avoid danger on the internet.
  • Discuss the consequences of sexual activity. Although sex education is typically embedded in middle and high school education, it is important to ensure that teens with ASD have a clear understanding of potential consequences of sexual activity, including STDs and pregnancy.
Scenario 2: Possible Challenges Associated with a Lack of Safety Skills
Lenore is a fan of manga. She spends a lot of time reading manga online and participating in a manga fan website. She and her online friends often discuss their favorite characters. Lenore’s parents saw that in a recent conversation, Lenore was asked to send a photo to an online friend. Lenore’s parents were alarmed to find that she had shared several photos with a stranger on the fan website. At a team meeting, Lenore’s parents discussed their concerns about internet safety with Lenore’s special education teacher. The team decided that it was critical that they spend instruction time reviewing behaviors in different relationships including how to behave with strangers, community members/helpers, family, friends, and romantic partners. They wanted to make sure that Lenore understood how to protect herself from people who might want to take advantage of her.
 

Safety Skills

  • Demonstrate perspective taking and social communication skills for dating. Teens with ASD need instruction and practice in the conversation skills associated with dating including how to express interest, give compliments, share appropriate information about themselves, and understand the communication of others.
  • Identify social mistakes related to dating. Dating is a complex social interaction for any person, so it is not surprising that teens with ASD might make social mistakes when dating. Educators can help teens to avoid potential dating mistakes by teaching skills such as identifying appropriate places to meet potential dates, evaluating whether a potential partner is interested in dating, choosing where to go on a date, assessing whether a date was successful, and following up on or ending a dating relationship.
Scenario 3: Possible Challenges Associated with Lack of Social Skills
Ren wanted to go out on a date with a girl he knew from his physics class. He remembered from his social skills class that it was important to maintain eye contact with people to indicate that you are interested in what they are saying. Ren was careful to remember to look at Stacy when he was in class with her. He frequently asked her questions about herself and about classwork. The third week of class, Stacy complained to the science teacher that Ren talked to her too much and was staring at her all the time. She considered his behavior creepy and wanted to switch classes. Ren’s science teacher met with Ren and his special education teacher to discuss Ren’s behavior. The special education teacher realized that he needed to help Ren understand the social mistake he made with Stacy and find ways to help him evaluate whether a girl is interested in dating him. The special education teacher also helped Ren to work on his social skills, sharing the importance of reading social cues (e.g., facial expressions, body language) and discussing the fact that too much eye contact can also be uncomfortable.

4 Key Strategies for Supporting Success and Safety in Relationships and Dating

1. Visual supports: visual examples of concepts you intend to teach to support comprehension of target skills.
  • Use photos to provide practice in identifying people’s emotions.
  • Use visual scripts to rehearse key dating concepts like asking someone on a date.
  • 2. Video Models: video examples to demonstrate appropriate relationship and dating behaviors.
  • Use video examples to reinforce social skill development such as correct body language used in initiating conversations or flirting.
  • Use video models to demonstrate and reinforce the steps of a complete hygiene routine.
3. Social Narratives: stories that can provide insight into social situations. Narratives emphasize the important social cues in the targeted social situation. The story provides teens with examples of appropriate social responses.

 

  • Use social narratives to explain the importance of skills like good grooming, being independent, and showing confidence and how these skills can relate to successful dating.
  • Use social narratives to discuss the idea of the “hidden curriculum” to emphasize important dating rules that everyone knows, but no one is taught. This includes assumed rules and social expectations. For example: “When you ask someone on a date and they SAY that they are busy, they often MEAN that they do not want to go out on a date with you, not that you should pick a different time to ask them again. If someone tells you that they are busy, you should not ask them on a date again.”

 

4. Role Play: practicing key social communication behaviors associated with safety and relationships.

 

  • Use role play to demonstrate and practice nonverbal communication behaviors.
  • Use “social autopsy” to analyze social errors committed and choose alternative solutions to correct the errors in the future.

 

Important Reminders

Don’t forget to reinforce correct behaviors!

Make a point of catching teens doing things well. Specific feedback will help teens remember the skills you are working on.

  • “Great job giving your friends enough space. Other people like it when you stand an arm’s length away when you talk to them.”
  • “I noticed that you listened to Kayla when she talked about her weekend and you were able to ask her what her favorite part of the movie was. You showed her that you were interested in what she had to say.”

Check in regularly with teens with ASD and the people that support them.

Developing relationships in high school is a complex process which takes practice.

 

  • Use errors as opportunities to teach new skills.
  • Open communication with families can help identify student needs and reinforce the skills you are trying to teach.

 

Additional Resources

Baker, J. (2006). Social Skills Picture Book for High School and Beyond. Future Horizons.

Davies, C., Dubie, M., Mesibov, G. B. (2012). Intimate relationships and sexual health: A curriculum for teaching adolescents/adults with high-functioning autism spectrum disorders and other social challenges. Shawnee Mission, KS: Autism Asperger Publishing.

Hafner, D., (2005). Healthy and Ready to Work: A Series of Materials Supporting Youth with Special Health Care Needs, S.A.F.E. Safety Awareness for Empowerment. A Training Guide for Safety at Home, at Work, and in Public. http://www.waisman.wisc.edu/cedd/pdfs/products/health/SAFE.pdf.

Laugeson, E. A. (2014). The PEERS Curriculum for School-Based Professionals Social Skills Training for Adolescents with Autism Spectrum Disorder. www.taylorandfrancis.com/books/details/9780415626965

Myles, B. S., Trautman, M. L., & Schelvan, R. L. (2004). The hidden curriculum: Practical solutions for understanding unstated rules in social situations. Shawnee Missions, KS: Autism Asperger Publishing.
Permission is granted to reprint this Autism at-a-Glance if you acknowledge CSESA and the authors of this document. For more information please visit CSESA at http://csesa.fpg.unc.edu/ or www.facebook.com/csesa.asd.

The work reported here was supported by the Institute of Education Sciences, U.S. Department of Education through Grant R324C120006 awarded to UNC-Chapel Hill. The opinions expressed represent those of the authors and do not represent views of the Institute or the U.S. Department of Education.

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
6.20. Facts and Tips for Interacting with People on the Autism Spectrum – Indiana Resource Center for Autism

Organized by Dr. Cathy Pratt BCBA-D, Director, Indiana Resource Center for Autism, Indiana Institute on Disability and Community. Visit our website at http://www.iidc.indiana.edu/irca or visit us on Facebook.Rev. 2015.

According to the CDC (Centers for Disease Control), Autism Spectrum Disorder (ASD) commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The potential impact on our schools and other service delivery systems continues to be tremendous. The strain on families is very real and significant. Costs include health care, education, ASD-related therapy, family-coordinated services, and caregiver time. It is important to note that education services and an array of supports are needed for children and adults on the autism spectrum to live, learn, and work successfully in our communities.

General Tips* to Help Support Someone on the Spectrum

Carefully consider communication needs. If an individual has difficulty communicating wants and needs or requesting help, they may become frustrated or upset. Don’t assume that because an individual is highly verbal that they have skills to cope and adequately communicate when stressed or in unfamiliar situations.

Think about “showing” rather than “telling” when you are trying to teach something new. Presenting the individual with an object, picture, or written information (if he or she reads) will be more effective than just verbally instructing.

Visual supports are beneficial even after the individual no longer seems to “need” them. Many of us need and use them as well. Consider how to transition visual supports to life skills for scheduling, organization, and self-management. In times of stress, these visual supports may be a great support throughout their lifetime. Do not discontinue their use without a conversation with the individual’s team.

Think of individuals on the spectrum as having a limited amount of energy available to them each day. Their energy “reserve” can vary from day to day. What seems like a simple task to us may be overwhelming and exhausting to them.

Individuals on the spectrum will read our emotional level about a situation. Use a calm tone of voice, even in the midst of a behavioral outburst. An over-excited reaction from you may yield heightened emotional responses in those you support. Practice your poker face.

Be consistent with praise and positive interactions. Minimize negative comments and punishment. Individuals with an ASD learn by being told what to do and what is expected in a positive fashion. Telling an individual what not to do does not teach them what to do and frequently makes matters worse. It is easy to resort to negative comments and punishment because you are frustrated and convinced the individual is not listening and/or is choosing to disobey because “they have been told many times and they should know better.” Realize the individual on the autism spectrum is likely frustrated also and cannot figure out “what to do,” especially when emotions are high.

Work with and build upon the individual’s interests. Learn to enjoy his or her unique perspective. Using their interests may be the best way to teach important skills. Be creative. These interests and strengths, when used to help a person learn, can lead to exciting accomplishments.

When trying to extinguish unacceptable behavior, always identify an alternative skill or replacement behavior. And when you are targeting a behavior for change, be sure to choose your battles carefully. Sometimes focusing too much attention on a behavior may actually intensify that behavior.

Social Communication

Individuals on the spectrum often have difficulty with social skills. It is part of the diagnosis. However, simply teaching social skills is insufficient. The goal should be to facilitate relationships and establish connections. Many individuals on the spectrum want to date, develop friendships, and even have families. Their desires are often not so different from ours.

The manner in which an individual conveys a message may not indicate its significance or true meaning. Individuals may use a monotone voice with little facial expression to discuss an item of importance or even urgency. To detect the true meaning of a message, listen to the individual, interpret what he/she is saying literally, and probe.

When trying to foster friendships for teens or adults with ASD, connecting them with people who have similar interests (e.g., attending a Japanese Anime conference or enrolling in a chess club), is likely to be more effective than attempting to teach them to interact around interests that seem more typical for their age group, such as team sports.

Consider teaching the individual how to engage in “small talk” which is a quick way to connect with others about informal topics. One can have a short reciprocal conversation about the environment, a weekend experience, the weather, sports, television shows, or a movie they recently saw. This is a good way to help the individual to start to feel comfortable around various types of people and to learn how to start and end a conversation.

Sensory Processing and Anxiety

Sensory differences can manifest in sensory seeking, sensory avoiding, hyper-responses, and hypo-responses. Carefully consider an individual’s sensory needs when developing strategies to help them adapt to their environment and to respond purposefully. The sensory strategies chosen should match the need, with the ultimate goal being for an individual to respond adaptively and to maintain an optimal arousal level. Consult with an OT (Occupational Therapist), when possible, for strategies.

Anxiety is a game changer for individuals on the autism spectrum. Remember that sensory issues can also manifest as anxiety. Provide opportunities to manage anxiety through providing embedded sensory strategies, such as movement breaks, calming input, and through self-monitoring with visual supports. One example of self-monitoring would be to create or use an anxiety scale (www.5pointscale.com).

Uncertainty creates anxiety that, in turn, reduces the person’s ability to attend and learn. It also increases the risk of tantrums, rage, and meltdowns. Individuals on the autism spectrum need reassurance and information about upcoming events and changes.

Teach a person early in life the difference between private and public places. Private is only in your bedroom with the door closed. All other places are public (e.g., school bus, school restroom, classroom, living room, etc.). This information will be especially helpful as they continue through puberty.

Remember:

The transition process begins at the moment of diagnosis. We are continually transitioning people across grade levels and settings and, ultimately, into adulthood. Be sure to plan for all transitions and begin with the end in mind. What are the ultimate and desired outcomes? Consider the skills and behaviors individuals will need as adults and begin teaching at an early age. Set priorities and make a plan. Identify the top few concerns and needs for your child and your family. Start addressing these concerns and needs, and let everything else wait. While focusing on top concerns, you need to remember to leave time to focus on fun and “typical” activities, whatever those are for your family.

Stay in close contact with family members and physicians about what is working and what is not, especially when individuals are on medications.

Acknowledge and celebrate accomplishments, yours (regardless of your role), family members (siblings, spouse/partner) or the individual’s. For some on the autism spectrum, small steps are a major accomplishment. Be proud and remember that all accomplishments, whether small or large, are important.

* Tips: Remember that each person is different, and specific tips may not apply to all.


6.21. Video Modelling: Creating Videos at Home

CREATING VIDEOS AT HOME: FROM SCRIPTING TO THE FINAL CUT

By: Leslie Cohen and Antoinette Falco

Why Use Video to Teach?

Video modelling is a well-established tool that many parents, teachers and other caregivers have used to help children with ASD learn. Video modelling is a preferred learning modality for individuals with strong visual processing, which includes a majority of people with ASD. Making videos gives family and/or educational team members a chance to practice playing, have some fun, and interact with one another in a positive way.

Video also has some unique advantages when compared to “live” instruction. On video, a child can view consistent samples of complex interactions and events. In other words, videos are less variable than we can hope to be when repeatedly modelling or when more than one person acts as a model. Viewing videos gives children many opportunities to rehearse in private before trying out new skills with peers or in less familiar surroundings. Using close ups and camera angles, we can also highlight critical environmental features and contingencies that a child might miss when looking at a more complex situation.

There are some commercially available, pre-made videos intended for children with ASD, and we’ve included a short list of links to these products at the end of this chapter. It’s been our experience that custom-made videos aimed at particular children can be most effective. We are amazed and excited about the wide variety of topics, approaches and content that parents choose for their own children. Many report that they really enjoyed the experience and that it helped them think of learning from their child’s perspective.

Tips for Making Effective Videos

 

  • Show positive outcomes in the video. (The actor playing the child’s role should receive rewards or access to preferred activities.)
  • Start with actions and interactions already in the child’s repertoire.
  • Limit verbal demands in initial videos.
  • Guide action with a gentle “teaching touch.”
  • Choose a highly preferred model, or one the child has followed or imitated in the past.
  • Avoid talking when the video is taping, except when required by your role (if any) in the video.

 

Is Your Child Ready to Try Video Modelling?

In our practice, we have used video modelling with children as young as three. In order to begin, children should have mastered at least one-step imitation with an object. They should be able to attend from a distance, and have an interest in videos, television or computers.

A Word of Caution

It has been well-documented that children under two years of age should not watch any television, and many psychologists and pediatricians recommend that children should not watch at all until they are three. Early viewing has been linked to delays in learning language and in the development of social, emotional and cognitive skills. (Thakkar, 2006) It has also been shown to increase the risk of attention problems in later life. (Johnson, 2007)

Extensive screen time (in excess of 2 hours a day watching TV, playing video games, or using the computer) is not recommended for typically developing children of any age, and has been linked to problems with violence and aggression, body concept, nutrition, obesity and substance abuse. (Committee on Public Education, 2001) For individuals with ASD, this situation is further complicated by the risk of increased stereotypic behaviour, such as repeated rewinding and viewing very small segments of preferred movies or games. As a general rule, we don’t recommend allowing children with ASD unmonitored access to screen time.

Limiting access to videos and TV may also increase the effectiveness of video teaching by increasing the value of screen time. Remember, we are teaching children to imitate what they see on the screen. For that reason, children should not view violent video games, movies, TV, or cartoons. (Bandura, 1961)

What kind of video?

Videos can help children learn many skills, including independent and interactive play, beginning speech, and conversation. Base your choices on your child’s interests and personality.

Some goals to consider:

 

  • Improving joint attention and imitation – use nonverbal play videos with objects and movement.
  • Supporting emerging speech – make videos with speech sounds, animal sounds, short words and phrases embedded in play sequences or songs.
  • Developing imaginative play skills – model independent or interactive pretend play sequences.
  • Preparing for life events & changes – show what it will be like on holidays, at doctor and dentist visits, in new schools, on vacations, or in new social situations.

 

It’s a good idea to include items that your child enjoys in the video. Props can help children pretend while they give opportunities to practice using toys and other materials in new, more functional ways. Some good choices are objects with cause and effect features, costumes, and actual items from the child’s environment, such as cooking tools. It’s also helpful if the materials lend themselves to the creation of a sequential narrative and are easy to generalize to other toys, people, and settings.

Scripting

Once you’ve chosen your basic subject matter and props, you are ready to write the script. Scripts should be tailored to the individual child in content, length, and language. It is important to have some kind of narrative thread. This could be the demonstration of a sequence (such as getting dressed for school in the morning), the telling of a simple story by setting up a problem and then resolving it, or the modelling of a process (such as preparing a particular dish). If your video includes non-child roles (adults or peers), use them to model more complex language or actions.

Casting

As mentioned above, your video will be more effective if the person on the video the child is intended to copy is someone whom he likes and/or has copied in the past. This person can be a parent, sibling, peer, teacher, or cartoon character (represented by a doll or puppet).

The Shot List

Before you begin shooting, you will need to make a shot list. This is a list of everything you are going to record with your camera. Work from the written script to make your list. Think about what actions, toys, and/or body parts you want to draw the child’s attention to. Wide shots work best when it is important for the child to see the entire body, or when there are a lot of people in the scene. Medium shots are good for recording talking and facial expressions. Close-ups can help children see hands, fingers, lips, writing, drawing, or other close work.

Equipment

The only two things you must have to make a video are a camera and some sort of media (something to record onto). People use a variety of cameras –ranging from VHS, compact VHS, and a variety of Digital Video cameras that record on mini DV tapes, hard drives, memory cards, or mini DVDs. All of these cameras are capable of taping effective videos. If you want to transfer your footage onto a computer for editing, this is most easily done using a Digital Video camera. Inexpensive cameras range in price from about $20 for a used VHS camera (often found at garage sales and thrift stores) to $200 for a new mini-DV camera.

Other optional equipment includes tripods, microphones, and lights. Using a tripod can help make the picture steadier, but a stack of books or similar objects or your own locked forearm will also do. An external microphone can cut down on camera noise and echoes. Extra light will help make your picture clearer.

The Set

You also need to decide where to shoot. The set should be quiet, simple and free of visual clutter. Remove anything in the background that could distract the child when she views the video. When possible shoot the video in a natural setting, such as the kitchen for a cooking video. The location, or one very similar to it, should be available for the child to use when viewing and copying the video.

Lighting

Treat lighting a video shot as if you are taking a still photo. Avoid shooting into a light or window; locate the light source above or behind you. The better the light, the clearer your picture will be. The most important thing is that the viewer can see what you are asking him to imitate. Most consumer cameras sold over the past 15 years have an “Auto” setting. This means that the camera will perform most functions for you, such as focusing the lens and adjusting the aperture to let in the right amount of light. You can help the “Auto” functions perform well by avoiding shooting directly into a light source, framing people tightly (don’t leave a lot of room above your subject’s head or below their feet), and watching out for shadows.

Costumes

Our goal is to get the child to watch people, actions, and expressions and listen to verbal communication. For that reason, actors should avoid wearing plaids, stripes, or checks and stay away from distracting jewelry, buttons, and pins. The color of clothing should contrast with the background so that it is easy to make out the positions of the actors’ bodies. Set up contrasts for feet, face, and hands as needed.

Acting

It is most effective to speak more clearly and slowly than feels natural, and to leave long pauses between chunks of action and/or language. This allows time for children to process what they hear and respond. You should also use clear, slightly exaggerated facial expressions and gestures. As always, tailor what you do to meet the specific needs of the child you are teaching.

Other Useful Elements

You will probably find it useful to write what you are planning to say and do on cue cards. Even with rehearsals, people often forget their lines. Position the cards near the camera, so that actors appear to be looking in the camera when reading them. Making movies is a group activity; in the case of a Hollywood film, making a single movie can sometimes take the contribution of literally thousands of people. Have team or family members act as production assistants by holding cue cards, handling props, or keeping track of the shot list. It makes shooting easier and usually results in a better-finished product.

Steps for Shooting

 

  • Allow the camera to run for a few sections before the “action” begins. Establish a nonverbal cue to get things started. Remember, all the sounds in the environment will be recorded by the camera.
  • If you are planning to edit your footage after you shoot, shoot the entire script from beginning to end using an establishing shot. This is usually your widest-angle shot.
  • Use medium shots to show people talking.
  • Use wide shots to capture large movements.
  • If you are not planning to edit after you shoot, shoot the shots in the order you want the child to see them. Press the pause button between shots. Set up the next shot and then release the pause. Do not use the stop button.
  • Use your shot list to make sure you get all of the close ups and medium shots you need.

 

Computer Editing

Editing your movie with a computer adds an extra step to the video making process. The advantage you get is that you can shoot faster, cut out unintended errors, and add music and special effects.

Video editing steps:

 

  • Import the movie to computer.
  • Select and arrange your clips.
  • Add music, titles, and special effects.
  • Export your finished movie to tape or DVD.

 

Hardware & Software for video editing:

 

  • Computer with a Firewire port and a DVD burner
  • Macintosh
  • iMac, G4, G5, MacPro or MacBook
  • iMovie or Final Cut
  • PC
  • XP Professional or higher compatible desktop or laptop (Minimum Pentium IV 3 GHz recommended)
  • Moviemaker or Adobe Premier

 

Basic Teaching Procedure

 

  • Encourage independence by allowing the child to gather and set up the materials.
  • Remain silent, except when modelling verbalizations (if needed).
  • On first presentation, show the child the video in its entirety.
  • For an early learner, start by showing the first 3 to 6 steps.
  • If imitation occurs immediately, continue rolling.
  • If it doesn’t;
  • Briefly pause the video;
  • Gently guide actions from behind;
  • Use a (soft) verbal or textual cue to facilitate speech.
  • Stop helping as quickly as possible.
  • As soon as a sequence is mastered, try it without the tape; also, try playing in other settings and with other people.
  • When a sequence has generalized, move on to the next sequence.
  • When an entire video has been learned, introduce variety in sequence, materials, and perspective.

 

Make it FUN!

 

  • Find ways to encourage children and let them know they are on the right track.
  • Resume playing the paused video as soon as imitation occurs. The desire to move to the next sequence can be very motivating.
  • Put an enjoyable segment at the beginning and the end of the video.

 

 

VIDEO MODELLING RESOURCES

Articles & Books

Bandura, A., Ross, D. & Ross, S.A. (1961). Transmission of aggression through imitation of aggressive models. Journal of Abnormal and Social Psychology, 63, 575-582.

Charlop, M.H. and Milstein, J.P. (1989). Teaching autistic children conversational speech using video modelling. Journal of Applied Behavior Analysis, 23, 275-285.

Committee on Public Education. Children, Adolescents, and Television. Pediatrics. 2001 107:423-426.

Johnson, J.G., Cohen, P., Kasen, S., Brook, J.S. Extensive television viewing and the development of attention and learning difficulties during adolescence. Arch Pediatric Adolescent Medicine. 2007; 161(5): 480-486.

Krantz, P.J., MacDuff, G.S., Wadstrom, O., McClannahan, L.E. (1991). Using video with developmentally disabled learners. In P.W. Dowrick, Practical Guide to Using Video in the Behavioral Sciences (pp. 256-266). Oxford, England: John Wiley & Sons.

LeBlanc, L.A., Coates, A.M, Daneshvar, S., Charlop-Christy, M.H., Morris, C. & Lancaster, B.M. (2003). Using video modelling and reinforcement to teach perspective-taking skills to children with autism. Journal of Applied Behavior Analysis. 36, 253-257.

Neuman, Lisa. Video Modelling: A Visual Teaching Method for Children with Autism. Willerik Publishing. http://ideasaboutautism.com/video.html

Sherer, M., Pierce, K.L., Paredes, S., Kisacky, K.L., Ingersoll, B. & Shreibman, L. (2001). Enhancing conversation skills in children with autism via video technology. Which is better, “self” or “other” as a model? Behavior Modification, 25, 140-158.

Taylor, B.A., Levin, L. & Jasper, S. (1999). Increasing play-related statements in children with autism toward their siblings: effects of video modelling. Journal of Developmental and Physical Disabilities, 11, 253-264.

Thakkar, R.R., Garrison, M.M. & Christakis, D.A. A systematic review for the effects of television viewing by infants and preschoolers. Pediatrics. 2006; 118(5): 2025-2031.

Pre-Made Videos

Fitting in and Having Fun: http://difflearn.com/prodinfo.asp?number=DRV%20108

Model Me Kids: http://modelmekids.com

Watch Me Learn: http://www.watchmelearn.com

Used with permission. Leslie Cohen and Antoinette Falco, 2012.

6.22. Four Tips to Get the Most Out of Pokemon Go for Your Child with Autism

By Maureen Bennie

As you all know by now, Pokemon Go has become this summer’s sensation. Not only is the game making headlines as being beneficial play for those with autism, but the game’s creator has autism himself. Fifty year old Satoshi Tajiri (from Japan) almost didn’t’ graduate from high school because of his obsession with bugs and video games…an obsession that later turned into the multi-billion dollar Pokemon franchise.

How Pokemon Go can be used to help those on the spectrum

This game takes the original idea of catching Pokemon creatures (imaginary animals with different kinds of “powers”), and takes it outside into the real world. Tajiri has created a FREE app for your mobile device that allows you to walk around your city, town, or neighbourhood, while looking for virtual creatures to appear on your phone. The game is map-based, and challenges the user to find PokeStops which have been created globally by using local landmarks in each community. Personal interactions with other Poke-users are encouraged through the technology at the various PokeStops.

While there have been a number of stories of the pitfalls of walking around while staring intently at your phone, there have also started to be heartwarming stories of people with autism and anxiety finding a drive or purpose to get out into the real world and practice their life-skills. Many people with autism have a fascination with technology; in fact, the hard part is to get them away from it, outside and interacting with others. This app has the best of both worlds. It is showing so much success that it is even being used in some schools for children with ASD. Below are some tips that outline how best to use this new game safely and to the most benefit.

1) Supervise

This might seem obvious, but going with your child/youth while they explore is essential. Either you or a caregiver should be around them while they explore and “catch’em all”. Many PokeStops are near bodies of water, or require crossing busy streets, etc.…

2) Encourage your child to come with you on errands by giving them a chance to play

One of the best ways to supervise is to offer your child/youth a chance to play in environments where you have errands to run. This allows the person with autism to be included in day-to-day activities while doing something that is engaging for them. There will be opportunities to connect with other players, and give your child/youth a chance to practice social interactions with people who are interested (and maybe just as fascinated) with the game as they are!

3) Take the opportunity to teach road safety and stranger danger

This app can create the perfect platform to highlight some basic life skills such as road safety and “stranger danger”. Making these lessons an integral part of the gaming experience is one of the best ways to learn. Help your child decide who to speak to, and what is appropriate when dealing with strangers.

4) Have some fun bonding with your child doing something you can both enjoy

Let’s face it, this app is fun! Sometimes it can be hard to find mutual points of interest with our children. We might not be able to get consistently excited over patterns of floor tiles, the many names and levels of Jedi Knights, or dinosaur types, but this app provides a game you can both enjoy. The Pokemon animals are cute and the game is designed to provide lots of entertainment for all ages.

Summer is the perfect time to explore an outdoor activity that offers a great learning platform wrapped in a fun game.

For more articles written by Maureen Bennie, go to www.autismawarenesscentre.com.

6.23. Riding on the Autism Spectrum

No. 121, June 2017

By Shona Casola

Taking public transit can be challenging for anyone, but can be even more so when a rider has difficulty with waiting, loud noises, strong smells, or confined space. This is the reality for many individuals with Autism Spectrum Disorder (ASD) who ride school buses and city transit routes every day.

ASD is a life-long neurological disorder that affects the way a person communicates and relates to the people and world around them. ASD can affect behaviour, social interactions, and one’s ability to communicate verbally and non-verbally (through gestures, facial expressions or body language). ASD is a spectrum disorder, which means that, while all people with ASD will experience certain difficulties, the degree to which each person on the spectrum experiences these challenges will be different. Individuals diagnosed on the autism spectrum can experience difficulty with both social communication1 and restricted and repetitive patterns of behaviour2 in varying degrees of severity. (American Psychiatric Association, 2013). This can result in difficulties with new environments, new people, unfamiliar routines, processing verbal and non-verbal communication and navigating unwritten social “rules” that most of us can intuitively follow. In some cases, individuals may experience anxiety or increased sensitivity to sensory information and as a result, may engage in self-regulatory behaviours as a way to cope with and manage this stress or anxiety.

As drivers, educators and bus company managers, there are many things you can do to help make the ride a smooth one for individuals on the spectrum. With back-to-school in mind, I will focus this article on children riding the school bus; however, many of these strategies may be applicable to those of all ages riding on other types of transit as well.

  1. Have an assigned or regular seat. Individuals on the autism spectrum typically thrive on routine and consistency. Since the predictability of a regular seat can help to calm anxiety, place the student in a location that is least intrusive to their sensory needs. A designated spot can also help facilitate social skills as they may be located around the same children daily and might begin to interact and build relationships. 
  2. Be conscious of their sensory needs. Noises, smells and/or the temperature on a bus may be challenging to a rider on the autism spectrum. The individual may also be very sensitive to touch and may appear to overact if someone lightly touches them, or bumps into them in the aisle. While there is little you as a driver can do to prevent smells, sounds, crowding or to control the temperature, it is important to acknowledge the potential impact these variables can have on your rider. Imagine trying to concentrate on parallel parking the school bus while listening to nails scratching on a chalkboard. The regular sensory information on your bus may be this intrusive to someone on the autism spectrum. Knowing this can help you approach them with a greater degree of understanding, should they begin behaving inappropriately on your bus.
  3. Post visual supports and a list of bus rules. Many individuals on the spectrum have difficulty processing verbal information, however, when information is presented visually, they are better able to understand and make sense of instructions and expectations. Working with parents, caregivers, and educators, you can learn to use a calming routine or visual support that may be helpful to your rider on the autism spectrum. These routines and expectations can be posted at the front of the bus (where they will be of benefit to all riders) as well as in the individual student’s seat or in another place that you feel would be helpful for them.
  4. Words can be tricky to process. While you can put up visual supports for things you can predict, there are times when verbal instructions are still necessary. In this case, it is important to acknowledge that some people diagnosed with autism need short, clear sentences, particularly when they are upset. Being calm, clear and direct with your instructions (such as “sit down” rather than “please take your seat like you’re supposed to”) can be beneficial. It is also important to provide time for the individual to process the instructions, so try to count to five or ten in your head before repeating your instruction. For some people, it can take much longer than ten seconds to process and respond appropriately to the instruction and adding words, such as “I said, SIT DOWN”, may delay processing time even more because there is new information for the child to consider. In an emergency situation, be as calm, brief and clear, as possible, with your instructions, while balancing your responsibility to get them out safely.
  5. Routines and changes. With regular riders, the route itself can become part of their routine. There can be things along the way that become comforting to see, such as a particular building, or counting the number of fire hydrants the bus passes. Construction, collisions and route changes can disrupt this. It is important to give riders as much notice as possible about these changes and to recognize that there may be an upset reaction as a result. Having comfort objects, toys or electronics that keep students busy during the ride can help with this frustration when it does occur. Connect with parents, caregivers, or educators to arrange for comfort objects to travel with your rider.
  6. Do not force eye contact. For many of us, eye contact is a sign that people are listening to what we are saying. For many people living on the autism spectrum, however, looking a person in the eye can mean they are unable to listen and focus on what you are saying because it is too distracting. Rather than insisting on eye contact, you can ask individuals to repeat back to you what you have asked if they are able to, to confirm they have heard you. Asking them to say it in their own words can also help to confirm they have understood you.
  7. Behaviour. When riders act out this can be very disruptive and distracting for the driver and other passengers. Individuals on the autism spectrum may have times when they experience sensory overload (too much sensory input) or stimulation, when disruption to their routine has occurred or when they are having a difficult day and these experiences can lead to unwanted behaviour on a bus. When this happens, try to remember that their behaviour is a form of communication that is telling us about the difficulty they are experiencing. When you need to intervene; calm, clear instructions are best, paired with any visual supports you may have available. Sometimes it is as simple as writing your expectation down on a paper and giving it to the student. It is also important to recognize that individuals may behave or respond in ways that are unexpected for someone their age.
  8. Build relationships! When you make a point of remembering a person’s name, a favourite item or special things they have told you, they become more comfortable and this can help the ride go more smoothly. Relationships are also important to establish with parents and caregivers, as well as siblings who may also ride on the bus. Building relationships is not always easy but is well worth it!

By working to make riding the school bus or public transit easier for individuals on the autism spectrum, you make life easier for the people who care for them as well. You create opportunities for people to have equal access to their community and to feel included. This is invaluable.

 

[1] Social communication challenges refer to persistent difficulty with social interaction across multiple contexts and include frequent struggles with understanding another persons’ perspective, non-verbal communication, and difficulty establishing and maintaining relationships. 

[2] Restricted and repetitive patterns of behaviour, interests or activities can include motor movements, insistence on sameness and inflexibility, highly restricted passions frequently in uncommon interest areas and sensory sensitivity.

 

7. 5 Recreation, Leisure and Health
7.1. Gaming Console Setup and Considerations for Individuals with ASD

Tip Sheet                                  

 
André Bentivoglio, teacher, specialist in technology in the classroom and special education

Congratulations! You’ve decided to make the plunge and purchase a gaming system for your (inner) child. Currently there are three popular gaming consoles: Sony PS3, Nintendo Wii (rumored to be succeeded by the Nintendo U around the 2012 holidays) and the Microsoft X-box. While each unit has its pros and cons, each unit seems to leapfrog the other year after year. 

Nintendo started the “movement” contest by releasing the Wii with Wii remotes (also called Wiimotes). These wiimotes allow players to participate in most games by moving more than their thumbs. Thanks to some sophisticated sensors in the Wiimotes the console can detect 3 dimensional movements of the joystick and thus the player. For the first time in the home video game market, a player’s swing of a racket truly mimics a player moving his arm rather than simply pressing a button. 

Microsoft later released the X-box Kinect for its console. The Kinect has dual cameras that watch the player in 3-d creating an image of him while tracking the position of his head, hands, feet and torso. This tracking device allows the player to control his avatar (on screen game character) with actual body movements.

Sony’s response to the movement party was the release of an “eye”. A single camera device that watches glowing orbs attached to the ends of the joysticks to judge the players movements. 

Your decision on which console to purchase may include such considerations as:

  • screen resolution (both the PS3 and X-box can display an HD picture in 1080p, the Wii cannot),
  • availability of a blue-ray player (Sony has this capability, while neither the X-box nor the Wii does, although some ingenious users have found ways to modify their consoles to enable this feature while simultaneously voiding their warranties),
  • the ability to connect to your home network and stream photos and movies,
  • the ability to play on-line,
  • or simply price (Nintendo Wii is the least expensive).
Regardless of which console you choose, the following are a few basic tips to help you set up a gaming friendly space: 
 
Location:

  1. Basement is best: some active games encourage you to jump, lunge and run.
  2. Space: You want at least a 10’ to 15’ (preferably more) arc of space in front of your TV so that you’re not bumping into furniture or other players.
  3. Distance: Don’t put it in the same room as the fine china.
TV size:

  1. 46” widescreen at a minimum. This allows you to truly see everything in the game. The consoles are able to take advantage of the widescreen and fill it entirely, sometimes with minute details.
  2. If your budget allows, consider 55” or larger as this will enhance the overall visual gaming experience. TV’s are fairly inexpensive now. If you’re not too choosy, a 60” HD 1080p TV can be had for under $1000. (Retailers will use any excuse to put units on special: Christmas, Super Bowl, Father’s Day and yes, even Mother’s Day). Besides, we are all visual learners. Don’t you want your child to have every advantage possible as he frags the baddies?
  3. Some games may seem very bright especially on new televisions. You may need to dim the overall brightness to a level the intended players can tolerate. Most new televisions have a gaming mode that is in fact brighter. Do not hesitate to change the settings. In most cases, you can create custom settings. You can then rename these settings according to a player’s name.
  4. Some games have bright, flashing lights and quick moving imagery. While this may seem exciting and draw and maintain the player’s attention, it is important to monitor each individual’s response to this visual input. In some rare circumstances, flashing lights have induced epileptic seizures. 
Sound:

  1. While not absolutely necessary, a decent sound system adds to realism of the games. Hearing the horse neigh or the crowd cheer can add to that positive feedback.
  2. A good-subwoofer creating that deep bass adds to the rumble of a car’s engine or a jet’s thrust. (It can always be turned down or muted if sound is an issue).
  3. If a player is sensitive to sound, simply turn down the volume or have everyone wear hearing protection.
Games: 

  1. Rent a game: If possible, rent the game that interests your child before purchasing it (or try to borrow it from a friend). This will allow you to be sure that it meets your expectations. There is nothing worse than finding a game boring after spending $75 on it.
  2. M for mature. Be aware that not every game will be appropriate for your child. The games with the “mature content” sticker are not for the faint of heart. As with movies that are “R” rated, they may have colorful language or depict scenes that are inappropriate for your child.
  3. Try to match gaming interests for the new user. It may take a few attempts before finding one that “clicks”. Many games are based on sports, others on movies such as: Batman, Star Wars, Harry Potter to name but a few. Sports games are popular as well as precision is not necessarily required to succeed.
  4. Be sure to check for warning labels on the reverse side with respect to flashing lights. If unsure, ask the clerk if there is a demo available in store to try. Most in-store demo consoles have a variety of games that can be sampled. As an alternative, you may be able to download a portion of the game directly to your home console. These demos will however be limited in terms of game play.

Some additional benefits:

Gaming allows teaching of some essential social skills, while having fun:

  1. Sharing (Turn taking): Turn-based games provide opportunities for each player to practice waiting for their turn, depending on the game.
  2. Cooperation: Some games encourage players to cooperate by requiring the players to work together in order for the game to continue to the next level or play area. For example, they may need to activate certain doors or levers simultaneously. 
  3. Modeling: You can take the opportunity to model certain movements. As mentioned above, most people on the autism spectrum are visual learners. Take the opportunity to demonstrate a good stance or a good swing. You can be the “how-to” person and create a positive relationship. Some games, such as “Wii Fit” instruct participants on how to maintain a certain body position by modeling it for them on screen. Some games offer more advice than others.
  4. Sportsmanship: This is a great opportunity to model positive social behaviour. Encourage others with expressions such as: “good shot”, “nice hit”, “that was cool”, “try it again”. After a period of time, the other players may start to use these same expressions. 

