The organization Autism Speaks, self-described as “the world’s leading autism science and advocacy organization,” began using the hashtag #AutismSpeaks10 to celebrate its 10th anniversary. Since then, the conversations have gone straight to hell, with autistic people loudly mocking it from all corners of Twitter.
Speaking as an autistic person, now seems like a good time to explain why Autism Speaks is an abhorrent organization, which I hope gets struck by all the 10 plagues of Egypt.
You see, disability advocates have a motto: “Nothing About Us Without Us.” That motto is meant to express the idea that the disabled and mentally ill should have some say in their own care. Autism Speaks does not do this. There are no autistic members on their board. There used to be one autistic person in a token role on an external, ancillary board, John Elder Robison, author of the book “Look Me in the Eye.”
He resigned — with his letter of resignation containing such statements as, “The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community.” Not a glowing endorsement by any means.
Additionally, he said that “Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”
Indeed, it has engaged in work advocating the debunked vaccines/autism “link” as recently as 2009 and helped to block an amendment to the congressional “Autism CARES” act that would have helped increase autistic representation in autistic advocacy and increased aid for autistic adults.
It also lends its support to the Judge Rotenberg Center, an organization that routinely abuses its autistic charges with hideous methods that include electric shocks and whose procedures have been defined as torture by the United Nations.
Its “advocacy” is even more laughable, with an emphasis on how “lost” autistic people are to the world and how much of a burden they are on their parents. In fact, it actually produced a video with Alfonso Cuarón with autism portrayed as a Grim Reaper-esque bogeyman who talks about how having an autistic child will destroy your marriage and cripple your social life.
It also produced another short called “Autism Everyday,” which included one of the former board members talking about considering a murder-suicide of her autistic child by driving off a bridge — while said autistic child was in the room with her.
Hell, their alliance with Google to chronicle the genomes of autistic people takes this to full-blown, creepy, “Gattaca”w-level eugenics.
It’s even in its mission statement: “We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. … It is our firm belief that, working together, we will find the missing pieces of the puzzle.”
In other words, we autistic people are diseased, not different, and, if possible, should be changed. In an ideal world, autistic people would not exist.
Unfortunately, most people and businesses who wish to donate to causes to help autistic people end up supporting Autism Speaks. It’s cultivated partnerships with everyone from Toys”R”Us to Sprouts, and the Autism Awareness ribbons you see on cars are made by Autism Speaks.
But, there are several organizations that actually do help autistic people, such as the Autistic Self Advocacy Network, the Autism National Committee and the Autism Network Internation. If Autism Speaks’ corporate partners are actually interested in advocacy on behalf of autistic people, they should shift their sponsorship toward one of these other organizations.
The organization that speaks the loudest about autistic people should not be one that loathes their very existence, and it’s time we made a pushback that says as much.
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Tom Johnson is a film & television studies junior. Follow him on Twitter.
