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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, March 21, 2007

 

Two Wrights Make a Big Wrong





If you caught Larry King Live tonight, you’ll be battoning down the hatches: watch out, beware, autism is a big big scare. If you believe in fairy tales and the big bad witch, autism is going to come and take your precious sons.

There is was again, a bumbling Bill Cosby stumbling over his words, “a point that was missed is that there is no eye contact,” he explained, “like they’re not even in the room.”

Toni Braxton shed her tears for her five year old son, the same age as my Adam. “Autism Speaks reached out to me,” she said. “I’m so grateful that they did.” Honey, don’t you know that Autism Speaks is reaching out to every glitterati they know who has an autistic member of the family? Don’t you know that you mean big profile and bucks for them? It sounds like Toni needs some real support. Her son is truly gorgeous, smiling in his picture.

And hey, weren't all the kids smiling, by the way -- these tragic, pitiful examples of humanity stolen by autism? Please.

And where were these wonderful kids? Where were the autistic adults? Hmm. Isn't it curious that Autism Speaks speaks without autistic people present?

And then there were those increased “incidence” figures again. That epidemic rise in autism numbers that even the CDC had to explain that the incidence of autism hasn’t increased.

And then there was that 40-60 hour a week “prescription” for our kids – that this is the only way to beat the autism out of the child. No wonder they are crying. Who wants to live like that? No child needs this kind of "intervention." It's not proven and it's torture.

And yet, any progress that an autistic child displays is BECAUSE, they wish to claim, because of their interventions without acknowledging that kids develop, all kids develop, even autistic kids develop, no matter what.

Tailored programs, loving programs is what we need -- a humane understanding of autism as part of a person. Our kids require assistance, for sure, but they also need to be appreciated as autistic people. Our kids are not possessed. Autistic kids display eye contact at times, and sometimes they cannot because it is painful, not because “they are not even there.” They certainly have empathy and plenty of it. Adam may not come and say "mommy what's wrong," but he sure knows when something's wrong. Just because he doesn't give me the typical response, does not mean that I assume he has no empathy! The day he tells me, or types it out and he may reveal more than I ever imagined about his ability to perceive and understand many things.

Please stop demonizing autistic people. They are real people. When we went to the bookstore the other day, and Adam wanted to hop over to a set of books, two women stopped and stared and whispered “autism,” like it was a dirty word. Is this what Adam has to look forward by the continued work of Autism Speaks? Does Adam get to look forward to a world that thinks he is not there, that they can say or do things because they think he doesn’t know and understand? Does he really deserve the poor quality of services he will end up receiving because of such horrible stereotypes? This is what selling autism does to autistic people. It destroys not "the autism," but the very person they believe isn't quite human, or not "with" us. It destroys the human spirit.

It’s time to end the hysteria and begin the work. It’s harder to accommodate than to kill autism or shall we say, the autistic person.

Autism Speaks does not speak for us.

You can also listen to a podcast where I raise the considerations in how we represent autism on Autism Podcast.

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4 Comments:

Blogger Autism Reality NB said...

Parents and advocates who talk openly and honestly about autism and what it means for ALL autistic persons and their families have already begun the work.

You are welcome to join the effort whenever you feel up to it.

1:23 PM  
Blogger Estee Klar-Wolfond said...

Thanks, Harold. We are doing work that wants to be open (there were things people said that we can all identify with), however, I feel so terrible for Adam to hear the way he is referenced "like he's not even in the room." A look back at how this relates to how people with disabilities have been unfairly treated, and I can't imagine any parent would want this for their children. We can state the challenges without stereotypes and generating fear.

1:41 PM  
Blogger mcewen said...

Whilst I'd like to climb on my soapbox and witter about the "Theory of Mind", my own personal bug bear, you express some of my concerns so much better than I would.
Best wishes

2:39 PM  
Blogger Mom Embracing Autism said...

I was furious after watching a clip of Suzanne Wright's segment of this interview on the internet a couple days ago. I saw the entire show last night (3/25) I agree with you regarding their treatment of celebrities. Autism Speaks should be ashamed of how they are parading them around. What a bunch of hysteria!

11:19 PM  

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