Accessories:

  • Skins: also called wraps, are available for the consoles themselves or the controllers. These are similar to cell phone cases and can protect your investment by giving them a rubber casing. (Important as they will often be dropped).
  • Sports packs: you can snap a Wiimote into a plastic tennis racket or a golf club thus adding to the game’s illusion. (Warning: be sure to attach the safety strap to the player’s wrist as a flying Wiimote can quickly and easily damage a TV).
  • Wii Fit balance board (exclusive to the Nintendo Wii) allows the user to participate in yoga classes or ski competitions by shifting his or her body weight on the balance board.
Last but not least, remember to have fun!
 

Keywords: play, leisure, recreation, family


 

 


 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
7.2. Yoga for Relaxation and Flexibility

Tip Sheet

André Bentivoglio, Teacher, specialist in technology in the classroom and special education

 
Say it with me… mmmmmmm [relaxing meditating hum]. You’ve decided to try yoga at home.  That’s great!  Yoga can increase flexibility, decrease the chance of injury and allow for quicker recovery from strenuous physical activity.  Over time, yoga can also contribute to feelings of calm and relaxation. Things that benefit everyone! Your inner Zen will thank you. 

Having said this, it may take awhile to convince your significant other, children or child with autism to persist through an entire session.  This tip sheet will help you choose equipment in order to create a suitable environment for doing yoga at home.

Location Setup

  1. A carpeted floor (everyone will likely be barefoot). An adjacent fireplace or indoor waterfall instantly ratchets up the Zen meter (as long as your child is not distracted by or attracted to these).
  2. Space: You want at least 8’ x 8’ if doing yoga alone.  8’ x 12’ for doing yoga with your child.  Ideally, you want to ensure at least a body length distance away from others or furniture. This helps ensure safety should someone not instantly master a balance pose and fall as a result.
  3. Lighting should be dimmed.  Diffuse or dim the lighting in order to darken the room.  This reduces unnecessary sensory input, and creates a calming environment.  Consider using battery-operated candles.  They give off just enough light and are of course fire-safe.

 

Clothing and Equipment

  1. A large screen TV allows everyone to see the instructor’s poses with greater detail.  Try to use the largest one in your home (a room used as a home theater would be great, doing double duty as a home yoga area).
  2. A good quality yoga mat.  Avoid the use of exercise mats, as they are often too spongy for yoga.  A good quality yoga mat helps prevent feet from slipping and is better for maintaining poses.  It will also not curl up or slide on the floor.
  3. Yoga blocks.  These are usually constructed of wood or foam.  They are mostly used as an option when one cannot bend far enough to reach the floor or balance adequately. They are also good for beginners.
  4. Yoga clothing.  No, one cannot wear designer jeans.  This is, however, an opportunity to wear yoga pants for their intended purpose.  Clothing should be snug but not constricting.  Yoga clothing should bend and stretch with body movements and ideally wick away moisture (sweat).
  5. Try to diminish ambient noise while doing yoga.  It can be very distracting to have a loud dishwasher or washing machine thumping and thrashing away in the next room.
  6. Turn off cell phones to help focus on the yoga.  Putting phones on vibrate is not enough as they will still cause distractions and it’s only natural to want to see who is e-mailing, texting or calling. 

 

What Kind of Yoga and Where to Get It:

  1. There are many different types of yoga with exotic sounding names: bikram, hatha and kundalini to name a few.  My suggestion: beginner.  You want to make first experiences pleasant and achievable.  Avoid choosing a program that is so difficult it becomes overwhelming.
  2. Libraries have vast collections of yoga DVD’s.  Borrow a few at the same time.  Don’t like the first one? Pop in the second.
  3. Cable/satellite providers.  These companies have put a lot of resources into their “on-demand” services.  Sometimes, they include “yoga” programs.  Some are free while others are pay-per-use.
  4. Online sources such as “iTunes” have yoga programs available to download and project in your home theater or simply on a laptop.
  5. Nintendo Wii and Microsoft X-Box Kinect both offer yoga on their gaming consoles.  These are quite interesting as they rely on input from the user.  The Wii requires the use of the “Wii balance board”, while the X-box uses the Kinect sensors to measure body positions.  Either of these options may be a bridge to help convince your child to join in.
  6. Regular TV.  Many TV stations broadcast yoga classes for home use as part of their regular schedule.  Can’t wake up at 6 a.m.? Set the VCR or PVR and play it back at your leisure.

 

How to Encourage a Reluctant Child or Youth to Participate in this Activity:

  1. Prepare him or her ahead of time for the activity by placing it on a visual schedule. You can also incorporate a mini-schedule to show the poses or exercises that will be done during the session.
  2. Invite him or her to participate in choosing the type of yoga, length of activity and time of day to conduct the exercise.
  3. Encourage him or her to help prepare the room, i.e. shutting off the lights (or dimming to their comfort level), closing the blinds, laying down the mats, etc.
  4. Allow him or her to select comfortable clothing.
  5. Start with a short time period and gradually increase the amount of time to help ensure success.  A general rule of thumb is ‘start low and go slow’.
  6. Break down a pose into steps (task analysis) and teach one step at a time to facilitate learning.
  7. Make the time a pose will be maintained concrete by counting out loud or showing fingers. Provide physical prompts if needed to achieve success. 
  8. Incorporate the use of props to help teach certain skills. Yoga blocks are mentioned above. You may also consider using scent jars or stickers and a feather, cotton ball or bubbles to teach deep breathing.
  9. Consider using a visual countdown timer (an iPhone timer works well but be sure to put your phone in airplane mode to avoid being distracted by the incoming text message). The timer could signal that the desired length of time performing yoga exercises has ended. Your child can now advance the DVD to the end where he or she can enjoy the relaxation poses, lying on their back breathing slowly and calmly.
  10. Remember to include reinforcement for trying out the yoga and for sticking with it.

 

As with any new physical activity, it is important to exercise caution when starting out.  Should you or your child have any pre-existing medical concerns or physical restrictions, consult with your health care professional before starting a yoga program. A good rule of thumb for anyone participating in a fitness activity is that if a movement is painful, re-adjust, slow down or stop altogether.  Identify how your child can communicate that a movement is uncomfortable or painful. Consider consulting an expert before attempting that movement again as modifications may be required.

Above all, don’t forget to relax, enjoy and “Namaste”.

 


 

Keywords: recreation, leisure, relaxation, health, coping

 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
7.3. Accessing Inclusive Personal Training Programs for Young Adults with Autism: Strategies for Overcoming Barriers

Background

In Canada, studies have shown that only approximately 3% of individuals with a disability are actively engaged in organized sport.[1] However, educators and others are becoming increasingly aware of the benefits of personal fitness for students with special education needs and typically developing children alike.[2] And some are convinced that physical education has a central role to play in building self-esteem and social skills that in turn lead to a more active and inclusive lifestyle for young people with autism.

Although more and more young adults with autism are showing interest in accessing personal fitness opportunities, there are few programs outside school settings that are accessible. In addition, few fitness professionals are systematically trained to include people with disabilities in their fitness programs. And few Day programs for adults with disabilities offer inclusive fitness activities.

This article is therefore intended to raise awareness of barriers that people with ASD face in accessing fitness opportunities, offer strategies for designing individualized fitness programs, and suggest the need for future research that explores the impact of personal fitness on people with autism and their communities.

Identifying and Understanding Fitness Barriers

Why do we need to identify and understand fitness barriers as a first step towards overcoming them? Identifying and understanding barriers helps to clarify difficulties experienced by disabled individuals with disabilities who are becoming self-determined and who wish to be part of a particular community.

Sensitivity to barriers experienced by adults with ASD who are accessing fitness opportunities helps caregivers, developmental service workers, and fitness professionals design and implement useful programs.

Emergent data from case study research by the authors suggest that common obstacles to fitness include:

  • environmental accessibility
  •  socio-behavioural; and
  •  economic barriers.

Environmental Accessibility Barriers

Programmatic

The existence of an ASD does not automatically place an individual at risk for physical activity participation. Fitness professionals are able to provide services to “apparently healthy” individuals (individuals with no known medical condition which place them at risk for physical activity participation). Unfortunately, misconceptions about disability and ASD and its relationship to health status remain commonplace. Through awareness and initiative, fitness professionals can play a significant role in increasing the involvement of individuals with ASD in regular physical activity programs.[3] But first they need to overcome the possible misconception that autism is a disease and that only health care professionals are qualified to work with people with ASD.

Physical Accessibility

Individuals with ASD have many of the same strengths and weaknesses that individuals without ASD have when it comes to cardio and strength training abilities. Along with other groups of individuals, such as older adults and those with physical disabilities (e.g., CP, MS, and amputations), people with autism may need adapted equipment to accommodate physical impairments, i.e.:

  • low weight machines and dumbbells;
  • medicine balls with hand straps;
  •  and other universally-designed equipment (e.g., recumbent elliptical ) 

When seeking out a personal trainer, a fitness class, or a fitness facility, it is important that parents and professionals know the right questions to ask to clarify that a particular person or environment is going to meet the needs of the individual with ASD and that the requisite equipment or adaptations are made.

Sample Questions

  • Can my personal assistant attend the facility with me without extra charges?
  • What are the busiest times for the facility? What areas are most crowded and when?
  • Does the facility provide orientation and instructions on how to use equipment?
  • Have any of your personal trainers/fitness specialists supported an individual with ASD or other disability?

For a list of additional helpful questions see http://www.ncpad.org/exercise/fact_sheet.php?sheet=359&view=all .

Socio-Behavioural Barriers

Misconceptions/ Stereotypes and Attitudes of Others

Although fitness professionals might believe that ALL people are being encouraged to be active, stereotypes and misconceptions about autism may impede potential clients with ASD from accessing fitness facilities. And former teachers, caregivers, and adults with ASD themselves may not realize that special fitness needs can be accommodated at public facilities.

For individuals with ASD, participating in a fitness program is often a new experience. New experiences hold social and behavioural challenges, such as:

 

  •  meeting new people;
  •  negotiating a new setting; and
  • participating in a new setting with others.

 

Social accessibility for clients with ASD may take time, but the key to accommodation is flexibility on the part of fitness professionals and others at the fitness facility.

Individuals with ASD who experience behavioural outbursts that include screaming or vocalizing can cause tension and apprehension amongst the trainer, support staff and also other clients or members present at a gym. It is important for fitness facilities and professionals to be open to allowing knowledgeable support workers or caregivers into their facilities to help create optimal outcomes, especially at the beginning of a program when routines are being established. At times it may mean that a person with ASD has two support people and the personal trainer working with him or her simultaneously.

For many individuals with ASD it is important to develop routines, and these routines may need to be established gradually, i.e., shorter, more frequent visits to the fitness facility may be necessary. Further, fitness professionals need to be patient, flexible and satisfied with incorporating small changes within established routines to promote successful training.

The Ontarians with Disabilities Act passed in 2005 makes Ontario the first jurisdiction in Canada to implement and enforce mandatory accessibility standards which apply to both the private and public sectors. Many businesses are making efforts to become accessible; however, there needs to be a corporate buy-in by the fitness industry if people with disabilities are to feel they have opportunities for fitness in an inclusive atmosphere.

Economic Barriers

Dependence on Supporters

Many adults with ASD remain dependent on their caregivers (parents or other supporters) for basic needs in many spheres of life, from housing to mental health. This reality means that caregivers are called upon to orchestrate opportunities for fitness. Adults with ASD who live in rural areas face different challenges from those in urban areas, where there are more choices of transportation systems, fitness facilities, and trainers.

Systems Issues

Associated with the dependence of many adults with an ASD upon caregivers is the need to advocate for funding to cover the costs of participation in fitness training. Unless caregivers approach officials about using individualized funds to promote fitness, this area of health and social inclusion is largely ignored.

Persons with an ASD who require intensive supports incur higher costs than other disabled persons. Such costs include:

  • hiring support personnel to mediate a gym membership and bridge communication with a personal trainer; and 
  • arranging and paying for transportation to a fitness facility (i.e., especially if the person with an ASD lives in a rural area)

To convince officials to allow government funding to be used for fitness needs, persons with an ASD themselves, their caregivers, and supporters need to raise awareness of the benefits of fitness.

For example, Ratey (2008) reports research linking aerobic exercise with improved brain function; Hillman, Erickson and Kramer (2008) suggest that physical fitness improves cognition in school children; and, research on the links between physical fitness and mental health has been active for decades.[4]

Strategies for Designing Inclusive Fitness Programs

The suggestions below offer starting points for creating inclusive fitness programs at home, in fitness facilities, or in community groups. Although the components listed below are not exhaustive, we believe that the keys to developing viable programs include acknowledging the role of caregivers in initiating and sustaining programs, identifying assumptions about disability, and aligning assumptions with practices. For more information on strategies for accessing inclusive programs, we recommend the following web sites:

www.allabilitiesfitness.ca

www.topshapeinc.com

www.ncpad.com

www.ala.ca

http://paralympic.ca/

Role of Parents/Caregivers

  • Key to seeking and creating an environment of inclusive fitness
  • Good role model
  •  Initiate community relationships, friendships, access to associations
  • Participate in group exercise
  • Staff at group homes or in day programs must be committee
  •  Seek caregiver/staff workshops
  •  Understand benefits of fitness
Attitudes

 

  •  Teach personal trainers and fitness instructors the social model of disability (i.e., acknowledge and itemize socio-cultural barriers, and understand that disability is distributed within a social structure)

Individualize for Success

  • Use positive terminology
  • Never underestimate a client’s intellect
  • Address specific behaviours and functional limitations by evaluating equipment, environment and teaching exchanges
  • Make programs accessible for clients, i.e., include picture schedules, and provide adapted equipment
  • Offer alternative formats for instruction
  • Use repetition
  • Build in positive reinforcement

 

Exercise Guidelines

  • If necessary, obtain physician consent
  • Understand effects of medication
  • Provide supervision
  • Label machines with pictures
  • Allow time to master a skill
  • Use prompting and task analysis
  • Consider length of activity
  • Model technique
  • Use video to demonstrate
  • Start slowly and increase frequency, intensity, time, type 
  • Teach to practice safety

Find Model Programs

  • Examine existing programs and practices by visiting local programs while they are in session
  • Tailor new programs on such models, but adapt these for specific environments, individual needs, and logistical constraints
  • For some it is helpful to start a home-based program with a personal trainer who is then able to support skill transfer to a new setting, such as a gym or a community program

Future Research

We believe that all people with ASD benefit from personal fitness, and that it is possible to develop inclusive programs that accommodate a diversity of people with ASD. However, systematic research is needed to track general physical activity levels and fitness experiences of adults with autism, and the impact of personal fitness on people with autism of varying ages, interests and abilities.

We also believe that an emphasis on physical education during the high school years needs to be represented in transition planning for young adults. We argue that it is important to take full advantage of school-based resources in the fitness domain to plan for the personal fitness needs of adults with autism who are leaving school. Research is needed to answer the question of whether transition plans that include fitness programs are in fact carried out beyond school. Further, if training does continue in adulthood, fitness programs that are implemented require evaluation.

Finally, fitness professionals require training to be able to include individuals with autism in public and private personal training settings. It is imperative that professional training programs in Education, Developmental Services, and in the Fitness Industry include adapted and inclusive fitness in their certification curricula.

NB. Since 2010 Dawn Campbell and Karin Steiner have been collaborating to provide access to personal training and fitness programs to adults with autism and other disabilities. Together the authors have developed case studies of the fitness experiences of adults with a range of developmental disabilities. This article emerged from conference presentations to the OADD’s Research Special Interest Group (RSIG) in April, 2012 and IMFAR in May, 2012.

To view video of a young man completing his workout routine using a visual schedule and with the aid of a coach visit:

http://www.allabilitiesfitness.ca/#!video

Please note these clips are in English.

 

About the Authors

Karin G. Steiner (Ph.D.) began her career as an English instructor at universities in China and Japan. When her son was diagnosed with autism, she embarked on a second academic career focussed on cognitive theories of autism and developmental psychology. Karin’s publications include articles on teaching theory of mind concepts to young children with autism and her doctoral work explored social understanding in the friendships of adults with developmental disabilities. Karin is the founding Executive Director of New Leaf Link (www.newleaflink.ca), a rural charitable organization dedicated to the community inclusion of adults with developmental disabilities.

Dawn Campbell is an Ontario Certified Teacher, a Personal Training Specialist, and owner of allABILITIES FITNESS (www.allabilitiesfitness.ca). She holds a Bachelor of Education degree from Queen’s University and a degree in Disability Studies from Ryerson University. For the past 15 years Dawn has advocated for the inclusion of people with disabilities and she is the 2011 International Day for Persons with Disabilities Access Award recipient for Kingston, Ontario.


Keywords: Adults, adolescents, health, instruction, leisure, recreation,



[1] 2001 Statistics Canada Participation and Activity Limitation Survey Changing Minds, Changing Lives

https://www.paralympic.ca/en/Programs/Changing-Minds-Changing-Lives.html [retrieved August 31st, 2012]. NB. We have not found studies that itemize general physical activity levels or fitness experiences of people with autism.

[2] The Ontario Curriculum, Grades 1-8: Health and Physical Education, Interim Edition, 2010 (revised)

 

[3] Inclusive Fitness and Lifestyle Services for all (dis)Abilities(2002). Canadian Society for Exercise Physiology (CSEP) http://www.csep.ca.

[4] Hillman, C.H., Erickson, K.I. & Kramer, A.F. (2008). Be smart, exercise your heart:exercise effects on brain and cognition. Nature Reviews Neuroscience, 9, 58-65; Ratey, J.J. (2008) Spark: The revolutionary new science of exercise and the brain. New York: Little, Brown and Company; Paluska, S.A. & Schwenk, T.L. (2000). Physical activity and mental health: Current concepts. Sports Medicine, 29 (3), 167-180.

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
7.4. Medical and Health Issues

Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Medical and Health Issues

By: Lillian Burke PhD, The Redpath Centre & Elspeth Bradley PhD MBBS, Surrey Place Centre & University of Toronto

The medical and health issues of older youth and adults on the autism spectrum is an area which has not been adequately addressed in the professional literature. Research about children who have autism spectrum disorders (ASD) suggests some medical conditions (e.g., gastrointestinal complaints) are more prevalent than in the general population. It can be assumed many of these medical conditions continue into adulthood. Similarly, there are health issues that typically present in adulthood in the general population that we would also expect to occur in those on the autism spectrum. However, little has been done to determine the prevalence or severity of health issues in adults with ASD.

Our recent provincial study (Stoddart et al., 2013) surveyed individuals with ASD and their carers about physical health and related issues experienced by those 16 and older. Of 480 respondents, 296 medical conditions were reported then grouped by category.  Of these conditions, 92 individuals reported one condition, 48 had two, and 36 reported three. They included disorders of the following systems: brain and spinal cord, digestive, respiratory, immune, liver, kidney and urinary, hormonal and metabolic, and musculoskeletal. Also identified were cardiac disorders, hypertension, vision and hearing impairments, and disorders of skin, sleep and weight. Some of the specific disorders named were epilepsy, headaches, gastroesophageal reflux, irritable bowel syndrome and related disorders, thyroid disorders, diabetes, asthma and allergies, eczema, high blood pressure, high cholesterol, arthritis, scoliosis and fibromyalgia.

With respect to accessing medical service providers, survey respondents made statements such as: “It is difficult to find medical doctors who will accept patients with ASD”; “last two years multiple health problems that were not properly investigated…underserviced area”; “shortage of knowledgeable physicians in the area” (pg. 25). As clinicians, we are sometimes told by adults on the spectrum that their health providers don’t take their medical complaints seriously. In their recent chapter on medical issues in adults with ASD, Burke and Stoddart (2013) quote a client report: “I can’t find a medical doctor who is willing to work with me without the drugs that I get all the side-effects for, unpredictable intended effects, and wild-card effects that don’t show up in the literature at all”.

Individuals on the autism spectrum have “unique neurobiology” (Bradley and Caldwell, 2013). This affects both their perception of and their response to situations. If the impact is true for sensory, movement, emotional, perceptual and other systems of functioning, then why would it not impact their experience of and response to health issues? If it does, this may affect their ability to explain their difficulties in terms that are understood by their health care provider. As a consequence, it may, in some situations, lead to appropriate investigations not being done or inappropriate investigations being done that do not target the underlying cause of the individual’s discomfort.

We know that individuals on the autism spectrum do not always have regular medical appointments. When they do see their health provider, they may have difficulty in communicating their bodily discomforts and experiences. This may be due to not having adequate language or in using unusual descriptive terms, their reluctance to try to explain due to past negative experience, and not always knowing what is “normal”. These will certainly affect the physician’s ability to understand their physical status and physical discomforts.

It is important that steps be implemented to increase the ability of the individual with ASD to explain their health experiences, and for their physician to better understand what the individual is communicating. As information is increasingly becoming available about health issues that may affect those with ASD, screening individuals for these conditions will be important. A family history of medical conditions should be compiled, if possible, with the assistance of a family member, because the individual may not be aware of health issues in extended family members or understand the relevance of others’ health issues to his or her experience. It will also be important that their discomforts are acknowledged, even if their symptoms or their test results are not typical.

Assistance in explaining their symptoms may be achieved by family or other supportive individuals helping to document their experiences prior to a medical appointment; and for the health care provider to have visual tools to aid communication and understanding, as well as tools to guide autism-specific proactive medical care and surveillance across the lifespan (Bradley et al., in preparation).

Recommendations for the community:

  • Build capacity in the health professions (e.g., medicine, nursing, social work, psychology, occupational therapy) by offering and encouraging attendance at ASD workshops and conferences
  • Develop ASD-specific standards of medical care (e.g., practice guidelines) and support (e.g., tools for implementing practices, mentorship programs, professional internships/practica)
  • Develop local clinical networks of health specialists with expertise and/or willingness to work with people with ASD
  • Share expertise and clinical support through presentations, workshops and online discussions. 
  • Make available (e.g., online and in primary care provider offices) information re: health matters in patient-friendly formats (e.g., visual presentation, plain language)
  • Carry out research on ASD-specific health issues and vulnerabilities

 

Recommendations for the health care provider

  • Attend to:
    • office accommodations for patients with ASD (e.g., brief waiting time, reduced office lighting, address sensitivity to touch, etc.)
    • individual communication styles and preferences
    • health vulnerabilities specific to each patient and this patient group as a whole
    • atypical presentation of medical discomforts (e.g., hypo- or hyper-sensitivity)
  • Engage in continuous professional development in ASD-related health updates
Recommendations for the individual and their family:
  • Keep health records and have available when needed:
    • Past health assessments, investigations, treatments, hospital admissions
    • Records of past and current medications and response to these
    • Family history of physical illness and response to medications
  • Document idiosyncratic response to pain and discomfort and share with health care team
  • Find ways to communicate effectively with health care provider while respecting youth/adult need for independence and confidentiality
  • Work with health care providers to encourage meaningful participation of the individual with ASD in their health care
  • Identify and document needs for ASD-specific health care provider accommodations in the office setting
  • Undertake regular health assessments and routine investigations (even if there are no immediate medical concerns)
  • Build relationships with local network of health care providers

 

 

References

Bradley, E., & Caldwell, P. (2013). Mental health and autism: Promoting Autism Favorable Environments (PAVE). Journal on Developmental Disabilities, 19(1), 1-23. Available at:www.oadd.org.

Bradley E., Cameron D., Korossy M., Loh A. & Developmental Disabilities Primary Care Initiative Co-editors (in preparation). Health Watch Table –Autism Spectrum Disorder. In Tools for the primary care of people with developmental disabilities. Available at: www.surreyplace.on.ca.

Burke, L. & Stoddart, K.P. (in press). Medical and health problems in adults with ‘high-functioning autism’ and Asperger syndrome. In F. R. Volkmar, B. Reichow & J. McPartland (Eds), Adolescents and Adults with Autism Spectrum Disorders. NY: Springer Publishing. 

 
Morton-Cooper A. (2004). Health care and the autistic spectrum: a guide for health professionals, parents and carers. Jessica Kingsley Publishers. New York.

National Autistic Society. Patients with autism spectrum disorders: Guidance for health professionals. Available at: www.autism.org.uk 

 
Stoddart, K.P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., Riosa, P & Bradley, E. (2013). Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems. Toronto, ON: The Redpath Centre.

 

About the Authors:

Lillian Burke, PhD is Psychologist at The Redpath Centre in London, Ontario. Her primary clinical activity is assessment of adults who have ASD. She has a special interest in assessment of and support for women with Asperger Syndrome and other developmental disorders, as well as parents with Asperger Syndrome.

Elspeth Bradley, PhD, MBBS is Psychiatrist-in-Chief, Surrey Place Centre and Associate Professor, Department of Psychiatry University of Toronto. As psychotherapist, psychiatrist, teacher and researcher, she has worked with persons with intellectual disabilities and ASD over the past 30 years both in Canada and the United Kingdom.

 

 

 

 

 

 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
7.5. Useful Insights: Improving How People with Autism Spectrum Disorder & Other Developmental Disabilities Use Medication

By: Yona Lunsky and Virginie Cobigo

This article first appeared in Service, Support and Success: The Direct Support Workers Newsletter. Volume 3 – Issue 5

 

When a physician prescribes a patient medication, they have a conversation with one another about how much medication to take each day, the different ways to take the prescription, how the patient will know the medication is working, and any possible side effects caused by the medication. This is an important ongoing dialogue that helps to keep the patient informed, but what happens when a patient is unable to have a conversation or ask questions like this with their doctor? What happens to patients who need assistance with figuring out the answers?

Francine’s Story

My brother had been on numerous medications for almost 10 years. He became very quiet, slowed down and sluggish. He also gained a lot of weight and didn’t have the energy he used to have. Over those 10 years, we began to feel that this was just who he was and forgot about his old energetic self who was always on the go. However, he began to get upset with this sluggish self and slowly became more aggressive and began lashing out, always telling us he didn’t feel well or wasn’t happy. It was a long and painful process, but we eventually realized that he was likely overmedicated. Once this issue was cleared up, we saw a reemergence of his old self. With the right balance of medication, he could be happy and energetic and also have his psychiatric issues under control.

Taken from The Atlas on the Primary Care of Adults with Developmental Disabilities, chapter 6.

Medication use is very common for people with a developmental disability like Autism Spectrum Disorder (ASD). But medications can also lead to problems for someone who might struggle with how to report whether a medication helps or not, or when others aren’t alert to the impact of the side effects. In the story above, Francine and others started to notice that the person before them was not the person they knew and loved. And it was very frustrating for Francine’s brother as well to not feel like himself. Fortunately, they had the patience, motivation, and clinical support to set things straight. Family and caregivers can play a supportive role in monitoring their loved ones use of medication.

Medication training has historically had a focus on “medication dispensing.” This is similar to receiving a prescription from the drugstore with an accompanying piece of information about the prescribed medication, including safety, where to keep medication, how to administer it, when to give it, and how to keep track. While medication safety is terribly important, it is not enough to support people on the spectrum who require assistance in taking medication. We now know that when it comes to medication, a family member or a caregiver needs to be:

  • An advocate who can support those taking medications to be their own advocates in health care discussions,
  • A communicator about the need for medication, and the effectiveness of medication,
  • A teacher about what medications can do, how to take them safely, and how to monitor them, and
  • A monitor who can keep an eye on the effects of medication, and report them to healthcare professionals.

 

What challenges do adults with developmental disabilities, including ASD, face when it comes to medication use?

Adults with ASD and other developmental disabilities are at a higher risk for physical and mental health problems. As a result, they tend to get prescribed many different medications. But it’s very difficult for people with on the spectrum to identify and report side-effects from medication. Also, although medications aren’t necessarily bad, taking too many, not enough, or not the right ones can lead to problems. Not being able to ask questions about the medications or not following instructions can also result in serious issues. The Health Care Access Research and Developmental Disabilities (H-CARDD) Program studied medication use by 52,000 adults with developmental disabilities, including those with ASD, who get their medication paid for by the Ontario Drug Benefit Program. Here are a few things they found:

  • Nearly one in two adults takes two or more medications.
  • One in five receives five or more medications at the same time.
  • Older people, women, and those with diseases receive a lot of medication.
  • Of all the medications given, antipsychotic medications are prescribed most often.
  • One in five adults who take antipsychotic medication may take two at one time. This medication combination can put them at risk for very serious problems, even death.

 

What can families and caregivers do to help people with ASD manage their medication?

Careful monitoring is essential. The families and caregivers should work closely with the person taking the medication and their treatment team to identify the effects of each medication and figure out ways to monitor them objectively. The focus needs to be on observable behaviours, similar to how Francine had observed her brother’s weight gain, his lethargy and aggression. When a family focuses on observable shifts in behavior in their loved ones, they are more likely to minimize side-effects of prescribed medications.

A family member can make a prescribing physician aware of any changes in behaviour in their loved ones, and in response, a physician can find many ways to minimize side-effects. These strategies include:

  • Taking the medication in smaller doses spread over the day.
  • Taking medication with appropriate food.
  • Taking an additional medication to treat specific side-effects.
  • Changing the medication.

 

Remember that some people with ASD and other developmental disabilities might be hypersensitive to medications. For example, dizziness can be an annoyance for anyone, but if you already have problems walking steadily without medication, any additional dizziness could be very dangerous. Small adjustments in medication can make a significant difference for someone affected by side-effects.

What can a family member do to monitor medication use?

Many families do not tend to receive education around medication use, with the exception of explanations about the medications and their side effects which they receive from their pharmacist. Family members who are advocating and supporting a loved one on medication should make sure they know the name and dose of each drug and why it has been prescribed. Local pharmacies can print out this information. It is important to get all prescriptions filled from the same pharmacy. The pharmacist is always available to answer questions about any medication, as well as how different medications interact when taken at the same time. A medication for a physical problem might interact with a medication for a psychiatric issue. Those who prescribe medications need to know the complete list. That’s why it is so important for family members and caregivers to keep track of medications and to keep the family physician updated about all of the medications that are being prescribed. When there are multiple doctors involved, each treating different problems, they may not know about other medications that are unrelated to the problem they’re focused on. It is recommended that family members have a list of medications for every medical appointment. One easy way to do this is to get an updated printout from the pharmacy. While walk-in clinics can be convenient, it is important to remember that their staff also will not have a full picture of the medications being used. It is always better to see a physician who has a history of a loved one. If that can’t happen, at least have up-to-date information available for walk-in appointments. In an emergency, the staff at the hospital emergency department may be able to view the list of current medications covered through the person’s drug benefits plan on the hospital computer. But they may not know that the person being supported is part of a drug plan, so families should be prepared to share that information. A hospital can also call a pharmacy to get that information in an emergency. Family members can help to monitor medication by:

  • Ranking symptoms of the illnesses on a scale of one to 10 and reporting any improvement.
  • Tracking behaviours in a journal to determine whether or not medication is working (for example, what happened when a certain dosage was changed?)
  • Noting side-effects and discussing them with the treatment team.
  • Checking with a doctor and/or pharmacist for drug interactions before new medications are given (prescription or over-the-counter).

 

The input from families or caregivers is very important when making changes to medication and they can help those taking medications to report on how the adjustment is going: are symptoms worse? Are side-effects better? Families can also help a loved one with ASD prepare before a meeting with a health care provider, to give medication feedback.

Sometimes, a family member may be the only person who can help the doctor decide if it is a good time to make changes to a medication regimen. If there are significant changes in a person’s routine or living situation, it might not be the best time to monitor medication changes. After all, it might be impossible to know how much of the change is due to the life situation and how much is due to the medication.

In conclusion

It takes a team-based approach to improve how people with ASD and other developmental disabilities use medications. Family members and caregivers are an important part of that team. Education for adults with ASD and their caregivers on the appropriate use of medications and on monitoring side-effects is important.

More Information

H-CARDD website www.hcardd.ca

LD Medication Guideline: Using Medication to Manage Behavioural Problems in Adults with Learning

Disabilities (University of Birmingham)

http://www.birmingham.ac.uk/research/activity/ld-medication-guide/index.aspx

Project MED Educational Booklets and International Consensus Handbook (Nisonger Center) - Philip Green http://nisonger.osu.edu/projectmed

ATN/AIR-P Medication Decision Aid: for Families of children with ASD (Autism Treatment Network)

http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-canuse/medication-guide

Auditing Psychotropic Medication Therapy (Surrey Place Centre) http://www.surreyplace.on.ca/Documents/Auditing%20Psychotropic%20Medication%20Therapy.pdf

SaveSave
8. 6 Volunteering and Employment


8.1. Developing Job Skills 1

Developing Job-Readiness Skills in Youth with ASD through Volunteering: Getting Started

(Part 1 of a 2 part series)

By Laurie Pearce 

Like many other parents of a youth with an Autism Spectrum Disorder (ASD), I find thoughts of the future can be positively paralyzing. To overcome that paralysis, I decided to focus on helping my son prepare for some form of work when he leaves school. The focus is not on career development, but simply to increase the options that will be available for him to make a meaningful life for himself once he leaves school. This article provides some suggestions for other parents with similar goals, suggestions that I believe can be applied to individuals wherever they might be on the spectrum.

The First Job is in the Home

You don’t have to look far to find a way to develop job skills in your child or youth: just take a look around your home. Household chores are not just a way to share the workload of family life; they’re an invaluable way to help your child develop useful skills and a sense of responsibility.

Even the simplest household chore develops core skills. For example, emptying the dishwasher means your child must learn the appropriate storage location for each item, how to sort items by type (such as keeping all the spoons together), and how to handle items that are fragile vs. those that are sturdy. Good old fashioned hand-washing of the dishes is even better, since it requires things like running water at an appropriate temperature, applying the right amount of pressure for cleaning, and working in collaboration with others (for example, the person drying the dishes).

 

  • Choose chores that are repeated frequently (cleaning or putting away dishes, sweeping floors, taking out garbage or recycling, etc.) rather than done more rarely (cleaning out the basement, raking leaves, washing windows). This ensures the opportunity for lots of practice.
  • Choose chores that can be done relatively quickly to sustain interest and ensure success.
  • Choose chores that are clear-cut and visually obvious. Whether a floor is clean or not might differ based on your standards of cleanliness, but whether a dishwasher is empty or not is beyond argument. This allows your child to recognize when the work is done without being told.
  • Avoid chores that have to be done within a short timeframe, require handling delicate objects, or must be done in a very precise way. These chores will add stress for both your child, who may struggle to meet the demands of the task, and you, who may find it difficult to be patient and to resist the urge to do the chore for the child (or re-do it when they are done).
  • Build the chores into the child’s schedule.
  • Ideally, choose chores that have some built-in motivator for the child. For example, they might be more interested in putting their videos in order than in putting away the groceries, or they might more happily find the snack aisle than the vegetable aisle in the grocery store.
  • Put in place whatever supports are needed to teach your child how to do the chore and meet with early success. This might mean backward chaining (e.g. requiring the child to put away the silverware, which is the last step of the chore), adding visual supports (e.g. labelling cupboard doors to indicate their contents), or reducing the workload (e.g. starting with an almost empty dishwasher). Choose a good time to teach the chore (e.g. not half an hour before the grandparents are arriving for dinner or ten minutes before the school bus comes).
  • Use the same strategies you would use for any new activity: lots of praise and reinforcement, fading prompts, and increasing demands.
  • As your child gets comfortable with doing chores, add more responsibility, either more chores or more responsibility for an existing chore. Add some chores where your child has to identify that the work needs to be done at all (e.g. the garbage can in the kitchen is close to full), so they don’t rely on always being told to start the work.

 

Money: Your New Primary Reinforcer

Paying your child for their household chores and, when they’re ready, for their volunteer work, has many benefits. No math drill, computer math program, or worksheet can teach someone about the value of money better than having cash in the hand, and the opportunity to spend it.

Decide ahead of time how much money you will pay, whether you are paying based on time spent or chore completion (e.g. are you paying per minute of effort spent shredding or for shredding a specific volume of paper) and what constraints you will put on the use of the money. I would suggest you leave the concept of saving until the concept of purchasing, and value-for-money, is more firmly established. At the beginning, allow your child to spend what they earn as they wish and as soon as they wish (this might mean timing chores so there is time available for immediate shopping).

Allowing your child to spend freely works best if they want to acquire relatively small-cost items, and even better if their heart’s desire comes in different sizes and variations. My son’s passion for Coke and Pepsi led him very quickly to recognize that this amount of work meant he could buy a can, but that amount of work meant he could buy a bottle, and this much more work meant he could buy a bottle and candy. It also allowed us to begin introducing comparative costs, checking grocery store flyers and deciding whether he wanted to walk a little further for the cheaper bottle at the dollar store or pay for the convenience of the variety store. Because it was his money, it was his choice: as were the consequences of the occasional regretted purchase.

Once your child understands that work equals money, and that money equals purchasing power, you can introduce more subtle concepts such as saving for larger purchases (we use a scale to show him how close he’s getting to his target, but one of those counting jars could also help). Having a savings goal also helps bring a little control to the purchasing process: a reminder of what the child wants to purchase in a week or a month can help them make a better decision about what to buy right now. Still later you can introduce concepts like saving for someone else (e.g. a birthday gift or a shared meal).

