"Quick! Turn on NBC," my mom instructed over the phone. "They're talking about Autism on the Today show." Since the last time an 8:30am phone call started with "Quick! Turn on the TV," the twin towers were coming down, I had remote in hand before I heard "Today show" and "autism." I didn't realize it until later, but today is Autism Awareness Day, and 5 years since Autism Speaks was launched.
Autism Speaks is a somewhat controversial organization in the autism community. I have not researched this much, but as I understand it, there are a few reasons:
- Autism Speaks talks a lot about finding a "cure." People with autism don't think of themselves as diseased, and thus, are not looking for a cure.
- The puzzle pieces on their logo imply that somehow people with autism are missing something, or are a puzzle needing to be solved.
- Until recently, Autism Speaks had very little representation in their leadership by adults with autism.
- The organization focuses largely on children and ignores the issues of adults with autism.
These points are valid, and I don't set out here to defend Autism Speaks. I do think Autism Speaks has given many in this country an awareness of autism they would not otherwise have. As a parent of a child with autism, I do long, if not for a cure, at least for understanding. And I like the puzzle analogy. I don't think of Moe as missing anything. I believe our worlds are mutually puzzling, but something that we can piece together as a team, much like my mom, brother and I would sit around a bridge table putting together jigsaw puzzles. Only this time, the puzzle is about a million pieces and we've lost the box top with the picture of what it is supposed to look like. But we're starting with the edges, and then take it from there.
To watch the clip from the Today show, click here.
Beautiful Jen.
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