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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

Sunday, October 23, 2005

 
On the radio program called The Infinite Mind, well-known panelists such as Simon Baron-Cohen, Stephen Shore and others talk about an autistic expression of love -- that parents must reframe their experiences. Instead of a hug, an autistic person might pull hair as an expression of love -- the context must be observed.

Last night at University of Toronto, Dr. Oliver Sacks appeared warm and meticulous, posessing eyes that smiled with a humble defiance that comes with age. In fact, as the evening wore on, I realized that this was THE trait that the actor Robin Williams captured of him brilliantly in the movie Awakenings. Dr. Sacks was articulate yet hesitant in his speech and spoke about "different modes of being." Like the AS people who spoke on The Infinite Mind as well as those that write on aspie.com, he feels that society needs to rid the notions of normal and abnormal. Instead, we must replace this notion with another semantic, and the word different kept popping up.

I write in my book that Adam's ABA therapists pathololgized him. This for me, a mother and an ardent observer of my son, was not only distasteful, but unbearable. How can a good therapist come into a home of a different sort of person, and begin to follow a list of skills and behaviours and suggest that we would want to make that child as they should be? Surely, when Adam was diagnosed, I thought that this indeed was the goal. But as our lives progressed, and progressed with these new people, therapists, consultants, supervisors and government representatives coming and going daily from our house, I began to feel uneasy. The ABA people came in with the promise of making him "functional," and spent little time observing him as a person but more as an aberration.

Luckily I fired all my ABA supervisors and agencies that I tried for Adam within the first four months of his therapy which began at age 20 months. I also pressed my husband to abandon TPAS (government) funding as they mandated us to do a minimum of 30 hours of ABA therapy a week -- an impossible demand of such a young child. It's difficult for me to hear the glee of parents in school hallways these days "we're so relieved we got TPAS funding yesterday..." (The government recently increased the age to receive this funding past the age of 6 and all of a sudden people seem to be getting funding everywhere). I know of parents who have fought court cases for this funding and have lost their homes and have had to move out of the city. The stress that this puts on a family is too high a cost for the return. Certainly, ABA is NOT the only scientifically proven therapy that works in autism. The myth that it is keeps getting regurgitated by so many -- parents use this in the papers, in our first phone calls when Adam was diagnosed. Parents are putting all their stakes on the vapours of this myth, and that's scarry indeed. There are many therapies that work and ABA is the fashionable therapy of the day. Indeed Oliver Sacks also said that about every four years, the hip therapy of the day predominates. Funny how the government wouldn't look at ABA 10 years ago. Anyway, in my view, it has become all too political at a great cost to people with autism.

Once Henry asked the question, "if you believe Adam will always be autistic, why do therapy? Isn't your goal to make him more normal?" I stuggled with this question for a while until I realized that the purpose of therapy was to make Adam a happier person -- to help him understand himself and his world, to increase self-esteem, to learn new skills that would enable all of this, and most importantly, relate to people. I turned to therapies that felt more suitable for Adam -- to work on sharing and relating, to help with skills that would give him a sense of pride so he could continue with them at will. We moved to approaches like RDI and Floortime and just plain old "incidental teaching" if we want to use technical words here (I ascribe to no one therapeutic approach -- but bits and pieces of those techniques that reach a child). When we did, it was like Adam had his own awakening -- he became so happy and related to us in a way he never had before. He enjoyed playing peek-a-boo, sleeping bunny, and other games and giggled all the time. He became extraordinarily affectionate. My mother said it well : "it was like we were alone in the room when we were with him and now it's completely different."

So, after trial and error, some research and plain old instinct, I can say a year and a half later that listening to Oliver Sacks last night was a confirmation of what I came to believe on my own: that we must honour Adam's autism as part of the person he is and we must nurture his obsessions (or strengths) as well as challenge him in areas that will make him feel competent and give him more self-esteem. I believe in challenging at the right time. There was a day when he woudn't be able to play with a certain toy because of motor problems, but when he is ready, it is time -- and then he can play on his own without assistance. This independence is critical in life and to make us feel whole. I don't believe that even people with the most severe of disabilities can't have some semblence of this feeling, no matter what their limitation. Dr. Sacks mentioned we must encourage activities that enable IDENTITY. Certainly we all feel expanded when we engage in creative pursuits, sports, cooking... It is what makes us human and frees us from the heaviness of life and the limitations of SELF.

Dr. Sacks said "autism must be recognized as a different mode of being and must be proud of itself." As a mother, I do still struggle. The outside always wants to pound in, in such negative ways. School is on the horizon with its rigid currciulae, notions of normalcy, standardized testing. The world is not so empathetic, although we are making strides. Adam is an only child with four older half-siblings, two who are now in university. So I view him as an only child in the sense that he doesn't have a sibling in his face -- relating and demanding on a daily basis. I feel the onus is on me to keep the relating going -- from school, to facilitated play groups here in the house -- I feel a need to keep him exposed to other children in the absence of this sibling. When Henry is not home in the evenings, the onus is on me to play with him, to keep relating. It makes me tired some nights and when I am, I often feel guilty or angry that I'm tired. Logically, I know it is the way it is and I cannot be so hard on myself. I don't have complete control and we all do adapt, and Adam will too. And for that matter, my control could also have a negative impact. It's all a fine balance, I know. Then again, down time and just hanging with mom or dad, is just as important. Being with Grandma and Grandpa for a few hours on the weekends is a gift and a memory he will have forever when they are gone.

Life is pain and happiness and they are intrinsically connected. Without one, we couldnt' feel the other.

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