I also found it useful to have a backup chore that always needs to be done (in my case, shredding documents): when my son needed to earn more money immediately for a desired purchase, that backup chore was always a possibility.

Part 2 of this series deals with moving to volunteer work outside the home.

 
 

Keywords: Job-readiness skills, Teaching strategies, Tips for parents, Money skills

 


 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
8.2. Developing Job Skills 2

Developing Job-Readiness Skills in Youth with ASD Through Volunteering: Moving Into the Community

(Part 2 of a 2 part series)

By Laurie Pearce 

Start Small

Once household chores and money rules have been firmly established, it is time to look outside the home for work (volunteer) opportunities. While you’re seeking out those opportunities, you can try this little strategy I call “guerilla volunteering”.  While in the community, look for small pieces of helpful but casual work your child can do: restoring order to the spice display, making sure all the soup cans face out, ensuring the library’s videos are in alphabetical order. In the very early days you might want to secretly create a small amount of disorder that your child can correct quickly and easily, so the job doesn’t become overwhelming and then gradually have them deal with larger tasks.

Be sure your child’s teacher knows about your child’s growing capabilities. Ask for work-type responsibilities to be given at school, whether that’s taking attendance to the office or setting up/cleaning up for a specific activity.

What to Look for in a Volunteer Opportunity

When looking for more formal volunteering opportunities, look for ones that:

Your child can do (in full or in part): this might mean developing skills beyond those of household chores: see the resource suggestion at the end of this article.

Align with your child’s interests: e.g. would they rather work with food items or hardware items?

Align with your child’s strengths: e.g. are they able to perform fine motor tasks or are they better at ones that require less precision?

Take place in a setting your child can tolerate: e.g. are they able to tolerate noise or prefer quiet environments? Are they more comfortable working outdoors or indoors?

Take place in a setting your child is familiar with. This ensures that a new task isn’t made more complicated by requiring it to be done in an unfamiliar setting. This is particularly important for the first volunteer job.

Require a degree of inter-personal interaction your child is comfortable with: e.g. can they give directions to strangers, are they better face-to-face or on the phone, do they need to communicate non-verbally?

Can provide the accommodations your child needs: e.g. wearing headphones, having labels added to environment, having the workplace organized differently.

Ask your child’s teachers, recreation supervisors, support workers, etc. to suggest types of volunteer work that might suit and engage your child.

Where to Look for a Volunteer Opportunity

Once you have some ideas about what your child would like to do, the hard work really begins: finding a place for them to do it. Start with companies and organizations with which you have a connection, such as:

Local stores or businesses, particularly those that have local ownership or management.

Local services (community newspapers, recreation centers, social service providers).

Any place your family or friends work.

Any place offering services your family or friends use (recreation center, seniors’ center, church, day care, sports club, school, yoga studio, gym). To avoid confusion around roles, avoid places with which your child is currently engaged as a participant.

As with chores, try to choose work that is repeated, rather than a one-time event:  it’s generally better to deliver the community paper every two weeks than to deliver flyers for an annual fundraising event. Also, as with chores, look for work that aligns with your child’s interests and that can be accomplished relatively easily, to increase comfort and confidence.

Decide how your child will be compensated for their work. We pay more for work done outside the home than for chores, and sometimes pair a reward with the location of the work (e.g. a visit to a store or restaurant near to the “work” place).

Charity Village and/or your local volunteer banks often post volunteer positions online. Although these postings may frequently be for jobs beyond your child’s abilities, and often are for one-time events, it’s still worth pursuing them. For example, a volunteer job distributing flyers for a community agency’s annual celebration led to them calling on my son whenever they need flyers distributed for other events. In another case, 90 minutes of volunteer work one Christmas has led to a coop job opportunity that will be supported through my son’s school: an opportunity we would have never found if we hadn’t pursued that first volunteer posting.

Watch for opportunities wherever you go – your instincts will usually tell you when you’ve encountered a suitable environment and, even more importantly, people with the compassion, interest, and attitude to make a job work for your child.

It’s Not Just Your Child Who Needs Training

If possible, have someone other than the parent accompany the child to his or her volunteer work: that will make the separation of work from home clearer. A respite worker is a good option, as is another caregiver, a responsible friend, or even a sibling.

Take the time to educate whomever your child will be working with about ASD in general, your child in particular, and the strategies and supports they need. Don’t be afraid to ask for what needs to be adjusted, and set expectations appropriately: it is better that the “employer” be pleasantly surprised than disappointed. Watch out for the well-meaning supervisor who takes pity on your child and steps in to take over the work or accepts minimal performance: that attitude will not be helpful for your child in the long run.

Check Out These Excellent Resources

The books “Tasks Galore” and “Tasks Galore at Work” are visual, creative guides to setting up in-home training that can help develop and practice job skills (e.g. assembling, filing, and sorting). See http://www.tasksgalore.com/ for details or these volumes might be available from your school or local service provider.

 

Laurie Pearce

 

Keywords: Job-readiness skills, Volunteering, Tips for parents

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
8.3. Case Study: Establishing Work Opportunities for Someone with ASD
By Penny Gill
 

My son is not one of the “stars” amongst adults with autism. His computer skills are fine, but not extraordinary. He has no special scientific aptitude. His math skills meet the needs of daily life, not the demands of technical or commercial endeavors. Yet he is happily engaged in a variety of jobs – some volunteer, others remunerative – that give structure to his life week after week. Because of them, he is a contributing, well-known, and accepted adult in our community.

How did this happen? Some pieces of the puzzle fell into place by luck, others by design. His story may give readers who are trying to establish satisfying lives for adolescents and adults on the spectrum some ideas they can use or adapt.

It may seem off-topic to mention that I prefer shopping in smaller venues. I did not realize that my preference would ultimately help my son get work, but it did just that. I buy all my books from a couple of independent booksellers. When it occurred to me that my son’s interest in keeping his own books in good order might translate into working in a bookstore, it was much easier to broach this idea with the owner of the small bookstore where I was known as a faithful customer, a “regular”, than it would have been to approach an anonymous manager in the branch of a large chain.

My son now works in the secondhand book portion of the store, keeping the stock alphabetized by author within each section. Secondhand bookstores are an excellent venue for people on the spectrum who like keeping things in order. It’s not just that these stores often badly need their collections organized, it is also that they tend to be quiet and not overly crowded, making them user-friendly settings for people on the spectrum.

My son began the job as a volunteer, but ultimately became a paid part-time employee. Some people dismiss volunteer work at a commercial entity as exploitation. I am not of that view. Many potential employers are reluctant to hire someone on the spectrum without seeing how things work out first. Firing someone is an employer’s biggest headache and most of them will have genuine uncertainty about whether or not hiring someone with autism will end in dismissal. Given the common media portrayal of those on the spectrum, this is hardly surprising.

If you recognize this fact and incorporate it into how you approach employers, you will accomplish more. My standard method is to suggest that they give things a try to see how they work out. I explicitly assure them that if the arrangement does not unfold to their satisfaction, there will be no hard feelings: we won’t pressure them to continue with a situation that is not satisfactory to them. This assurance is often enough to lead employers to try things out.

If things do transpire well, some employers will initiate a hiring – as happened in my son’s secondhand bookstore job. If that doesn’t occur, you may want to ask the employer to consider turning the position into a remunerative one. Some will agree, others will not. Faced with a refusal, individual circumstances – both of the employer and of the person on the spectrum – will figure in your decision whether or not to have the individual with autism stay on as a volunteer. Will walking away from the activity make for a day with nothing for the person to do? Is that preferable to volunteering? If he or she stays in the position, can you build on the experience to find other work? The range of issues to consider will vary from one individual situation to another.

My son began volunteering at our local public library as a shelf-checker through the co-operative work placement program at his high school. The co-op program functioned best when I suggested various work possibilities that might exist in particular settings, and then school personnel approached those settings to start the process for my son.

Correcting errors made by people re-shelving books (whether members of the public or library employees) can be a tedious task, but my son loved the precision and predictability of the job. Going through the books one by one, shelf by shelf, aisle by aisle would be a mind-numbing nightmare of a job for many. Not for him. By addressing this task, he gave librarians and library assistants time to do other work, such as answering patrons’ queries or teaching them how to use the computer terminals or automated check-out – work involving social interaction skills beyond my son’s mastery.

After he had been there a spell, I made a point of thanking the librarian for giving him this opportunity and sharing with her how much he enjoyed the work. He kept that co-op position throughout high school, and when he finished school I went back to the librarian to ask if he could continue doing the work as a volunteer. I was delighted that she accepted. To this day, he visits the local library twice a week to shelf-check – no longer just fiction, but also the large-print collection and the DVDs.

I have never asked that this position be other than voluntary. I am well aware that the library’s budget has been severely cut year after year. It has reduced the number of positions, not increased them. Besides, he not only loves the work, it gives shape to his days there, gives the public a chance to get to know him, and opened the door to an altogether different job that became remunerative.

Right after high school ended, my son began volunteering in a law firm library. That opening came about as many positions for people on the spectrum do – through a good-will ambassador. Our ambassador did not work at that office, but knew lawyers who did, and approached them with the proposal of finding some work for my son. That his resume included volunteering at the public library gave him the entrance he needed. They had library work that needed doing. It was different than the work in the public library, but his experience there gave him the much-needed credibility to land the position.

His job at the law library is to update the “current servers”. Current servers are hard-covered, ringed binders that give the most up-to-date accounts of different legal issues. Law book publishers regularly issue packages of printed sheets to insert in those current servers to keep them up to date. The instructions of which pages are outdated and need to be removed, and where the new sheets are to be inserted are easy to follow.

I describe this job in some detail simply because it is a perfect fit for so many people on the spectrum. Every medium- to large-sized law firm has a library, and every law library has current servers that need to be kept up to date. 

After the bookstore began to pay for my son’s work I decided to ask the law firm to pay as well. They agreed. This is an excellent job – one that needs to be done, is often neglected at law firms because everyone is so busy, and one that others on the spectrum could find satisfying.

Another high school co-op job for my son was at the local grocery store. His first task was to put carts and baskets back in place and to load groceries into customers’ cars. A friend, whose son on the autism spectrum is every bit as capable as mine, not realizing that my son had started doing this work, once said that she would never allow her son to round up shopping carts. However, doing this job was an important stepping-stone to other responsibilities for my son at the grocery store. Once employees there got to know him, he was offered the chance to do shelf-stocking, to remove groceries past the freshness date from the display, to face-up (pulling stock to the front of the shelves), to operate the cardboard crushing machine in the recycling program, to keep produce sections well-stocked, to re-shelve groceries customers abandoned or left in the wrong place, to check prices for cashiers, and on and on. There are a multitude of jobs in grocery stores that many people on the spectrum can perform well. For my son, the starting point was helping out with returning carts to their storage positions, a job he still does.

My friend’s son has had very few jobs over the course of his life, though he clearly has the skill-set for many positions. There may be a lesson in that. Be cautious about looking down your nose at certain jobs. They may suit perfectly the individual you are helping and could well lead to other opportunities.

My son’s very first job was delivering the community newspaper. It was an important start. Hearing that he had an interview for that job first prompted the high school to put him in the co-op program. The paper delivery work increased greatly the number of people in our community who knew my son. He kept the route until shortly after high school. Eight years later the paper telephoned to see if he would consider doing a route again. When I asked him, his response was an unequivocal “Sure!”

The first time back on the route an old customer charged out of her door and down her front walk to greet him. “I thought it was you I saw through my window,” she said smiling. “I’m so glad you’re back! I always thought you were wonderful!” Though he is paid a rather paltry sum for his paper deliveries, clearly the rewards of the job go far beyond the rate of compensation.

A summary of some strategies that guided us in establishing an active, engaged work-life for my son follows:

 

  • Any work experience, no matter how humble, helps to build a resumé and may lead to expanded job opportunities
  • Volunteer work gives structure to the day, allows others to get to know someone on the spectrum, and may ultimately lead to remuneration, either in that job setting or in others
  • Goodwill ambassadors who know people inside an organization can help find work opportunities for persons with autism
  • A faithful patron of a business or other organization may be able to perform the goodwill-ambassador role there
  • Some potential employers, who have fears about hiring someone with autism, may be willing to offer a position, if those fears are acknowledged and addressed
  • An assortment of part-time jobs and volunteer positions can give structure to a week just as effectively as a full-time job
  • Be alert to tasks suitable for someone with autism in every setting you visit, whether that is the bowling alley or the golf club, the movie cinema or the museum, the garage or the zoo, the bakery or the fitness centre, the florist or the pharmacy
  • Enhance co-operative work placement programs by suggesting particular settings and tasks suitable for persons on the spectrum
  • After someone has started to work in a position, whoever is ultimately responsible for this person (whether a parent, guardian or director of a supported-living arrangement) should visit the workplace to express thanks for the opportunity and to share accounts of whatever satisfaction has been gained from the work thus far

 


Keywords: Employment, job skills, volunteering

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
8.4. Finding and Keeping Employment

 

This article summarizes some of the information contained in the recent report entitled Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems.  

By Claudia Accardi, MSW, RSW & Sarah Duhaime, MSW, RSW, The Redpath Centre

Finding and keeping meaningful employment is often a challenge for youth and adults with Autism Spectrum Disorder (ASD). Underemployment is also a concern, as many individuals are employed in positions that require performance significantly below their skills, knowledge, or training. Being employed and self-sufficient financially contributes to improved self-esteem, increased independence and reduces reliance on income support programs.

The research on employment and services in Canada for those living with ASD is sparse. During our recent Ontario study of 480 youth (16+) and adults living with ASD (Stoddart et al., 2013), families and individuals with ASD shared their employment status and their experiences in the workplace. Only 13.9% of the participants 20 years and older relied on full-time employment as their primary source of income, while 6.1% relied on part-time employment. Also, the majority of people (58.2%) depended on Ontario Disability Income Supports (ODSP) as their primary source of income.

In the same study, 30% of those employed were found to be working in “sales and service occupations”. This finding reflects that although individuals with ASD may not naturally have the “soft skills” to interact and function in these types of environments, these service-oriented entry-level positions are often the occupations available. “Business, finance and administration” were reported to be the primary employment fields for 15.1% of the participants.

Other studies have been conducted in the area of ASD and employment, however more research is needed on ASD-specific vocational interventions. Mawhood and Howlin (1999) in the UK studied the outcome of an ASD vocational intervention compared to a control group which did not receive ASD specific employment supports, and concluded that those in the ASD-specific group had higher salaries, worked longer, and reported more satisfaction than the control group.

A further argument on the benefits of ASD-specific vocational programs is derived from Cimera and Burgess (2011) in their review of the monetary benefits/costs of adults with ASD working in their communities in the US. This study concluded that across all states, those individuals participating in vocational programs most frequently were at a monetary benefit when considering programming costs and training.

Whether we are in the role of service providers, parents, or individuals with an ASD, our challenge is not only to increase the numbers of youth and adults with ASD who are employed, but also to ensure that they achieve long-lasting meaningful employment. .

Challenges to Accessing Employment Faced By Youth and Adults With ASD:

 

  •  Preparing for and attending an interview—difficulties managing anxiety, reading social cues, communicating appropriate information
  • Social interactions with colleagues, organizational skills and sensory challenges
  • The work activities required might not be perceived as challenging, rewarding or meaningful
  • Colleagues and bosses’ misunderstanding of the individual’s behaviours and challenges
  • Lack of general awareness of the strengths that an individual with ASD can bring to the workplace
  • Training which does not support the individual’s specific needs related to ASD and other features
  • Difficulty with self-advocacy: sharing information about personal needs and accommodations

 

Recommendations for the Community:

 

  • Increase employment support programs geared to individuals with ASD
  • Increase training for frontline workers in generic employment agencies to better understand the strengths and needs of the ASD population
  • Customize existing employment programs to better support the ASD population
  • Educate employers to understand how to cultivate talents and preferences of those with ASD
  • Improve transitional services at the high-school and post-secondary levels to ensure individuals are prepared to enter the workplace
  • Increase research on vocational interventions specific to those with ASD to better understand and advocate for appropriate services
  • Create opportunities for individuals with ASD who would like to pursue entrepreneurial activities—support with start-up costs, financial and management training, mentorship, etc.
  • Increase employment coaching and support for individuals with ASD who have successfully entered the workforce, but may be struggling in their current position

 

Recommendations for the Individual and Family:

 

  • Enroll in co-operative education opportunities in high school, volunteer in the community, and seek out summer employment to get experience in a variety of settings
  • Enroll in programs that focus on employment, life skills, and social skills to prepare the individual for adult independence
  • Connect the individual living with ASD to family and friends for informational interviews about specific jobs or careers
  • Engage the individual in job-shadowing opportunities
  • Develop strong self-advocacy skills so that personal strengths and needs can be communicated to the employer in an effective manner
  • Begin career planning discussions as early as possible in adolescence to ensure a successful transition to the world of work
  • Identify the individual’s strengths, skills, interests, talents and cognitive style
  • Make use of psycho-vocational testing and assessment
  • Don’t just look for a job, but for a job that is “the right fit” for the individual
  • When self-employment is viable, evaluate the individual’s talents, whether he/she has a product or service that has the potential to be sold, strengthen the individual’s entrepreneurial skills, and look for small business training and mentoring  

 

 

References:

Cimera, R. E. & Burgess, S. (2011) Do adults with autism benefit monetarily from working in their communities? Journal of Vocational Rehabilitation, 34 (3), 173-180.

Mawhood, L., &Howlin, P. (1999) The outcome of a supported employment scheme for high-functioning adults with Autism or Asperger Syndrome. Autism: International Journal of Research and Practice, 3 (3), 229–254.

Stoddart, K.P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., Burnham Riosa, P. and Bradley, E. (2013). Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in an Unprepared System. Toronto, ON: The Redpath Centre

About the authors:

Claudia Accardi, MSW is Research Assistant at The Redpath Centre and Factor-Inwentash Faculty of Social Work, University of Toronto. Among various research projects, she is currently involved in a project examining the marital relationships in families of children with ASDs. Her interests include program evaluation and research in ASDs, developmental disabilities, and learning disabilities.

Sarah Duhaime, MSW is Employment and Life Skills Coach at The Redpath Centre and Family Support Coordinator at Autism Ontario. At The Redpath Centre, she offers direction to individuals in entry-level and mid-career positions who are facing obstacles to finding and maintaining rewarding employment.


 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
8.5. Transitioning to Employment

Honest, loyal, highly focused, creative, logical, and attentive to detail are some of the common traits associated with people with ASD (Autism Spectrum Disorder).

Would you want to hire someone with these traits?

How about someone who has better attendance and retention rate than their average colleague?

Honest, loyal, highly focused, creative, logical, and attentive to detail are some of the common traits associated with people with ASD (Autism Spectrum Disorder).

Would you want to hire someone with these traits?

How about someone who has better attendance and retention rate than their average colleague?

Your answer is probably yes to these questions; however, 86% of adults with ASD are un-employed or under-employed in Ontario. The majority of adults (58%) rely on Ontario Disability Income Supports as their primary source of income.

Transition planning for those with ASD needs to start sooner to help the move into adulthood!

Students with ASD need more help in the following areas related to employment:

  • Social interactions with colleagues, organizational skills and sensory challenges.
  • Making the work activities adequately challenging, rewarding and/or meaningful.
  • Understanding different roles/careers – people with ASD often struggle to take perspective and envision what someone else’s experiences would be like (This is called Theory of Mind).
  • Preparing for and attending an interview—difficulties managing anxiety, reading social cues, and/or communicating appropriate information is often challenging.
  • Self-advocating - sharing information about personal needs and accommodations.
  • Mental health - ensuring stablility to be workplace ready. Many people with ASD also live with related mental health conditions such as anxiety or depression.
  • People also struggle due to a lack of general awareness of the strengths and abilities that someone with ASD can bring to the workplace.

 

Ideas for Schools:

  • Enroll students in co-operative education (co-op) opportunities in the community to help them explore their interests.
  • Educate co-op supervisors on cultivating talents and preferences of those with ASD. Ensure that there is a training plan in place that matches the individual’s learning style.
  • Support volunteer roles for people with ASD by actively offering opportunities and helping to ensure the individual is prepared for this role.
  • Make career planning and regular transition meetings mandatory. Students with ASD may require more time to contemplate and understand different career options. Additional meetings will help guide the individual to their career path.
  • Identify the individual’s strengths, skills, interests, talents and cognitive style through career assessment tools provided in schools across Ontario.
  • Connect with local community transition programs, colleges and employment services.
  • Ensure that the young adult contributes to their Individual Education Plan (IEP).

 

Ideas for the Individual and Family:

  • Participate in chores and regularly structured responsibilities in the home. Allowance or other rewards given for task completion is likely to be motivating.
  • Volunteer in the community, and seek out summer employment to get experience in a variety of settings.
  • Enroll in programs that focus on employment, life skills, and social skills to prepare for adult independence.
  • Connect the individual living with ASD to family and friends he or she can interview to gather information about specific jobs or careers.
  • Engage the person in job-shadowing opportunities.
  • Develop strong self-advocacy skills so that personal strengths and needs can be communicated to the employer in an effective manner.
  • Identify the person’s strengths, skills, interests, talents and cognitive style.
  • Make use of psycho-vocational testing and assessments.
  • When self-employment is viable, evaluate the individual’s talents, whether he or she has a product or service that has the potential to be sold, strengthen the individual’s entrepreneurial skills, and look for small business training and mentoring.

 

 

Written by: Sarah Duhaime, MSW, RSW – Employment and Life Skills Coach at The Redpath Centre.

The Redpath Centre (in Toronto, Ontario) addresses the social and emotional needs of children, adolescents and adults with Asperger Syndrome and mental health concerns through best practices, cross-sector collaboration, education and research. Our experienced clinicians bring their knowledge of Asperger Syndrome and related conditions to our work. For more information, visit: www.redpathcentre.ca.

References:

Accardi, C. & Duhaime, S. (2013) Finding and Keeping Employment. Autism Ontario Knowledge-Base: www.autismontario.com

Baron-Cohen, S., Leslie, A.M. & Frith, U. (1985). Does the Autistic Child have a “Theory of Mind”? Cognition. 21(1): 37-46.

Stoddart, K.P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., Burnham Riosa, P. and Bradley, E. (2013) Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in an Unprepared System. Toronto, ON: The Redpath Centre

Honest, loyal, highly focused, creative, logical, and attentive to detail are some of the common traits associated with people with ASD (Autism Spectrum Disorder).

Would you want to hire someone with these traits?

How about someone who has better attendance and retention rate than their average colleague?

Your answer is probably yes to these questions; however, 86% of adults with ASD are un-employed or under-employed in Ontario. The majority of adults (58%) rely on Ontario Disability Income Supports as their primary source of income.

Transition planning for those with ASD needs to start sooner to help the move into adulthood!

Students with ASD need more help in the following areas related to employment:

Social interactions with colleagues, organizational skills and sensory challenges.

Making the work activities adequately challenging, rewarding and/or meaningful.

Understanding different roles/careers – people with ASD often struggle to take perspective and envision what someone else’s experiences would be like (This is called Theory of Mind).

Preparing for and attending an interview—difficulties managing anxiety, reading social cues, and/or communicating appropriate information is often challenging.

Self-advocating - sharing information about personal needs and accommodations.

Mental health - ensuring stablility to be workplace ready. Many people with ASD also live with related mental health conditions such as anxiety or depression.

People also struggle due to a lack of general awareness of the strengths and abilities that someone with ASD can bring to the workplace.

Ideas for Schools:

Enroll students in co-operative education (co-op) opportunities in the community to help them explore their interests.

Educate co-op supervisors on cultivating talents and preferences of those with ASD. Ensure that there is a training plan in place that matches the individual’s learning style.

Support volunteer roles for people with ASD by actively offering opportunities and helping to ensure the individual is prepared for this role.

Make career planning and regular transition meetings mandatory. Students with ASD may require more time to contemplate and understand different career options. Additional meetings will help guide the individual to their career path.

Identify the individual’s strengths, skills, interests, talents and cognitive style through career assessment tools provided in schools across Ontario.

Connect with local community transition programs, colleges and employment services.

Ensure that the young adult contributes to their Individual Education Plan (IEP).

Ideas for the Individual and Family:

Participate in chores and regularly structured responsibilities in the home. Allowance or other rewards given for task completion is likely to be motivating.

Volunteer in the community, and seek out summer employment to get experience in a variety of settings.

Enroll in programs that focus on employment, life skills, and social skills to prepare for adult independence.

Connect the individual living with ASD to family and friends he or she can interview to gather information about specific jobs or careers.

Engage the person in job-shadowing opportunities.

Develop strong self-advocacy skills so that personal strengths and needs can be communicated to the employer in an effective manner.

Identify the person’s strengths, skills, interests, talents and cognitive style.

Make use of psycho-vocational testing and assessments.

When self-employment is viable, evaluate the individual’s talents, whether he or she has a product or service that has the potential to be sold, strengthen the individual’s entrepreneurial skills, and look for small business training and mentoring.

Written by: Sarah Duhaime, MSW, RSW – Employment and Life Skills Coach at The Redpath Centre.

The Redpath Centre (in Toronto, Ontario) addresses the social and emotional needs of children, adolescents and adults with Asperger Syndrome and mental health concerns through best practices, cross-sector collaboration, education and research. Our experienced clinicians bring their knowledge of Asperger Syndrome and related conditions to our work. For more information, visit: www.redpathcentre.ca

References:

Accardi, C. & Duhaime, S. (2013) Finding and Keeping Employment. Autism Ontario Knowledge-Base: www.autismontario.com

Baron-Cohen, S., Leslie, A.M. & Frith, U. (1985). Does the Autistic Child have a “Theory of Mind”? Cognition. 21(1): 37-46.

Stoddart, K.P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., Burnham Riosa, P. and Bradley, E. (2013) Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in an Unprepared System. Toronto, ON: The Redpath Centre

Your answer is probably yes to these questions; however,

The majority of adults (58%) rely on Ontario Disability Income Supports as their primary source of income.

 

Transition planning for those with ASD needs to start sooner to help the move into adulthood!

Students with ASD need more help in the following areas related to employment:

Social interactions with colleagues, organizational skills and sensory challenges.

Making the work activities adequately challenging, rewarding and/or meaningful.

Understanding different roles/careers – people with ASD often struggle to take perspective and envision what someone else’s experiences would be like (This is called Theory of Mind).

Preparing for and attending an interview—difficulties managing anxiety, reading social cues, and/or communicating appropriate information is often challenging.

Self-advocating - sharing information about personal needs and accommodations.

Mental health - ensuring stablility to be workplace ready. Many people with ASD also live with related mental health conditions such as anxiety or depression.

People also struggle due to a lack of general awareness of the strengths and abilities that someone with ASD can bring to the workplace.

Ideas for Schools:

Enroll students in co-operative education (co-op) opportunities in the community to help them explore their interests.

Educate co-op supervisors on cultivating talents and preferences of those with ASD. Ensure that there is a training plan in place that matches the individual’s learning style.

Support volunteer roles for people with ASD by actively offering opportunities and helping to ensure the individual is prepared for this role.

Make career planning and regular transition meetings mandatory. Students with ASD may require more time to contemplate and understand different career options. Additional meetings will help guide the individual to their career path.

Identify the individual’s strengths, skills, interests, talents and cognitive style through career assessment tools provided in schools across Ontario.

Connect with local community transition programs, colleges and employment services.

Ensure that the young adult contributes to their Individual Education Plan (IEP).

Ideas for the Individual and Family:

Participate in chores and regularly structured responsibilities in the home. Allowance or other rewards given for task completion is likely to be motivating.

Volunteer in the community, and seek out summer employment to get experience in a variety of settings.

Enroll in programs that focus on employment, life skills, and social skills to prepare for adult independence.

Connect the individual living with ASD to family and friends he or she can interview to gather information about specific jobs or careers.

Engage the person in job-shadowing opportunities.

Develop strong self-advocacy skills so that personal strengths and needs can be communicated to the employer in an effective manner.

Identify the person’s strengths, skills, interests, talents and cognitive style.

Make use of psycho-vocational testing and assessments.

When self-employment is viable, evaluate the individual’s talents, whether he or she has a product or service that has the potential to be sold, strengthen the individual’s entrepreneurial skills, and look for small business training and mentoring.

Written by: Sarah Duhaime, MSW, RSW – Employment and Life Skills Coach at The Redpath Centre.

The Redpath Centre (in Toronto, Ontario) addresses the social and emotional needs of children, adolescents and adults with Asperger Syndrome and mental health concerns through best practices, cross-sector collaboration, education and research. Our experienced clinicians bring their knowledge of Asperger Syndrome and related conditions to our work. For more information, visit: www.redpathcentre.ca.

References:

Accardi, C. & Duhaime, S. (2013) Finding and Keeping Employment. Autism Ontario Knowledge-Base: www.autismontario.com

Baron-Cohen, S., Leslie, A.M. & Frith, U. (1985). Does the Autistic Child have a “Theory of Mind”? Cognition. 21(1): 37-46.

Stoddart, K.P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., Burnham Riosa, P. and Bradley, E. (2013) Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in an Unprepared System. Toronto, ON: The Redpath Centre

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9. 7 Elementary / Secondary Education


9.1. Preparing for Kindergarten: Ideas for Families

Tip Sheet

Catherine Saul, B.A.Sc.

A child going to school for the first time is a milestone for every family.  When a child has special needs, the process of getting ready is even more important!  Everyone (the child with autism, their family, school staff and other students) benefits from good planning, clear information and some important activities in the months before a child begins his or her journey through the education system.

 

Planning

As kindergarten approaches, parents are encouraged to explore what is available in their area. Most child-care settings offer kindergarten programs.  Some children are involved in individual intervention or private therapy. School boards may offer full day kindergarten or all day/alternate day programs. Some schools have before- and after-school programs on site.  Some do not.  What is the best option?

Each child with autism and their family is unique.  What works best for one family may not be a good fit for another.  Take time to think about your child’s entire school day when planning the transition to kindergarten. What are your before and after school needs? What are your transportation needs? What is your child’s ability to adjust to change? Does he or she require a more gradual transition to school? If your child receives programming at home or therapy services, how will these fit in with school attendance? Can the school board provide transportation if you choose a modified school schedule for your child? Transportation procedures are locally determined and may change year to year therefore it is best to be informed about transportation guidelines prior to making any decisions.  

Transition to school is a significant step in your child’s life. It is important to make your own decisions.  Gather as much information as you can. Visit programs you are considering and start today.  The more time everyone has to get ready, the more likely this important transition will go smoothly.  Most early childhood or early intervention programs begin planning with families a whole year before school begins.

Many school boards have developed transition to school calendars or brochures. Ask your child’s school for information they have about transition to school for children with special needs.

A key part of planning the transition to school is to familiarize your child with the new environment. As your child’s transition plan is being developed, discuss ways of getting your child comfortable with the school prior to starting kindergarten.

An important part of preparing a child for kindergarten is practice being in a group setting. These opportunities can be provided in an early childhood setting that follows a predictable and organized schedule of activities and teaches daily routines and expectations in the classroom and on the yard. A child who has attended a preschool program has had the chance to learn to:

 

  • Do some activities on their own
  • Follow instructions
  • Participate in some classroom routines (circle time, snack, waiting in line)
  • Tolerate 20 (or more) other little people in the same room

 

The child who has learned these important skills is much more likely to be successful in kindergarten than one who has not.   Many preschool service providers support children with autism in an inclusive setting:  nursery school, child-care centre, drop-in or Early Years Centre, summer camp or a private home program. 

Sharing Information

Families know their children best.  An opportunity to meet with school board staff, share information about your child and create a transition plan is a key component of preparing for kindergarten. Providing a clear picture of your child allows school staff to better prepare for welcoming your child into kindergarten. Information to share with the school includes:

 

  • Your child’s strengths and needs
  • Diagnostic and medical information, including any special equipment your child uses
  • Skills your child has developed and what you have found helpful in teaching your child
  • Your child’s favourite activities, likes and dislikes and how to calm your child when he or she is upset, sad or fearful

 

Families who are uncomfortable sharing a diagnosis or describing their child’s needs risk that the school will not be prepared to properly support their child.  Parents may be tempted to just wait and see how well their child can adjusts on their own but they must avoid this approach when starting school.  This is unfair to a child with unique needs that usually become quite apparent within the first few days or weeks of school. At this point, staff and resources have been allocated and it is often too late to arrange additional support.

Collaboration and co-operation are keys to successful meetings and transitions.  The more information everyone shares, the better equipped everyone can be.

Classroom Supports

Many kindergarten teachers will have some experience having a child with autism in their classroom.  School personnel supporting a child with an Autism Spectrum Disorder have access to both in school and school board services. The types of services and accessibility of these services, varies from one school board to another. At the school level, the teacher can access the school resource teacher, who can pursue involvement of other professionals within the school board or through local service providers. 

When planning your child’s transition to school, it is important to discuss how preschool service providers can share their knowledge of your child and help support this important transition. Service providers are often willing to visit the classroom to share their experiences and success. Although actual assignment of support personnel is often not done until closer to school starting, parents are encouraged to ask about supports the school is planning to provide as early as possible, providing ample time to prepare.

Classmates

Students in an inclusive classroom will need information too, about how they might be helpful to a classmate who may need more supports or may have additional needs.  Many children’s books on the topic of disabilities and inclusion have been extremely helpful.  Specific coaching about how to encourage play, language or other skills can help other students play a meaningful role in interacting with and including a child with special needs. Be specific regarding the type of information about your child the school is permitted to share with classmates. At the kindergarten level, there is often no need to discuss the actual diagnosis, as this means very little to four year olds. The most important information to share is what children can do and say to support their peer with additional needs.

Challenges

Sometimes, despite the best planning possible, there are surprises and upset.  Ongoing communication and open discussion will go a long way to resolving most issues.  Talk to your child’s teacher, share your observations and concerns and plan what needs to be done, as a team.

Key words:  Preschool, Transition, Inclusion, Education, Kindergarten, Advocacy

References: York Region Early Intervention Services; Transition to School package


 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9.2. Strategies for Effective Home/School Communication

Tip Sheet

By Leslie Broun, M.Ed., ASD Consultant 

Communication between a student's home and school can have a significant impact on his school program, the on-going development of skills and on the relationship between parents and teaching staff. Many parents report that they wait anxiously to read the communication book at the end of the day and that their emotional state can be considerably influenced by its content.

 

  • As soon as possible, at the beginning of the school year, the principal, teacher, teaching/educational assistant and parent should meet to discuss and agree on the parameters for home/school communication with due consideration given to format, information to be included both from school and home, as well as the time constraints of all parties.
  • At school, the classroom teacher is responsible for the content of home/school communication. In some situations, a teaching/educational assistant, under the direction of the teacher, may do the reporting or guide the student through the process.
  • It is important for the teacher to write in the book at least once per week to update the family on the student’s activities and progress. Some teachers may prefer a weekly phone call.
  • Generally, a parent wants to know about the activities in which their child participated during the day, as this information can be used to engage their child in communication and/or give the family topics for conversation at the dinner table, such as:    
    • Which activities the student participated in during the day
    • New or improved demonstration of skills
    • Socialization with peers
    • Songs, stories, videos, thematic units
  • School staff will want to know if the student had a good sleep and got off to a good start that morning. This may influence his or her performance during the school day. News about special events and activities provides topics for communication, as well as literacy skill development activities.
  • Use this system to celebrate successes both at home and at school.  This is an important and positive experience for all involved. 
  • Both teachers and parents need to be sensitive to how messages may be perceived. Small things, such as pen pressure, capital letters or large script can convey anger. The communication book is not the place to carry on a difficult conversation. A person-to-person meeting is usually the best way to deal with any difficulties.

 

Health Issues

Some children have serious health issues, such as seizures, about which parents need information every day. Parameters for reporting must be clearly outlined. Collaboration between parent and school is critical: Decide on a way to report on health-related issues that is efficient for both home and school.

Reporting Behavioural Difficulties

 

  • Parents find it difficult and disheartening to receive a daily listing of their child's misdeeds. Most parents are only too well aware of the behavioural difficulties their child may experience. It is unnecessary to report daily incidents of non-compliance, off-task behaviour, etc. if these are a typical component of the child's behavioural profile.
  • Guidelines for reporting significant behavioural issues need to be clearly established with the principal, teacher, teaching/educational assistant and parent.
  • Occasionally, significant behavioural incidents do occur and must be reported. The communication book is not the forum for sharing this kind of information. The principal decides how this information is to be shared and often assumes this important role.

 

Tips for Setting Up a Successful Home/School Communication System

 

  • Involve the student in creating the system. It might be a notebook or binder. Students can be partners in preparing the pictures and content. This gives the student a sense of ownership and responsibility for the process.
  • Often, the job of writing in the communication book is left until the end of the day. However, by relating the student's visual schedule to the daily home reporting process and recording periodically throughout the day, both the schedule and communication with parents are reinforced. The preparation and maintenance of the communication book can be a valuable component of the student’s literacy program.
  • When possible, pictures of the student involved in school activities can provide the student with an excellent stimulus tool for information retrieval and communication. Importing digital pictures to a Word document is a simple process.
  • School boards usually have very clear policies about e-mail communication between home and school. Generally, it is not encouraged or permitted. Forwarding or replying to a message can alter original content, making all parties vulnerable. If you do not know your board’s policy, find out.

 

A guiding thought: What if a student’s home/school communication book fell off the bus and was found by a stranger? Would the child’s or the family’s dignity or privacy be compromised?

