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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Thursday, November 08, 2007


Person-Centred Planning

There are many options to approach the ongoing development of an autistic child. Talk to many a family with an autistic child here in Ontario, however, few are aware of any options in planning, AAC, and facilitation of teams. Add to that limiting services by suggesting there is only ONE type of therapy to assist the autistic child, and we have an urgent situation where there are few services available here in Ontario that are actually subsidized. Typically in Ontario, we have to do it this way:

1. Get on a wait list for ABA services with TPAS;
2. Wait for an "approved" supervisor (a psychologist with BCBA accrediation) to run the child's ABA team;
3. Find ABA therapists (usually young women, but not exclusively -- often students interested in pursuing further study in ABA or seeking out part-time employment;
4. Add an SLP and an OT to the team, which is not subsidized to the same extent by government (there are some programs but the wait lists are pretty long -- Geneva Centre for Autism in Toronto is an example of some such services -- a full-time OT was just hired).These service providers often become part of the overall team and goal-setting process. Some kids are lucky if schools bring such clinicians to consult in their settings. Training for SLP's is limited -- very few are trained in how to use technologies to assist learning.

From there, a team moves together, but within the ABA framework (which is changing in shape and form -- so we cannot call it ABA anymore).

New parents to the process may not realize that there are options that may include a myriad of professionals as well as other team players that can assist the autistic child in their development.

I thought families might be interested in this tool: "Little Ones Have Big Dreams Too." By visiting the Insitute on Disability at the University of New Hampshire, you might find some ideas to assist your current team or help direct change within that very team. It takes a community to raise a child, so the saying goes. I think the struggle for all parents is to ensure that we bring people into our family folds whom we trust, who share our values and respect our goals for our children. In the booklet, there are questions to assist us in facilitating our teams, and for mapping a plan of action that is child-centred:

1. What makes your child want to communicate and connect with you?
2. What makes him/her sparkle and smile?
3. What creates social connectedness to others?
4. What makes him/her withdraw?
5. When is s/he least likely to communicate?

Our friends in the US are way ahead of us in providing supports and subsidies beyond the ABA model, but they are still struggling in many states. I know my friends in ABA studies are also interested in moving beyond the ABA model, telling their students that "there is more than one way for each child." Thankfully, we are moving beyond a strict paradigm. Many of us really need to take the "behavourism" out of the teaching approaches to describe education and assistance.

Interestingly, those questions that were outlined in the booklet were the questions that I asked myself intuitively, long before we learned that person-centred planning existed. Instead, I resisted and resented pencils scratching on lined paper, carefully marking out graphs typical in ABA programs, and therapists arbitrarily making decisions about what Adam SHOULD be learning according to them, without considering his own path and pace at all. While it does take a "village" as they say to raise a child, let's make sure that the village we bring into our homes and into the lives of our children are ones who don't work contrary to our children and our values.


Blogger The Glasers said...

I do not care for the behaviorist model for autism or education in general. In educating my kids as a homeschooler, I chose a Charlotte Mason style because you focus on reading really great books, interacting with things you are studying, and narrating what you are doing--no standardized tests, no competitions at who is best, no prizes, no rewards. Actually, there is one reward . . . the joy of learning.

I am finding that lone-ranger RDI (no consultant) is working very well as a non-behavioristic way to help my daughter not only be competent in social interactions but enjoy and understand them more. I find that focusing on development and ways of thinking is more respectful that focusing on behaviors (the result of development and thinking).

We are doing an obscure language program for my daughter--really the only thing that has helped clean up her syntactic aphasia--but there are very few SLPs who are knowledgeable in this therapy (the association method). So, rather than take something from the system that would be a poor fit, we do what I know is effective without an SLP.

It would be wonderful if parents had the freedom to pick and choose what they suspect to work best for their unique child and situation. Until that happens, my husband and I are going the lone ranger route.

12:51 PM  
Blogger Estee Klar-Wolfond said...

You are not the only lone rangers out there. We have so many members of TAAProject who are loners as well!! Adam is engaging in an AAC program, which is not supported here in Ontario. But there will be a day that we are all working towards where person-centred planning (the philosophy is important) may allow for the variety of approaches that we as parents determine will suit the needs of our children.

12:56 PM  
Blogger The Glasers said...

I am glad you are out there to help families needing freedom with flexible support, not a one-size fits all straight jacket.

3:31 PM  
Anonymous -Brian- said...

In no way will autistic adults accept a "one size fits all straight jacket".

We are often given that straight jacket by social workers and other professionals who use such ultimatums on us as "Behave yourself!" repeatedly. This only adds more exasperation and more feelings of isolation from others.

Another such attempt is when we are told to act "appropriately". Who decides what is appropriate? We get the answer: When any normal person would do it, it is appropriate. That gets us back to the undefinable word "normal": Who is "normal"? Why should any person be considered "normal" and his/her behaviour be considered "appropriate"?

Recently on CBC radio one, in a discussion on relationships, I was shocked to hear the host tell the listeners not to trust those who do not give you a steady eye look. It sounds as if all autistics, according to this host, should not be trusted, due to their "shifty eyes". How absurd!

That is just one example of how autistic adults are discriminated against because of their behaviour, deemed by these "normals" as being "inappropriate".

Autistic adults are often forced to be "lone rangers" completely on their own behalf, without the help of any SLP, OT, or other professional, not just medical, but legal and financial, as well.

6:43 PM  

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