What is the Problem with the Autism Speaks Summit – A Parent’s Words

Sometimes we autistic people get a lot of criticism when we comment about Autism Speaks. We’re told, “But you’re not a parent, you don’t understand.” And sometimes that criticism is valid – although not nearly as often as the criticism is made (for one, it ignores the people who are both autistic and parents of an autistic). But regardless, most of us do value parent allies who advocate for their children strongly while listening to our point of view.

So, it’s always refreshing when someone speaks clearly from the parent perspective about what is wrong with Autism Speaks’ summit – this time, criticizing the press release and rhetoric (not the only problem with the organization or event by any means, but a very valid criticism).

At “A Diary of a Mom,” the writer writes:

Because demonizing autism dehumanizes my child. Period. Because while shock and awe might raise money, they compromise my child’s safety, they tear away at her dignity, they separate her from the rest of us. “And what of older children and adults?” I asked Mark at the time. At six, I knew that my daughter wouldn’t see that video, but what about those who were old enough to watch it? What about Autistic teens who were so damned vulnerable — to bullying, to depression, to suicide. What about them? Did anyone think of what it would feel like to hear that if you haven’t already, you will destroy your parents’ marriage, bankrupt your family, make it impossible for your parents and siblings to do anything at all without pain and embarrassment? How would it feel to an already-struggling kid to hear that THEY are the cause of desperation, loneliness and fear?

Powerful. It’s even more powerful coming from someone who was part of Autism Speaks.

So go read it yourself.

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