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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

Wednesday, September 21, 2005

Still feeling terrible. Henry off early again and luckly my mother will help get Adam ready for school.

In his first week, Adam wasn't as social as he was at Yes I CAN!. But he was there for only two mornings a week and now he is at Play and Lean for five. He became very "social" at the other school, which was mainly comprised of girls, but interestingly, he began to lead another little autistic boy named M. M was non verbal and very disconnected, but when I watched him, had exceptional skills, like drawing. When I saw M I commented on how much I loved his drawing and I know he heard me. When I said it, his therapist, who shadowed him at the school jumped in and said, "yeah look at this....M, draw a triangle." Her tone was patronizing. Sure enough, M complied and drew the triangle and then went right back to his own drawing.

Was this an ABA therapist's version of success -- the imitation of the triangle? The fact that he could comply with her lame command? In my view, his success was his love of drawing and the fact that when I commented on it, he did it more. Isn't self-motivation and will the point? This is only one of my examples, and there will be more, of the failure of behavioural teaching with autism. M is smart enough to know he has to listen to his teacher. But his true abilities are being ignored by his behavioural therapists.

When M couldn't talk for himself, he began to take Adam's lead. Adam was quite adept at winning the affections of his teachers with his own affection. M would take Adam's hand and Adam would lead him. They sat beside each other. Willingly. Did they have some innate understanding of one another?

Researcher Simon Baron-Cohen lead the research on mind-blindness in autism. What this means is that it is difficult for autistic people to understand that other people possess different thoughts. Some autistic people take many years before they come to this realization. Often, his theories get over-simplifed and people say that autistics don't recognize emotion. But they do. They can recognize it in pictures, but they may not be able to read complex social cues in real time. In fact, Adam can seem to empathize and where researchers such as Baron-Cohen say autists cannot. If Adam sees another child crying, he will go to that child and play alongside him or give him something to play with. It's all non-verbal but communication can be without words. If Adam sees me crying, he doesn't come up to soothe me, but he seems to pick up on my emotions. If I am distressed, he may become distressed. I wonder if he feels I am distressed at him, or if he takes on my emotions as if I am an extension of him. But the empathy he has shared with his peers is distinctive from the mirroring of my emotions.

Perhaps some people might say that Adam isn't autistic. Adam was diagnosed with autism, by three doctors, at nineteen months of age. He wasn't engaged, he involved himself in repetitive behaviours, he couldn't engage in typical or pretend play and he was obsessed with letters, numbers and was hyperlexic by the age of eleven months. At three, he can read. Some diagnosed him with moderate autism and others higher functioning autism. At the end of the day, the nuances of diagnosis don't mean a thing. Autism gave me a frame of reference from which to learn about Adam, and now I find myself having to view him as a unique being, with a learning style that is all his own, that may share some universal qualities with other categorized neurological phenomenon like ADHD, giftedness, Aspergers and even Parkinson's disease.

I watched Oliver Sack's movie version of his book, Awakenings, last night again. The movie is marvelous-- suggesting the human behind the being, behind the catatonic bodies that otherwise appear unresponsive and lifeless. I see so many autistic children. I've attended a year of conferences and visited many schools. When Adam was diagnosed, I wanted to learn everything I could. I started with ABA, with agencies here in Toronto, behavioural analysts from the US (I would fly them in), and fired them all. I attended all of Gutstein's RDI seminars and even took Adam to his office in Houston. I tried and dumped all the diets that didn't work. Vitamins too. Adam's success began when I began to have faith in him and my decisions for him. The turning point for me was when I was about to fly in Dr. Jim Partington. The behavioural analyst I was using, J. P., kept insisting I bring him to see Adam. She used to come into my home with lists from the Hawaiian Development Profile to see what Adam should be doing and based his teaching on that. She viewed Adam as a pathology. Every behaviour went under a microscope and had to be "extinguished." But there was never ever empathy, any view that he was exceptional in some way and he was spoken to in such a contrived tone and presented with external reinforcements like he was an animal. So, when Dr. Partington said to me "we are only teaching your child how to respond," I held by breath and wondered, is it? I am not just teaching Adam how to respond. I am teaching him how to understand, how to do things, develop a sense of self, be able to understand his needs, desires, limitations and much more. Adam didn't need their approach. The turning point was RDI for us, but it still wasn't the end. Gutstein would have had me delay entering Adam into school and thank God I didn't listen because Adam craved social interaction, even if he didn't know how to interact. Gutstein would have had me keep him at home until he mastered Stage Three of his protocol. Yet, Adam learned with help, with RDI at home, and with exposure to school, with teaching him how to share, to play. If we followed RDI to a T, Adam wouldn't be where he is today, either. This was my mapped journey to understanding autism. I still wonder if any of these therapies are really necessary at all. I sometimes think that just good teaching and an understanding of the child and of autism, is essential to a person's success.

It was the combination of our intuition, the therapies that made sense, like RDI, Floortime, teaching skills to increase Adam's sense of competency and self-worth so that he felt confident in knowing HOW to play so that he could do so with his peers.

And so, Adam just went to school again today while I am stuck in bed. The process I have just described isn't easy. What I didn't understand and am also just learning is how long it takes for him. We parents want instant results. We want a CURE, a PILL, anything to bring our children back. I find the emotions complex. My husband said to me once, when I was arguing about semantics, "Isn't that what you're trying to do, Estee... aren't you trying to make Adam more like his peers?" I couldn't say yes or no. I couldn't imagine Adam any other way than what he is. I help him because he has to be taught like any child with a learning difference. I want him to understand, to communicate, to be able to play with his peers because he wants to. I want to give him the tools he needs so that he can do the things he wants to do. I can see he wants to. We are giving him the tools to put the steam behind his motives. The heartbreaking part for me is if he had the motivation but couldn't follow through, if he wanted friends, but didn't have them because he looked different or didn't know how to interact. If I fear anything, it is that.

I hope I am not a parent who is trying to change her child into someone I believe he should be. I am just trying to understand who he is, what he wants and hopefully, provide the teaching he needs so that he can do what he wants to do in life. It is not so simple to sit back and think this -- I struggle to understand the complexities of autism and the mind -- or to at least appreciate them. I am not a scientist, but I try to read a lot of their work.

I found a wonderful book, by the way. I don't recommend a lot of books unless I find one that really sums up a lot of works in a useful way. Henry actually found it: "You're Going to Love This Kid:" Teaching Students with Autism in the Classroom by Paula Kluth. Good for parents and for teachers.


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