Always consider the ultimate purpose of home/school communication: We are reporting for students who, because of the nature of their disability, cannot do this for themselves.

 

Keywords:  Education, Tips for Parents, Tips for Teachers, Instruction, Teaching Strategies, Communication

 


 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9.3. Understanding the Role of the Educational Assistant

Joyce Mounsteven, Ph.D., ASD and Education Consultant              

Educational assistants are hired by school boards to provide, under the direction of the teacher, additional support to students in the classroom or the school. It is important that, as a parent, you understand the scope of this role and what is involved in allocating an educational assistant to a classroom.

Team Membership

The educational assistant is a member of your child’s educational team and as such may be asked for input into setting goals or for commenting on progress towards the Individual Education Plan (IEP) goals. It is not the role of the educational assistant to set up a programme or goals for your child – this is the role of the teacher. The attendance of the educational assistant at team meetings is at the principal’s discretion. You may request their participation if you feel that this would be important for the decisions that are to be made.

Communication

Although the educational assistant may be delegated the responsibility of daily communication with the family, it is the teacher’s responsibility to approve the content of the communication and to have the ongoing communication regarding a student’s programme and services, including academic updates and progress reports. Communication with the educational assistant is limited to pertinent information that could affect a student’s day (e.g. missed breakfast, slept poorly, will be picked up for an appointment, etc.). It is not the role of the educational assistant to provide parents with an academic update or progress report.

Allocation of Educational Assistants

Educational assistants are members of a union and as such are placed in schools based on seniority. This may result in an educational assistant being placed in a position requiring training in the specific needs of the students they are being asked to support.  As a parent, you can ask the teacher about the training that is available to the educational assistant. It is, however, the responsibility of the principal to arrange any training he/she feels is necessary.  The number of educational assistants assigned to a school is based on a review of the needs within the entire school board. Responsibilities assigned to an educational assistant within a school are based on the needs of the school as a whole and may vary over the course of the year as these needs change.

Supervision and Evaluation

The educational assistant is under the direction of the teacher. Performance evaluation and supervision of their work are the responsibility of the principal. Some school boards have a formal process for on-going evaluation of educational assistants but this is not standardized across the province.

Key Roles

The educational assistant serves a myriad of functions throughout the school day and can be an invaluable asset in the running of a smooth and effective classroom. Some of the ways in which an educational assistant can support the teacher are:

 

  • Preparing visual charts and reminders for either individual students or for the entire class to use
  • Priming (preparing) students for upcoming events so that they can make an easier transition to the next activity or location
  • Prompting students when they require some additional assistance and fading prompts as soon as the student is ready to complete a task more independently
  • Supervising students in both structured and unstructured settings
  • Re-teaching material the student requires more time to learn or that needs to be broken down into smaller chunks (under the direction of the teacher)
  • Facilitating interaction with peers and encouraging friendships with classmates
  • Assisting with personal care as outlined in the IEP (e.g. washroom routines, eating, etc.)

 

The scope of the support and services required by the students must be carefully planned so that the goal of increased independence is always foremost in people’s minds.

In some settings, the role of the educational assistant has shifted from one of providing assistance as needed to one of dependence.  This can become a barrier to inclusion and to independence. It is very important to be aware of the roles that are not helpful in moving a student towards independence. These include:

 

  • Taking on the role of parent (this can sometimes happen when a parent employs an educational assistant outside of school time for home support)
  • Becoming the student’s ‘best friend’ or ‘hovering’ over the student – constantly being at a student’s side can significantly impede his or her interaction with peers
  • Becoming the student’s voice – not allowing time for the student to make independent choices or speaking for them
  • Providing too many prompts, too often thereby severely impacting skill development. Spending all of their time with one student resulting in a student’s inability to work with anyone but ‘their’ assistant

 

Each teacher/EA team will develop their own unique working style to reflect their shared skill set and the unique strengths and challenges of the students. As a parent, it is recommended that you meet with the teacher and the educational assistant as a team so that you are fully aware of how their roles blend and how you will communicate with them as a team.

 

Keywords: Advocacy, Classroom, Education, Educational Assistant


 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9.4. Preparing for a Successful School Meeting

Sources: Chapman, Randy Ten Tips for Improving Parent Participation in IEP Meetings. Mauro, Terri. Before You Go to an IEP Meeting. About.com (no date), http://specialchildren.about.com/od/ieps/bb/beforeIEP.htm. Moir, Lindsay. Lindsay’s List: 10 Tips for Parents. Comhnadh Consulting. (no date), www.oacrs.com. The Right Question Project, Inc. A Constructive Mean to Advocate for your Family.  2001.

Review Documentation 

  • Look at the current Individual Education Plan (IEP), Behaviour Safety Plan (BSP) Report Card and any other documentation that you have received from the school
  • Review your child’s recent evaluations and assessments. If the school hasn’t provided you with copies, be sure to ask for them prior to any meeting.
  • Review notes from previous meetings (within the last year), as well as copies of the IEP, BSP and Report Card to see what changes or progress has been made. 

Prepare Your Questions & Concerns 

  • Make a list of questions you want to ask at the meeting.  Be aware of the difference between open (requires more explanation) or closed (yes or no answer questions) ended questions, and structure your questions in a way that is most likely to get you the type of answer you are looking for (i.e. instead of asking “Are you incorporating recommendations from our OT for his sensory diet into his day?” ask “Can you give me some examples of things you do daily that meet his sensory needs as per the recommendation from the OT?”
  • Make a list of your concerns, then see if you can break them into 3-4 manageable categories or topics; and then prioritize the points
  • Make a list of at least three things the school is doing well, as it is wise to provide them with positive feedback

  • If you need more room to express your points, create a document separate from your agenda that can be photocopied and handed out to everyone at the meeting. The document should summarize your suggestions and concerns.  Be sure to use bullet points, so that the document doesn’t overwhelm. Also, be sure to cite clear examples from within the past year, and the relevant education legislation 

Note Attendees 

  • To be well prepared, review the guest list to be informed of who will be present at the meeting. So, if it is a large group that includes both school staff and school board personnel, or a smaller more intimate team meeting, with just your child’s immediate school support team, you can be prepared accordingly.  When developing your questions, keep in mind who will be present.
  • If you are unfamiliar with the procedures for the meeting, whether it be an Identification Placement Review Committee meeting (IPRC), an IEP meeting, or a team meeting, check your board website for a “Parents Guide to Special Education,” as it clearly outlines the purpose and general contents of such a meeting
  • Prepare an agenda to share with the others at the meeting. This will help to keep them on track and ensure that you cover off all your points. Be sure to prioritize this list and put your most pressing points at the top.
  • Know the relevant educational legislation as it pertains to what you are discussing with the school. Much of this information can be found on the Ministry of Education website, or on your school board’s website in the Special Education Section 

Take Someone to the Meeting with You 

  • If possible, both parents should attend the meeting
  • It can also be helpful to have an advocate or support person present (family case worker, respite worker, educational advocate, etc.)
  • Many parents find it intimidating to “walk into a room of suits,” so try to bring someone along to the meeting so you are not alone. Also, a second pair of ears can be helpful later when reviewing the meeting with your partner or support workers for your child
  • Be sure to meet with the person who is attending with you before the meeting to ensure you both are “on the same page.” Also, they should make notes of the meeting. In the event that  one gets emotional or muddled, the other can step in and clarify
  • Review your agenda (if you choose to make one) with the person or people you bring along to the meeting so they are familiar with your goals
  • As a parent, you have the right to bring  individuals to the meeting that have knowledge and expertise that could assist you
  • If you have asked a professional to attend the meeting with you, be sure you know what their role will be before you get into the meeting. You want to be able to introduce them to the school team with a purpose of having them there. At the time when you invite them, discuss with them what their role will look like, and be sure you both have a clear understanding of those expectations
  • Also, think about seating arrangements in the meeting; if you want to make eye contact, sit across from one another; or if you want  a gentle nudge or hand squeeze, have the person sit beside you 

Meeting Scheduling 

  • Be sure it is scheduled at a time that is convenient for everyone (both the school team and your team)
  • You have a right to have a meeting rescheduled if the time the school initially suggests is not convenient for you
  • Be sure there is sufficient time scheduled for the things you want to cover with them, if there isn’t, request a longer meeting. You may even have to schedule it at a different time, or arrange a follow-up meeting to discuss the less pressing issues 

During the Meeting 

  • Ask all of the questions you prepared. It might be helpful to prepare an agenda to share with the others at the meeting to help them keep on track and ensure you are able to cover off all your points.
  • Identify your “allies” in the room, (they may be the people giving a gentle smile, or nodding along with your point). Identify these people, make eye contact with them, and ask them questions to get their opinion.  Don’t be afraid to ask a question you know the answer to, but you do it for the benefit of others at the table (i.e. around restraint policy, so the proper answer can be documented in meeting notes).
  • Educational professionals often speak their own language (using acronyms etc.). If you don’t understand something that is being said, ask for clarification, or make a note to look it up later
  • You do not have to agree with suggestions other members of the team recommend, nor do you have to sign any documentation if you are not comfortable with what it says (i.e. at the IPRC, and you disagree with the placement for next year), you are allowed time to go home and think about it
  • Reinforce good ideas.  If someone at the meeting shares a good idea (your team or the school team), acknowledge what a great idea it is, and be sure it is captured and explored
  • Be sure the meeting remains focused on benefiting your child. Sometimes issues around staffing, budget restrictions, etc. can overshadow the key point that the meeting is about your child and their success at school. If you feel the meeting is getting off track, always bring it back to your child and reinforce your child’s well-being as the focus
  • Keep notes of “next steps” agreed upon, or have someone you brought with you to the meeting, record them. This will ensure that you have a record.  It is also permissible to ask for a photocopy of the notes the school staff has taken, so you have a record of what they recorded and what you recorded.
  • Know when to call it a day and don’t be afraid to do so.  Often when we are frustrated at the end of a meeting, we can make rash decisions as a way of “getting out of there.” Most regret that decision later.  If you and your team, or the school team is visibly frustrated, then likely nothing productive will be accomplished. Suggest a date to continue the discussion and help to facilitate a few next steps that everyone can agree on, and work on in preparation for a solution-focused meeting next time 

Keep your cool 

  • Try not to take comments about your child personally, and if you do, try to keep those emotions as controlled as possible
  • It is permissible for you to ask for a washroom break if you notice you are getting too emotional and need to step back and regroup for a moment
  • Look back to your notes if you are getting off track, or getting muddled in your thinking, you prepared all those notes for a reason. Use them.
  • It is very important to keep the focus of the meeting on positive outcomes for your child. Don’t let your emotions, or reactions to things the school says, take away from the focus of the meeting. Emotional reactions can be damaging to school and/or parent relationships 

Re-examine Documents 

  • When you get home review the notes you have taken from the meeting, and follow up with an e-mail or letter if there is anything from your agenda that you feel you didn’t get to clarify or explain properly
  • Ask any lingering questions either by scheduling another meeting or through writing (e-mail or letter)
  • When the documentation from the meeting comes out (i.e. the IEP or BSP), compare it with your notes from the meeting and be sure that all points agreed upon are included, and clearly outlined
  • You have the right to request revisions to such documents, and these revisions need to be done in a timely fashion
  • Should any revisions be required, be sure to make your request in writing
 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9.5. Individual Education Plan (IEP) Meeting

Sources: Durham District School Board. Parents’ Guide to Special Education. Whitby, Ontario., 2009. www.ddsb.durham.edu.on.ca/Pdf/Spec_Ed_Plan/parent_guide_2009.pdf. Durham District School Board. Special Education Plan. Whitby Ontario. 2009 – 2010. www.ddsb.durham.edu.on.ca/Pdf/Spec_Ed_Plan/Special_Education_Plan_Oct_ 2009.pdf.

IEP stands for Individual Education Plan

An IEP is a written plan describing the special education program for a particular student.  It is a document that is written by the classroom teacher in consultation with the resource teacher, principal, and the parent.  It is a working document that reflects the current program and change as needed throughout the year.

IEPs are regulated under the Education Act and Regulation 181/98.

Each IEP describes:

 

  • The strengths and needs (instructional, processing, etc.) of the student
  • The program and services established to meet the student’s needs
  • How the program and services will be delivered (strategies)
  • How the student’s progress will be measured

 

Be sure that your IEP contains SMART goals:

 

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Timely

 

Be sure that the goals are specific and realistic.

For example: To say Jonny needs to achieve 80 per cent in math, is not specific and may not be realistic. 

It would be better to write: In math, Jonny is currently receiving 50 per cent and with assistance he achieves 60 per cent, so our goal for Jonny is that by the end of the year, he reaches 70 per cent. This would be a more realistic goal.

 An IEP is not:

 

  • A daily lesson plan of all activities the student will take part in
  • A list of every piece of information the student will learn
  • A permanent document – it can be and should be updated regularly

 

Who receives an IEP?

 

  • All students identified as being exceptional by an IPRC (Identification, Placement Review Committee) are entitled to have an IEP.
  • Any student who doesn’t have a recorded exceptionality, but the school suggests that the development IEP is necessary.
  • If a child is showing need for, or is already receiving additional support and programming, parents can request an IEP.
  • Parents and Teachers can begin the IEP process while waiting for the IPRC meeting to take place.

 

What to do when you get your IEP?

 

  • Take time to read it through, thoroughly.
  • Ensure that identification information (address, etc.) is correct.
  • Walk through each section ensuring that you are aware of the information and how it pertains to your child
  • Consult with someone at the school or community agency if you are unsure about any information in the IEP.

 

Understanding your child’s IEP

Accommodations: This is the “HOW” of an IEP – how will they teach it, or assess it, and how does the environment look, while he/she is doing it? The Ministry curriculum expectations stay the same as for non-accommodated students

Alternative program: Any program that is not defined by the Ministry curriculum. This can include such programs as Social Skills, Life Skills, Fine/Gross motor, Behaviour, etc.

Alternative Report Card: This is an additional report attached to the report card which outlines the success of all non-Ministry provided programs.

This will state the learning expectations and achievement for all alternative programs.

Annual program goal: The goal for the entire school year. The goal should be broad but still achievable in the applicable school year.

Assessment accommodations: strategies used during all formal and/or informal testing periods.

Assessment data: The most recent or relevant formal (Dr’s, Therapists, etc.) testing that applies to the student.

Assessment methods: The way in which the staff will gage achievement for that specific expectation.

Environmental Accommodations: physical changes provided in all applicable settings.

Exceptional Pupil: The education act defines an exceptional pupil as “a pupil whose behavioural, communicational, intellectual, physical, or multiple exceptionalities are such that he or she is considered to need placement in a special education program…” Students are identified according to the categories and definitions of exceptionalities provided by the Ministry of Education and Training.

Health Support Services: Any approved therapy programs, provided by an outside agency during school hours, on school property (OT/PT/SLP, etc.)

Human Resource Support: The regular classroom teacher is always attached to the child. This refers to other staffing supports provided to the student on a scheduled basis.

Individualized/Specialized Equipment: Any equipment that the school or board has purchased for the student through grant or program funds.

Instructional Accommodations: Strategies used to assist during the teaching times, both structured and unstructured.

Learning Expectations: The individual goals for this term, or portion of the year, that work towards the larger annual goal. These should be realistic, challenging and measurable goals.

Log of Parent Consultation: All contacts that involved discussion around the IEP for this school year only.

Modification: This is the “WHAT” of an IEP - what is the student learning or assessed on. These changes can be with the number of grade level expectations being reduced or the actual grade level of expectations being higher or lower.

Provincial Report Card: The standard report card which outlines achievement levels of all Ministry provided curriculum expectations.

Regular class with indirect support: the student is placed in a regular class for the entire day, and the teacher receives specialized consultative services.

Regular class with resource assistance: The student is placed in the regular class for most or all of the day, and receives specialized instruction, either individually or in a small group, and within the regular classroom by a qualified special education teacher.

Regular class with withdrawal assistance: The student is placed in the regular class and receives instruction outside the classroom for less than fifty percent of the school day, from a qualified special education teacher.

Special education class with partial integration: The student is placed by IPRC in a special education class, where the student-teacher ratio conforms to Regulation 298, section 31, for at least 50 per cent of the school day, but is integrated with a regular class for at least one instructional period daily.

Special education class full time: The student is placed by IRPC in a special education class, where the student-teacher ratio conforms to Regulation 298, section 31 for the entire school day.

Teaching Strategies: The tools used to teach/support that specific expectation

Transition Plan: For all students diagnosed with ASD (PPM 140) and students 14 years of age and older. Should outline any strategies that assist in preparing and managing transitions large and small.


9.6. The School System: FAQ

The questions listed below, about children and the school system, are addressed regularly to Autism Ontario’s staff. This document is not intended to be a comprehensive guide to helping your child navigate the school system; it is merely a tool to assist you in your journey.

For more information, please contact your local Autism Ontario Chapter office. See www.autismontario.com/Client/ASO/ao.nsf/web/OntarioMap to locate your local chapter.

This document contains the answers to: 

  1. What websites should I review or familiarize myself with that will assist my child’s integration and participation in the school system?
  2. My child just received a diagnosis of an ASD. Where do I begin? What can I do to help my child succeed in school?
  3. What are the key skills my child needs to develop and should be working towards before entering kindergarten?
  4. What do I need to do before placing my child into JK or SK?
  5. If my child is being bullied, where can I go for support?
  6. What steps can I take to ensure that the communication between me and my child’s school is effective and unobstructed?
  7. When communicating with my child’s school, what is the ideal relationship for ensuring a positive and productive working team?
  8. Where can I get a copy of my child’s school board’s Special Education Plan?
  9. Where can I find a template for an Individual Education Plan (IEP) and other resources?
  10.  What is the difference between an IPRC, an IEP and an SRT?
  11. When is my child’s IEP completed, and how many times is it reviewed?
  12. Who develops my child’s IEP? What information or documents are included? Am I allowed to attend this meeting?
  13.  What do I do if I am unhappy with my child’s IPRC? Is there any recourse?
  14. What is the OSR? Who has access to my child’s file? If it contains information that is inaccurate or out of date, what can I do to have it removed?
  15. Am I permitted to request an EA (Educational Assistant) for my child?
  16. What happens if the school boundaries change and my child is scheduled to be in another catchment area next year, and has been asked to change schools?
  17. How can I find out who my child’s teacher will be for the next school year?
1. What websites should I review or familiarize myself with that will assist my child’s integration and participation in the school system? 

The following are some important websites to familiarize yourself with: 

Overview of Special Education in Ontario: www.edu.gov.on.ca/eng/parents/speced.html.

Special Education Regulations in Ontario: www.edu.gov.on.ca/eng/general/elemsec/speced/regs.html.

The most important regulation that you should be familiar with is the Education Act; it can be found at the following link: http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_90e02_e.htm

Ontario Regulation 181/98 of the Education Act explains the steps taken by the Identification, Placement and Review Committee (IPRC) to identify a student as exceptional and to decide on a placement for the exceptional student. It also describes the procedure for appealing the decisions made at the IPRC.

For a summary of this document, see “Highlights of Regulation 181/98”:

Identification and Placements of Exceptional Pupils: www.edu.gov.on.ca/eng/general/elemsec/speced/hilites.html.

Ontario Regulation 306 describes the Special Education Programs and Services. www.e-laws.gov.on.ca/html/regs/english/elaws_regs_900306_e.htm

Policy/Program Memorandum No. 81 outlines the provision of Health Support Services (Speech and Language therapy, Occupational Therapy and Physiotherapy) in school settings. www.edu.gov.on.ca/extra/eng/ppm/81.html.

Policy/Program Memorandum No. 140 provides guidelines to Ontario schools for incorporating methods of Applied Behaviour Analysis (ABA) into programs for students with Autism Spectrum Disorders (ASD). www.edu.gov.on.ca/extra/eng/ppm/140.html.

The Ministry of Education has compiled lists of frequently asked questions, one for students with an ASD (www.edu.gov.on.ca/eng/general/elemsec/speced/autism.html) and one for special needs in general (www.edu.gov.on.ca/eng/general/elemsec/speced/Questions_and_Answers_Parents_English.pdf ).

Your school board should have a Special Education Plan in place, which you should find on their website. Typically this is found under the section, “Parents,” or the section labeled “Special Education”. In many school boards, you will also find A Parent’s Guide to Special Education, in this section. If you have difficulty finding these documents, contact your school board directly and they will be able to tell you where to find them.

2. My child just received a diagnosis of an ASD. Where do I begin? What can I do to help my child succeed in school?

Realize that you will be your child’s best advocate throughout his or her school years. It is important that you make yourself comfortable with the terminology used by educators, and that you have a good grasp of the regulations and practices guiding special education in your area.

You should also realize that the information you gather over the years about your child, will be substantial. Below are a few tips on how to manage all the paperwork that will be coming your way: 

  • Keep a file / binder with all assessments, reports, diagnostic letters, therapy progress reports, IPRC and IEP documentation.
  • Keep a notebook to document all your contacts with the school. If you attend a meeting, keep a written record of how you have interpreted the agreements made at that meeting. Doing this will provide clarity and prevent confusion later on. Also, be sure to date meetings, telephone conversations and note who was in attendance. With this information, you will be able to more easily advocate on behalf of your child.
  • Ask for the school’s minutes of the meeting. In almost all cases, the school will be documenting everything that happens in a meeting, and every phone conversation. You are well within your rights to ask for a copy of these notes for your own records. 

3. What are the key skills my child needs to develop and should be working towards before entering kindergarten?

The Toronto District School Board has developed a list of skills children will be required to demonstrate in kindergarten. This document can be found at the following link: www.edu.gov.on.ca/eng/parents/a4.pdf, and is summarized briefly below: 

  • Choices: provide opportunities for your child to make choices at home. For example, let them make choices about such things as clothing, activities, snacks, etc.
  • Sharing: if your child is currently enrolled in a daycare or preschool program, they likely have multiple opportunities to practice sharing of toys, craft materials and space. Be sure to encourage sharing and turn-taking as much as possible.
  • New environments: provide lots of opportunities for your child to adapt to new environments, and in particular, to learn the behaviour expected in those environments. For example, when at the library, where there are new people, a child must be quiet, and there are boundaries on where they can and cannot go, etc.
  • Independent dressing: encourage your child to dress and undress themselves as independently as possible, including while they are in the washroom. Allow them to put pants on and off, coats, and cold-weather clothing. Keep a close eye on the items your child struggles with and provide extra opportunities to practice with these. Also, keep in mind that it may be best to avoid dressing them in the clothes they struggle with most during the first couple of weeks of school, at least not until they are feeling comfortable with their new environment.
  • Communicate needs: provide many opportunities for your child to communicate their needs and wants to adults (both familiar and unfamiliar), as well as peers.
  • Identification of their name: talk with your child about their name, and give them lots of opportunities to see it in print; discuss the letters, and encourage any attempts to write their name independently without help.
  • Exposure to the curriculum: expose your child to numbers, shapes, patterns, sorting, estimating, and measuring. Talk about this in everyday life. For example, ask them how many chocolate chips are on their cookie, the shape of their ice cream cone, etc.
  • Encourage imagination: provide opportunities for arts and crafts, imaginative play, and songs and rhymes. Also, provide exposure to a variety of materials and equipment such as play dough, balls, sand tables, water tables, etc.  

4. What do I need to do before placing my child into a JK or SK?

The year before your child starts JK or SK, it would be best to do the following:

One year prior: 

  • Introduce yourself and your child to the school
  • Discuss the needs of your child
  • A friend, partner or advocate may attend for support 

Registration 

  • Attend registration clinic for your school and pick up registration package
  • Create a plan for your child. This should include the various members of the school your child will be interacting with, as well as the community services that your child requires 

January / March 

  • Continue to build your plan for the child’s school year with school staff and community partners
  • Attend school information meetings
  • Plan a time to visit the school with your child 

April / May / June 

  • Visit the school to familiarize your child with the school environment, include the classroom as well as any other spaces your child will access (gym, playground, etc.).
  • Visit www.edu.gov.on.ca/eng/parents/a1.pdf for steps to take before kindergarten. 

Source: Ministry of Education. “Effective Planning for Children with Special Needs.” Planning Entry to School: A Resource Guide. 2005.Government of Ontario. August 18, 2010. www.edu.gov.on.ca/eng/parents/specialneeds.pdf.

5. If my child is being bullied, where can I go for support? 

  • As soon as possible, talk with the school staff
  • As part of the school’s bullying-prevention program, teachers should discuss bullying openly in class and help students understand the importance of respect, caring about the feelings of others, and friendship
  • Ask to see the school’s code of conduct. It sets out how students, teachers, and other members of the school community should behave towards one another
  • Ask to see the school’s bullying-prevention policy. The policy outlines what the school staff can and should do to solve the problem
  • If, after a reasonable amount of time, you are not satisfied with the school’s response, contact the school board’s supervisory officer 

Source: Ministry of Education. “Bullying: We Can All Help Stop It.” 2009. Government of Ontario. August 18, 2010. www.edu.gov.on.ca/eng/parents/bullying.pdf.

6. What steps can I take to ensure that the communication between me and my child’s school is effective and unobstructed?

Effective communication is a key component to setting your child up for success.  Providing information up front, such as recent assessment reports, will give the educators better insight into your child, and how best to interact with him or her.  It is also important to communicate any additional information, as it will help educators develop and implement the educational program.  Ensure you discuss talents and skills that you see in the home or community, as well as likes, dislikes, preferred learning styles, and reactions to various situations.

Provide opportunities to work on skills that are being taught in the classroom in the home environment as well, and offer feedback on progress to the educators - remember that without your help, educators can’t know if skills taught in the classroom are transferring to your child’s home or community experiences. 

Frequent, open communication is important.  You can accomplish this by coordinating regular meetings between yourself and your child’s school team.  You can also accomplish this by using a daily communication log that travels between home and school.  This provides teachers with the opportunity to record comments about a child’s progress, as well as, any areas of concern. It also provides the parent(s) with the opportunity to write any new information about their child, such as a bad start to the day, or how they might be feeling, and so on. Talk to other parents about communication logs that they may have used as there is no “set style.” You need to find what works best for you, your child and the teacher.

Source: Ministry of Education. “The Individual Education Plan (IEP).” A Resource Guide. 2004. Government of Ontario. August 18, 2010. www.edu.gov.on.ca/eng/general /elemsec/speced/guide/resource/iepresguid.pdf.

7. When communicating with my child’s school, what is the ideal relationship that should be struck to form a positive and productive working team? 
  • Maintain regular and open communication, using plain language (no jargon). 
  • Connect with the school team, as necessary, to clarify information, ensuring that you and the child understand the IEP, its connection to the Provincial Report Card, and the IEP process.
  • Request written and telephone communication notifying you of meetings of the IEP team.
  • Ask to be informed of the topics that are to be discussed at IEP meetings, and who will be in attendance
  • Confirm, in advance, that you will be given the opportunity to become involved during the development of the IEP, and to be able to specify how you’d like to be involved, and to what degree.
  • Insist that you and your child be given the opportunity for meaningful input when developing the IEP.
  • Make arrangements to be provided with a copy of the IEP, and for your child to receive a copy, if he or she is 16 years of age or older, as this is required under Regulation 181/98.
  • Get assurance that the school will check regularly with you regarding concerns that you or your child may have, or that the school may have, and ask questions if necessary to gain understanding or to get clarification. 

If this is not the relationship you have come to know with your child’s school team, speak to them about what you can do to help facilitate this.  If necessary, ask community agencies, resource workers, advocates, friends, or other experienced parents to attend meetings and help you develop and foster this relationship.  It will make a world of difference for you and your child.

Source: Ministry of Education. “The Individual Education Plan (IEP).” A Resource Guide. 2004. Government of Ontario. August 18, 2010. www.edu.gov.on.ca/eng/general /elemsec/speced/guide/resource/iepresguid.pdf.

8. Where can I get a copy of my child’s school board’s Special Education Plan?

The following link will take you to a Ministry of Education document providing information about each school board in Ontario, including their Special Education Plan and Special Education Guide for parents. www.edu.gov.on.ca/eng/general/elemsec/speced/School_Board_SEPs_and_Parent_Guides_English.pdf

9. Where can I find a template for an Individual Education Plan (IEP) and other resources?

The following link will take you to a Ministry of Education website that provides a brief overview of the IEP as well as sample IEPs for a number of different exceptionalities, including Autism. www.ontariodirectors.ca/IEP-PEI/en.html

This is an additional link from the Ministry of Education regarding sample IEPs, and will actually demonstrate what the creation of your child’s IEP looks like.  You will need a user name and password to access. The username is IEPDemo and the password demo.  https://iep.edu.gov.on.ca/IEPWeb.

10. What is the difference between an IPRC, an IEP and an SRT?

An Identification and Placement Review Committee (IPRC) is composed of at least 3 people, one of whom must be a principal or a supervisory officer of the school board. The role of the IPRC is to decide whether or not a student should be identified as exceptional, to identify this exceptionality, to decide on an appropriate placement for the student, and to review the identification and placement at least once in each school year.

Parents, and students 16 years of age or older, may be present at and participate in all committee discussions about the student. Other people who may attend an IPRC meeting are: the principal of the student’s school; teaching staff, such as teachers and resource teacher; a representative of the parent or student who is16 years of age or older, to speak on their behalf and provide support; and an interpreter if required.

In writing to the principal, parents can request an IPRC. They should receive acknowledgement of this request within 15 days.

At least 10 days before the IPRC meeting, the parents will receive an invitation to attend and a written copy of all the information about the student that the chair of the IPRC has received.

In addressing the IPRC, the parents should prepare to make a case for their child. It should include the child’s strengths as well as areas of need.

Addressing the IPRC can be overwhelming and emotional, as speaking about one’s child in front of a large group of people is not a common occurrence for most parents. Solid preparation will help you overcome the uneasy feelings and increase your chances of receiving what your child needs.

An Individual Education Plan (IEP) is a plan outlining individual educational information, strategies and goals that must be prepared for a student within 30 school days after the student has been placed in the program or after the beginning of the new school year. Parents must be consulted in this process. An IEP will include the students strengths and areas of need (be sure to prepare your own list), results of any assessments done by school personnel or reports shared by the parents, current levels of achievement, specific educational expectations (goals will be set every reporting period, some goals will run over a longer period of time), details about specific special education programs and services, accommodations and modifications that the student will receive, and a transition plan can be included.

A School Resource Team (SRT) meeting is a meeting between school staff. This school resource team is usually comprised of the principal, the teacher, the special education resource teacher and at times, the educational assistant. Services available at the board level, such as the ABA consultant, the speech and language pathologist (SLP), and psycho-educational consultant can be asked to join the school resource team. The goal of an SRT could be to prepare for an IPRC, or to discuss a purchase of equipment through a SEA (special equipment amount) claim. Parents should be invited to all SRT meetings about their child, but it has been our experience that unless the parent specifically requests to attend, invitations have not always been forthcoming.

11. When is my child’s IEP completed, and how many times is it reviewed?

An IEP should be reviewed and updated a minimum of once per reporting period (that is, between each report card), and whenever necessary. 

An IEP should be considered a working document.  Changes to program goals, expectations, strategies, equipment, and support are to be recorded as they occur and communicated with the parents and student.

If the IEP contains only learning expectations for the first reporting period, the educator teaching that subject is responsible for recording the learning expectations being assessed in the second reporting period in the IEP; new expectations are to be communicated to the child and parents/guardians at the beginning of the second reporting period.  This also applies to the third reporting period in elementary school, as well as to non-semester secondary schools.

Source: Ministry of Education. “The Individual Education Plan (IEP).” A Resource Guide. 2004. Government of Ontario. August 18, 2010. www.edu.gov.on.ca/eng/general /elemsec/speced/guide/resource/iepresguid.pdf.

12. Who develops my child’s IEP? What information or documents are included? Am I allowed to attend this meeting?

Who develops my child’s IEP?

The IEP is developed by the teacher, the Special Education Resource Teacher and the parent. Input can be obtained from therapy providers, specialists, etc.

What information or documents are included?

The IEP documents: 

  • Strengths and needs of the student
  • Relevant medical diagnoses and health information
  • Relevant assessment data
  • The student’s current level of achievement
  • Accommodations needed
  • Modifications to the curriculum
  • Alternative programming
  • Annual program goals and specific learning expectations for each of the goals
  • Special education and related services provided to the student
  • Assessment strategies to measure progress toward goals
  • Documentation on parent consultation
  • For students 14 and over, a transition plan should be included. 

Am I allowed to attend the IEP meeting?

Parents should attend the IEP meeting and be actively involved in the process of developing the IEP, and not just be presented with the IEP, having had no input. They should prepare a needs statement about their child, and formulate some educational goals they want to see the school
work on.

13. What do I do if I am unhappy with my child’s IRPC? Is there any recourse?

While school boards and parent(s)/guardian(s) may agree on special education programs and services for a student without the assistance of an Identification, Placement, and Review Committee (IPRC), the formal IPRC process provides a good framework for both, parent(s)/guardian(s), and school board, to ensure that the needs of the student are fully considered. In the event of an issue arising as to whether or not a student is exceptional, or which program placement is most appropriate for the student, the first step parent(s)/guardian(s) and school officials should take, is to request an IPRC meeting, as set out in Regulation 181/98 (Section 14).  

If a parent/guardian is not satisfied with the identification or placement decision regarding their child, as determined by the IPRC, there are three steps that may be followed. The parent/guardian may: 

  • Within 15 days of receipt of the IPRC decision, request a second meeting with the IRPC
  • Within 30 days of the IPRC’s decision and in writing, appeal the decision(s)  to an Appeal Board set up by the school board through the secretary of the board (who is usually the director of education)
  • If the parent does not agree with the decision after the second meeting, he or she may file a notice of appeal within 15 days of receipt of the decision.
  • And then, if desired, further appeal to the Ontario Special Education Tribunal 

Source: Ministry of Education. “Resolving Identification and Placement Issues” Procedures for Parent(s) / Guardian(s). June 27, 2007. Government of Ontario. August 18, 2010.  www.edu.gov.on.ca/eng/general/elemsec/speced/issues.html.

14. What is the OSR? Who has access to my child’s file? And if there is information that is inaccurate or out of date, what can I do to have it removed?

The Ontario Student Record (OSR) is the record of a student’s educational progress throughout schools in Ontario. A child’s report card and personal information are stored in the OSR, which is kept at the home school office.

If your child has an identification of an exceptionality, and therefore an IEP, this information will also be included in the OSR. Additionally, any relevant assessments and medical (e.g. a diagnosis) and health related information (e.g. progress reports from occupational or physiotherapy) are stored there.

Teachers involved with your child have access to the OSR so they can learn about your child’s exceptionality, his needs and strengths, and his or her learning style. Also, with a consent form signed by the parent, psycho-educational consultants and other board staff,  can have access to the OSR. At the time when a parent signs the consent form, the length of time that these identified people have access to the file will be determined. Typically, it is for one year.

Annually and in writing, a parent should schedule an appointment with the principal to obtain access to the OSR to verify if all documentation is present, current and relevant. If a parent feels old documentation (e.g. a psycho-educational assessment that is older than three years, or a diagnosis that has been changed,) should be removed, it must be requested in writing to the principal. If documents are missing (e.g. decision statement from the IPRC), a parent should, likewise, request that it be added.  It is important that this file is up to date before the new school year starts, so the new teacher can have access to the latest educational information about your child. It is therefore suggested that the OSR files be “cleaned out” annually in early June.

Ontario Student Record Guidelines from the Ministry of Education can be found at www.edu.gov.on.ca/eng/document/curricul/osr/osr.html.

15. Am I permitted to request an EA (Educational Assistant) for my child?

A parent cannot request an EA for their child, however, they can list the various needs their child has. Having the support of an Educational Assistant is one way to address the needs a student has. Parents should share these needs with the SRT before the IPRC meets, and again at the IPRC meeting so that the placement recommendation can consider this information and make decisions appropriately.  Other ways to address the needs of the student can be through accommodations, modifications, school volunteers, classroom or upper level peers, a college student, and the Special Education Resource Teacher.

16. What happens if the school boundaries change and my child is scheduled to be in another catchment area next year, and has been asked to change schools?

Once aware of this change, a parent should fill out an optional attendance form for the current school, and provide the reasons why your child would benefit from staying at the current school. Optional attendance is only possible if the school has spaces available, and will be considered on an individual basis.  If optional attendance is not an option, then ask for a timely transition meeting between the current and the receiving staff and yourself, and organize for your child to visit the new class/school/teacher before the new school year starts.

17. How can I find out who my child’s teacher will be for the next school year?

Schools are able to give you a tentative name of the teacher for next year, usually by mid-June.  The current teacher or SERT, should go over this information with your child as part of the transition plan. A picture of the new teacher can be taken, a visit arranged, and a Social Story developed. This can be sent home, so that over the summer a parent can work with their child, which can facilitate the transition from one grade to the next.

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9.7. I Have Autism and I Need Your Help

By Teresa Hedley, Erik Hedley

You never know what’s good and what’s bad. This was one of my father-in-law’s favourite sayings, and I find myself drawing heavily upon it as I navigate the world of autism. A moody moment? An abrupt reply? A slammed door? I’ve discovered that difficult moments can be very revealing. They can be ‘good’ and instructive if we take the time to peel back the layers and figure out ‘why’?

So, with this in mind, I took the liberty of applying the ‘bad is good’ theory to my son’s grade eight school year. It was a year that produced some very thoughtful assignments and some excellent visual work, yes, but mostly, it was the year of repeated requests for consistent communication, organization, visual support and timely feedback. It was a tough year for a child with autism.

