Dear Casey's: Also, autistics speak.


Categories: Autism Personal

While I was out picking up delicious pizza last night, I noticed that our local convenience store (Casey’s General Store) was doing fundraising for Autism Speaks. This makes me unhappy. On the whole, I like existing.

Autism Speaks is a pretty awful entity. First off, they are a classic money grab; the bulk of their money goes into fundraising and expenses, with very little going towards programs that are even nominally intended to actually benefit autistics. However, that’s the good news. Because their programs are by and large directed towards eradicating us, and many of us are unhappy with this. We do not want to be “cured”. We are not necessarily highly enthused about research on ways people could abort fetuses that might turn into autistic children, either.

Autism Speaks has a long history of excluding autistic voices. For a long time, they had no autistic participation whatsoever, and I think they now have a single token autistic involved in their work. They sued a 14-year-old autistic child for making a parody of their website. They refused to hire a woman when they found out she had an autistic child. They actively promote language designed to medicalize autism and present it as a horrible affliction from which people ought to be freed. This leads directly to increased hostility to, and discrimination against, autistic people.

I don’t think this is an accident. Their aggressive anti-autism propaganda benefits from any suffering associated with autism. If austistic people are discriminated against, that means they have bigger numbers to point to for how much worse off autistic people are, so they can make even scarier films about how horrible it must be for us to exist.

If you are looking to have a highly-recognizable charity affiliation, I think you have chosen reasonably well, except that Autism Speaks is starting to have a much worse reputation over time. Under the threat of having the only organization nominally speaking for us telling everyone that we are the horrible monsters that replaced the real children our parents could have loved, autistics have started organizing and educating the people around them, and most of the people I know are now aware that, by and large, autistic people find Autism Speaks a very threatening organization. And that tends to make them work out less well as a reputation booster.

If, on the other hand, you were looking to do something that actually benefitted autistic people, well. You pretty much got that one exactly wrong. I am not aware of a program or organization more hostile to us. If you would like to put some resources towards organizations that are actually interested in the wellbeing of autistics, I would call your attention to the Autistic Self-Advocacy Network (ASAN), an organization mostly run by autistics who would like to be permitted to speak for themselves.

Thank you for your consideration.

(Submitted via contact form, also posted on my blog.)

Comments [archived]

From: Dave Leppik
Date: 2013-04-15 15:53:07 -0500

I hope that in your contact form you also mentioned that you are autistic.

From: seebs
Date: 2013-04-15 17:52:47 -0500

I didn’t say so in so many words, but the use of first-person plural pronouns seemed communicative to me.