This is not support

There’s a lot of noise being made about Autism Speaks right now, and as usual I’m a little late to the party. I don’t follow them closely so I tend to get my information second hand, and it takes me a while for my thoughts to reach a point where I can put them into words. Especially when it’s about a thing that is provoking a strong emotional response.

Like this thing here.

This. Is. Awful. It’s fear-mongering. It’s really hurtful to autistic people (many of whom have already spoken on the matter).

Are there people and families out there like the ones they are describing? Yes, of course there are.

Do they need help? Yes, very much so.

Do I think we need to do more? Definitely.

Is that the only face of autism? Gods, no.

Is it fair or accurate to take this one segment of an incredibly broad and diverse group and claim “This is autism”? Not even a tiny little bit.

Comparing us to people going missing or falling gravely ill is fear mongering. It’s mean. It hurts.

Saying that we make our parents ill is awful.

And these children they are talking about – many of them will read those words and believe them. They will read that they are missing or gravely ill, that they make their parents ill, that they are a burden.* Is this the message we want to send? Does Autism Speaks even understand, or care, about what they are doing? About the message they are sending and the people who will receive it? This is discrimination, demonization, oppression, and it is coming from the very people who would presume to speak for us.

They’re going to DC to talk about autism, and last I heard have yet to invite a single autistic person to speak. They claim to speak for autism, but how can they do that when there is not a single autistic person in their organization? As a general rule, organizations get to speak for a group only when they are comprised entirely (or almost entirely) of the people in that group. It should be shocking to think of an advocacy group made up of a bunch of people not in the group, yet there are huge numbers of people that support Autism Speaks.

Now, once upon a time a bunch of people complained, loudly, at this lack of autistic representation. Autism Speaks did eventually respond by taking on one, and only one, autistic person and sticking him in a committee. Yeah, a committee. The token autistic. They then proceeded to ignore him. Yesterday Mr. Robison resigned in disgust, finally realizing that despite the fact that their tagline is “it’s time to listen” they, themselves, do not listen. They have had years and years to learn to listen, and have, with their most recent “call to action” proven that they have not changed a bit.

Their history of fear mongering and demonization continues into the present and it IS NOT OK.

I support helping people on the autism spectrum. I support therapies and assistance and providing us tools to be able to learn and communicate and become independent – whatever that means for any given individual.

I do not support Autism Speaks, and I feel the need to say that publicly. What they are doing is not ok. They need to stop. They need to listen. They need to learn.

Sadly, at this point I doubt they ever will.

*When a child walks up to their mother and says “Mom, do I make you ill?” because of what a “support” group said, something is seriously wrong.

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One response to “This is not support

  1. Pingback: The Responsibility of Representation | Walkin' on the edge