My son and I were tempted to turn our backs on the year and move on, but we thought better of it. Why not take the bottled up frustrations and turn them into something good? Why not take the year, look at it from the perspective of a teen with autism and articulate how it felt? Self awareness, after all, is the first step toward self-advocacy. If we could express what was difficult, we could also express how to create an atmosphere that would be a better fit for a student with autism. You never know what’s good and what’s bad.

So together we talked, we jotted and we wrote. We discussed the school year and recalled the very creative, visual projects Erik worked on and really enjoyed. We also discussed what made the year such a challenging one. He was very quick to reply, and he really hit the nail on the head: there was a lot of talking and it was hard to know what to do and how to do it. The process was very difficult to follow. 

Autism is often accompanied by anxiety. Anxiety arises from not knowing what to expect and projecting what 'might happen'. The more that is known - in advance - the lower the anxiety levels. Managing autism relies on providing structure, predictability and consistency. This is precisely where things 'caved in' this past year. Anxiety levels were very high and this spilled over at home. It was a difficult year for Erik and indeed for his 'home scaffolding'.

Given that autism appears to be on the rise - one in fifty-five boys now and this is based on 2008 data - we as special educators really have to get the methodology right for our exceptional kids. Fortunately, what is good for the exceptional population is good for all learners.

In Erik's response to me, he also hit the nail on the head regarding all three cognitive differences inherent in autism: central coherence (not being able to see the big picture and instead being side-tracked by the fascinating small stuff), theory of mind (assuming we all have similar thoughts and not being able to see things from another's perspective, also known as 'mind blindness') and executive function (finding it tricky to organize, synthesize, prioritize, manage time and so forth). All three of these cognitive differences were challenged this year given the mis-match between learning and teaching styles.

What we came up with is a list of what works and what is needed to reach kids with autism. The thoughts and perspectives are Erik's. I guided him with the structure and the writing process. He is very straight- forward, and one can sense this honesty throughout. I helped him shape his thoughts into something that is coherent and instructive. So, it is a mother and son effort and a bit of a catharsis at that!

For each point, we have jotted down the situation in italics, how it feels from Erik's perspective, and what is effective – indeed, 'best practices'. 

Erik and I sent this letter, attached, to our local school board so that the ASD perspective could be shared with district teachers. Our aim is to help exceptional learners be the best they can be. This requires an understanding of the unique perspective of students with ASD. If our difficult school year and its follow up make a difference, that would be a very good thing.

You never truly know what is good and what is bad.

Teresa Hedley is a mother of three, one of whom is on the autism spectrum. She is also a teacher with a special education background. She currently works as a Parent Autism Resource Consultant for Emerging Minds, an Ottawa multidisciplinary practice serving children and youth, many of whom are diagnosed with autism. Teresa will be joining the OCDSB Special Education Advisory Committee in the fall as a representative for Autism Ontario/Ottawa.

Erik Hedley is a hard-working teen who enjoys travel and exploration, working outdoors, cottage life, swimming, skating, skiing, all sorts of computer games and old-fashioned board games, too! He will be starting high school in the fall.

------------------------------------------
 
Erik's Letter

Dear Mr. ______and Mr._______,

One of my goals this year is self-advocacy. I am going to use it now.

I think you know that I have autism. I need your help.

I am leaving the school soon, but more children with an autism spectrum disorder (ASD) will be coming to the school. I am writing this so that you know how they might feel. They need you to see things from their perspective. They will be smart kids. You just need to know the best way to teach them. I need you to pass along my message.

Remember the Temple Grandin movie my class saw this year? We learned that Temple Grandin thinks in pictures. I do, too.

I liked seeing that film because I really liked seeing all of the things that Temple can do inside her head. I can also do some interesting things inside my head.

I can see little details that a lot of people don’t see. I can see when things change and I can see exactly what is different. To me this is really amazing!

I can memorize pictures. Sometimes I can see every page of a photo book inside my head. I know what is on each page, how the pictures are arranged, the background colour and style and the order of the pages. I thought everyone could do this but my family says, “No, this is an Erik thing.”

I have a good sense of direction. I usually know where I am and where other things are pretty quickly. My family calls me our Erik Positioning System – E.P.S..

Now I am going to tell you about the things that are hard for me. I will try to tell you how things feel from my perspective. After that I will tell you how teachers can help me. When you see the word ‘you’ from now on, it means ‘my teacher’.

Going into a classroom and not knowing what the plan is going to be is hard for meWhen you start talking without a plan, I feel nervous because I don’t know how long this will go on. I can hardly concentrate because I am wondering what will come next. I know that you use an outline for your staff meetings. You would feel lost without an agenda. That’s how I feel.

1. I need a plan written on the board.

2. I need to know what work we will be doing, about how long we have for each part, and what comes next.

3. I need to know when things are due.

This can all be in point form. When I was younger, teachers did this for the class with pictures.

Listening to a lot of words is hard for me. Sometimes I feel like a computer that is clicked too many times. You know when you see the screen go grey and the title ‘not responding’? That is how I feel. It is too much information coming in. I can’t think that quickly. I feel like my brain is shutting down and maybe you see me ‘not responding’, too. I feel very worried.

4. I need you to slow down and speak clearly.

5. I need direct and concrete language.

6. I need outlines for the important topics.

This way I can absorb the new information at my speed.

Copying a lot of work from the board is hard for me. I feel dizzy lifting my head up and down. My hand gets tired writing a lot of words. When you talk at the same time it is way too hard. I am not responding, my hand hurts and my head is dizzy. I am not learning.

7. If it is a detailed topic, I need notes or an outline written out.

8. I like pictures and diagrams. I think in pictures.

9. My desk needs to be facing the board and not sideways to the board.

When you ask us to write jot notes about the main ideas, this is hard for me. This is because I don’t always know what the main idea is. There is an expression that says, “He couldn’t see the forest for the trees.” I think that is like me. I notice the interesting details but I can’t figure out the whole message. So, when you ask me to write jot notes about new and hard topics and you ask me to figure out the main idea, it is nearly impossible for me.

10. I need an outline of the material written in your words. You could leave blanks

 and I could fill them in. Maybe you could circle or highlight key words.

11. I need you to show me how to write jot notes by giving me an outline and examples.

Because I have a hard time knowing what is important, it is hard for me to study for a test when there are so many notes and so many chapters. I feel like I don’t know where to start. I don’t know what we will have to do with the topics on the test.

12. I need study guides or practice worksheets.

13. I need to know what is important.

14. I need to know what I will have to do with the topics.

Sometimes I think you know what I am thinking in my head. I think you must know when I need the instructions again or when I am stuck, so I wait for you to come to me. Now I know that you probably don’t know what I’m thinking. My mom always says to me, “I’m not a mind reader. How could I know what you’re thinking?”

So that we are both thinking the same thing,

15. I need instructions written out.

16. I need things broken down into steps.

17. I need examples of what we are doing.

18. I need rubrics about what you expect before the assignment.

19. If you can, I need you to check with me that I am doing the right thing.

There are more things, but I think these are the most important. Now you might know what it feels like to be me. I feel nervous and stuck a lot.

I always try to do a good job at school. I know that I have to work hard. There is a paper called my individualized education plan. My mom showed it to me. It says that I learn best by having things written down ahead of time. It says I need outlines written out for me. It says I am a visual learner. It says I need practice sheets so that I know what to study. I think this plan is good for me.

20. Can you try your best to use my IEP, please?

Two of the most important things you can give me are predictability and consistency.

 I used to feel smart at school. This year I didn’t feel as smart. I can only do a good job if I am taught the way I learn best. I like it when my teacher says, “Be the change you wish to see in the world.” Maybe by writing down how things feel for me, I can help people learn more about autism.

21. But I need you to listen.

Mr. _____and Mr. _____, thank you for listening to me. I want you to know that I am smart. I work hard. I want to do a good job. I have autism and I need your help. Could you please pass my message along?

From Erik Hedley

P.S. Mom’s Note: Please provide structure and options during unstructured times (recess and lunch). Asking students with autism to go outside and ‘mingle’ is like asking a visually impaired student to negotiate the playground without a guide dog. Wandering, flapping, humming and rocking are not ‘autism’; they are a coping mechanisms and a reaction to an unsupportive environment. I think it is best explained like this: ‘Work is play and play is work.’

22. Structure and predictability are critical. Please respect the perspective.

P. P.S.: "Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I “can do it.” Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I’ve left your classroom." (Anonymous)

23. Believe in me.

As my poppa used to say to my mom and dad: “Erik will surprise you.”

I will surprise you, but I need your help.

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9.8. Suspension: What You Need to Know

By Ed Mahoney, Educational Consultant and advocate for students with special needs

The panic has been growing in you since you found the suspension notice that fell out of your child’s knapsack five minutes ago. Suspension? Conduct injurious to...? Then the phone rings. It’s the school.

Suspension – What is it?

“A suspension means students are removed from school temporarily for a specific period of time… Students cannot take part in school activities or events while suspended.”1 Principals can suspend a child as a result of inappropriate behaviour. A suspension is, at its heart, a form of discipline, a punishment. It is a means to “teach” a student that a given behaviour is wrong.

The Limits of Suspension

The Ontario Ministry of Education, in accordance with Human Rights Tribunal decisions and input, stresses that suspensions are only appropriate when the student is capable of “learning” from the action. Suspensions are not supported in legislation when a child, as a result of a disability such as a developmental disability or ASD (Autism Spectrum Disorder), cannot understand that their behaviour is “wrong”.

Consider the following. A child profoundly challenged by autism with no speech and little connection to the classroom bites another child who took away a string he habitually plays with. Clearly, a suspension would not be supported in this scenario.

A second situation where a child would not be expected to “learn” from a suspension would be where they might understand that an act is “wrong” but, due to a disability, have little or no control over their behaviour at the time in question. For example:

 

  • A child with Tourette’s yells an obscenity.
  • A student with a specific seizure disorder strikes out during their seizure.
  • A child with autism becomes over-stimulated in physical education class due to sensory challenges and strikes out at staff.

 

Realities

Parents must understand the reality of suspensions. First, the courts have indicated in recent decisions that a condition such as ASD does not, in and of itself, mean that a suspension is not appropriate. A principal might argue that even though a child has ASD, he/she is aware of the difference between right and wrong and has control over his/her behaviour.

A second practical consideration is that a principal has the power to suspend and it is the obligation of the family to challenge the suspension. In addition, even if the suspension is challenged successfully, this will likely happen after the fact and the student will miss the time in school during the suspension.

Therapeutic Withdrawal

“Your son is out of control and has hit another child. He will have to go home and stay home tomorrow.”

The practice of informal stays at home is common throughout the province. A parent is asked to take their child home. Some parents might believe this to be a suspension, but unless a child is formally suspended or excluded, a principal has no power to send a child home unless a parent agrees to the action.

Responding – Things to Consider

 

  • Consider requesting a suspension over an informal arrangement. For the most part, a suspension is not a judgment of your child but instead evidence of his need for individualized programs and services.
  • Work with medical and other professionals to validate and document the needs your child has that may result in challenging behaviour.
  • Consider appealing the suspension to the school board. This is your right.
  • Understand that, in some cases, repeat suspensions might constitute ample evidence of missing accommodations based on your child’s disability, an inappropriate placement and/or missing programming. These inadequacies might be addressed in potential Special Education or Human Rights Tribunals.
  • Cooperate in developing strategies to meet your child’s needs. Be an active and positive participant in seeking further support from both educational and medical sources.

 

This article is for educational purposes only and is in no way to be construed as legal advice.

For information about upcoming advocacy workshops and/or individual consulting, contact Ed Mahony at ed.mahony.advocacy@gmail.com

 

_____

References

1 Suspension and Expulsion - What Parents Need to Know

http://www.edu.gov.on.ca/eng/safeschools/needtoknowsexp.pdf

Students with special needs are not necessarily treated the same as non-exceptional students - Supreme Court of Canada - Eaton v. Brant County Board of Education (1997), 142 D.I.R. (4th) 385 S.C.R.241.

School Advocacy Hamilton

http://www.schooladvocacy.ca/left_level3/suspensions9.html

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9.9. Transition to Post-Secondary Studies

Perspective of a student with ASD- “What I would have liked to know!”

By: Vicki Laframboise, speech and language pathologist

The education world is more and more conscious of the importance of putting in place effective and feasible strategies to help facilitate the transition to post-secondary studies for students with autism spectrum disorder (ASD). Although this transition represents a crucial step in the life of ALL students, it remains a significant challenge for students with ASD, given the range of their needs.

In order to gain a better understanding of the reality of this transition for students, I spoke with a group of students at the University of Ottawa who had already experienced the transition to post-secondary studies. These students are enrolled in administrative studies, biochemistry, biology, economics, ancient studies, medieval studies and the Renaissance, computer engineering, geology, history, computer technology, mathematics and statistics, music, political science, sociology, translation, etc. In spite of the heterogeneity of their areas of interest and distinct experiences in secondary school, these students share one thing in common…all have received a diagnosis of ASD.

Briefly, whether you are a student, parent, teacher, teaching assistant or professional, here are three important considerations the students ask be respected to make the transition to post-secondary education as smooth as possible.

Consideration # 1: Provide the time necessary for a harmonious and positive transition

For students with ASD, the transition should be prepared gradually throughout secondary school. This allows the students to not only become familiar with the steps of the transition but also to gain a better understanding of some of the challenges they most likely will face.

“The development of the intrinsic skills necessary for the transition to post-secondary education is the key to individual success!”

Simple and practical strategies to help achieve this goal could be presented during workshops targeting specific skills:

 

  • Post-secondary life and all imaginable details…
    • In order to reduce anxiety related to novel situations, this workshop should, among other things, address the following topics in great detail:
      • Registration process
      • Purchasing school material
      • Loans, grants and scholarships
      • Lodging, etc.
  • Organizational skills
    • As organization skills tend to present a challenge for students with ASD, the following topics should be addressed:
      • Note taking
      • Calendars and schedules
      • Technology
      • Time management, etc.
  • Social aspects of post-secondary life
    • Students unanimously stated that social expectations were overwhelming. In addition to social skills often mentioned in the literature, it remains important to examine social rules/norms (implicit and explicit) related to behaviour and expectations:
      • In class
      • With professors
      • With other students
      • In residence, etc.
  • Tasks of daily living
    • What new tasks will the student be responsible for and how will these be organised?
      • Organizing mail
      • Laundry
      • Public transportation
      • Groceries
      • Finances, etc.
  • Parties, drugs and sexuality
    • Being well informed remains the best tool for students.
      • What to expect?
      • How to react?
      • The concept of “No” (for girls and for boys)
      • Understanding limits related to alcohol, medication, etc.
  • Workforce
    • Preparation for the workforce will allow students to gain some knowledge about student jobs.
    • Looking for work
    • Curriculum Vitae
    • Cover letters
    • Interviews, etc.

 

The following list is not exhaustive therefore it is important that the workshop facilitator take into account specific needs expressed by participants as they relate to their personal experiences:

Consideration # 2: Guide the student in order to maximize his or her knowledge.

“The more the student is informed and equipped, the more he or she will be able to make appropriate and personally relevant choices.”

It is essential that students inform themselves and be informed about student services available at the post-secondary level. Guided by an adult, friend and/or mentor, students must attempt to find answers to the questions below.

Help the student create a checklist to ensure nothing is missed. Establishing a system to keep all information together is also essential (e.g., charts, grids, notebook, etc.)

Here are a few examples of questions to ask:

 

  • What are my rights as a student with special needs?
  • What are the legal obligations of the educational institution I chose to attend?
  • What programs and services are offered to students at the school I chose to attend?
  • Who is the resource staff I can speak to or meet?
  • How do I get help to complete applications for grants, loans, and scholarships?

 

The primary role of the friend, mentor or adult is to educate the student about the process by helping him or her anticipate the questions that need to be asked.

Consideration # 3: Respect the student’s learning style, rhythm and differences.

“How can I ask for help when I don’t even know I need help???”

All students mentioned the importance of discussing with them the possibility, importance and positive effects of having a reduced workload at the post-secondary level. It is essential to keep in mind that changes are possible but also that there are always exceptions. It is crucial to be informed!!

In closing, I would like to thank the students who so generously shared their experiences and suggestions with me.

“It is by listening to you that I learn and from guiding you that I understand.” Vicki

Here are two additional key comments:

“The system is too rigid and there must be a path allowing students to learn to learn.” – Student at the master’s level

“Many students with Asperger’s Syndrome are intelligent enough to develop their own social skills. However, a program targeting independence would promote quicker and more effective learning in this domain.”  – Student at the doctorate level

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9.10. Model for an ASD Centre

Model for an ASD Centre – For Students from Grades 7 to 12

By: Anne Gingras, resource teacher-autism spectrum disorder (ASD)

An ASD Centre is a novel support model where the characteristics, associated features and needs of students with ASD guide the activities with the goal of continually providing tools to the students in preparation for the eventual transition to adult life. (École secondaire catholique Algonquin – Conseil scolaire catholique Franco-Nord)

Creating an ASD Centre in an educational institution is beneficial, as much for students with ASD as for other students facing their own challenges, without having received a diagnosis of ASD. Here are some key elements to consider in the set up of this type of room:

Room Choice

 

  • Choose a room that is easy to access during the school day, preferably in the centre of the school. This encourages daily visits by students with and without ASD.

 

Open Door Policy during breaks and lunch periods

 

  • Allow students with ASD to fraternize with their peers, while developing social, communication and self-regulation skills in a welcoming and understanding environment.

 

Physical Set Up and Equipment in an ASD Centre

 

  • Work Tables: for individual work, group activities, discussions and group lunches.
  • Kitchen Corner: refrigerator, dishes, sink, microwave, etc. to help encourage the development of activities of daily living and a sense of responsibility.
  • Relaxation Corner: an area apart, dimly lit with different relaxation tools (e.g., bubble tubes, beanbag chair, heavy blanket, fibre optic lights, fidget items).
  • Study Carrel: for individual or quiet work – when a student wants to be on his or her own, yet still be part of the group.
  • Sitting Area: a library with books on ASD that may be of interest to students. Also include comics, magazines on video games, sports, animals, etc. Comfortable chairs allow more personal conversations between students or between staff and students, particularly in a time of crisis or for important discussions.
  • Whiteboard: to write the thought of the day or the week as well as the date. An opportunity to reflect on the hidden curriculum.
  • Aquariums: in addition to creating a peaceful area, the presence of an aquarium encourages the sharing of knowledge and ideas and might even trigger new interests. The upkeep helps develop a sense of responsibility in the students.
  • Games corner: chess – cards - Lego® - to learn to play different games, develop social skills, share ideas, negotiate, compromise, etc.
  • Dividers: to separate one area from another and allow students to be alone, yet among others.
  • Sensory material: different objects to accommodate the sensory needs of the students: stress balls, fidget items, modelling clay, etc.

 

Other important aspects to consider

 

  • Lighting: it is preferable to avoid fluorescent lights. Opt for indirect natural light. Students appreciate lamps and lava lamps, which create a calm atmosphere and take into account their sensory differences.  
  • Entry and exit register: to monitor students’ comings and goings and as data, as needed.
  • Visual aids related to ASD needs on the walls: Circles of intimacy, zones of regulations, types of breathing, mantras/key phrases (instruments of the mind) as well as more specific strategies, all essential to self-regulation and social comprehension.

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
9.11. Supporting Communication in High School

Reproduced from Autism-At-A-Glance, February, 2014

Students on the autism spectrum exhibit characteristic difficulties associated with communication. Deficits appear in three main areas: comprehension, expressive communication, and interacting with others.

Comprehension

Understanding verbal and non-verbal communication

Potential Areas of Difficulty Related to Comprehension

 

  • Speed of processing language. Students may process comments, questions, and directions more slowly than would be expected for their academic or cognitive abilities or age.
  • Non-literal language. Students may struggle to understand sarcasm, hyperbole, figures of speech, or other forms of non-literal language.
  • Inferences. Students may have difficulty reading between the lines or making assumptions about information that is not directly presented.
  • Vocabulary. Students may have difficulty generalizing vocabulary words outside of the specific contexts in which they were learned.
  • Point-of-view. Students often struggle to understand points of view other than their own, which can inhibit their understanding of oral and written language.

 

What This Might Look Like in the Classroom

 

  • Mr. Van Rynbeck tells the students to put their pencils down and pass their papers forward, but Darnell takes 10 seconds to put his pencil down, and does not pass his paper forward until he gets another prompt.
  • A peer says “thanks for letting me know” after Garrett rudely corrects her, and Garrett responds with a very sincere “you’re welcome,” not understanding the sarcastic tone.
  • The short story mentioned “an emotionally draining year” and a character’s “first birthday dinner without his mom,” but Monique could not figure out that the character’s mom had died.
  • In classroom discussions, Khaled struggles to understand the arguments of peers who have different opinions and values from his own.

 

Expressive Communication

Using verbal and/or non-verbal means to convey a message

Potential Areas of Difficulty Related to Expressive Communication

 

  • Sentence formulation. Students may have difficulty putting words together fluidly, which can show up as struggling to find the right words or abandoning sentences mid-stream or using long sentences without much actual content.
  • Vocabulary. Students may have limited expressive vocabulary or, at the other extreme, may use unusually complex, obscure, or formal vocabulary.
  • Stereotyped speech. Students may use certain words or phrases over and over.
  • Nonverbal communication. Students may have difficulty using appropriate tone of voice or body language or gestures. Their tone of voice or body language or gestures may be confusing or off-putting to others.

 

What This Might Look Like in the Classroom

 

  • Oskar says “as a matter of fact” before nearly every comment, which is noticed by his teachers and peers.
  • When asked a question about how he solved a math problem, Jeremy starts his response with “I was putting together, well, adding, I mean multi…actually, first, I was, I looked at the formula…”
  • Ashleigh is excited about her upcoming art show, but when her homeroom teacher asks about the show, Ashleigh speaks in a monotone voice with her arms crossed over her chest.
  • Emmett uses obscure and oddly formal vocabulary stating “Actually, I have impaired emotional capacity, which makes the possibility of a romantic relationship virtually inconceivable, at least for the foreseeable future” after being asked if he will invite anyone to the homecoming dance.

 

Interacting with Others

Using communication to collaborate or engage with others

Potential Areas of Difficulty Related to Interacting with Others

 

  • Initiating interactions. Students may be less likely to initiate casual communication with others. They may also over-initiate communication at times, such as blurting out, interrupting, or asking too many questions.
  • Conversation. Students are challenged by the give and take of conversation. They may have difficulties starting or ending conversations.
  • Maintaining topic. Students have a hard time staying on topic. They may make tangential or off-topic comments or stay on a preferred topic for too long.
  • Reading non-verbal cues. Students have difficulty interpreting facial expressions, gestures, and body language during conversations.
  • Perspective taking. Students may have difficulty understanding the perspective of another person, which may result in misunderstandings with others.

 

What This Might Look Like in the Classroom

 

  • Janella wants to make friends. Yet, during downtime in her advisory period, she looks at peers who are talking, rather than joining the conversation.
  • Despite his peers looking at their watches and tuning out, James continues to talk about obscure naval military battles.
  • Nyoshi will engage in conversation with peers by asking questions, but rarely comments or expands on their answers, typically just switching to a new question.
  • While talking about future plans, Tony says “Anyone who doesn’t go to college is either an idiot or worthless,” not recognizing or understanding that some people may struggle with school or may have career plans other than college.

 

There are numerous approaches you can use to support and encourage comprehension, expressive communication, and/or interaction in the high school environment. Some of these key strategies and examples include:

1. Priming: Provide information about tasks or activities ahead of time to support comprehension and expressive communication in the classroom.

 

  • Provide an outline of class notes or written directions.
  • Offer a list of questions to student before the beginning of class so they can formulate answers ahead of time.

 

2. Additional Processing Time: Build in extra time for support in processing and responding to directions or questions presented to the class.

 

  • Warn the student that you will be asking them to respond to the question next.
  • Have the class think about or write down answers for 15–30 seconds before raising their hands.
  • Modeling: Demonstrate and identify appropriate use of communication and social skills.
  • Model target communication skills and social skills in class to the student.
  • Model appropriate ways for peers to interact with and respond to the student with ASD
  • Show a video of another person or the student appropriately performing the target skill(s).

 

3. Peer Supports: Encourage and coach peers to provide supports (e.g., prompts to participate in discussions) to the student in class.

 

  • Intentionally seat the student near peers who you have coached to provide support.
  • Give the student specific roles within small group activities that challenge the student with ASD to practice target skills (e.g., group leader for a student who needs practice initiating).
  • Give the student a list of topics or questions to use when initiating conversation.

 

4. Social Connections: Help students to connect with peers in and out of class.

 

  • Point out commonalities or shared interests with peers in the class.
  • Sponsor a club around a student’s interest.
  • Offer your classroom as a meeting place and arrange a lunch group once a week.

 

Important Reminders

Slow Down, Support, and Simplify

 

  • Remember, high school environments are fast-paced and complex which often makes comprehension, communication and conversations more difficult for students with ASD. Think of strategies to slow the pace, minimize confusion, and reduce complexities in conversations, activities, and other situations.
  • Use a subtle signal that the student knows to indicate when you are joking or using sarcasm or when the student is drifting off topic.
  • Pair visual supports with verbal instruction in order to maximize comprehension and capitalize on strengths and preferences for visual modalities.

 

Provide Specific Positive and Constructive Feedback

 

  • Offer specific feedback to the student (and others in the class) about their communication skills. General feedback, such as “good job” or “nice work in class”, does not provide enough information to reinforce specific target skills.
  • “Nice job focusing on the main idea. Next time try to look up at the class when you talk.”
  • “I like how you are facing me while you listen. It might be helpful to give some other clues that you are listening—maybe nodding your head or saying ‘uh-huh’.”

 

Resources

American Speech-Language Hearing Association: http://www.asha.org/slp/clinical/autism-resources/

Understanding Autism: A Guide for Secondary School Teachers

DVD: http://www.researchautism.org/resources/teachersdvd.asp

Brochure: http://csesa.fpg.unc.edu/resources/understanding-autism-guide-secondary-school-teachers

Recommendations for Students with High Functioning Autism: http://teacch.com/educational-approaches/recommendations-for-students-with-high-functioning-autism-kerry-hogan

Understanding the Student with Asperger’s Syndrome: Guidelines for Teachers: http://www.aspergersyndrome.org/Articles/Understanding-the-Student-With-Asperger-s-Syndrome.aspx

 

Permission is granted to reprint this Autism at-a-Glance if you acknowledge CSESA and the authors of this document. For more information please visit CSESA at http://csesa.fpg.unc.edu/ or https://www.facebook.com/csesa.asd

The work reported here was supported by the Institute of Education Sciences, U.S. Department of Education through Grant R324C120006 awarded to UNC-Chapel Hill. The opinions expressed represent those of the authors and do not represent views of the Institute or the U.S. Department of Education.

Suggested citation: Butler, C., & Dykstra, J. (2014, February). Supporting communication in high school (Autism at-a-Glance Brief). Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, CSESA Development Team.

9.12. Supporting Functional Communication in High School

Reproduced from: Autism At-a-Glance, February 2014. (Autism at-a-Glance is a publication of the Center on Secondary Education for Students with ASD (CSESA).

Students on the autism spectrum exhibit characteristic difficulties associated with communication. Deficits appear in three main areas: comprehension, expressive communication, and interacting with others.

COMPREHENSION

Understanding verbal and non-verbal communication

Potential Areas of Difficulty Related to Comprehension 

  • Speed of processing language. Students may process comments, questions, and directions more slowly than would be expected for their academic or cognitive abilities or age.
  • Following directions. Students may have difficulty following directions, especially multi-step directions, directions that are presented only verbally, and directions that are out of context.
  • Questions. Students may struggle to understand and answer functional questions, even when they know the content or answer of the question.
  • Pronoun confusion. Students may have trouble understanding pronouns, especially “I” and “you.”

What This Might Look Like in the Classroom 

  • Mrs. Clarendon tells Charlie to staple his papers together, hand in the papers, and sit down. Charlie staples the papers, but then sits down without handing the papers in.
  • A peer asks Whitney “Do you have any pets?” Whitney says “I don’t know” even though she talks about her dog all of the time.
  • Vincent has difficulty following 1-step directions if his teacher does not provide some type of gestural or visual prompt. 

EXPRESSIVE COMMUNICATION

Using verbal and/or non-verbal means to convey a message

Potential Areas of Difficulty Related to Expressive Communication

 

  • Verbal language. Students may have very limited or no verbal language, and may struggle to put together phrases or sentences.
  • Pronoun reversal. Students may mix up pronouns in sentences, especially “you” and “I.”
  • Stereotyped or scripted speech. Students may use certain words or phrases over and over, or use scripted phrases from TV shows or movies.
  • Echolalia. Students may repeat verbatim words, phrases, or sentences that were just said to them or were said to them previously.
  • Nonverbal communication. Students may have difficulty using appropriate tone of voice or body language. They may have monotone speech, have exaggerated intonation, or have an odd vocal quality.

 

What This Might Look Like in the Classroom

 

  • Leo does not speak at all, but uses gestures and points to pictures to show what he wants.
  • Tanner says “Do you need a break?” when he really means “I need a break.”
  • Alexis regularly uses lines from TV shows and movies in her speech. For instance, every time she doesn’t want to do something, she says “I can’t be a princess,” a line from her favorite movie, The Princess Diaries.
  • Gerald uses a high-pitched and sing-songy voice with a cartoon-like quality when he talks.

 

Interacting with Others

Using communication to collaborate or engage with others

Potential Areas of Difficulty Related to Interacting with Others

 

  • Initiating interactions. Students may be less likely to initiate communication with others, such as greetings or asking questions.
  • Conversation. Students are challenged by the give and take of simple conversation. They may have difficulties responding to questions or comments from others, or taking turns in conversation.
  • Reading non-verbal cues. Students have difficulty interpreting facial expressions, gestures, and body language during interactions with others.

 

What This Might Look Like in the Classroom

 

  • Every time Yusef starts a conversation, he says, “Hello, what is your name?” even if he already knows the person.
  • Danny goes up to his classmate who is clearly upset and begins to talk about how excited he is for the truck rally this weekend, not picking up on the classmate’s mood.
  • Kristy only initiates interactions to get her needs met (e.g., requesting), and rarely initiates for social purposes (e.g., greetings, commenting, conversation).
  • Andre rarely engages in interactions with peers or staff, not out of disinterest, but because he has difficulty with initiations and responses.

 

There are numerous approaches you can use to support and encourage comprehension, expressive communication, and/or interaction in the high school environment. Some of these key strategies and examples include:

1. Visual Supports

  • Provide objects, gestures, pictures, or written cues to support comprehension and expressive communication in the classroomUse pictures or writing with verbal directions and questions to support understanding.
  • Give cards with conversation starters, topics, or jokes to promote interaction during lunch or other times during the day. 

2. Additional Processing Time

  • Build in extra time for support in processing and responding to directions or questions presented to the class.
  • Make sure to pause for at least 5 seconds after giving a direction or asking a question.

3. Opportunities for Communication

  • Arrange the environment in a way that encourages, and even necessitates communication.
  • On occasion, put away materials that are necessary for a familiar routine (e.g., worksheet) so the student has to communicate in order to get the materials.
  • Embed times for casual conversation during the day, just as you would see students doing during the day, similar to what you may see during passing time between classes.
  • Use topics of interest to the student during class to increase interactions.
  • Offer students the opportunity to communicate a choice whenever possible.

4. Modeling

  • Demonstrate and identify appropriate use of communication and social skills
  • Take short videos of other high school students (or your student) modeling appropriate communication and social skills and show the videos to your student
  • Use classroom staff or peers to model skills live (e.g., turn taking in conversation, initiating an interaction).

5. Peer Supports and Social Connections

  • Find other high school students that may be able to support the student with communication and social connections in class or around school
  • Find clubs or sports teams for the student to join that align with his/her interests
  • Arrange a lunch group with other high school students
  • Start peer programs or have high school student interns in your classroom

Important Reminders

Slow Down, Support, and Simplify 
  • Remember, high school environments are fast-paced and complex which often makes comprehension, communication and conversations more difficult for students on the autism spectrum.
  • Think of strategies to slow the pace, minimize confusion, and reduce complexities in conversations, activities, and other situations.
  • Provide information in small chunks – one step of a series of directions or one question at a time.
  • Think of ways to embed visual supports around the school environment—in the cafeteria, the media center, the gym, and more.
Provide Specific Positive and Constructive Feedback 
  • Offer specific feedback to the student about their communication skills. General feedback, such as “good job” or “nice work in class,” does not provide enough information to reinforce specific target skills.
  • “Nice job giving an answer to the question David asked you.”
  • “I like how you said ‘hi’ to other students in the library.”

 

 

RESOURCES

American Speech-Language Hearing Association

www.asha.org/slp/clinical/autism-resources/

Augmentative and Alternative Communication Resources

www.asha.org/slp/clinical/aac/

Communication Bill of Rights

www.asha.org/NJC/bill_of_rights.htm

Understanding Autism: A Guide for Secondary School Teachers

DVD

www.researchautism.org/resources/teachersdvd.asp

Brochure

csesa.fpg.unc.edu/resources/understanding-autism-guide-secondary-school-teachers

State Assistive Technology Resources

resnaprojects.org/allcontacts/statewidecontacts.html

 

*A Note About Augmentative and Alternative Communication (AAC)

Augmentative and alternative communication (AAC) is a field that focuses on helping individuals augment or compensate for significant challenges in the area of communication using various systems or aids. The goal of AAC is to maximize effective communication for an individual. AAC systems/aids may be high-tech (e.g., applications on an iPad, speech-generating devices) or low-tech (e.g., picture symbols, communication boards, sign language). When considering different systems/aids, it is important to include someone with expertise in AAC.

School districts may have a person or team of people who are able to evaluate and support students who have limited verbal abilities and need alternative methods for communication. This team may consist of special educators, speech language pathologists, occupational therapists, physical therapists, or others. If you have a student who may benefit from AAC or uses some form of AAC, look for contacts in your district or in your local area to help support these students in maximizing their communication.


Autism At-a-Glance

Permission is granted to reprint this Autism at-a-Glance if you acknowledge CSESA and the authors of this document. For more information please visit CSESA at csesa.fpg.unc.edu/ or www.facebook.com/csesa.asd.

The work reported here was supported by the Institute of Education Sciences, U.S. Department of Education through Grant R324C120006 awarded to UNC-Chapel Hill. The opinions expressed represent those of the authors and do not represent views of the Institute or the U.S. Department of Education.

Suggested citation: Butler, C., & Dykstra, J. (2014, February). Supporting functional communication in high school (Autism at-a-Glance Brief). Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, CSESA Development Team.

10. 8 Intervention Options


10.1. Before Choosing an Option

Spirale Factsheet #1: www.autismontario.com/spirale

There are now a great number of approaches and treatments available for people with autism and parents and professionals may find it difficult to decide which approach is best-suited to their individual circumstances.

It is important to remember that, although different approaches have been known to work for some people with an autism spectrum disorder, these approaches have not been evaluated on a long-term basis. Before using any particular approach it is best to find out as much information as you can about it. Any approach should be positive, build on people’s strengths, and help to discover their potential, increase motivation and provide opportunity.

Here are some questions to consider before choosing an approach.

About the approach

 

  • What does the approach claim to do?
  • How does it work?
  • How was it developed?
  • How long has the approach been in existence?
  • How many people have been treated and what was the outcome?
  • How long is the course of treatment?
  • Does the approach focus on one particular skill or does it offer more general treatment?
  • Are treatment goals individual (i.e., based on the needs of each individual)?
  • Exactly what involvement is required from the person with autism, their family, and professionals working with them?
  • Is there a brochure or other written information?

 

Credentials of staff

 

  • What is the background of the program director and staff?
  • What are the qualifications of the program director and staff?
  • What is the experience of the program director and staff with individuals with autism?
  • Have the program director and staff worked with people who have similar needs to my child before?

 

Costs

 

  • How much in total does the approach cost? This total cost might include enrolment and registration fees, course fees, the cost of course materials and your travel costs.
  • Can costs be refunded if the approach is not effective?

 

Facilities, equipment and modifications

 

  • When and where will the treatment take place?
  • Will special adaptations or modifications to the person’s home be needed?
  • Will special equipment be needed?
  • Will we have to suspend other treatments?
  • Will we have to suspend or modify other family activities?

 

Effectiveness of the approach

 

  • Is there supporting evidence for the approach’s effectiveness from other parents and professionals, 
  • or any research available on its use?  
  • Can I talk to other parents who have tried the approach? 
  • Are there any known side-effects?
  • Are there many cases where the approach has not worked and what were the circumstances?
  • Are there many cases where the approach made things worse and what were the circumstances?
  • Is there a complaints procedure?

 

And remember

 

  • Be skeptical about any approach that claims to ‘cure’ autism. Parents whose child has just received a diagnosis may be particularly susceptible to trying anything. Autism is a lifelong condition and although certain approaches may help control and manage characteristic behaviours and/or enhance particular skills that make life for the individual much easier and more enjoyable, they will continue to require some level of support and assistance throughout their life.
  • Do not rush judgment about any particular approach if you have only been using it for a short period of time. Changes in behaviour at the beginning may be temporary and settle back into a usual pattern so it is best to evaluate effectiveness in the long-term to decide whether the individual benefits from any particular approach.
  • Be wary if you are advised that the individual cannot improve unless one particular approach is used. Every person is different and what works for one person with an ASD may not necessarily work for another. You may also find that the individual may improve to a certain extent without the implementation of any professional approaches. Interventions are mainly used as additional tools to help aid development more quickly and easily.
  • Be wary of any method which suggests it is the only/best approach to use and cannot be used alongside other approaches. Many approaches are compatible and can be used alongside others to give the most comprehensive support to an individual with autism.

