1. 8 Intervention Options


1.1. 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.

 

 

 
 
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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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1.2. 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.

 
 
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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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1.3. 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.

 

 
 
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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. 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?

 

 

 
 
 
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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. 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?

 

 

 
 
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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. 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.

 

 

 
 
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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. 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.

 

 

 
 
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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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1.8. 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.

 

 
 
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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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1.9. 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). 

 

 


 
 
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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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1.10. 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.

1.11. 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.

 

 

 

 

 
 
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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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1.12. 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.

 

 
 
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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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1.13. 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/

1.14. 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

1.15. 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