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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

Tuesday, October 25, 2005

 
I talked earlier about the quest for the cure -- that Holy Grail if each and every disease and disorder (and I think we are creating more of them than ever).

Dr. Sacks spoke about the Deaf and the Blind. When he asked people who adapted -- adapted their brains, their senses after a period of having hearing or sight and then losing it, most of them claimed that they would not want to be cured. They stated that they would not know how to cope going back after this period.

On the radio program that I keep referring to, The Infinite Mind, AS panelists said they did not want to be cured -- that they didn't feel "broken." They felt that they were better off "than the neurotypicals."

I had this discussion with NAAR - The National Alliance for Autism Research -- as I was the sponsorship chair this past year. The word cure is part of their marketing and their raison d'etre. The money gets dispersed to prominent researchers around the world to study autism. In my view, it is a greater understanding of autism that is enabling us to provide better therapies and making us better parents in dealing with autistic children. I believe in the research, but I'm not sure about the cure. Yet, I know there are some families who desperately want to find a cure. I asked NAAR, in honour of autistic people who are offended by the semantics of cure, disability, abnormal, erradicate autism, to be careful of those words and to exchange them for difference.

In my strong opinions about not abiding by one type of therapy, draconian approaches in some ABA programs, poor teachers and agencies who claim to be the experts in autism, and basically, those aiming to finanically benefit from the plight of others, I am aware I run the risk of certain people being wary of me.

Like an autistic person, I feel misunderstood. Shouldn't we be asking the question about what is may mean if we find a cure for autism?? Should we not leave the decision to cure autism to those who are autistic? And if we do have cures, which part of autism will it address -- there are so many areas of co-morbid disorders in some people autism -- anxiety, self-injurous behaviours, and many more. Which parts can be addressed with "a cure?" If we find a cure, what aspects of autism -- the gifted parts -- can we maintain? Autistic people claim that autism is part of their personalities. Are we stripping away their being by taking away their autism? Are we saying that they, as autistic people, are not vital and important? Are we suggesting that they are....broken? By making people the same, are we therefore not running the risk of homogenizing society?

These are questions that we must ask ourselves now. We may be 50 years from some sort of "cure" and in the meantime, we should be debating this bioethical issue.

I hope I can make a dent in furthering awareness about autism. It will be autistic people who will ultimately have to keep advocating for themselves as they will have the strongest voice, and I'm so glad for their website, aspie.com, and the many books that are written by them including Donna Williams, Dawn Prince-Hughes, Stephen Shore, among the many others.

I attended a school meeting today. One father mentioned that he never understood the culture of difference until he had a son with an issue. I am learning that we "normal" people are closed to a wonderous world. There are cultures of different kinds of people out there that are truly fascinating and have every right to the same education and places we do. Deaf people have their own graceful dynamic language, autistic people curiously migrate to one another. There is a world out there that is bigger than we are.

When I was born, my mother used to tell me the story how she counted all my fingers and toes was grateful that I came out "normal." I think about that today, and consider how absurd a thought that was, now that I have a son with autism. We must ask ourselves what is normal? Normal seems to be one of those mytholgoical vapours that have been passed down -- normal seems to be anything that does not act differently in any way than a neurotypical person. But considering how vast the population is of people who are not NT, perhaps we must reframe our way of thinking.

And so I come to autism as a social construct. We create difference and inequality in society by how we provide, or do not provide supports. Paula Kluth in her book about inclusive education for autistic children You're Gonna Love this Kid states:

"Many people with autism have experienced difficulties due to societal and cultural ideas of how people should look, interact, move and behave. Although most people with autism will tell you that "it" is real, that they do experience things in different ways, that their bodies are uncooperative, or that they have sensory or communication problems, it might also be suggested that autism is in some ways exacerbated by an inflexible society. That is, autism is a social construction; it is a phenomenon that is created and recreated through culture, interaction and social circumstances. For instance, people may feel more or less disabled on any given day based on whether appropriate supports are provided for them or whether they are expected to communicate in a conventional way."

Jonathan McNabb, she writes, suggested that neurotypical individuals (people without autism), stop assuming that difference means deviance and start understanding the autistic experience from those who live with it. Consider a passage written by people with autism where they imagine a world where autism is the norm and being typical is a problem:

"Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity. Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone. NTs are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviourally rigid and frequenly insist on the performance of dysfunctional, destructive and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared with persons on the autistic spectrum. NT is believed to be genetic in origin. Autopsies have shown the brain of the NT is typically smaller than that of an autistic individual and may have overdeveloped areas related to social behaviour."

Bravo.

Researcher Uta Frith also notes how mental disorders "are largely defined by the social context of their time." More children now than ever are being diagnosed with autism. Is the result of nature, the environment or new diagnostic criteria (The DSM IV) that came out in 1993? Schools lack the resources to truly understand and service the autistic child. Emergent curriculum is extremely helpful, but most schools use the canned curriculum. Integrated schools with Emergent Curriculum could help foster in a broad sense, an equitable and democratic society, while addressing the specific learning needs of each child (the Indpendent Educational Plan). I am dreading the challenge of finding the ideal school for Adam and wonder if I should open my own. Did you know that most gifted children are learning disabled? Food for thought, dear reader.

I am waiting for Adam to write words, now that he is writing letters. He has already spelled words with his magnetic letters. As a mother with a child with autism, I hold the same hopes and dreams as I would for any other child. I hope he will be able to recount these days for me (most autistic people have incredible memories because the same neural pruning that occurs in other children at 18 months of age doesn't happen -- many autistic people recount their own births, which I find fascinated [see Dawn Prince Hughes for reference on that]).One mother wrote a book of her interpretations of her son's behaviour and later, the autistic child was able to write why he behaved the way he did and recount his perspective.

Most of all, as a parents with children with autism, we can never lose faith and optimism. Yes, in reality there are worrisome days (what parent doesn't have them?), but something tells me to go out dancing and be happy. I have a beautiful son.

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