 

Adapted and reproduced with kind permission of The National Autistic Society 2011.

If you are interested in the National Autistic Society you can find more information on their website: www.autism.org.uk.

 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.2. Typical interventions

Spirale Factsheet #2: www.autismontario.com/spirale

There is no single treatment or treatment package for children and adults with ASD.  Professionals do agree that early intervention is important and that people with ASD respond very well to highly structuralized programs.

Most people respond to some combination of the following programs and interventions: 

  • Specialized educational programming based on highly structured behavioural approaches such as Applied Behavioural Analysis (ABA) and Pivotal Response Treatment (PRT)
  • Speech and language therapy (SLP) and augmentative and alternative communication tools such as PECS and Proloquo2go
  • Occupational Therapy (OT) for sensory integration and motor skills development
  • Social and play related activities and interventions
  • Functional and life-skills building programs
  • Counselling and other psychological therapies 

The needs of children and adults with autism will also change as individuals develop and learn though various educational programs, respond to treatment methods and as their developmental needs naturally change over the lifespan.

The success of any treatment will also depend greatly on the involvement and training of parents and caregivers.  Parents know their children best and they are key partners with educators and therapists in identifying changing behaviour issues, skills, interests and challenges.  Good programs usually have a parent training component so that parents and families can continue therapy and interventions at home.

Dietary and Supplement Interventions

Interest in alternative therapies, including diet and supplements are growing as parents explore ways to help their children.  Although interest is very high, there is limited research and a lack of evidence that these approaches help individuals with a particular diagnosis.

With food allergies and digestive issues growing among the general population, it is reasonable to think that diet changes may be helpful to some individuals on the spectrum; however it is not directly related to their autism diagnosis.

When embarking on any diet changes or use of supplements, it’s important to consult with your General Practitioner (GP) or registered dietitian.

For information or to find a registered dietitian visit the website of the Ontario College of Dietitians: www.cdo.on.ca/en.

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.3. Other Things to Consider

Spirale Factsheet #3: www.autismontario.com/spirale

Talk to Other Parents

Find out what their experiences are with different approaches and providers. It’s also important to consider what you’re hearing from whom. We all have different ideas, needs and ways of communicating, so what doesn’t work for someone may work wonderfully for you. All feedback has some value - take the time to distil the information.

Ask Questions

It’s important that you, the parent, have an understanding of the program and what it entails. Don’t be afraid to ask a lot of questions. This will ensure you have a good understanding of what’s expected of you and how it will impact your family. For example:

 

  • Can the treatment be integrated into family life?
  • Is there support provided to help the family build the plan into daily routine?
  • Is there an additional fee for this service?

 

You will find a thorough listing of questions here under the ‘Checklists’ tab.

Testimonials

While exploring approaches there are many avenues in which you’ll get information – websites, booths at a conference, professionals, word of mouth and from other parents. With all of this information comes testimonials, and as seductive as they may seem, testimonials are the least reliable evidence that an intervention is effective.

In order to determine whether a service or treatment is a valuable tool for your child and family, ask yourself:

 

  • What is the bias of the organization?
  • How do they compare themselves to similar approaches/treatments?
  • What objective evidence do they have about their service/product that is not from their own research?
  • Who supervises the program and what are their credentials?
  • How and when would you have access to their consultation?
  • If you are unhappy with the service/product, what is their policy for refunds?

 

The Importance of Your Time

If you are trying a new approach or one with limited evidence for effectiveness for children with ASD, consider what you may passing over. The majority of your resources are best spent on evidence-based practices for individuals with ASD, even while you continue to learn about promising interventions.

Remember

 

  • Children with autism are all individuals; therefore what works well for one child may not be as effective for another child.
  • Parents know their children best. If you feel an approach is not working for your child, or makes you or your child uncomfortable in some way, take the time to ask more questions.
  • The needs of children and adults with autism will change as they develop and learn.

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.4. Checklist: Finding & Working with a Regulated Professional
Spirale Factsheet #4: www.autismontario.com/spirale
 
Finding and reading information takes time. Therefore, finding time to do so is in itself a challenge. You are on this site in the hope that it will help guide you on your search for appropriate providers for your child.  While you need to consider all the tips, it is not a “must-do-everything-on-the-checklist”. Take those that you find practical and suit your needs.

1. TOP TIPS to Finding a Regulated Health Professional

START WITH A BINDER

Purchase a good-quality 3” binder and three-hole punch. As time goes on, your binder will begin to expand into file cabinets, but for now a binder is transportable and will have sufficient room to get you started.

Keeping Records

On the first page, print out contact information:

 

  • Address and phone #
  • Contact name

 

In further sections, add:

 

  • Date, time and notes about conversations
  • Date, time and notes about appointments
  • Copies of any correspondence

 

This system should be customized to include whatever is helpful to you. Other things that can be included are: calendar of appointments, price quotes from other providers, questions you want to ask at your next appointment, and so on.

Keep a close eye on all appointments with your child and write them down on a blank calendar. If they do not match up to the invoice, be sure to initiate a discussion with your service provider; ensure that discrepancies are handled as soon as you are aware of them.

Compile a List of Local Providers

 

  • To see a complete list of currently listed regulated professionals on Spirale, search either by provider type or region (see left menu).
  • At this time, you may not find many or any listings of your interest as this site is very new and will take time to build provider listings. If so, ask other parents (including Autism Ontario Chapter support meetings) to recommend a provider.
  • You should also ask your Case Manager, Early Intervention Worker, family doctor or local Autism Ontario Chapter if they have lists of private providers.

 

Make some initial inquiries

Note: Some Regulated Health Professionals have very busy schedules and may not be able to provide you with a lot of information by telephone or email.  You may be required to make an appointment to speak with them.  This appointment could involve a fee.

 

  • Use the Inquiry with Regulated Health Professionals Checklist as a guide when contacting potential providers. You may wish to do this by telephone or by email.
  • Keep a record of everyone you speak to (including dates and what you spoke about). This will be an important tool during the process. Do not be intimidated by the person you are speaking with. Have them spell their name and give you their title. If they are speaking too fast, do not be afraid to ask them to slow down.
  • Be diligent about asking questions and include any other questions you might have.
  • If you have contacted multiple providers, go through your list and sort out the ones that are inappropriate for whatever reason and then look at your ‘maybe’ list.
  • Once you have met possible providers, go through your lists. You may enlist the help of someone else to provide a different point of view.

 

Look for a Regulated Health Professional whose philosophy is similar to yours

 

  • Ensuring that answers compliment your philosophy and match your concerns will help you find a suitable provider.
  • They should not be intimidating or condescending and they should patiently answer all your questions and consult you when determining the goals for your child.

 

Monitor the Service

 

  • Once the service has begun, be sure to track all activities, meetings and discussions.
  • Use the tips in the Evaluating and Monitoring section on page 3.

 

Organization – Keeping Track of Correspondence

 

  • It is essential you are organized from the start. Take notes when speaking with your service provider on the phone or in person, so you don’t have to rely on memory. Before ending the conversation read back your notes to the person you are speaking with. You may also want to bring along another family member or friend to the meeting to take notes for you.
  • After you have ended the meeting, summarize your conversation and the important parts, such as fees, contracts, waitlist, etc. This can also help you make decisions about who may be the best provider for your family and your child.

 

2. CHECKLIST: Inquiry with Regulated Health Professional

Consider the following questions when making an inquiry or setting up an initial meeting with a Regulated Health Professional. Regulated Health Professionals entail a large and diverse group of professionals including medical doctors, psychiatrists, Speech and Language Pathologists, Occupational Therapists, psychologists and a number of other professionals. Therefore, some of these questions will not be applicable to the Regulated Health Professional you are working with.

Here are some questions you may want to ask. Review the questions and make notes of the ones that are most applicable and important to you.

Getting to Know the Provider

 

  • How will you assess my child’s needs and strengths?
  • I have an assessment from ______________, can you use it or will you need to provide your own assessment?
    • If the existing assessment can’t be used, why?
    • Who would conduct the new assessment?
    • How much will it cost?
    • What diagnostic tools (tests) do you use to conduct assessments?
    • If a new assessment is done, ask for a copy
  • Please describe the training and experience you’ve had working with children with Autism Spectrum Disorders
  • Do you work exclusively with individuals with ASD?
  • Are you comfortable and equipped to work with children and youth with co-existing conditions such as mental health issues and seizure disorder?

 

Understanding the Service They Provide

 

  • Do you work with a team of professionals? If you need consultation, who do you consult for support and feedback?
  • Do you have a waitlist for services? If so, how long? Do you provide any interim services for waitlisted families?
  • Can you provide service in my home or in the community? If so, are their additional fees?
  • Are you agreeable to consulting or providing feedback to other professionals in my child’s life?
  • Will you attend meetings at my child’s school or at other case conferences? If so, what would be the fee?
  • Do you help teach life skills such as toileting, eating problems, dressing, bathing, etc.?
  • Do you provide support or consultation to community programs or social skill programs?
  • How do you involve the child or teen with ASD in  planning or goal setting?
  • What intervention strategies or theories do you work from? Are they evidence-based?

 

Communication and Parent Education

 

  • Am I, as the parent, invited to take part in meetings and appointments or view sessions?
  • Will I receive feedback as to the service you are providing?
  • Are parents involved in planning or goal setting?
  • Do you provide supports to parents in following up with treatments or recommendations?
  • How do you evaluate a child’s progress and how often? How are the parents informed?

 

Financial

 

  • What is the cost per hour for your service including all fees?
  • Is there an income dependent sliding scale for those who are not able to afford the full cost?
  • How often am I invoiced? Do you provide a detailed monthly statement? What methods of payment do you accept?

 

3. MONITORING THE SERVICE

Now that you’ve hired a Regulated Health Professional, how do you monitor the service?

All consumers have the right to hold professionals accountable for providing quality services.

Take a look at these questions and determine the answers that will satisfy you. Be sure to use this tool on a regular basis.

If you feel the service is not the quality that should be expected of a Regulated Health Professional, you should set up a time to speak with your provider. Write down your questions and concerns and ensure that they are addressed by your provider. If you are not satisfied with the responses you have received or the follow up from your concerns you should contact the regulatory body where he or she is registered.

Performance

 

  • What happens if the Regulated Health Professional is sick? How are appointments rescheduled? How long will you have to wait for another appointment?
  • Has the Regulated Health Professional established a good rapport with your child? With you?

 

Attitude

 

  • Does the Regulated Health Professional ensure confidentiality?
  • Are you allowed to observe the service or appointments?
  • Are they forthcoming and open when you ask questions?

 

Parent Education

 

  • Have you been involved in goal setting and recommendations?
  • When it’s appropriate, has the Regulated Health Professional taught you the skills they are working on with your child? Are there things you can reinforce or follow-up on in different environments (home, in the community, when with family or friends)?
  • Are you able to schedule appointments for feedback?

 

Goals

 

  • If progress is not being made, is there an opportunity to discuss this? How will this be addressed?
  • Would you feel comfortable in recommending this Regulated Health Professional to another parent?
  • Do you feel there is a good match between your child’s needs and the service of the Regulated Health Professional?
  • How will it be determined when the service is no longer needed? What happens when a child ages out of a service or needs to move on to an adult provider?
  • Does the Regulated Health Professional recommend or help you link with adult service providers?
  • Are they continuing to meet the answers they provided you in your initial interview questions?
  • Are they open to ongoing communication with you?

 

Financial

 

  • Are they fulfilling their end of the contract to a satisfactory level?
  • Do you agree with the hours they are billing you?

 

 

 
 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.5. Checklist:Finding & Working with an Experienced Autism Worker

Spirale Factsheet #5: www.autismontario.com/spirale

Finding and reading information takes time. Therefore, finding time to do so is in itself a challenge. You are on this site in the hope that it will help guide you on your search for appropriate providers for your child. While you need to consider all the tips, it is not a “must-do-everything-on-the-checklist”. Take those that you find practical and suit your needs.

1. TOP TIPS to Finding an Experienced Autism Worker

START WITH A BINDER

Purchase a good-quality 3” binder and three-hole punch. As time goes on, your binder will begin to expand into file cabinets, but for now a binder is transportable and will have sufficient room to get you started.

Keeping Records

On the first page, print out contact information:

 

  • Address and phone #
  • Contact name

 

In further sections, add:

 

  • Date, time and notes about conversation
  • Date, time and notes about appointments
  • Copies of correspondence

 

This system should be customized to include whatever is helpful to you. Other things that can be included are: calendar of appointments, price quotes from other providers, questions you want to ask at your next appointment, and so on.

Keep a close eye on all the appointments with your child and write them down on a blank calendar. If they do not match up to the invoice, be sure to initiate a discussion with your provider; ensure that discrepancies are handled as soon as you are aware of them.

Compile a List of Local Providers

 

  • To see a complete list of experienced autism workers listed on Spirale, search either by provider type or region (see left menu).
  • At this time, you may not find many or any listings of your interest as this site is very new and will take time build with provider listings. If so, ask other parents (including Autism Ontario Chapter support meetings) to recommend a provider.
  • You should also ask your Case Manager, Early Intervention Worker or local Autism Ontario Chapter if they have lists of private providers.

 

Make some Phone Calls

 

  • Make as many photocopies of the Phone Interview Question Checklist as you have names of potential providers and then start phoning.
  • Keep a record of everyone you speak to (including dates and what you spoke about). This will become an important tool. If you feel you need to write a reflective letter, there is an example below.
  • Do not be intimidated by the person you are speaking with. Have them spell their name and give you their title. If they are speaking too fast, do not be afraid to ask them to slow down.
  • Be diligent about asking questions and include any other questions you might have. When you have finished, thank them politely and move on to the next.

 

Find Your Top Three

 

  • Go through your list and sort out the ones that are inappropriate for whatever reason, and then look at your ‘maybe’ list.
  • Pick the top three and then book an appointment with each. When you keep these appointments, ensure you have copies of the In-Person Interview Question Checklist.
  • Once you have completed the three meetings, go through your lists. You may enlist the help of someone else to provide a different point of view.
  • Be sure to call references and use the Interviewing References Checklist.

 

Look for an Experienced Autism Worker whose ethics are similar to yours

 

  • Ensuring their answers compliment your ethics and match your concerns will help you find a suitable provider.
  • The provider should have no problem giving you references.
  • Check with other local families about typical fees and hourly rates for various providers.
  • They should not be intimidating or condescending and they should patiently answer all your questions and consult you when determining goals for your child.

 

Monitor the Service

 

  • Once the service has begun, be sure to track all activities, meetings, and discussions.
  • Use the tips in the Evaluating and Monitoring Checklist.

 

Consider Composing a ‘Reflective Letter’

 

  • It is essential that you be organized right from the start. One of the most important components of organization is the “reflective letter”. This is a letter summarizing your understanding of a particular conversation or meeting. While speaking with your service provider on the phone (or in person), make notes.
  • You may want to follow up your top three interviews with a reflective letter. Using this tool can help eliminate potential misunderstandings, particularly with respect to fees and contract issues.
  • Try to remember everything you can, but don’t rely just on your memory. Do not be afraid to ask them to repeat themselves. Before ending the conversation, read back your notes to the person you were speaking with. If you are meeting with them in person, bring a friend along to take notes so that you can concentrate on the topic at hand.
  • After you have hung up (or left the meeting), write up a short letter containing the information you have written down. Use a pleasant and factual tone. You can open with something like: “It was a pleasure to speak with you today (date). In order to clarify our conversation in my mind, I would like to reiterate. If I have omitted anything or misunderstood, please advise me within ten working days. If I do not hear back from you, I will assume my summary is accurate.”
  • Mail the original letter. Make sure to keep a copy in your file in the appropriate section for that agency. If you receive a response, add that as well. If you save the first letter on your computer, it may be used as a template for future letters. This will save you a great deal of time as you will only have to change specific information such as names, dates, etc.
  • The reflective letter is the next best thing to “getting it in writing”. This may come in handy down the road and will go a long way toward avoiding misunderstanding with your service provider.

 

2. CHECKLIST: Phone Interview with Autism Worker

Consider the following questions when first contacting a potential autism worker by phone. (Experienced Autism Workers cover a broad range of services and supports, therefore some of the questions are not applicable.)

 

  • I have a recent assessment from________________, can you use it?
  • What is the cost per hour for your service, including all fees?
  • How often are your appointments?
  • Who do you consult with if you need feedback or support?
  • Please describe your training and experience
  • Am I, as a parent, invited to take part in meetings and view sessions?
  • Will I receive regular feedback?

 

3. CHECKLIST: In-Person Interview Questions

Consider the following questions when interviewing a potential Autism Worker.

Getting to Know the Provider

 

  • What training do you have? (Be specific i.e. which courses, how long were they, who conducted them, were they local or out of town?)
  • What age range of children or adults are you willing to work with?
  • Do you work exclusively with individuals with ASDs?
  • How will you build rapport with my child?
  • What is your experience with co-existing conditions such as mental health issues or seizure disorder? What would you need to know or learn to continue working with my child if these other health matters present themselves?
  • Are you trained in what to do in a medical emergency?

 

Understanding the Service They Provide

 

  • Do you require an assessment before providing service?
  • Do you have a waitlist for services? If so, how long? Do you provide interim support for wait-listed families?
  • Are you agreeable to working as a team with an occupational therapist, a speech and language pathologist and other professionals?
  • Do you work with the family on the Individual Education Plan (IEP), the Identification, Placement and Review Committee (IPRC), behavioural plans, etc.?
  • How many hours of service per month do you recommend to start?
  • Who is responsible for training materials, paper, storage, therapy items, etc.?
  • If you are providing the service in the home, do you require an adult to be present while you are working with a child?
  • If you provide a home program, do you set it up? If I have recommendations by a professional already in place, can you implement those recommendations?
  • What techniques or approaches would you use in order to understand and respond to the way my child communicates?
  • Do you help with life skills such as toileting, eating problems, dressing, bathing, etc.?
  • Do you provide integration into a community program?
  • What techniques do you use to manage challenging behaviours such as self-injury, aggression, etc.?
  • Is your service provided in the home, community, in your office or a combination? Are there extra fees associated with home based or community based service? (Travel time, gas, etc.)

 

Communication and Parent Education

 

  • Are parents involved with the planning?
  • Do you train or support parents? Do you teach parents how to implement recommendations and how to generalize skills learned?
  • Are parents welcome to observe sessions? Can they record the session? If not, why?
  • How long does it take for you to return phone calls?
  • What happens if you are sick? How long will it take for an appointment to be rescheduled?
  • What is your policy in the event my child gets sick? How much cancellation notice do you require? Are we required to pay for that appointment?
  • How do you evaluate a child’s progress and how often? How are the parents informed? Can you provide written updates?
  • What are the markers to indicate my child has been successful? How will we know when it is time to end service?

 

Financial

 

  • What is the cost per hour for your service including all fees?
  • Is there an income dependent sliding scale for those not able to afford full cost?
  • How often am I invoiced? Do you provide a detailed monthly statement? What method of payments do you accept?

 

4. CHECKLIST: INTERVIEWING REFERENCES

Consider the following questions when interviewing your potential experienced autism worker’s references…

 

  • Do you have a written contract with your service provider? If so, was it easy to understand?
  • Did the final amount you were charged coincide with costs quoted to you when you first signed with the provider?
  • Do you find the provider (therapists, mediators or front-line staff, etc.) polite and respectful of you and of your child?
  • Is the provider imaginative when teaching new skills?
  • Does the provider include community skills, self-help skills, social skills, anxiety self-modulation, and communication skills in their regular programming?
  • What is their philosophy on teaching skills?
  • If they work in your home; do they leave the programming area the way they found it? Do they show up on time? Leave early?
  • If the service is office based, are they ready to start your child’s appointments on time?
  • Explain to me what happens when your child is called in sick. Do they charge you for a session?
  • Are you allowed to view the sessions?
  • Does the provider listen to your opinions, answer your questions and return your phone calls promptly?

 

5. CHECKLIST: EVALUATING AND MONITORING THE SERVICE

Now that you’ve hired an autism worker, how do you know they are doing a good job?

Individuals with autism spectrum disorders and their families have the right to know whether persons and their employees who claim to be qualified to provider services actually can perform the necessary competencies.

All consumers also have the right to hold those individuals accountable for providing quality services.

Take a look at these questions and determine the answers that will satisfy you. Be sure to use this tool on a regular basis.

Performance: Are they doing the work?

 

  • What happens if the worker calls in sick? How long do you have to wait for another appointment?
  • Has the worker established a good rapport with your child? With you?
  • Is the worker consistently on time?
  • Does the worker take part in meetings with case managers, providers, schools, etc.?

 

Attitude

 

  • Is the worker respectful of your privacy?
  • If the appointments occur in the home does the worker leave the programming space the way they found it?
  • Are you allowed to observe appointments?
  • Is the worker forthcoming and open when you ask questions? For example, would s/he take the time to explain the service, implementation of recommendations and how progress is evaluated?

 

Parent Education

 

  • Has the provider taught you how to generalize the skills they teach your child?
  • Are you allowed to sit in on appointments and make suggestions?

 

Goals

 

  • Are they fulfilling their contracted hours?
  • Are program goals met in a timely fashion?
  • If progress is not being made with a program, are changes made to teach the skill in another way?
  • Would you feel comfortable in recommending this service to another parent?
  • Do you feel there is a good match between your child’s needs and the competencies of this provider?
  • Is the provider also helping with: integration into the community, self-help skills, social skills, self-calming and other skills that have to be taught in a natural environment?
  • Have they provided a plan for when your agreement ends?
  • Does your child seem to be having fun while in appointments?
  • Is the worker’s service meeting the expectations laid out in the initial interview?

 

Financial

 

  • What is the process if your child is sick – do they charge you for the shift if not enough advanced warning is given?
  • Are they fulfilling their end of the contract to a satisfactory level?
  • Do you agree with the hours they are billing you?

 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.6. Attending the 2013 Applied Behavior Association International (ABAI) Autism Conference: Building towards Independence

By: Michelle Murdoch Gibson

The Association for Behavior Analysis International held its seventh annual Autism Conference in Portland, Oregon earlier this year. A three track conference, the organizers promised novel autism solutions for practitioners, parents and researchers. With a programme broad in scope and delivered by a range of reputable presenters, as well as an excellent selection of poster presenters, the conference lived up to this promise. While perhaps not an intended theme, one of skill building towards independence did emerge. Several presenters referenced sobering statistics coming out of early autism intervention programs. Children with Autism Spectrum Disorder (ASD), despite our best intentions and services, are largely still not going on to post secondary education, still not engaged in full time employment and still not living independently once they reach adulthood. While best practises may be firmly established, the availability of competent behavioural service providers to assist in community settings is still limited and waitlists prevail. So it was bearing this in mind that presenters called on service providers and families to work together to engage children and youth with ASD in meaningful and practical programming with a long range, visionary approach.

Dr. Marjorie Charlop opened the conference and advised service providers to take equal footing with families and forge partnerships. Dr. Charlop suggested that professionals respect parents as the experts on their own children but to let them know that those in the field of behaviour analysis have the techniques that might help them in their role. In terms of sharing that ABA wisdom, Dr. Travis Thompson suggested that providers look not to teach specific ABA strategies for specific needs or concerns but rather to encourage families to adopt an “ABA lifestyle”. Thompson encouraged attendees to look at including the principles of behaviour analysis in all aspects of family life and to identify teaching opportunities throughout their day, embedding opportunities if they don’t exist. Dr. Meme Heinemann and Dr. Thompson echoed Charlop’s message of ensuring that providers offer services that fit a family’s own ecology, acknowledging cultural factors, other demands that families may face, as well as their individual capabilities and cognitions. By ensuring that service providers provide support that “fits” with families in this way, presenters asserted that families will be more engaged, more motivated and ultimately more successful in their endeavours. Families should feel encouraged in knowing that the research indicates that while clinical treatment may produce faster results for those with ASD, parent mediated models of ABA services yield results that are more robust, more likely to be generalized, and maintained over time.

Conference speakers Dr. Peter Gerhardt and Dr. Bridget Taylor both encouraged professionals to work with parents at identifying and prioritizing those goals that promote independence as independence ultimately leads to increased opportunities in terms of vocational, social, and residential options as well as greater community integration. Dr. Gerhardt’s work focuses on adolescents and young adults with ASD and he champions the following goals for his clients. Ideally he works towards:

1) Employment – no less than 20 hours per week.

2) Development of not just social skills, but a social network in one’s home community, and;

3) The ability to not only follow directions, but to initiate accomplishing the task at hand. Additionally, Gerhardt argues that happiness can be defined, reliably observed and systematically increased using the tools of applied behaviour analysis and consideration of this is critical to increasing the quality of life for our young adults on the autism spectrum.

Dr. Taylor warned that teaching interventions that incorporate high levels of adult initiated responses may result in a generation of adults who are dependent on other adults. If you don’t know where to start in prioritizing and targeting skills, Taylor suggests that parents or teachers spend one full day logging every occurrence of adult support provided to their child in that day. Do you fasten their belt? Pack their school bag? Prompt toilet use? Cut their meat? Apply toothpaste to a brush? This becomes your curriculum. Work towards building these skills and ultimately increase independence. Increase motivation with incidental teaching, says Dr. Taylor. If a child wants to go outside, teach them to tie their shoes. If a child wants to eat, teach them to prepare a snack. Dr Taylor closed with a final inspirational thought from German thinker Goethe “If you treat an individual as he is, he will remain how he is. But if you treat him as if he were what he ought to be and could be, you will help him to become what he ought to be and could be”.

Other areas examined at this year’s conference included emerging themes such as autism and the criminal justice system, and teaching perspective taking, as well as those topics more commonly seen at autism conferences – play and social skills, and feeding and sleeping solutions. The conference closed with an invited panel of parents and professionals who spoke on the topic of “what keeps you awake at night?” and here the practical importance of many of the topics presented over the weekend was further emphasized. What will the future hold in terms of education, employment, housing, adult services, government supports, dignity and quality of life? While the answers seem unsure, one thing remains certain – the autism community, both families and professionals present at this conference seem prepared to stand shoulder to shoulder in realizing our children’s potential.

 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.7. Using Pivotal Response Treatment at Home: 1 Introduction

By: Teal Shirk-Luckett, School Support Consultant-Autism Spectrum Disorder, Hands TheFamilyHelpNetwork.ca

 
“If people enjoy what they are doing, they are likely to do more of it.” (Koegel, R. L. & Koegel, L.K., 2012, p28)

Pivotal Response Treatment (PRT) is an evidenced-based behavioural approach, founded in the techniques of Applied Behavioural Analysis (ABA) that can be used as an intervention for children with Autism Spectrum Disorder (Koegel, L.K., & Koegel, R.L., n.d.).  PRT identifies key behaviours that are developmentally critical for children with ASD and that can result in widespread improvements in areas that were not specifically targeted (Koegel, R.L., Openden, D., Fredeen, R., & Koegel, L.K., 2006).  Within these pivotal behaviours, PRT uses the strategies of ABA to break down, prompt and reinforce specific skills or behaviours in a meaningful way for the child.  Unlike other ABA based methodologies, PRT does not use a table based drill type format.  Rather, the main focus of PRT is to use a child’s natural motivation in a natural context to increase his or her desire to learn.  The four main pivotal areas discussed in this series of articles (motivation, self-initiation, responding to multiple cues and self-management) focus on engaging the child in the process of learning.

Parents, educators and other family members can use PRT in their daily activities (in the child’s natural setting), helping to maintain teaching consistencies across instructors and environments while ensuring an optimized skill acquisition process for learners.  The PRT principles invite families into the therapeutic process, having them become an integral part of the ongoing treatment of their child.  As a collective approach, the responsibility for daily instruction does not have to fall solely on the shoulders of parents; a child’s siblings, or their peers can also learn the concepts of PRT and use them successfully to improve social behaviour for children with ASD (Pierce, K., & Schreibman, L., 1997). 

By increasing the child’s responsiveness to natural learning opportunities and by teaching the intervention procedures to the important people in a child’s life, PRT allows the child to maintain involvement in his or her natural setting with typically developing peers and “decreases the need for constant vigilance by the intervention provider” (Koegel, L.K., Koegel, R.L., Harrower, & Carter, 1999, p174).

Background

The first evidence-based approaches to teaching children with ASD took place in artificial environments and saw very slow, but significant improvements for these children (Koegel, R.L. & Koegel, L.K., 2012, p15).  These programs typically focus first on teaching attention and imitation, and deliver small unrelated reinforcement when the child completes the expected task.  Koegel and Egel started looking at motivating children with ASD in 1979 (as cited in Koegel, R.L. & Koegel, L.K., 2012).  From this start, PRT evolved as known pivotal areas expanded from motivation to engage in social communication to include other skills that may not need to be taught individually.  PRT is now a long-standing, evidence-based strategy noted by both the National Standards Project (National Autism Center, 2009) and The National Professional Development Center on Autism Spectrum Disorders (2008). There are hundreds of studies showing the success of PRT procedures (Koegel, R.L. & Koegel, L.K., 2012, p2) and the individual components of these procedures.  For more information about research supporting PRT, parent and sibling involvement and the effects of PRT on social, behavioural or communication skills, please refer to the PRT Pocket Guide listed in the reference section. 

This series of articles will introduce the basic concepts of PRT, some of the evidence supporting PRT and some ideas and examples for using PRT at home.

Reference List for Pivotal Response Treatment

  1. Bryson, S.E., Koegel, L.K., Koegel, R.L., Openden, D., Smith, I.M., & Nefdt, N. (2007). Research & Practice for Persons with Severe Disabilities, 32, 142-153
  2. Koegel, L.K., Koegel, R.L., Harrower, J.K. & Carter, C.M. (1999). Pivotal response intervention I: Overview of approach. The Journal of The Association of Persons with Severe Handicaps, 24, 174-185.
  3. Koegel, L.K., & Koegel, R.L. (n.d.), Pivotal Response Treatment for Autism. Retrieved from http://www.koegelautism.com/about-pivotal-response-training.html
  4. Koegel, R.L. (2007). Commentary: Social development in individual with high functioning autism and Asperger disorder. Research and Practice for Persons with Severe Disabilities, 32, 140-141
  5. Koegel, R.L., & Koegel, L. K. (2012).  The PRT pocket guide: Pivotal response treatment for Autism Spectrum Disorders. Baltimore, Maryland, USA: Paul H Brookes Publishing.
  6. Koegel, R.L., Openden, D., Fredeen, R., & Koegel, L.K. (2006). The basics of pivotal response treatment.  In R.L. Koegel & L.K. Koegel (Eds.), Pivotal response treatments for autism: Communication social and academic development. Baltimore, Maryland, USA: Paul H Brookes Publishing.
  7. Koegel, R.L., Vernon, T.W. & Koegel, L.K. (2009).  Improving social initiations in young children with autism using reinforcers with embedded social interactions.  Journal of Autism and Developmental Disorders, 39, 1240-1251.
  8. Koegel, R.L. & Williams, J. A. (1980). Direct versus indirect response-reinforcer relationships in teaching autistic children. Journal of Abnormal Child Psychology, 8, 537-547.
  9. Nefdt, N., Koegel, R., Singer, G., & Gerber, M. (2010). The use of a self-directed learning program to provide introductory training in pivotal response treatment to parents of children with autism.  Journal of Positive Behavior Interventions, 12, 23-32.
  10. National Autism Center  (2009). National Standards Report – Addressing the Need for Evidence-Based Practice Guidelines for Autism Spectrum Disorders.  Massachusetts, USA: National Autism Center
  11. Openden, D. (2009, July). Pivotal response treatment for young children with autism spectrum disorders. Presented at the Ontario School Support Program – Autism Spectrum Disorder annual conference: Toronto, Ontario.
  12. Pierce, K., & Schreibman, L. (1997). Multiple peer use of pivotal response training to increase social behaviors of classmates with autism: Results from trained and untrained peers.  Journal of Applied Behavior Analysis, 30, 157-160
  13. The National Professional Development Center on Autism Spectrum Disorders (2008). Evidence Based Practice Briefs. Retrieved from http://autismpdc.fpg.unc.edu/content/evidence-based-practices.

 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.8. Using Pivotal Response Treatment at Home:2 Motivation

By: Teal Shirk-Luckett, School Support Consultant-Autism Spectrum Disorder, Hands TheFamilyHelpNetwork.ca

Motivation to learn was the initial area targeted by researchers as they began to think about pivotal areas of development for children with ASD (Koegel, R.L. & Koegel, L.K., 2012).  Using the strategies described below, care providers are able to teach children with ASD how performing and learning new skills will help them gain access to desired materials and activities in their environment. 

Within the pivotal area of motivation there are several elements to consider: child-choice, reinforcing attempts, natural reinforcement, interspersing tasks, and varying tasks.

Child choice/child lead OR shared control

In PRT the child chooses the materials, location, topics and/or toys.  The caregiver follows the child’s lead within the activity while focusing on a skill they wish to teach.  Many studies have demonstrated increased skill development, productivity, increased interest and enthusiasm when the child’s choice was used while teaching (Koegel, L.K., Koegel, R.L., Harrower, & Carter, 1999, p179).

Within any activity, some level of choice can be given to your child.  Once your child has made their choice, you can focus on the skill you want to teach within that choice. Children can choose:

  • What clothes they wear (talking, communication, independent dressing),
  • Which item to put on first (communication, independent dressing),
  • To walk or skip to the car (successful transitions),
  • To do homework on the coffee table or their desk (homework completion),
  • Which writing/drawing implement to use (labeling objects/colours/prepositions, drawing or writing tasks),
  • What recipe to make for dinner (self-help, cooking, family chores)
  • To use a fork or spoon (self-feeding),
  • Which toy/book to play/look at (learning new words, attending to person or object, reading, learning the alphabet, turn taking etc.)
  • And so on.

Interspersed tasks

Children with ASD show the skill they are learning more and appear happier when new skills are mixed with things they do well (Dunlop, 1984; Dunlop & Koegel, 1980, Koegel & Koegel, 1986, Koegel & Johnson, 1989 as cited in Koegel, L.K. et al.,  1999, p179).  Therefore, PRT uses a lot of acquired skills mixed with the new skills.  This can also lead to less “escape behaviour” (Koegel, L.K., et al., 1999, p 179).  For example if your child is working on colours, after they ask for a specific coloured crayon, you should ask them to do other tasks that are known or easy.

If you were teaching your child to cook, you might first teach them to find their favourite recipe.  Then you might ask them to do things that are easy.  Instead of asking them to get out all the ingredients, you might ask them each one separately.  “Get the macaroni from the top shelf”.  Next you could ask another skill you want to teach.  “Please grate this block of cheese”; reinforcing the cheese grating with a bite of freshly grated cheese.  You would continue in this way mixing tasks they can easily do with something you want them to learn.


Task variation while teaching

Children with ASD are thought to have difficulty using the skills they learn in different places, or with different materials or people.  Some learners are able to perform a skill only if it is presented exactly as it was taught.  PRT deals with this challenge by using different materials, people and places while teaching skills.  Varying the activities, skills being taught and reinforcers also keep the child (and adult) interested (Koegel, R. L. & Koegel, L.K., 2012, p48 &58-59).  It has been shown that when activities are varied, the child is happier and learns faster (Dunlop and Koegel, R.L., 1980; as cited in Koegel, R. L. & Koegel, L.K., 2012, p58).  In the colouring example, colours may also be taught when choosing what to wear, sorting dirty clothing, choosing foods, cars or other toys to play with, bath toys and so on.  While drawing you may also teach specific drawing skills, labeling pictures or objects, saying`` yes`` or ``no`` and so on.


Reinforce attempts

Reinforcing the child when they truly try to do the right thing increases their desire to try the next time.  The child gets what they want only when they correctly attempt the skill you are teaching.  R.L. Koegel, O’Dell & Dunlap showed that nonverbal children with ASD talked more often more quickly when their attempts to talk were rewarded (1988, as cited in Koegel, R. L. & Koegel, L.K., 2012, p56).

Any true attempt at doing the right thing is reinforced.  If the child is trying, but is not correct or has done better before, they still are reinforced.  While colouring, if your child reached for the red crayon, looked at you and said “rrr” they would get the crayon even if they had once said “red crayon”.  If your child said “red crayon” with his hands in his lap while looking at the floor he would not get the crayon.  He had not truly tried to communicate with you.


Naturalistic/direct reinforcement
Natural reinforcers are directly related to the activity.  When your child tries to do the skill you are teaching, you give them something they want that is part of the activity.  Skills that are reinforced in this way are learned faster by children with ASD than skills that are reinforced with something the child wants, but is not related to the skill.  For example, when working on colours your child could ask for a red crayon and then get the red crayon (getting the crayon reinforces asking for it).  Your child gets to eat their favourite meal for dinner after they tried some of the cooking tasks.  They also may get small bites as they try to grate the cheese or drain the pasta water.

Using these strategies, you can motivate your child to engage in the learning process with you while continuing in their daily activities and routines.  Including these motivational principles into an intervention approach “significantly improves language, academic and social functioning, while simultaneously decreasing disruptive behaviour” (Koegel, R.L., Koegel, L.K & McNerney, E.K., 2001, p22).  Once a child is motivated to learn, and caregivers are comfortable implementing these strategies, the child can then be taught to self-initiate learning opportunities.

