Autism Speaks is the mega-charity of the autism world. Founded in 2005, it has an annual budget of $60 million, is known for its ubiquitous awareness walks and has a handsome array of celebrity backers. In some quarters of the disability rights movement, however, it has long been reviled for silencing and shaming autistic people.
The organization is criticized for the lack of autistic people on its board of directors and among its senior leadership. Its advertising materials also present autism in the worst possible light. One video portrays autism as a terrifying stalker, saying, “I am autism … I know where you live.” Critics claim it spends hardly any money onactually helping autistic people and that it supports abusive therapies. Worst, its mission calls for a possible cure for autism, which for many autistic people is tantamount to a call for genocide.
Autism Speaks disputes all these characterizations, but well defended by its giant piles of money, the mega-charity is usually able to ignore its critics. However, when best-selling author Steve Silberman recently published a high-profile op-ed in the Los Angeles Times criticizing the group, Autism Speaks responded with a call for unity. Could its willingness to engage suggest that it is on its way to becoming a less divisive member of the disability rights movement?Let's be clear - I am deeply skeptical. In writing this piece, I went to a number of autistic people for comment and quote them in the piece, all of them focusing on similar issues: Center autistic people in senior-leadership, get past this tragedy language, and, as Lydia Brown said, don't just listen to straight white upper class autistics.
That's really what I thought I'd write about. I also got a comment from Shannon Des Roches Rosa, the parent of an autistic teen and senior editor at Thinking Person's Guide to Autism, in order to show that parents' groups can in fact work beautifully with groups run by and for autistic individuals. Because being a parent is complicated and we DO NEED organizations by and for us too, we just can't let those organizations lose sight of bigger issues. Shannon told me:
The Autistic Self-Advocacy Network and other autistic-led orgs are very clear on such community-wide matters: "Nothing About Us Without Us." I don't think there can be unity until AS incorporates autistic leadership, and changes their mission and funding to prioritize autistic-led goals. There's no halfway on anything, for me, until that happens. What I think many people don't understand -- because of AS's dismissal of autisticadvocates as "not like our children" -- is that autistic advocacy incorporates disability understanding and accommodations, and does a better job of prioritizing the needs of autistic people of all ages and their families than AS is doing now. If we got AS's funding and marketing power behind the messages and services autistic people actually need, I think that would naturally create more unity.You might note that this quote isn't in the piece, and that's because journalism happened. I did my due diligence. I called for comment. And then I followed up when, surprisingly, I got one.
The last time I went to Autism Speaks for a comment, I got a call promising one, and then nothing. I wrote this for the New York Times, and then a certain amount of drama broke through. Autism Speaks contacted my editor, denouncing me, claiming they had left me a voice mail, and demanding their own column. I still don't know if they called the wrong number, if spokesperson A was lying to his boss, VP B to cover himself for not getting back to me, or if VP B was also lying. I'd like to believe in human error (wrong number) than lies, but since Spokesperson A had successfully called before and had my email, I'm not sure.
Mostly, Autism Speaks has a reputation for ignoring critics. As I said in the paragraphs above - with their bankroll, they can afford to ignore us peons. When autistic people criticize them, they say that such high-functioning people are "not like 'our' children," and then use that as another opportunity to demonize autism as stalker.
But still, I reached out to Autism Speaks, and I got an official comment. It said, among other things, that lots of autistic people work for AS. I asked to speak with one, and got put in touch with Kerry Magro.
Magro is a motivational speaker, author and the social media coordinator for Autism Speaks. He has autism. He got involved with Autism Speaks through awareness walks in college, received an internship from them and eventually accepted a fulltime job offer. He would be delighted to see a person with autism on the board, but is unstinting with his praise. “Everything I've seen with Autism Speaks,” he said, “is a lot of embracing individuals with autism.”
Then I asked Magro about whether he needed to be cured. His response revealed a pathway forward:
For a long time, when I was a kid, when I was having speech difficulties, when I was having trouble making friends, when I was having a lot of communication delays, I always wanted supports to help me progress. Autism Speaks’ mission is to help in the lives of people who have autism. Cure — in the way I’ve always seen it — is just being able to give supports to people [so that they] can live the best lives possible whether it be physical, occupational, speech therapy, etc. I hope that we are able to put supports in place to help our kids progress.
Notice how Magro isn’t arguing against Autism Speaks’ mission, but he also isn’t using the language of epidemic. If Autism Speaks isn’t going to listen to its critics, maybe it could learn to listen to its own employees.Will it happen? I can't say. But Liz Feld is stepping down as president of Autism Speaks, so there's a moment here for change. It won't be radical change. It won't turn AS into the organization that I wish they were. But it's possible.
And here's my closer.
Every movement has its center and its peripheries. It should come as no surprise that the most privileged elements — white, monied, neurotypical — dominate the center of the autism advocacy movement, or that such do-gooders find it difficult to accept as valid any criticism of their efforts.As a white, relatively monied (in that I have a nice house and a reliable income), neurotypical man ... I think about this all the time, trying to be a useful member on the periphery.