Thursday, August 14, 2008

Letter to the Autism Society of Canada

I just sent this e-mail to the executive director for the Autism Society of Canada.

"I am a 19 year old diagnosed with PDD NOS. I live in Saskatchewan.
Recently I found the
National Autistic Society (UK) website and I cried. Why is the Autism Society of Canada so different from them? Last year, they launched a campaign called I Exist, about the issues of autistic adults. They really care about us, and are taking measures to help us. While the Autism Society of Canada mostly only mentions us to say how our lives are doomed because we haven't had early ABA. Your organization says 90% of autistic adults are institutionalized - if that's true, why aren't you helping us? Why are you not trying to get better lives for us, the support we need to live in our homes? Why is it that you're only helping children?
Even if you only care about your children, remember that the best estimates of effectiveness of ABA is 47% cured. That still leaves 53% of autistics who will need some kind of assistance throughout our lives. What are you doing to make sure the kids who aren't cured by ABA still get to have good lives? If you help us older autistics now, those kids won't have to struggle like we do.
I'm 19 and even though I'm very intelligent and can write well, I can't live independently. I have serious organizational problems - my bedroom, which I was solely responsible for keeping clean, got so messy I had to sleep on the couch and huge bugs were living in my room. I tried hard to keep it clean, but I just couldn't. On my own, my entire home would get like that. There are adult autistics who have had their homes condemned, and ended up homeless because they can't keep things clean. And no one would help them. My parents are willing to look after me, but what will happen when they die?"

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