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.9. Using Pivotal Response Treatment at Home:3 Self Initiation
By: Teal Shirk-Luckett, School Support Consultant-Autism Spectrum Disorder, Hands TheFamilyHelpNetwork.ca

Typically developing children learn a lot through asking questions of and otherwise eliciting a response from an adult or other children.  From a young age, children learn new words and concepts by asking “what’s that?” or “why?”  Many children with Autism Spectrum Disorder (ASD) do not initiate these social opportunities for learning (Koegel, L.K., Koegel, R.L., Shoshan, Y. & McNerney, E., 1999).  Incorporating motivational strategies with these self-initiation skills teaches the child with ASD to initiate learning interactions.  Robert and Lynn Koegel suggest “make it easy, make it simple and don’t turn it into a demanding situation” (Koegel, R.L. & Koegel, L.K., 2012, p98).

Asking questions to build vocabulary and gain knowledge

One technique involves placing a favourite item into a bag that hides the item from view.  The child is then encouraged to ask “what’s that?” (the adult says “say, what’s that”).  The parent then opens the bag, labels the item and the child is able to take the item from the bag.  This can also be used to build sentence length or the use of describing words.  For example, if the child is using one word to label an item, when the adult opens the bag they might use two words to label the item, such as “red car”.  The parent might model a full sentence, “It’s a red car”.

As the child asks “what’s that” easily and more often, the parent uses items that are more neutral to teach new words.  Similar techniques can be used to teach the child to ask “what happened”, “where is it” and “whose is it”. 

Asking to gain a desired object or assistance

Another aspect of self-initiation is getting something from someone else.  A child may learn to ask for help or to ask for materials or actions from other people.  Again, motivation is used so that the child wants the help, object or action.  You can set up your house so that items the child desires are in sight but in places your child cannot get them on their own.  Items can be in hard to open containers, on high shelves (if your child will not likely climb to get them), behind a locked door with a window, or in another person’s hands.  Prompt your child to ask for the item or for help to get the item when they show some interest in that item.  Items or help that might normally be given freely to your child are not given until your child attempts to ask.

If your child enjoys drawing, you can place the crayons in a clear box with a difficult to open lid.  When you notice your child attempting to open the box you can help them say, “Help me please”. 

You can change the password on the computer so that your child must come ask you, “What is the password?”  They show interest in the computer when that is what they want to do and will be naturally reinforced for asking by gaining access to the computer.

Gaining attention

The child with ASD is prompted to say “Look at me” in order to gain the adult’s attention to the task in which he or she is engaging.  The adult would then reinforce the child’s request by immediately attending to them, commenting on what they are doing and giving further access to some aspect of the task.

While playing the child’s favourite game, soccer, the child is prompted to say “look”; the adult then looks at the child and passes him the soccer ball.

While drawing a picture, the adult controls all the markers except the one the child is using; the child is prompted to say “look”; the adult looks, says “I see you’re drawing, here are some more colours to choose from” and hands the child other markers.

Asking to gain information about an object or action

Children with ASD may not use the active or past tenses of verbs (Koegel, R.L. & Koegel, L.K. 2012).  These children can be taught to ask, “what’s happening” or “what happened” in response to an adult’s actions.  The adult then provides the appropriate verb tense. 

For younger children, find pop-up or pull-tab books about something in which the child is interested.  As you are pulling a tab prompt the child to ask “what’s happening” (or stop pulling the tab and prompt the child to ask “what happened”).   After the adult gives the answer, the child could pull the tab themselves if they desire.

Favourite items or items necessary for favourite activities could be removed from the usual places.  The child would then be prompted to ask, “where is the _____”, the adult tells the child where the missing item can be found.  If the child knows his or her prepositions, the child may be able to find the missing item themselves; otherwise the adult may show the child where the item is while labeling the location.

When first teaching self-initiation, the adult’s responses can be kept short and the natural reinforcement should come quickly (Koegel, L.K. et al., 1999).  This will keep the child motivated to initiate their own learning.  Remember to continue using the motivation strategies: follow the child’s lead, intersperse and vary tasks and use the natural reinforcer that is associated with the question the child has asked.

Through learning to initiate these social interactions, children with ASD learn the value in these interactions.  These skills have been shown to generalize to novel settings, materials and with untrained adults (Koegel, L.K., Koegel, R.L., Harrower, J.K. & Carter, C.M., 1999). 

 

 


 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.10. Using Pivotal Response Treatment at Home:4 Multiple Cues

By:Teal Shirk-Luckett, School Support Consultant-Autism Spectrum Disorder, Hands TheFamilyHelpNetwork.ca

Many children with ASD have been described as being very detail oriented or as having “stimulus over-selectivity” (Koegel et al., 1999, p177).  They often seem to fixate on a specific detail.   Frequently these details would seem unimportant to other children.  If one of these details changes, the child with ASD may have difficulty with the situation, routine, object or person.  For example, when Sally met a new therapist she called her ‘Smiley’.  Ten minutes later they were in the school library, Sally looked directly at the therapist, who was now not smiling, and said, “Where’s Smiley?”  Sally was identifying (over-selecting) the new therapist only by her smile.  Other examples include the child with autism who could not recognize his teacher after she cut her hair having overly-focused on her hair as the identifying feature or the child who only completed a certain task when he wore his green sweatshirt because he happens to be wearing that specific sweatshirt in the picture on his visual schedule.

In general, children are expected to respond correctly to multiple cues or details. Everyday instructions often include multiple components.  E.g. Please get your warm, red socks (2 components); or when you are done eating, put your plate, and cup on the counter above the dishwasher (5 components).  The child with ASD may respond to only one of these components and may do best when instructions are one step at a time.  This “over-selectivity” can lead to difficulties with social behaviour, learning language, and the learning and generalizing of new behaviours throughout the child’s life (Rosenblatt, Bloon, and Koegel, 1995, as cited in Koegel, K.L., et al., 1999, p177).   

Within-stimulus prompting

This strategy helps a child learn the specific detail that separates an item from other similar items.  This specific detail is exaggerated to increase focus on it. (Shreibman, 1975 as cited in Koegel, L.K., et al., 1999, p177). For example, the detail may be bigger, louder, darker or coloured to make it stand out.  The child is then taught to attend to that detail (cue).  The exaggerated element is then faded back to its’ original form.  

Here are some examples:

When teaching a child the difference between the letter p and the letter q, the stem of the letters would be made thicker and longer to show the child what makes the two letters different.

The person’s name label on his locker is coloured to make it stand out from name labels on other lockers.

Multiple features/attributes

Situations are set up so that the child must look for multiple features of an object.  Situations may start with simple, known features and become more complex as the child becomes more adept at differentiating based on those features.   

For example, Abby is asked to get a small spoon from the drawer which also contains large spoons, as well as small and large forks and knives.  She must attend to both the size (small) and shape (spoon) of the object.  Getting to eat her ice cream with that spoon then reinforces Abby.

The number of features a child is asked to look for is gradually increased, based on success with fewer features.   For example, once Abby can find the blue DVD among DVD and video cases placed in front of her, another feature, such as location, can be added.  When Abby asks to watch her favourite DVD, she is told to get the blue DVD from the shelf (blue, red and green DVD and video cases are on the shelf and more cases are on the table) requiring her to attend to three features: colour, shape and location. She can then watch the DVD. Once Abby is successful with three features, another feature, such as orientation, could be added.  Now, Abby would be told to get the blue DVD lying on the shelf when there are different coloured DVD and video cases standing and lying on the shelf as well as more cases on the table.

The child learns to respond to more cues, if instructions with multiple features are consistently delivered (R. L. Koegel & Schreibman, 1977; Schreibman, 1988; Schreibman et al., 1996; as cited in Koegel, L.K., et al., 1999, p177).  

Multiple step instructions

Learning how to complete multiple step instructions helps a child become more independent and decreases the time required to break down instructions into smaller steps.  As with teaching multiple features or attributes, the child learns to follow a one-step instruction that leads to something they want.   Once the child follows one-step instructions, a second step is added to the instruction.

The following illustrates increasing the number of steps in an instruction:

One-step instruction: “Put on your coat” (allowing you to help them put on their coat and go play outside with you). 

Two-step instruction: “Pick up your coat and hang it up” (allowing the child to then access a preferred activity or other reinforcer).

Three-step instruction: “Turn off the television, go to the bathroom and wash your hands” (allowing the child to have snack). 

Burke and Cerniglia showed that children with ASD were able to learn to follow instructions with up to four steps in a relatively brief period of time (1990, as cited in Koegel, L.K., Koegel, R. L., Harrower, & Carter, 1999, p 177). 

As with teaching self-initiations, described in article 3, continue using the motivation strategies while teaching the child with ASD to respond to multiple cues.  Burke and Cerniglia (1990, as cited in Koegel, L.K. et al., 1999) also demonstrated some generalized responses following the intervention period.  The ability to respond to multiple cues in the environment may also increase the child’s ability to access learning opportunities in their daily lives and decrease the need to break instructions down into single steps.  This may allow the child to be involved more in typical peer groupings with less direct adult support required.

10.11. Using Pivotal Response Treatment at Home:5 Self Management

By: Teal Shirk-Luckett, School Support Consultant-Autism Spectrum Disorder,Hands TheFamilyHelpNetwork.ca

Through the technique of self-management, a person learns how to assess and make changes to their own behaviour.  Self-management is widely considered a pivotal behaviour as people who learn to manage their own behaviour have been shown to continue to do this beyond the teaching situation (Koegel, R. L., Koegel, L.K., Harrower, J.K., & Carter, C.M., 1999, p 180).  Applying motivational strategies to self-management involves including the child with ASD in the decision-making process whenever possible.  The child may be a part of choosing the target behaviour, the reinforcers and the recording system, which they will be taught to use to self-monitor. 

The steps of self-management include:

Choose and operationally define the target behaviour

Define the behaviour in terms that are specific, observable, and measurable.  Ensure that this definition is clear to anyone involved in the teaching of this behaviour or skill. 

If the morning routine is difficult, you may decide your child could learn to manage these skills independently and efficiently.  With other care providers involved (and your child, if appropriate) define this as completing the morning routine (getting dressed, making her bed, eating breakfast and brushing her teeth and hair) within 40 minutes.  

Select reinforcers

A reinforcer is an item (activity, game, food) that the child enjoys. The delivery of the reinforcer is related to the increase or decrease of the target behaviour.  Whenever possible, the child should learn to give him or herself reinforcement following mastery of the self-monitoring system (see below).

For example, the child can gain access to a favorite activity (computer, reading, TV, etc.) if the morning routine is completed within the set amount of time.  Naturally the amount of time she is able to engage in the activity directly relates to how quickly she completed her routine (i.e. if she completes the routine in 25 minutes there is more time left to enjoy the reinforcer before she must leave the house in the morning).

The recording system and device is determined

Find a way to record whether or not the child engaged in the target behaviour.  The system needs to be simple enough for the child to easily learn and use.  There are many options, such as a chart, graph, mark in a calendar or in an agenda at school, tally counters, or electronic options (apps for various phone systems are available).

To record successful completion of the morning routine, a simple visual chart with a bingo dabber, stickers or coloured marker can be used.  The chart can include a spot to note the routine was completed prior to the timer going off.  

The child is taught how to self-monitor

The child must be taught to recognize when they have completed the target behaviour. This can be taught using prompting and reinforcement methods. A separate, related skill to teach your child is to record completion of the target behaviour (i.e. morning routine) on their chart. Reinforcement, such as using a favourite type of marker, applying a scented sticker, or a high five for remembering to use the chart can be used to teach this skill.

For example, while learning to self-monitor for the morning routine, your child may be taught to set a timer and be allowed to choose a special marker to use for checking off each task once completed.  Once all the tasks are completed, she can then be prompted to look at the timer and if there is still time left, place the last check on the chart and move to the reinforcing activity.

External prompts and reinforcement of self-monitoring are faded

As your child begins to succeed in monitoring his or her own behaviour, the prompts she is given should be reduced.  Also the amount of reinforcement given for marking on the chart is also decreased.  These fading procedures allow your child to become independent with this skill.

Adult presence is faded, while ensuring the child continues to self-monitor the target behaviour

As your child becomes more independent in monitoring the target behaviour, it is important to assess if your child continues self-monitoring and if they are self-monitoring in other environments.

Periodically review the morning routine chart and check to see the timer is being used properly.  As your child learns to complete this routine quickly with no reminders from you, the use of the recording system may be faded.  Ensure your child continues to complete each task within the same time frame when they are no longer using the chart and the timer.  You can also assess if they are completing other similar routines in a more efficient manner (e.g. bedtime routine).

In Conclusion

These five articles have highlighted the PRT approach to intervention for four main pivotal areas: motivation, self-initiation, responding to multiple cues and self-management.  The examples included in each section have demonstrated different ways these strategies might be used at home or in the community.  With practice, family members and other caregivers are able to provide this effective and evidence-based intervention approach with their child in their home, while engaging in the regular routines of their household.

 

 

 

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.12. Cognitive Behavioural Therapy May help Children with Autism Spectrum Disorders with Anxiety

What is this research about?

Many children with Autism Spectrum Disorders (ASD) have problems with anxiety. Past research suggests that cognitive behavioural therapy (CBT) may help lessen anxiety in children with ASD. This type of therapy teaches children ways of thinking and behaving that help them cope with, face, and reduce their anxieties (e.g., how to recognize what they are feeling, ways to think about their problems differently). CBT is the most scientifically supported talk therapy treatment for anxiety in children. However, because children with ASD have problems with social skills, communication and behaviour, the effectiveness of traditional CBT can be limited. This research is one of the first studies to assess how effective CBT can be when adapted specifically for children with ASD.

What did the researchers do?

The researchers randomly assigned 40 children with high functioning ASD and anxiety (7–11 years old) to be in a CBT group or a 3-month waitlist. For children receiving CBT, an individual therapist worked with each parent and child for 16 weekly sessions. The therapists taught children coping skills, friendship skills and skills to increase their independence. The therapists taught parents ways to help their children at home. They also consulted with teachers about the ways they could help at school. Parents had to be very involved in the treatment. Parents and children in both groups completed questionnaires and were interviewed before and after the treatment/waitlist.

What did the researchers find?

The researchers found that children receiving CBT showed less anxiety symptoms after the 16 week program when compared to children on the waitlist, according to clinician and parent reports. Children who received CBT continued to show improvement 3 months after the treatment ended. There was no difference in how the children reported their own anxiety; however this may be a result of the questionnaires the researchers used, which may not have been sensitive enough to detect change.

How can you use this research?

This research shows that it is possible for anxiety to be treated in children with ASD using CBT. Parents and teachers play important roles in children’s lives and this study suggests that it may be useful to actively involve them in CBT treatment. Researchers can use these results to conduct future studies about how treatment programs can be adapted to suit the mental health needs of children with ASD and their families.

What you need to know:

Children with ASD often have problems with anxiety. The results from this study suggest that a modified CBT program may help lessen anxiety symptoms in highfunctioning children with ASD.

About the Researchers

Dr. Jeffrey Wood and colleagues are researchers from the University of California, Los Angeles. This summary is based on their study “Cognitive behavioral therapy for anxiety in children with autism spectrum disorders: a randomized, controlled trial”.


Citation

Wood, J. J., Drahota, A., Sze, K., Har, K., Chiu, A., & Langer, D. A. (2009). Cognitive Behavioral Therapy for Anxiety in Children with Autism Spectrum Disorders: A Randomized, Controlled Trial. Journal of Child Psychology and Psychiatry, 50(3), 224-234.

This research summary was written by Ami Tint for the Chair in Autism Spectrum Disorders Treatment and Care Research. This research summary, along with other summaries, can be found at asdmentalhealth.ca/researchsummaries

About the Chair

The Chair in Autism Spectrum Disorders Treatment and Care Research is dedicated to studying ways to improve the mental health and well-being of people with Autism Spectrum Disorders (ASD) and their families in Canada. The Chair is funded by the Canadian Institutes of Health Research in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, NeuroDevNet and the Sinneave Family Foundation. Additional funds from the Spectrum of Hope Autism Foundation and support from York University.

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
10.13. Tantrum vs. Autistic Meltdown: What Is The Difference?

By Maureen Bennie

Many parents and caregivers have witnessed the fireworks of anger and emotion from a person with autism, and from the outside they look exactly like the tantrums of young children. While they may look similar in external behaviour, it’s important to understand the difference between the two. A tantrum is willful behaviour in younger children and therefore can be shaped by rewarding desired behaviours, whereas a meltdown can occur across a lifespan and isn’t impacted by a rewards system. Tantrums slowly go away as a child grows up, but meltdowns may never go away. Tantrums need one kind of response, but that same response will only make things worse for a person have an autistic meltdown from being overwhelmed by sensory stimuli.

How can you tell an autistic meltdown from a tantrum?

1) Goal oriented vs. overload. A tantrum in a young child typically stems from frustration from not getting what they want in that moment: whether it is a toy, being able to button up their own shirts, or not wanting to go to bed. While tantrums in young children can be more frequent when they are tired, hungry or not feeling well, they are always goal oriented. Either the frustration at not getting what they want, not being able to do what they want, or even not being able to communicate what they want properly. An autistic meltdown on the other hand is all about being overwhelmed. For someone with autism, when they reach the point of sensory, emotional, and information overload, or even just too much unpredictability, it can trigger a variety of external behaviours that are similar to a tantrum (such as crying, yelling, or lashing out), or it can trigger a complete shutdown and withdrawal.



2) Tantrums need an audience. Tantrum behaviour will usually stop when the parent ignores the behaviour, when the child is removed from a public space where the behaviour is occurring, or when the child gets whatever it is they want (although this is not necessarily the best way to deal with tantrums). An autistic meltdown will occur with or without an audience. They can occur when the person with autism is entirely alone. They are the response of an external stimulus overload that leads to an emotional explosion (or implosion).

3) To put it simply: tantrums are an angry or frustrated outburst, while autistic meltdowns are a reaction to being overwhelmed. A person with autism has no control over their meltdowns, and will not benefit from the normal measures to reduce tantrums like distraction, hugs, incentives to ‘behave’, or any form of discipline.

What Can I Do To Help A Person Having An Autistic Meltdown?

As Judy Endow says in her wonderful blog post on the topic:

[Since an] autistic meltdown is the body’s attempt to gain equilibrium by expending energy, safety concerns often loom large. In fact, safety becomes the focus of attention during the autistic meltdown. The goal for the support person at the height of a meltdown is to ensure safety, knowing the meltdown will continue until the energy is spent. There is no stopping a meltdown in progress.

1) Ensure safety. Individuals with autism may unintentionally hurt themselves or others during their meltdowns. Have a strategy in place to keep the individual and yourself safe from harm. Personally, I love the unapologetically non-violent Low Arousal Approach, which in my opinion is one of the best strategies available for coping with meltdowns. [Managing Family Meltdown]

2) Develop a calming routine. Having an effective calming routine in place for both children and adults is very helpful. Some people may still need help to calm themselves even after the energy from the meltdown is spent. This may include visuals, or music…whatever works best. A great book that I found for this is When My Worries Get Too Big by Kari Dunn Buron.

3) Mapping the pattern of behaviour in your child or ward to see how escalation occurs can be very helpful. It may be possible to start a calming routine before total meltdown if you are aware of the symptoms of escalation. Symptoms can include more than normal stimming, or rocking, asking to leave an environment, or simply bolting to escape, etc… If you understand what triggers your child, student, or ward you may be able to stop a meltdown before it happens. An excellent resource for this is No More Meltdowns by Jed. E. Baker.

4) Stay calm yourself. This is a big one – meltdowns normally have trackable escalation, so keeping yourself calm so that you don’t add to that escalation is essential. If you have a person with autism in your life, chances are meltdowns are going to happen. Learning to calmly cope with them and having a strategy that works for you is the best way to help. From Anxiety to Meltdown by Deborah Lipsky is a fantastic resource.

Translated with permission:

https://autismawarenesscentre.com/what-is-the-difference-between-a-tantrum-and-an-autistic-meltdown/

10.14. Taming Tantrums vs. Managing Meltdown

By Amanda Morin

Tantrums and meltdowns aren’t the same thing

Each type of outburst requires a different approach.

There are strategies that may prevent or reduce both types of behaviours.

Tantrums and meltdowns are different kinds of emotional outbursts, and there are different ways to deal with them. Here are some strategies for each.

Ways to Tame a Tantrum

Tantrums are usually something kids have some control over. So there are many ways to try to avoid them—or stop them in their tracks.

  1. Agree on a frustration signal. Work with your child to come up with a signal you can use when you see her getting frustrated. Practice the signal when she’s calm. Talk about what she can do when she sees it.
  2. Create a calm space. Find a place in your house that your child can use to calm down and feel safe. Explain this is a quiet space, not a punishment space. At first, you may need to help her remember to go there when she’s upset.
  3. Identify the cause. Knowing the source of a tantrum makes it easier to defuse. It can help you find an in-the-moment solution and help your child find better ways to deal with the situation next time.
  4. Have clear expectations and consequences. Let your child know what you expect in certain situations. Explain what will happen if the expectations aren’t met.
  5. Talk the situation through. Your child may not be acting appropriately, but that doesn’t mean her feelings aren’t real. Acknowledge what’s upsetting her and help her name the feelings. For example: “I know you’re angry with me because I asked you to turn off the video game. I get mad, too, when I have to stop doing something fun.”
  6. Ignore the tantrum behavior. For some kids, the most effective reaction is no reaction. If your child’s tantrum is fed by the negative attention she gets as you’re trying to tame it, it may be better to give her some space and not respond at all.
  7. Reinforce self-control and positive behavior. Praise your child when she’s able to gain control and calm down. Let her know specifically what she’s doing well. For example, “I know you were really angry and it was hard for you to stop yelling. You did a nice job taking some time to cool down. Now we can talk about this calmly.”

Ways to Manage a Meltdown

Meltdowns are more extreme than tantrums, and handling them is more complicated. Knowing the triggers for your child and the signs of escalation can help you avoid a total explosion. But even if you can’t stop a meltdown, there are ways you can respond to help your child regain control.

Before the Meltdown

  1. Know your child’s triggers. They’re not the same for every child. For some kids, it might be sensory or emotional overload. For others, it might be too many demands, unexpected changes or pain and fear. If you know your child’s triggers, you can try to avoid them.
  2. Watch for and take note of patterns. It can help you learn your child’s triggers. You may notice that your child gets more anxious or has more trouble at a certain time of day. For instance, if meltdowns tend to happen close to mealtimes or bedtime, hunger or fatigue may be triggers. Or you may notice that where they happen have something in common, such as noise or crowds.
  3. Recognize the signs of escalation. Your child may show warning signs that she’s having trouble coping. If you can catch them early enough, you may be able to help her calm down before she becomes out of control. Common warning signs include:

  • · Trouble thinking clearly, making decisions or responding to questions
  • · Repeating thoughts or questions over and over
  • · Refusing to follow directions or cooperate
  • · Trying to shut out sensory input or attempting to run away or hide
  • · Increased movement, like fidgeting or pacing
  • · Complaining of physical issues like dizziness or heart pounding

 

  1. Try to redirect from the trigger. For some kids, the escalation phase can be interrupted. See if it helps to try to distract her with something else to do or by redirecting her to another task or activity.
  2. Be patient. Your instinct may be to try to stop an escalation quickly, but talking fast and loud can make it worse. Give your child more space and more time to process what you’re saying. Use short, concrete sentences that take away your child’s need to make decisions.

During the Meltdown

  1. Do a safety assessment. When your child is screaming and throwing things, it may feel like an emergency. But that doesn’t mean it is. The question to consider: Is anyone hurt or going to get hurt?
  2. Be reassuring. It may take trial and error to know if your child prefers physical distance or a firm hug or touch during meltdown. But keeping your voice and body language calm is helpful in either case. Make sure your child knows you’re there and you understand she may feel scared and out of control.
  3. Provide some space. If you’re out in public, try to help your child move to a quieter place. If you’re at home, see if you can get your child to go to the part of your home that is her calming zone. If it’s not possible to move your child, ask other people to give you both some space.
  4. Tone it down. Turn down lights, keep things quiet and try not to crowd your child. If you’re at home and your child isn’t able or willing to move to her room, try standing off to the side. (Standing in the doorway can make your child feel blocked in.)
  5. Consider your post-meltdown plan. Start thinking about how to reengage with your child after the meltdown without reigniting it. You may need to abandon your shopping trip. If the meltdown was triggered by an emotional conversation, you may need to back away from that topic and find a new way to approach it the next time you try to talk about it.

After the Meltdown

  1. Take time to recover. Once your child starts to calm down, she may feel embarrassed or guilty about her outburst. She may also be physically exhausted. Give her time to collect herself.
  2. Find the right time to talk. You may want to help your child make sense of what happened. Right afterward may not be the best time. But when you’re both calm, here are some ways to approach it:

  • · Give your child a heads-up. Let your child know you’re going to talk so she has some advance notice. Reassure her she’s not in trouble.
  • · Be brief. Talking about a meltdown can make kids feel remorseful and defensive. Say what you need to say, but try to avoid going over the same information repeatedly.
  • · Check for understanding. Ask your child to tell you in her own words what you talked about. Answer any questions she may have. If you’ve decided on an action plan, see if she can summarize it for you.
  • Keep in mind that managing meltdowns and taming tantrums takes practice. Learning to recognize the signs and teaching your child coping skills can help you both find ways to respond more effectively in the future.

 

Key Take-aways

  • · Knowing the triggers can help keep a meltdown from escalating.
  • · Ignoring a tantrum can sometimes stop it.
  • · Creating a “calm space” can help with both tantrums and meltdowns.

 

https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/sensory-processing-issues/taming-tantrums-vs-managing-meltdowns

10.15. Tantrums in Autism: new study says it’s behaviour not frustration

By Maureen Bennie, Autism Awareness Centre Inc., https://autismawarenesscentre.com

We’ve all been there: watching as our child completely breaks into uncontrollable rage/tears in front of us. Sometimes it’s in the privacy of our own homes, but when you have a child with autism, more often than not it will be in public as well. Up until recently, there has been a common misconception that poor communication/low verbal skills in people with autism is a cause of their more frequent tantrums due to being frustrated at not being able to communicate their needs and wants. While it is likely frustrating not to be able to communicate easily, new research from Penn State College says this is not the main cause of tantrums in those with ASD.

Tantrums are rarely about communication challenges

Cheryl D. Tierney, associate professor of pediatrics, College of Medicine, Penn State Children’s Hospital says:

“There is a common pervasive misbelief that children with autism have more tantrum behaviors because they have difficulty communicating their wants and their needs to caregivers and other adults. The belief is that their inability to express themselves with speech and language is the driving force for these behaviors, and that if we can improve their speech and their language the behaviors will get better on their own. But we found that only a very tiny percentage of temper tantrums are caused by having the inability to communicate well with others or an inability to be understood by others.”

So how can we help reduce tantrums in those with autism?

Tierney states that we need to focus more on improving behavior rather than speech and language to reduce tantrums. Parents need to know that behavior may not improve as speech develops. They will need additional support to see improvement in behavior.

Tantrums are normal behaviour in all young children. Tantrums are about growing skills and developing independence. They happen when something blocks a child from doing something they want. The child may not yet have the skills to express strong emotions in other ways. For example, a temper tantrum may happen when a child gets frustrated because he can’t button a shirt, or a child may get upset when she is told it’s time for bed but she wants to stay up. In children with autism, this is all the more complex because of the added element of meltdowns that can look like tantrums but need an entirely different set of skills and responses. Below are some helpful hints to deal with tantrums in those with ASD.

Determine if it’s a tantrum or a meltdown. We have written before about the difference between an autistic sensory meltdown and a tantrum (see article) and how they each need a slightly different approach. While they might look similar on the outside, sensory meltdowns are not about frustration, and don’t have a goal. They are a response to external stimulation. Tantrums can often happen if your child is tired, hungry, or not feeling well, but they are always goal oriented, and they are always played to an audience. A meltdown will happen whether or not anyone else is around. A tantrum is designed to elicit a goal-oriented response from the person who is on the receiving end of it. Learning to distinguish between a meltdown and a tantrum is the first step to helping your child learn to manage either situation.

If it’s a tantrum, remember that every child is different. What worked with one of your kids may not work with another. Try a variety of methods to see what works with your child.

Remove the audience. A tantrum will often stop if the audience is removed: if the parent removes him-or herself, or the child is removed from the public space. If you know that your child tends to have tantrums in large groups, start with smaller gatherings until they have learned other coping mechanisms and behaviours. If you remove yourself, stay where your child can see you, but ignore them until they calm down.

Children may also be distracted out of their tantrums. If the child seems like they are getting frustrated with an activity, suggest something that they already know how to do, and are good at. Start quietly playing with another toy, and wait for your child to come over and join you. Music or a pet can also be a great distraction.

Change the topic. For example, if they are angry about brushing their teeth or going to bed, start talking about something fun you are going to do the next day.

Try incentives. If they are having a meltdown over an activity that is necessary, you can try playing a short game, or bringing out a special toy with the idea that they get back to the task at hand once they have calmed down.

Don’t forget to praise your child once the tantrum is over. It can also be good to acknowledge their feelings: “I see you were really frustrated with not being able to get your socks on, I understand why that would make you upset. Good work on calming down. May I help you try again?” Learning to cope with challenging emotions is a very important life skill. Children should definitely be congratulated when they manage to calm themselves.

Remember tantrums are normal. It is up to us as parents and caregivers to help our children learn new skills to deal with the strong feelings they will encounter as they learn new skills. Verbal communication IS important, but learning how to deal with life’s ups and downs is not a skill you necessarily need words for.

Study referenced:

Susan D. Mayes, Robin Lockridge, Cheryl D. Tierney. Tantrums are Not Associated with Speech or Language Deficits in Preschool Children with Autism. Journal of Developmental and Physical Disabilities, 2017; DOI: 10.1007/s10882-017-9546-0

11. 9 Technology
 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
11.1. Effective Use of Educational Software with Students who have ASD

Guidelines for the Effective Use of Educational Software with Students who have ASD and or other Developmental Disabilities

By Leslie Broun, M.Ed., ASD Consultant
Educational software can be a valuable component in the array of methods and materials used to teach students who have Autism Spectrum Disorders and/or other developmental disabilities. The use of the computer and educational software provides several advantages to the learner: 
  • The computer screen is a visual medium which allows the student to access her/his strength in the visual modality.
  • Computer programs offer unlimited opportunities to review concepts. Repeated trials allow opportunities to refine or consolidate a task or skill sequence.
  • Software programs that have been created for students who have learning difficulties generally maintain consistency in the language of instruction and in the program routines, as well as provide an element of predictability in how exercises will be presented.
  • Most educational software eliminates the need for using a pencil, particularly in the area of Mathematics. Many students with ASD and other developmental disabilities have significant difficulty using a writing tool, which can seriously interfere with task performance. When the pencil is removed from the learning experience, it frees the student’s focus and cognitive energy to deal with task expectations rather than struggle with numeral or letter formation.
  • Working with educational software allows for a focused instructional experience.
  • When software can be shared between school and home, the student may be more able to generalize information from one environment to the other. 

There are some preliminary steps that instructors can take so that students can participate to the best of their ability and with a clear understanding of task expectations. 

  • Make an informed decision about the software program you choose for your student.
    • Ask other instructors about software programs their students have used.
    • Look at educational catalogues and brochures that advertise educational software.
    • Go to the websites of companies that sell educational software. Many of these websites include free downloads and/or demonstration videos that explain the programs and that can be trialed. Some sites also offer software manuals that can be downloaded.
    • Seek the advice of a software distributor who has a broad knowledge of what kinds of programs are available.
    • Check to see if your classroom computer, as well as your school board’s computer systems, will be able to accommodate the program. 

When choosing educational software, preview its program components. Check to see if the cognitive level for intended users is indicated. It is critically important to study the software to determine which elements of a program are appropriate for the student. There are some important questions to ask in this process: 

    • Does the student have the pre-skills necessary to engage in the program?
    • What kinds of software has the student used in previous situations?
    • How did the student respond to other software programs?
    • Are there components of the program which may be too easy or too difficult for the student?
    • Does the program include audio? Does it give verbal task instructions? Are instructions clear and simple or do they involve two or three steps?
    • Does the student have adequate receptive language skills to understand the instructions or will they need further explanation by an instructor (perhaps put into a printed or written format)?
    • Is there a reading component to the program? Are the student’s reading skills adequate for effective participation in the program?
  • Look for the software features that are most useful for students with ASD/DD:
    • Clear visual images that do not veer too far from reality: either photographs or accurate drawings
    • Well-articulated and clear language of instruction
    • Single-step instructions whenever possible
    • The availability of Pause and Repeat features
    • Scaffolded tasks that do not become too complex too quickly
    • Task review opportunities
    • Tasks that allow the student to work independently
  • Check the technical requirements of the program. Can the technical components be manipulated, e.g. voice, length of time between tasks, mouse, touch screen, keyboard or switch capability? Determine which method of access will be most efficient for your student. 
  • Does the program have a data collection component? Can it be printed? Can the student participate in her/his own data collection process? 

 There is a vast array of educational software available which addresses the broad spectrum of academic and social needs of students with Autism Spectrum Disorders and developmental disabilities. This software can be an extremely useful component in a well-rounded and comprehensive educational program for our students.

 

Key Words:  Education, educational software, instruction, software requirements

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
11.2. Augmentative & Alternative Communication Applications

Tip Sheet

Alicia Garcia, Speech-Language Pathologist 

What is Augmentative and Alternative Communication (AAC)?

AAC allows people who have difficulty speaking to use gestures, signs, pictures, symbols or technology to express their wants, needs and thoughts. This tip sheet deals with technology used for AAC.

AAC relies on Speech Generating Devices (SGDs). At their simplest, these are machines that can record messages that their users then play back when they want or need to communicate to others. More complex devices allow people to communicate unlimited, unique messages by choosing from large sets of pictures, words or letters.

Modern technology allows commercial devices, such as the iPad and iPod Touch to be used for ACC thanks to specific ACC “apps” (software). This makes SGDs cheaper and easier to acquire than ever before. It also makes SGDs more appealing and socially acceptable for their users. In addition, users can take advantage of a wide assortment of other functions that can also support communication and language, such as taking and viewing photos or videos, accessing the internet, or using email or educational software.

What do AAC Apps Look Like?

There are hundreds of apps for communication, ranging in price from free to $300.  As a rule of thumb, the more features offered and the more customization allowed, the more expensive the app. Even the expensive apps often have free or low-price “lite” versions that offer basic features. This allows users to try out the app without investing a lot of money and, if they want, upgrade to the full version later.

  • AAC apps vary greatly in how they look, but fall into these general categories:
  • Apps with Pictures and Recorded Speech: a speaking partner records messages, then the user plays the appropriate message by choosing from a set of photographs or picture symbols
  • Apps with Pictures and Text-to-Speech: the user plays the appropriate message by choosing from a set of photographs or picture symbols, which then produce the message using the device’s own text-to-speech function (no recording necessary)
  • Text-Based Apps: the device “speaks” whatever the user types on the keyboard

 

How do I Choose the Right App?

Choosing the right AAC app for your child (of any age) is important: after all, you are choosing the language that your child will use to communicate and, in most cases, even the words that they will use. The ultimate goal is to match the child’s communication needs with the app’s features. With so many choices and devices to choose from, this can be difficult: whenever possible, get the advice of a specialist in communication or a speech-language pathologist with AAC knowledge. They will help you explore and consider the best app for your child based on things such as: type of pictures (photographs, line-drawings), ideal number of pictures per screen, amount and type of “navigation” (finding pictures on different screens), type of words (names, actions, describing words, etc.), function or purpose of messages (asking for things, making comments, asking questions, etc.).

What are Some Popular AAC Apps for iPads, iPhones and iPods?  

