so why is autism speaks bad? I'm confused
There are a number of reasons why we feel that Autism Speaks isn’t good for Autistics. I’m going to give you some bullet points, and then link to a couple of resources both from our website and from the community.
There are no Autistics on their board of directors, or currently in any of their major decision making bodies. (While they did have Robison on their Science advisory, he left when they released a pretty bad press release after years of them being unresponsive to his feedback.) An organization that fails to include the people who they are “serving” in meaningful leadership positions is unacceptable. NAACP run by white people wouldn’t be alright; NOW run by men would be unacceptable; and an Autism organization without autistic leadership is not okay.
Their Budget. While they have a high transparency score, they have a VERY low financial score on Charity Navigator, and for good reason. Only 4% of their funding goes towards supporting families via things like service grants. 21% is advertising and 22% is fundraising, and 5% is administrative costs. (44% is research, but we’ll get to that in a minute.) The executive pay- several over $400,000/year- is pretty high for an autism non-profit.
The research doesn’t help living autistics. Very very little of the research Autism Speaks funds actually goes to quality of life. Instead the majority goes towards causation and prevention. As a lot of that research is genetic in nature, prevention means research into selective abortion of fetuses with markers for autism. Not only does this not help autistics of any age, it encourages the idea that it’s better to not exist than to RISK being disabled (and in particular, autistic).
They promote stigma. Remember that “awareness” and advertising budget? A lot of that money goes towards things like Autism Everyday, a video in which a parent talks about wanting to complete a murder suicide with her autistic daughter and deciding against it because she has a “normal” child as well.* They also funded a video called I Am Autism (Transcript) in which a menacing voice claiming to be autism brags about “tearing families apart” at great detail. And remember what I mentioned about Robison resigning from his involvement with them? The final straw for him was an open letter written by Suzanne Wright, one of Autism Speak’s founders, to open a national Autism policy summit (which co-incidentally didn’t involve Autistics) in which Autistics are equated to being missing and being a crisis comparable to needing military intervention. These are just major examples; this tone of horror, tragedy, destruction, and crisis permeates Autism Speaks’ public message. Even in their more positive campaigns, it is an underlying message that being an autistic is not a good thing.
They take money out of local communities. Many people attend walks thinking that the money raised will help support their local autism centers or families. Very little of this money if any comes back to the community it came from.
We at ASAN put out a flyer a few years ago with a short version of this information. It’s slightly out of date, particularly when it comes to the alternate places to donate list, but the points still stand. More recently, we put out a Joint letter with a number of other organizations going into more detail about why we at ASAN as an organization- and our co-signers as well- object to Autism Speaks.
This is Autism Flash blog response from the Autistic Community in response to Suzanne Wright’s Call to Action letter. ASAN didn’t run this, though we are supportive of it.
A lot of people wrote or made video responses to the I Am Autism video. As far as I know, though, there wasn’t an especially organized response. You can still see a lot of them by searching google for “I Am Autism Response.”
Check out boycottautismspeaks, an independent collaboration between autistics and autism positive parents. (They are also on Facebook!)
A number of autistics have written posts talking about why they don’t like or support Autism Speaks. Some might be out of date on some of the details, but still current on the major issues.
Golden Hearted Rose’s is a favorite by the tumblr autistic community.
Autistic Hoya writes very powerful posts, and their posts about Autism Speaks are no exception.
* In Autism Everyday, she also talks about her daughter being non-communicative while her daughter comes up to her multiple times throughout asking if her mommy is okay. -Savannah
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