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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, January 12, 2006

 

Autism as a Social Construct

Last summer, I read the story of Hugh Blair -- a son of landowners who was married off and inherited the estate. The only reason we know of him today is because of court records -- his brother sought to take the estate away from Hugh, who today we understand to have been autistic. In it, there are accounts of how he curiously lived his life -- and was described as mentally incapacitated, unable to live on his own. When reading these accounts of nearly two hundred years ago, Hugh, through the eyes of his contemporaries, appears like a caricature. Due to his "mental incapacitation," he was deemed by the courts as unable to look after himself, live freely and keep the estate his mother endowed to him.

So what role does our society play in viewing and thinking about those with autism? We have progressed so far in terms of our knowledge about autism from the days of Leo Kanner and Hans Asperger. Yet the words of history resonate to this day. When autism was first described by these men in 1943, the frame autism was placed in, although yellowing at the edges over 50 years later, remains in the same frame. It appears that the views of society wallow in the safety of history. But if we take apart the vernacular used back then, we can see clearly how history, society and personal bias takes a huge part in how we view autism today.

Let us start with Leo Kanner and pay attention to judgmental language. He described charactersitics of autism as "a marked limitation of spontaneous activity, "stereotyped movements," "a child's inability to to relate to themselves" and called autism "inborn autistic disturbance of affective contact." Hans Asperger describes autism thus: "The autist is only himself and is not an active member of a greater organism which he is influenced by and which he influences constantly....The essential abnormality in autism is a disturbance of the lively relationship with the whole environment." Abeit these are brief examples and perhaps not the best ones in their repertoire, but these descriptions do not describe the abilities of autism or even assume that the life of the autistic person is rich with perception, intelligence, thought or even prefers to be alone and quite content with that -- it assumes that what is not like the rest of us, is abnormal and "tragic." (Read Douglas Biklen, Autism and the Myth of the Person Alone for further reference to this).

This is the main thrust of behaviourist and many other operationalized principles: it is taking a view about autism that does not belong to one who has been diagnosed with the condition of autism, but rather, the rest of us who are not autistic have more authority in terms of labelling, diagnosing, assessing and interpreting autism and autistic behaviour. It assumes that:

1. Autism is a socially inappropriate way of behaving that must be corrected;
2. People with autism do not want to be social so we must teach them social skills or assumes that they want to be social and we must help them be so (do we ever really know the desires of others if not articulated to us?);
3. It accepts the behaviourist's or any other therapist's intepretation of the behaviour as the true meaning of that behaviour.

Simon Baron-Cohen, whose theories I believe are fundamentally wrong (assuming people with autism are mind-blind as he also states "knowing seems beyond most children with autism") is his judgement alone. I've met many a "low-functioning" (hate that term -- it means nothing), person who possess great intellectual ability, emotion and perception of others, despite their outward appearance or way of being. Further, does outward appearance and action reflect thought? Would we classify Stephen Hawking as "low-functioning?" (Biklen refers to Hawking in this context as did I in a paper last year).

It is important that we all understand that judgement and bias is innate in the "scientific" theories about autism -- we must account for the scientist's own personal bias, social influences, judgements and opinions and the history of disability, and how that has influenced our thoughts and opinions. However, we seem to be taking all of these accounts now as today's TRUTH about autism. Parents and educators assume that these resonating words, unworthy as they are, are absolute truths. Parent's invest dollars in therapies that claim to be "scientifically proven," when they are not. I call these vapours -- and we stake children's lives upon them?

How do we evaluate success? What frame do we put that in as another absolute? How do we even evaluate progress in therapy for that matter? All this therapy, 40, 50 hours a week, and yet I've not yet met one person who is no longer "autistic." There is no proof. Is the goal of becoming "indistinguishable from one's peers," an honourable goal? Is it in the best interest of the child? Making one "indistinguisable" can be translated into "acceptable." And what does that say about us and how we view genetic diversity?

I will be writing more...I have to go pick up Adam from nursery school now...

3 Comments:

Blogger SquareGirl said...

Great post.

12:41 AM  
Blogger Christine said...

I've just discovered your blog and will read a bit more as I have time. So much of what you write resonates with me. In particular, this passage: "Any strategy for autism must honour the autism as part of the child, not attempt to conquer, heal or cure it. To do so is to consider autism, and then your own child, the enemy. And I believe a child can feel that." I have printed that out and will put it in a place where I can read it when I need to. Thanks.

8:34 AM  
Blogger MothersVox said...

I'm with you on the mind-blindness of Baron-Cohen. Seems to be a pot and kettle problem, doesn't it?

Really nice post. So glad to have found you! Come vist over at Autism's Edges.

6:32 PM  

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