Say Hi! AAC*: (FREE) App with pictures and recorded speech. Has up to nine customizable pictures per screen, clean interface, straightforward and very easy to program.

http://itunes.apple.com/ca/app/say-hi!-aac/id499774007?mt=8

Answers:YesNo HD*: ($3.99) App with pictures and recorded speech for the iPad. Has two large customizable buttons per screen, up to 30 screens, allows creation of "lesson plans" (sets of custom button pairs linked by navigation arrows), simple, easy presentation for basic choice-making.

http://itunes.apple.com/us/app/answers-yesno-hd/id393762442?mt=8

Scene Speak*: ($9.99) App with pictures and recorded speech. Presents scenes or environments (living room, kitchen, etc) containing sound areas that users can select; scenes can be personalized.

http://itunes.apple.com/ca/app/scene-speak/id420492342?mt=8

Assistive Chat: ($24.99) Text-based App. It has a keyboard with large typing area, word prediction buttons and up to three different voices.

http://itunes.apple.com/us/app/assistive-chat/id379891874?mt=8

GoTalk NOW*: ($79.99) App with pictures and recorded speech. Has up to 25 customizable pictures per screen, large photo library with clear and crisp photographs, built-in internet image search and recorded voices; text-to-speech in variety of languages available at extra cost.

http://itunes.apple.com/us/app/gotalk-now/id454176457?mt=8

Sono Flex: ($99.99) App with pictures and text-to-speech. Has a large library of line drawing pictures, five voices, over 50 pre-programmed boards; free Lite version available.

http://itunes.apple.com/ca/app/sono-flex/id463697022?mt=8

Verbally Premium: ($99.99) Text-based App. Has a keyboard, word bank and frequent phrases; personalized word prediction, versatile ready-to-use app for literate individuals; free Lite version available.

http://itunes.apple.com/us/app/verbally-premium/id470081134?mt=8

TapSpeak Choice*: ($149.99) App with pictures, recorded and text-to-speech. Has Dynavox/Mayer Johnson PCSTM picture symbol library.  Has up to 56 pictures per screen.

http://itunes.apple.com/ca/app/tapspeak-choice-for-ipad/id408507581?mt=8

Touch-Chat HD: ($149.99) App with pictures and text-to-speech. Has four pre-programmed page sets targeting different communication needs, allows use of grids, interactive scenes or keyboard; messages can be easily shared on Facebook, Twitter, Tumblr or via text message or email.

http://itunes.apple.com/us/app/touchchat-hd-aac/id398860728?mt=8

Proloquo2Go: ($189.99) App with pictures and text-to-speech. Has large line drawing picture library, grids and keyboard with word prediction, large set of customizable features; comprehensive and easy-to-follow online training and support.

http://itunes.apple.com/us/app/proloquo2go/id308368164?mt=8

Speak for Yourself: ($299.99) App with pictures and text-to-speech. Has up to 120 pictures per screen, comprehensive vocabulary of the words used most frequently in face-to-face communication.

http://itunes.apple.com/us/artist/speak-for-yourself-llc/id482508201

 *Peut être utilisé en français

Please note: Prices listed are from the Apple Store, August 2012.

I Have the Device and the AAC App, Now What?

Having access to an AAC app does not automatically make someone able to communicate. Communication is a two-way process involving a speaker and a listener. A key component when teaching someone to use AAC apps is ensuring they understand that the device is a communication tool that they will use to express messages to someone who is listening and will respond to what they say. Learning to effectively use an SGD to express needs and wants, to share ideas, to have conversations with family and friends requires ongoing communication and language training: you should consult with a speech-language pathologist who can provide both.

Is AAC Covered by Ontario’s Health Care System?

The Assistive Devices Program of Ontario provides funding for SGDs for individuals who qualify. You will need a prescription for a device from an ADP-certified AAC team at one of the designated AAC Clinics across the province. Consult your local children’s treatment center for more information.

 

Keywords: Augmentative and Alternative Communication (AAC); Applications (apps); Communication; Computers; Educational Software; Software Requirements
 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
11.3. Autism Apps

Tip Sheet

What are iDevices?

iDevices are mobile devices from Apple computers. There are three models of iDevices: the iPad, the iTouch and the iPhone.

What are Apps?

Apps are software or programs that run on mobile devices. They are designed to perform a variety of tasks for many different purposes such as entertainment, education, business, productivity, etc. Apps for iDevices are installed via Apple’s iTunes online store.

What kinds of Apps are available for children with special needs?

There are thousands of apps to facilitate communication, support learning, promote independence or just have fun.  To find the right app for your child, start by installing AutismApp. This is a free app that offers a comprehensive list of apps for children with autism classified by their purpose or function e.g., behaviour and social skills, communication, fine motor skills, fun and games, sensory, speech and language, visual schedules, math, literacy, etc. AutismApp includes detailed information about each app, as well as price, reviews, screenshots and, in some cases, videos. It can only be used with a Wi-Fi connection.

Some popular apps for children with autism, classified by their function or purpose are:

SOCIAL SKILLS

Pictello: ($18.99) allows creation of talking photo albums, Social Stories®, and talking books; stories can be shared with non-Pictello users as PDF files through email, http://itunes.apple.com/ca/app/pictello/id397858008?mt=8

All About Me Storybook: ($2.99) customizable storybook offering picture, text and audio support to help children share their personal information; it contains twelve chapters including name, address, birthday, phone number, family members, things I like, etc. http://itunes.apple.com/ca/app/all-about-me-storybook/id426201106?mt=8

The Social Express: ($88.99) interactive social lessons to help children understand social situations, identify feelings in others, read non-verbal cues, learn how to start conversations, etc.  It has appealing graphics, a useful cueing system and customizable skill levels, http://itunes.apple.com/ca/app/the-social-express/id477525808?mt=8

LITERACY

Abilipad: ($18.99) allows creation of customizable keyboards with alphabet, whole words, phrases or pictures; a notepad section on top of the keyboard displays the child’s writing accomplishments, http://itunes.apple.com/us/app/abilipad/id435865000?mt=8

ABC PocketPhonics: ($2.99) teaches handwriting, letter sound identification and first words spelling in fun, interactive ways; it has pleasant images and sounds, http://itunes.apple.com/ca/app/abc-pocketphonics-letter-sounds/id299342927?mt=8

I Like Books: ($1.99) 37 picture books for children ages 0 to 6; words are highlighted in red as the audio is played back.  It has attractive images and large text offering an errorless and enjoyable reading experience,

http://itunes.apple.com/ca/app/i-like-books-37-picture-books/id460795092?mt=8

BEHAVIOUR

Choiceworks: ($9.99) allows creation of customizable feeling boards, waiting boards with timer and visual schedules paired with an all done column to check off steps, http://itunes.apple.com/ca/app/choiceworks-visual-support/id486210964?mt=8

Time Timer iPad edition: ($6.99) visual countdown; electronic version of popular Time Timers used in schools and therapy sessions,

http://itunes.apple.com/us/app/time-timer-ipad-edition/id434081367?mt=8

iMovie: ($4.99) great movie making app to create and edit movies and teach desired behaviours via video modeling (i.e., the child watches a video of himself or a peer performing a desired behaviour successfully and then is encouraged to imitate the behaviour), http://itunes.apple.com/ca/app/imovie/id377298193?mt=8

COMMUNICATION

Answers YesNo HD: ($3.99) has two large customizable talking buttons for simple, straightforward choice making tasks; includes up to 30 pairs of customizable buttons, http://itunes.apple.com/us/app/answers-yesno-hd/id393762442?mt=8

GoTalk NOW: ($79.99) has up to 25 pictures per screen, large photo library with clear and crisp photographs, built-in internet image search, and recorded voices; text-to-speech in a variety of languages is available at an extra cost,

http://itunes.apple.com/us/app/gotalk-now/id454176457?mt=8

Proloquo2Go: ($189.99) popular communication app; has large picture library of line-drawing symbols, grids and keyboard with word prediction; includes large set of customizable features, http://itunes.apple.com/ca/app/proloquo2go/id308368164?mt=8

VOCABULARY EXPLORATION AND LANGUAGE

Inclusive Smarty Pants ($2.99): large, colorful cartoon faces with animated expressions and sounds to help children identify feelings and emotions, http://itunes.apple.com/us/app/inclusive-smarty-pants/id490126715?mt=8

Put it Away: (FREE) teaches children how to tidy up and clean up a room by dragging items to specific locations on a scene (e.g., in a kitchen scene, bowls and plates have to be placed in the sink); exercises category, sorting and memory; can be fully customizable with scenes created from the photo library, http://itunes.apple.com/ca/app/put-it-away/id494750234?mt=8

Toontastic (FREE): cartoon movie maker; kids can pick the background, characters, colours, or music, record voice and create their own animated video stories,

http://itunes.apple.com/ca/app/toontastic/id404693282?mt=8

Picture the Sentence HD ($5.99): educational app that helps children understand language by visualizing key parts of sentences individually and then as a whole, http://itunes.apple.com/us/app/picture-the-sentence-hd/id478599625?mt=8  

ENTERTAINMENT

Talking Carl: ($0.99) funny cartoon that repeats everything that you say in a silly voice, http://itunes.apple.com/ca/app/talking-carl-gugl/id434860636?mt=8

Thomas & Friends Game Pack: ($2.99 each): interactive puzzles, colouring and animation; a must-have for Thomas the Tank Engine lovers who enjoy matching and puzzles, http://itunes.apple.com/ca/app/thomas-game-pack/id352660283?mt=8

Hand Drums: ($0.99) fun and simple app with large and realistic looking images, http://itunes.apple.com/ca/app/hand-drums/id380564151?l=fr&mt=8  

The following apps can be used in any language, including French:

 

  • Pictello
  • Abilipad
  • Time Timer
  • iMovie
  • Answers YesNo
  • GoTalk NOW
  • Inclusive Smarty Pants
  • Toontastic
  • Hand Drums

 

Please note: Prices listed are from the Apple Store, August 2012.

Keywords: Augmentative and Alternative Communication, Applications (Apps), Computers, Communication, Behaviour, Social Skills, Educational Software, Leisure, Teaching Strategies

 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
11.4. 25 iPad Facts & Apps for Supporting Students with Autism Spectrum Disorder & Other Exceptionalities

By: Kimberly Maich, PhD, OCT, Brock University and Carmen Hall, MC, CCC, BCBA, PhD Student, Apple Distinguished Educator, Fanshawe College

With the inception of the iPad and the surge of app development for children with Autism Spectrum Disorder (ASD), the iTunes “App” Store where iPad applications (typically referred to as “apps”), are purchased for classroom implementation can seem a little overwhelming at times! Nonetheless, the user-friendly nature of the tablet, its accessibility, and its relatively low costs have changed the way many learners with ASD can, for example, learn new skills, meet curricular expectations, utilize augmentative communication, and access required accommodations (Banda, Grimmett, & Hart, 2009; Mang & Wardley, 2012). The following 25 apps and facts can help with building a strong entry level foundation of professional knowledge and skill to support students with ASD in your classroom through the use of iPad-based tablet technology.

1: Devices

A range of tablet devices are currently available, falling primarily into one of three categories: (a) the iPad, (b) Android tablets, and (c) Windows tablets. Although variety and price varies, the iPad has dominated in the education field, with iPad sales in school doubling each year (Travlos, 2012). The primary reason for this participant success is the availability of desired apps, as well as the presence of built-in accessibility features which provide immediate options to meet the needs of a range of learning styles. Currently, the iTunes store has over 40,000 educational-based apps available, including a significant portion of online textbooks and other learning resources available on interactive iBooks, a framework for building customized teaching and learning materials. Apple has also created iTunes U, a free, user-friendly learning management system which allows academic content sharing at any age, grade, or level (apple.com/education/ipad/itunes-u/). In comparison, other, similar devices are more limited in the educational sector.

2: Accessibility

One of the most valuable characteristics of the iPad is its built-in accessibility. These features are created for individuals with various learning styles, challenges, preferences, and/or disabilities, adapting the presentation of information for vision/hearing/communication, physical/motor skills, and learning/language/literacy needs. An overview of these features are available online at apple.com. To find these options on the iPad itself, go to Settings -> General -> Accessibility. Guided access, text-to-speech, speech-to text, and zoom are some other options which provide accommodations for individual learning needs.

3: Guided Access

Some students are prone to exiting target instructional apps for more preferred and/or reinforcing apps, creating a situation of off-task time that should be devoted to learning. The guided access option allows educators and/or parents to lock the screen (wholly or partially) and disable the iPad’s home button, enabling a greater likelihood of on-task behaviour.  

4: Text-to-Speech

Text in documents, iBooks, notebooks, online documents, etc., can all be read aloud at any point by enabling or “turning on” this built-in option. Simply choose the nationality of the voice, and each time text is highlighted on the iPad, it is then “spoken” aloud.

5: Speech-to-Text

This feature is only available in models newer than the iPad2 (e.g., iPad Mini, iPad Air). The built-in keyboard microphone, if utilized, transcribes spoken words with impressive accuracy into electronic text.

6: Zoom

Turning the zoom feature on will allow users to zoom in on (i.e., magnify) any portion of the screen—or within apps themselves—with a three-finger tap.

Finding Apps

Apps can be overwhelming when looking at the tens or hundreds that appear after a search in the App Store. In order to make the searching process more efficient, consider apps or websites that are specific to special education or ASD to help find the app that is suitable for a particular student’s needs with greater efficiency and accuracy.

7: Autism Apps Search Engine

Autism Speaks has recently released a unique search tool targeted specifically on finding the best apps for ASD: Autism Apps Search Engine.  While this tool is not limited to iPad apps, they are included. This search tool is not only unique in its narrow focus, but also allows its user to search by function, device, age group, as well as through a more commonly-known keyword search.  Its user can also read and add comments and ratings, and most exciting: read summaries of any related research. Read more about Autism Apps on the Autism Speaks website.

8: Apps for Teachers

Apple itself has also created a new category in their online offerings: Apps for Teachers found on their website. This includes information about traditional academic subject areas, as well as special education-based apps. This category can be found within the Apps for Teachers site by scrolling down to “Accessibility” which launches “Special Education Apps” in the iTunes store organized by subcategories such as “Communication.”

9: App Abled

Although there are many other choices in cyberspace, App Abled, found online at www.appabled.com, also warrants mention. Self-professed as “app advice for the special needs community,” this site offers up multiple lists, regular reviews, a developer of the week, and an app of the day. Utilize any of these app-finding sites and tools to narrow down your search from “everything on the internet” to “what works for a child with ASD,” and find the apps for you and your needs with greater efficiency and effectiveness.

10: Apps Gone Free
Before you delve further into the world of apps, step back and look through the new selections of the day in the Apps Gone Free app: an app about apps! Apps Gone Free makes no for-cost recommendations. They simply post what are described as “xpert-picked top-ranked apps, for FREE!” as daily suggestions for your selection. Read more about this app (and download it) online on iTunes.

Apps for Social-Emotional Growth

One of the most significant benefits of using the iPad for students with ASD is the benefit of teaching social skills in a systematic manner. Since students with ASD do not typically acquire social skills by observation alone (Myles, Simpson, Ormsbee, & Erikson, 1993), targeting skills with relevant, skills-based apps can be beneficial.

11: Social Express

A comprehensive social skills teaching tool. Follow a story where various characters make social mistakes, while stopping to ask the student questions on what occurred and what they should do next.

Cost: $, Available on iTunes

Read More: at thesocialexpress.com

12: Bla Bla Bla for Volume Regulation

An app that mirrors the student’s voice input with a visual image of various characters whose expressions and voice match the volume of the student. Good for teaching volume control.

Cost: Free, Available on iTunes

Read more online on Lorenzo Bravi’s website, www.lorenzobravi.com

13: Story Wheel

Designed to teach conversation turn taking, story development, and imaginary play through making an interactive story with another person.

Cost: Free Trial Version plus in-app purchases, Available on iTunes           

Read more online about Story Wheel, www.storywheelapp.com

14: Hidden Curriculum for Kids, Adolescents, & Adults

Based on the well-known book, The Hidden Curriculum (Smith-Myles, Schelvan, & Trautma, 2013), these apps simply ask questions and provide choices related  to common social situations that are often a struggle for those with ASD.

Cost: $, Available on iTunes

Read More about The Hidden Curriculum resource www.aapcpublishing.net

15: Speech Prompts

A multi-functional app providing a volume meter that can be customized by context, and a voice match that teaches tone, intonation, and pitch by recording and visually depicting sound waves. Users can compare, manipulate, save, and review various sound waves.

Cost: $, Available on iTunes

Learn more by watching an online demo at http://vimeo.com/55303423

ABA-Based Apps

In the recent National Standards Project completed by the National Autism Center (2009), the majority of strategies with a strong evidence base are found with the field of Applied Behaviour Analysis (ABA). Some of the below ABA-based tools are tools for the needs of students, and others are developed for the ABA-based needs of educator and clinicians.

16: Behavior Snap

A data collection app that collects duration, frequency, ABC, and interval data that can be made into reports and shared in an email database.

Cost: $, Available on iTunes

Read more on the developer’s website at www.behaviorsnap.com

17:  Preference & Reinforcer Assessment

A tool that guides individuals to complete multiple stimulus (with and without replacement) and paired-choice preference assessments, with additional features (e.g., where to place reinforcers) while collecting data automatically.

Cost: $, Available on iTunes

Read more at the autismepicenter.com

18: Kindergarten.com Apps

A variety of apps that teach basic concepts to early learners with flashcards, receptive identification, and problem solving, based on the principles of ABA. Apps include a built-in data collection feature, prompts, and reinforcement.

Cost: $

Read more at kindergarten.com

19: Skill Tracker Pro

A comprehensive data collection software which provides options for various clients and observers, with automatic charting features and video recording.

Cost: $, Available on iTunes

Read more at www.behaviortrackerpro.com

20:  Token Board

A versatile token board that includes personalized pictures and numbers of tokens to customize a token economy.

Cost: $, Available on iTunes

Read more at zorten.com

Apps for Literacy Support

A range of apps are available to support literacy-based classes, as well as literacy needs, acting as tools for supporting students who struggle with reading, writing, organization, and more. Many of these are similar to apps that many be familiar to teachers, students, and parents from their experiences with Special Education Amount (SEA)-funded hardware and software purchases (Ontario Ministry of Education, 2013). However, they may not have the same level of complexity as the laptop-based software. On the other hand, they may have a sufficient number of features to support in-class needs for junior, intermediate, and high school learners who need accommodation and support for success as independent learners in a literacy-infused environment.

21: Dragon Dictation

Dragon Dictation is the app equivalent of Dragon Naturally Speaking with its speech-to-text features.

Cost: Free, Available on iTunes

Read more at nuancemobilelife.com

22: Typ-o HD

Typ-o HD is an example of word prediction software. In addition, its user can pre-set three levels of spelling support, and can touch-and-hear choices of word replacement to make informed writing decisions.

Cost: $ but free trial versions are advertised by its developer, Available on iTunes

Read more at secondguess.dk

23: Firefly K3000

Firefly K3000 is the app-based version of Kurzweil 3000, providing text-to-speech capabilities and more. 

Cost: Free, Available on iTunes

Read more at bridgesontario.wordpress.com

24: Inspiration Maps

Inspiration Maps allows visual learners to brainstorm, plan, research, outline their written work (e.g., essays), and more in an interactive, visual manner. Kidspiration Maps and Kidspiration Maps Lite are analogous program options for younger learners and/or those developing more basic skills.

Cost: $ or Lite Version for free, Available on iTunes

Read more at inspiration.com

25: AudioNote

A great app for students to take notes. At the same time that notes are being taken, a simultaneous audio recording is occurring. Pictures can be inserted and when the student needs to reference the audio clip for the missed portion of the lesson, it will play when the text is touched.

Cost: $, Available on iTunes

In Sum

Along with the pedagogical experience and critical decision-making skills of professional educators, these 25 apps and facts related to available devices, accessibility features, finding apps, apps for social-emotional growth, ABA-based apps, and apps for literacy support provide a framework for utilizing the iPad successfully for students with ASD.

References

Banda, D. R., Grimmett, E., & Hart, S. L. (2009). Activity schedules. Teaching Exceptional   Children, 41(4), 16-21.

Mang, C. F., & Wardley, L. J. (2012). Effective adoption of tablets in post-secondary education: Recommendations based on a trial of iPads in university classes. Journal of Information Technology Education: Innovations in Practice, 11, 301-317.

Myles, B. S., Simpson, R. L., Ormsbee, C. K., & Erickson, C. (1993). Integrating preschool children with autism with their normally developing peers: Research findings and best practice recommendations. Focus on Autistic Behavior, 8 (5), 1-18. 

National Autism Center. (2009). National Standards Report. Retrieved from http://www.nationalautismcenter.org/pdf/NAC%20Standards%20Report.pdf

Ontario Ministry of Education. (2013).    Special education funding guidelines: Special equipment amount.  Retrieved from http://www.edu.gov.on.ca/eng/
funding/1314/2013_14_SEA_Guidelines.pdf

Smith-Myles, B., Schelvan, R., & Trautma, M. (2013). The hidden curriculum for understanding unstated rules in social situations for adolescents and young adults. Shawnee Mission, KS: Autism Asperger Publishing Company.

Travlos, D. (2012). Apple: Eight reasons why the iPad will dominate the tablet category. Retrieved from http://www.forbes.com/sites/darcytravlos/2012/11/30/apple-eight-reasons-why-the-ipad-will-dominate-the-tablet-category/

 


 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
12. 10 First Person Perspective
12.1. Bullying and Victimization in Youth with ASD


What is the research about?

Youth with Autism Spectrum Disorders (ASD) experience higher rates of bullying than youth who do not have disabilities. However, very little research has been done to investigate bullying experiences in youth diagnosed with ASD. Rather, research has focused on rates of bullying victimization in youth with ASD compared to typically developing youth. The current study examined various forms of bullying in children, youth, and young adults with ASD. The study also investigated the relationship between victimization and mental health problems, and the individual factors (e.g., child age, communication problems) and contextual factors (e.g., parent mental health) that increased the likelihood of being bullied. 

What did the researchers do?

The researchers asked 192 parents whose children (ages 5 - 21 years) had a diagnosis of ASD to complete an online survey about bullying experiences and mental health issues. All the youth were enrolled in school (grades 1-12), and nearly all were Canadian.

What did the researchers find?

The majority of parents (77%) reported that their child with ASD had been bullied at school within the last month. Many youth were experiencing chronic bullying; 43% of the youth experienced bullying at least once per week, and 50% had been experiencing victimization for more than a year. Chronic victimization was related to mental health problems including depression, anxiety, hyperactivity, and self-harm. Victimization was more likely to occur in younger children, as well youth with fewer friends at school, greater communication problems, and parents with mental health problems.

How can you use this research?

This study showed that rates of bullying are higher among youth with ASD than the general population. It is important to pay attention to the mental health in youth with ASD who are experiencing bullying and provide them with interventions to address mental health problems. It is important to help reduce the risk of bullying by helping youth to communicate about bullying experiences effectively, and by facilitating the development and maintenance of positive peer relationship and friendships. We need to support parents to work with schools where the bullying is happening, and to support school staff in creating safe environments for everyone. School-wide bullying prevention programs and interventions can be used to reduce bullying, and to build healthy relationships at schools.

What you need to know? (take home message)

Bullying is a very common experience for youth with ASD and occurs more often than in youth without ASD. A child's age (being younger), communication problems, lack of friendships at school, and mental health problems among parents all increase the likelihood that a child with ASD will experience bulling. Youth with ASD who experience chronic bullying are much more likely to have mental health problems than other youth with ASD, and it is important to address victimization with adult support in the home, school, and community, as well as school-based bullying prevention and intervention programs.

About the researchers

M. Catherine Cappadocia is a doctoral student in clinical-developmental psychology at York University, working with Dr. Debra Pepler. She is also a research assistant for PREVNet (Promoting Relationships and Eliminating Violence Network), a national network of Canadian researchers and non-governmental organizations committed to bullying prevention and intervention. Catherine has studied bullying for almost ten years, examining its relationships with other phenomena such as attachment to parents and peers, gang involvement and body image.

Jonathan A. Weiss is a Clinical Psychologist, and Assistant Professor at in the Psychology department at York University. As the Chair in Autism Spectrum Disorders Treatment and Care Research, Dr. Weiss' research focuses on the prevention and treatment of mental health problems in people with autism spectrum disorders (ASD) and/or intellectual disabilities (ID) across the lifespan. Dr. Weiss is also interested in why people with ASD are prone to developing mental health problems, and evaluating novel treatment strategies to help youth and adults with ASD deal with these issues, as well as other stressful events like bullying.

Debra Pepler is a Registered Psychologist, and a Distinguished Research Professor in the Psychology department at York University. Dr. Pepler was awarded a Network of Centres of Excellence: New Initiatives grant to establish PREVNet - Promoting Relationships and Eliminating Violence Network and continues to be interested in community-based research and public policy development on pressing social issues related to children and youth. Dr. Pepler's research interests also include understanding and addressing children's aggression, bullying, and victimization. 

Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(2), 266-77.

This summary was written by Stephanie Fung for the Chair in Autism Spectrum Disorders Treatment and Care Research. This summary, along with other summaries, can be found at http://asdmentalhealth.ca/research-summaries/


 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
12.2. Common Money Management Challenges and Solutions

By Todd Simkover & Evguenia Ignatova

 
The information stated in this article comes from the authors' personal experiences, their observations of other people on the autism spectrum, as well as Evguenia's consultation with an autism specialist.

Budgeting and money management can be difficult for anyone, not just for individuals on the autism spectrum. A lot of the time, people on the spectrum have trouble managing their own money due to a lack of guidance and practical experience when it comes to saving up and spending. With other issues to deal with, parents can sometimes overlook the need for teaching this crucial skill. The following are some common difficulties people on the spectrum encounter when it comes to managing money:

 

  • Understanding the monetary value of items: In order to understand how to spend wisely, an individual has to learn how much it is practical to spend on a certain item. In order to be able to grasp this concept, one needs to figure out the most important features of the item being purchased and whether one feature outweighs another. For example, when Todd moved into his first apartment, he bought an air conditioner for around $600.00 and didn’t even think of a used one. Since he was unfamiliar with reasonable prices for air conditioners and didn’t have the patience to shop around for the best deal, he made the mistake of trusting the salesperson’s advice as he was told that this was the one he needed for the size of his apartment. However, the air conditioner installer later informed him that he was ripped off, as he only needed an air conditioner half as powerful which would have cost half the price. Even more surprisingly, he was also informed by the installer that this was the largest air conditioner that he ever had to install! Nevertheless, he did not go through the trouble of returning the appliance as he thought it would have been too overwhelming as he had a lot on his plate at the time. Despite regretting having spent more than he needed, Todd acknowledges that one advantage of having an excessively large air conditioner was that he was never hot in his apartment! This example demonstrates that whenever you set out to buy something, you have to make sure that you are aware of what exactly it is that you are looking for.
  • Poor planning: When making purchases, it is necessary to have an idea of what options are available ahead of time. This is often easier to do with things that you may buy often, such as snacks or drinks, since you gain a lot of experience buying these things. However, with larger purchases such as furniture, cars, homes, household appliances, or even clothing/shoes, you need to make sure that you know what is available and what you want to buy in advance. The less experience people have with purchasing certain things, the more prone they are to potentially wasting a lot of money, as Todd's example demonstrates: "I have mismanaged my money with the last two cars I've had. I leased my first car (which is basically renting, but then you could choose to keep the car if you pay off the remaining amount). When you lease a car, you have to pay for the kilometres travelled ahead of time. Because I did not read the fine print, I was under the impression that if I did not use the full amount, I would get reimbursed. Also, I was working full-time at the time, and didn’t anticipate that I would later go back to school and drive less due to working fewer shifts. As a result of this miscalculation, I spent an extra $1300.00 on prepaid kilometres that were never used—I returned the car with 13000 kilometres less than I signed up for and was surprised to discover that I could not get the money back. For my second car, I wanted to get an old car so that I could save money on insurance, but then I ended up spending more money on car repairs than I would have saved on car insurance." Therefore, before making any large purchase, it is necessary to brainstorm all of the future possible consequences before making the purchase. In order to do this properly, in-depth research is necessary.
  • Susceptibility to peer pressure and gullibility: We know many people with ASD who are desperate to fit in socially and are very eager to please. Non-autistic people often spend large amounts of money on eating out or drinking and may consider someone who is trying to save money as "cheap". This can pressure a person to spend more than he or she can afford. Another attempt to fit in socially or to try to be useful in society may be to lend or to give away money to people. Without full knowledge of people's intentions and without full awareness of one's spending limitations, lending or giving away money can lead to future money shortages. And as Todd's first example demonstrates, it is also important to understand that salespeople are generally not trustworthy as they are usually trying to make the most money out of their sales. Even when buying clothes, I have often mistakenly fallen for the salesperson's opinions, but then often came home and realized that I bought the wrong size or that I misinterpreted what the salesperson said.
  • Sensory differences and cognitive rigidity: While this does not seem to directly relate to money management, it may impact spending. The following is Evguenia's experience: "When I walk into a store, I am overwhelmed by sights, sounds, and people. Even having prepared in advance, I can get distracted by other things in the store before I find the item I came for, which can make me confused. If there is anything unexpected about the item that I have not found throughout my research, like a wider shoe size than usual, it throws me off - I tend to buy the item anyway, since that is what I have prepared myself for. When I bring the item home, I either become anxious about going back to the store and facing a new situation with returning the item, or it takes me some time to get used to the fact that the item is not the best choice, after all. I have already spent about two hundred dollars buying the wrong items that way, and have often ended up giving them away for free." This is because it may be very difficult to sell an item once you have bought it, especially at a near-original price.

 

There are several possible solutions to the above problems. These solutions will require effort and dedication in the beginning. However, once one starts utilizing these strategies, it will become much easier and more routine to incorporate them into one's daily life.

 

  • Create a budget for each month, in the form of a checklist. Once you have completed each transaction, put a checkmark beside it, along with the actual amount you have spent on each transaction. Once you are done with all of the spending, compare the actual total amount you have spent to the total amount you have planned to spend. A sample budget may look like this:

 

JULU

Items

Planned ($)

Spent ($)

Rent

830.06

830.06

Groceries Week 1

50.00

57.20

Groceries Week 2

50.00

51.68

Groceries Week 3

50.00

49.50

Groceries Week 4

50.00

54.30

Eating Out

30.00

35.01

Total for the Month ($)

1060.06

1077.75


 

  • Do not buy things spontaneously: Stores often put out attractive items, like snacks, in the most visible places to encourage more spending. Clothing stores also tend to scatter all types of items around in order to encourage distraction and thus more buys. To avoid temptations, make a shopping list whenever you go shopping and buy only the items on that list. It is a good idea to keep a day planner and to write down anything that needs to be bought right away, such as when your toilet paper runs out. That way, later, you could just go through what you have written during the week in your day planner and put it together in your shopping list.
  • Do not go out for expensive occasions, like dinners, clubbing, or cinema, with friends who push you to spend more than you have planned to spend. Instead, you could either tell them that you do not want to go out or that you are busy. If going out with these people is absolutely necessary, such as for their birthday, make sure that you have planned to spend a certain maximum amount and do not exceed it. You may still remain friends with these people, but only spend time with them by enjoying less costly activities, such as meeting for coffee or coming over to each other's home.
  • When you have communication differences and more sensitivity to your surroundings, perhaps along with processing delays when it comes to new stimuli and change, you may need to compensate for this by thoroughly researching for any novel purchase you make, i.e. any particular item which you do not routinely buy already. For example, if you buy almost the same groceries every week, that is not a novel purchase and does not need to be researched in advance. You know what to expect when buying these items. However, buying new shoes, for example, needs to be prepared for in advance. With shoes, you need to know what your size is, how to test whether shoes are the right size, what you should ask the storekeeper (do the shoes stretch?), what to look for (is the shoe too narrow? too wide? how much can I move my foot inside the shoe?). When being overwhelmed by stimuli in the store, your physical senses may not function properly. Therefore, you need to plan out the exact steps you will take once you get to the store and start surveying the item you would like to buy. This can either be done through independent research, consulting with people you trust (i.e. parents, partner, close friends) or you may even get someone who knows you well to go to the store with you and help you shop. From his experiences with buying a car, Todd has learned that he needs to do more research before buying something and that he needs to not rush into things. He didn't take the time to think through his purchases because the process of making the purchase was too overwhelming for him.
  • Remember that little things add up. Keep a record of what you spend. Write down everything you spend money on, even the smallest things. Add up the total amounts at the end of the week, month, year, etc. which allows you to see how much you are spending on little things like snacks, candies, drinks, accessories, etc.
  • Make the concept of money visual. Spreadsheet software can be used to create graphs of amounts spent - pie charts can be especially useful. Another way of showing a budget visually is to create a pyramid with different amounts in different layers. The foundation layer would be the basic amount needed to survive - essential food, rent, transportation, and hydro/electricity bills if not included. One layer above would be less important spending, such as going out to eat, and the following layers would represent less and less important spending. The person on the spectrum can be taught that the bottom layer needs to be built in order for the top layers to be laid on top of it. This can be used to teach prioritizing in spending.

 

The above steps should help anyone manage their money better, despite any challenges associated with ASD that may arise. However, money management is a complex skill to learn and will take a lot of time, experience, and patience on behalf of both the individual and those who assist him/her in the process.

 

Todd Simkover, MA candidate in Critical Disability Studies, ASD Consultant, Self-Advocate & Speaker

Evguenia Ignatova, BA candidate in Psychology, Special Needs Consultant/Service Provider

 

Key words: Adults, Money Skills, First-hand account 

 
 
---------------
Disclaimer: This document reflects the views of the author. It is Autism Ontario’s intent to inform and educate. Every situation is unique and while we hope this information is useful, it should be used in the context of broader considerations for each person. Please contact Autism Ontario at info@autismontario.com or 416-246-9592 for permission to reproduce this material for any purpose other than personal use. © 2012 Autism Ontario  416.246.9592  www.autismontario.com.
--------------- 
12.3. Advocating for Yourself: First Hand Perspective

By Evguenia Ignatova

Knowing how to self-advocate is useful in a variety of settings, such as with your friends and relatives, at an educational institution, or on the job. How and when you advocate for yourself depends on how open you wish to be about your diagnosis and on how overt your symptoms are. I have written this tip sheet directly to and for people on the spectrum. However, for any parent, professional, or relative reading this, you are welcome to take this advice and adapt it to the people on the spectrum you are involved with.

The following are some general pointers on self-advocacy: 

Contrary to the popular perception, you do not necessarily need to disclose your actual diagnosis when you advocate for yourself. Instead, you can just provide a description of the specific behaviours that are relevant to the situation at hand. For example, if a teacher or a friend thinks that you are not listening because you are not looking at them when they talk, you can convey that you tend to pay attention better when you are looking away as visual movement is distracting to you making it difficult to both look and listen.

Although every person discloses differently based on individual preferences and abilities, it is crucial to learn how other successful people on the spectrum have disclosed to get a better idea of how to go about it. The book "Coming Out Asperger: Diagnosis, Disclosure, and Self-Confidence" (edited by Dinah Murray) is a collection of people's experiences with disclosure, which includes both good and bad experiences to learn from. Another book I recommend, "Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum" (editor Stephen M. Shore), provides more explicitly practical advice about self-advocacy. 

Knowing yourself well is crucial to successful self-advocacy. Although reading literature about other people on the spectrum, especially biographies, can be very helpful in achieving this goal, real-life experience and feedback from others is absolutely necessary. Start off by joining a local group for people with ASD in order to learn about their experiences and to get their feedback on your behaviours. If you receive any feedback that you perceive as "negative", avoid reacting to it emotionally and just incorporate it into a general picture of what others think of you. Remember, there is no such thing as "good" or "bad"; these are relative terms and are never absolute. As you gather more and more opinions, you will start to see recurring comments. Since so many people have confirmed these comments, they are likely to be the most accurate. Take these comments and think of how you can advocate for yourself accordingly.  

In order to self-advocate appropriately, it is also important to know how the non-autistic brain works and how non-autistics perceive you. People, who are older than you, such as your parents or your teachers, are the best sources of honest opinion and advice as they are most likely to tell you the truth about how you present to others, your strengths, and your weaknesses. While it is okay if you don't want to fit in and conform socially, it is important to understand the non-autistic communication style because you inevitably have to communicate with non-autistics on a regular basis throughout your lifetime. This knowledge will help you understand how you are different and why it can be difficult for you to socialize or to be in certain environments, which is the information you need to self-advocate well. Personally, reading literature about ASD written by non-autistic professionals has helped me understand how non-autistics might perceive me and react to me. As an added bonus, gaining this knowledge will help you appreciate the commonalities that you share with non-autistic people and will thus help you connect more effectively with all people, whether autistic or non-autistic. 

There is a difference between "advocating for yourself" and "making an excuse". Something is more likely to be perceived as an excuse if it is a very general statement. For example, do not just say you do this and that because you have Asperger's or autism. When you advocate for yourself, you need to provide a rational explanation as to why you do something, as well as giving a possible solution to the situation. For example, you may know that you have a tendency to be truthful and straight up with everyone about everything. However, people sometimes get angry with you because you said something they perceived as rude and it hurt their feelings. Next time this happens, saying "sorry, I did this because of my Asperger's/autism" will not suffice, because the person may not even know what Asperger's/autism is or might be misinformed about it. Instead, it would be more helpful to not even disclose the diagnosis, but say something along the lines of: "I apologize for hurting your feelings. I tend to talk very factually about things and don't think about how other people might react to what I say, because my emotional response to things tends to be different from other people. However, I did not have the intention to hurt you. For the future, I want you to know that all of my actions toward you are well-intended." 

Having read the above, you might ask: Why should I go through all this trouble to learn how to advocate for myself? Wouldn't it be easier to try to fit in with everyone else and hope that, someday, you will no longer be autistic? The truth is that, no matter how much you try to fit in, you will still have certain autistic patterns of behaving and thinking, and will thus still have some challenges associated with being on the spectrum. Therefore, you will still need to know how to advocate for yourself if you hope to be successful at reaching the goals you have set out for yourself. Even though you are autistic, you can still do well in life due to the strengths that come with being on the spectrum, but learning self-advocacy skills will be one of your keys to success. While the above points are the general ways you can get better at self-advocating, how you advocate for yourself properly varies across situations. Here are some scenario-specific guidelines for self-advocating: 

With family and friends:

Give them some in-depth information about autism/Asperger's to read through before you begin to bring up specific things about you that you want them to understand. You have a close enough relationship with these people to be able to have them spend extended periods of time researching about the condition. The people who are not as close to you, like co-workers or teachers, will not have the same commitment to improving your life as they are busy and have a lot of other work to do/clients to serve. It is also not part of their responsibility to provide you with extensive attention. 

At school/college/university:

If you need any additional accommodations to the ones you are getting thr