When I was in high school, I was talking to a classmate about autism. I said my sister had it and was trying to cobble together an explanation of autism, even though I had little understanding of it. “We should do an autism fundraiser!” she said. I said, “Well, there’s an organization we could raise money for, Autism Speaks.” In a flurry of excitement, we ran all around the school that day, getting permission from administrators and teachers to host a Walk A Thon on our campus.
Though Caley was the inspiration for the fundraiser, I never asked her opinion about it, assuming she’d be all in favor of an organization devoted to helping her, nor did I involve her in it. Ultimately, between my fellow student and me (she got the project rolling and I took care of the day-of planning) we actually pulled off our plan, a minor miracle in of itself, and raised over $500 to donate to Autism Speaks, much to our mutual, extremely pleasant surprise.
Now, fast forward a year. I was hanging out on Facebook, like most college kids (and, these days, adults), do, chatting with a friend I hadn’t seen in years. In conversation, he mentioned to me that he was later diagnosed as being on the autism spectrum. I, still proud of my past accomplishment, excitedly messaged him that I’d raised money for Autism Speaks. I don’t remember his exact response, but it was something along the lines of him saying, “I really wish you wouldn’t have.”
I don’t remember what that moment was like, but I’m sure it was one of shock. Why would an autistic person not want me to raise money for an organization devoted to helping them? I questioned him, trying to get to the bottom of this paradox. And he told me. He told me how Autism Speaks didn’t actually have any autistic people on its board, and how Autism Speaks didn’t speak for autistic people. Their agenda, in fact, was quite the opposite of that of most autistic people, he said.
I’m going to be honest. I didn’t believe him at first. So I did what anyone in my shoes would do – I turned to Google. And there waiting for me, where I had never thought to look because of COURSE an organization focused around autistic people would have the same goals as them, was article after article, post after post, of damning proof. You can do the same search yourself right now – in the years that have passed, more and more articles have joined the ones that convinced me.
And finally, I turned to the person whose opinion on the matter was the most important in the world to me. I turned to Caley. I asked, “Caley, what do you think about Autism Speaks?”
This video was her response. When you watch it, imagine her or the autistic person you know watching it. Imagine their perspective. Imagine how Caley felt when, as she told me she did, she Googled autism and divorce as a child after our parents divorced, looking for advice on how to help her cope with the divorce as an autistic person, and instead found this. https://www.youtube.com/watch?v=8mycxSJ3-_Q
She sobbed for hours, having been told that she was the source of all our parent’s woes – including the very divorce she’d been seeking help for.
This backlash against this video, blessedly, was huge, to the point that it inspired parodies by the autistic community (https://www.youtube.com/watch?v=yU2paLv1MGE) and outrage from many allies. Ultimately, Autism Speaks withdrew the advertisement. They never, however, publicly apologized.
And it doesn’t end here. The list of the hurtful and harmful things Autism Speaks has done just goes on and on:
- They supported the Judge Rotenberg Center, a place where the electric shock “therapy” for its autistic students (read: torture) is so bad that the United Nations called for an investigation. http://www.autistichoya.com/2013/11/an-unholy-alliance-autism-speaks-and.html
- They have no autistic people on their board, and even when they had an autistic person briefly working alongside them, Autism Speaks leaders did not listen to his words, and as a result he resigned. How can they speak for autistic people when they don’t even listen to their voices?
- They only give 4% of their funds to services for autistic people, and a mere 1% of their money goes to research benefiting autistic adults. To give perspective, 5% of their funds go towards salaries and administrative costs. As a result, many autistic people refer to them as “Autism $peaks”. https://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf
- They intimidated a 14 year old autistic girl who had dared to make a parody site about them (NTSpeak). http://autism.about.com/b/2008/01/22/when-is-a-humorous-site-not-so-funny-autism-speaks-has-its-say.htm
- A lot of their funding for research goes towards prenatal autism testing. This is research to take us down a road of eliminating autism, not even for those of you who are pro-cure, for the people who are here, but simply through abortion (as has already happened with Down’s syndrome). Autistic people see this as the road to eugenics, and I’d have to agree. https://www.youtube.com/watch?v=ez936r2F35U
- They vilify and demonize autism and autistic people in their campaigns. The more recent instance of that was in the “Call to Action” that their leader, Suzanne Wright, put out, in which she compares autistic children to having been kidnapped, characterizes them basically as vegetables and their families as not living. http://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle
There’s more where that came from - enough to fill an entire website devoted to bringing to light these many wrongs (http://boycottautismspeaks.com/why-boycott-1.html).
As you can imagine, no, Caley does not support Autism Speaks.
If you’re reading this in shock, know that I had the same reaction when I first learned. It had been inconceivable to me that an organization’s goals could be so very opposite of those they claimed to represent. Once I realized the reality, however, I could no longer support them, and was horrified that I’d donated money to them in the first place.
And, that, is why I called this post “I, too.” Because I am not the only one who had this experience. We all have these stories, which start off with initial support (and even fundraising), followed by shock and disbelief, then a battle to square the organization you thought you knew and that which exists, and ultimately, a renouncement of the organization. And I know some of you reading are penning your stories at this very moment, having learned for the first time that Autism Speaks does not speak for autistic people. To those of you who fall into that category, I’m sorry. Yes, I wrote this to educate you, but particularly for those of you who, like me, were active fundraisers, to have heard that the very act that we intended to help the autistic people we care about actually, in fact, hurts them – well, it can be hard news to take.
The good news is, you’re not alone. Even the most respected voices in the autism community have been there, like John Elder Robison, author of Look Me in the Eye, and Jess at Diary of a Mom. The better news is, just because Autism Speaks is not a good organization to support, that doesn’t mean you can support autism organizations anymore. There are some wonderful pro-autistic people organizations out there, like the Autistic Self Advocacy Network (http://autisticadvocacy.org/), the Golden Hat Foundation (http://www.goldenhatfoundation.org/), and many, many more.
I asked Caley what she’d want people reading this to do with this newfound knowledge of the harm Autism Speaks causes autistic people. She had this to say:
“It would be really appreciated if you helped spread the news, so less people had to go through supporting Autism Speaks and then later learning about what they do. And also, obviously, if you support them, PLEASE stop.”
Now you’ve heard her. You’ve heard the autistic community. And you’ve heard me, a person who was once sitting in the same position as many of you are now. Autism Speaks may not speak for autistic people, but autistic people are speaking for themselves loud and clear. Will you listen?