1. 2 Diagnosis
1.1. 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.

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1.2. 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

1.3. 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

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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.
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1.4. 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

 

 

 
 
 
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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.
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1.5. 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.

 
 
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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.
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1.6. 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


 
 
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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.
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1.7. 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).