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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

Saturday, December 02, 2006


Unremarkable Autism

Autism: A "Horrible epidemic" for which we must quickly find a cure? Or rather is autism more unremarkable than what we first thought -- a pandemic proliferated by the conflation of circumstance, interpretation and dare I say it, BIG AUTISM BUSINESS, as charities, and autism cottage industries boon throughout North America, all promising to recover and cure the autistic person?

We have known for some time that autism is a modernist construct, the term invented in 1911 by Eugen Bleuler and then adopted by Hans Asperger and Leo Kanner who both observed their first "autistic" clients in their psychotherapy clinics.

Now we have Roy Grinker's Unstrange Minds , which is a anthropological view of autism. I received a copy of the manuscript a couple of weeks ago and am nearly finished it. Grinker introduces the "new" autism phenomenon this way:

"Between 2003 and 2004 the number of grant applications to the National Alliance for Autism Research, the leading private foundation for autism research, doubled. Throught the Internet, people in remote areas of the world read news stories about the epidemic. Media reports consistently refer to autism with phrases like 'hidden epidemic' and the 'mysterious outbreak,' citing the 'exploding number' of autism cases, leading to fears that causal factors such as vaccinations, mercury poisoning, or other environmental exposures (a subject I do not discuss at length in this book) might be contributing to the rise in cases of autism....But is there really more autism, or are we just seeing it more? There are lots of theories around to explain the rise in diagnoses, none of them proven. Some scientists think that the 'increase' is due to more aggressive epidemiological methods that make it easier for researchers to count the right number of cases. Others think that the broadening of diagnostic criteria over the past two decades to include more symptoms, and bigger range of severity of symptoms, has made it easier for physicians and pscychologists to fit their clients into the framework of autism...." (p.9)

Grinker's book is about how culture affects the way we view autism. His book is an interesting study of how cultures around the world view autism and how it affects parents, children and politics.

Recently, The Wall Street Journal published How Many Kids Have Autism? I need not write it again, as Autism Diva has done so nicely here in her post "Nobody's Fool." Although others have taken the time to dissect the numbers and their sources, it was done particularly nicely in this article.

Then, as parents want to exclude "higher functioning" autistic people from the autism "crisis" debate, it is this very group that can be accountable for their numbers that they use in their arguments to proclaim an "epidemic" of autism. They are brazen at including this group in their numbers on the one hand, and then having them and their parents excluded from the autism discussion altogether.

As for the serverity of autism, I've met those who would be classified under such a label. It is not a black and white label either. Recently, Amanda Baggs has been accused by the parents advocating for a cure, or to have the rest of us excluded from participating in the autism discussion, as not really being autistic. You see, if you can communicate at all, despite your disabilities, you aren't autistic according to these folks. It's all quite silly, you see. It's all quite a sensation. As long as fear continues to be promulgated; as long as those who are not affected by autism continue to listen to parents who say autism is a horror, autism will continue to be a "terrible mystery," with dire consequences for our children and autistic adults.

I've met many people on the "spectrum" of autism as a result of The Autism Acceptance Project, and there is something that ties us all together -- that is our humanity. Autistic people are no different than non autistic people. They are no more or less diverse, desirous, aware. You see, the more you look at autism, the more unremarkable it is. It is filled with challenges, yes, as the case can be with any child. It is filled with disability and ability. The worst of it all, though, is the stereotyping, the stigma and potential danger that autistic people face as schools close their doors to our children because of the very so-called "advocacy" that dehumanizes the autistic person, and as parents do not allow autistic adults to participate in discussions about autism. I've heard parents suggest that certain autistic adults "are horrible to look at." I think it is a horror that these very parents suggest that another autistic person, like their very own child, is terrible to look at. I just can't say anymore how disgusting I think that is, because I like to stay positive, and I would like to invite all parents and autistic people into a new discussion about autism and how we want our children and autistic adults to be accepted and included by society-at-large.

So today, as Adam still fights his terrible cough, I found some more unremarkable, lovely, special, autistic children. I thought how wonderful to celebrate them, their differences, the joys. Autism is just another kind of normal. Everything is "normal."

The face of autism

My Autistic Child

This celebration of difference is also featured in the kids movie Happy Feet (Warner Bros.)What a wonderful movie to take all children to as the holidays approach. Maybe a few adults too.


Anonymous Anonymous said...

Diversity.....spectrum.....we just need to keep an open mind. [translation = heart]

11:42 AM  
Anonymous Ms. Clark said...

Thanks, Estee. Very nice reminder of how normal autistic humans are. It's scary to think that people might start putting up signs like, "No dogs or autistics." outside of parks or schools because they've been told how frightening and toxic we are.

3:00 PM  
Blogger laurentius rex said...

Don't you realise Grinker is not morally superior to Kirby.

He is part of the same machine, making his name and establishing a reputation in a field that he has no moral rights to.

He is EXPLOITING us as surely as Simon Baron Cohen with his "pop" science articles for wired is.

Grinker, Autism Speaks, The Dead Dog story, that is all part of Media.

What we are witnessing is not an autism epidemic so much as a media epidemic wherein our right to self determination and indigenous culture is being pissed on by these people who are telling us who and what we are.

It is as Derrida said of Levi Strauss, violence being done to us.

3:32 PM  
Blogger Kristina Chew said...

Hope Adam is getting much better and thanks for the videos! animus---soul, mind, heart, in Latin.

4:19 PM  
Blogger Fore Sam said...

You claim you want to invite all parents to discuss this.
Let's see how long my comment stays here and then I'll comment further if it's not deleted.

6:34 PM  
Blogger laurentius rex said...

Pneuma in Greek or Prana in Sanskrit

Ruach in Hebrew not forgetting Chi of course:)

6:57 PM  
Anonymous Camille said...

Would that be "qi". "Chi" is pronounced "cher" or thereabouts.

I disagree about Grinker, Larry.

2:33 AM  
Blogger Estee Klar-Wolfond said...

KFC -- thanks for pointing the spelling error -- I make them when I am with Adam and he has been on my knee sick the past few days.


I am giving you a chance to speak respectfully here. I highly object to the name of your blog. I object to how you speak to autistic people (I saw how you speak to others, and recently on Michelle Dawson's blog).

If you wish to debate your mercury hypothesis, you are better off debating with a scientist.

If you wish to debate ethics, and how autism is portrayed in the media and on your very own blog, then yes, do it here.

However, the caveat is RESPECT. You do not treat people with it. But if you can begin to do so, and a first step will be to change the name of your blog, then there might be a chance.

I wish to direct you to a quote by Yoda that might be of interest to you:

Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering.

So if you cannot address the ethics by which autism is represented in a respectful manner, yes, expect to be deleted.

You have not once engaged me (or others as I've seen), respectfully.

So perhaps this is...goodbye.

9:25 AM  
Blogger Jerry Grasso said...

I'm glad I found your blog. I'm adding it to my blogroll. If mcewen reads ya, so will I!


2:57 PM  

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