A lot of people have one day a year they hate and dread above all others; usually it's tied to something like the death of a loved one or a bad breakup. Mine is a little different in that lots of other people acknowledge it as well. Jesus, Mary, Joseph and all the saints, do I hate April 2nd, "World Autism Awareness Day."
On or around April 2nd, World Autism Awareness Day becomes about as inescapable on social media as Christmas is in physical stores in December. Numerous people, often citing their autistic relatives, participate in Autism Speaks' "Light it Up Blue" campaign. And it goes beyond the digital; both the Empire State Building and the Willis Tower quite literally "light it up blue," with Autism Speaks volunteers ringing the New York Stock Exchange's opening bell in 2010. This year alone, Autism Speaks touts celebrity endorsements for the campaign ranging from Bill Nye to Danny Trejo to the Blue Man Group (okay, I can't blame them, that's excellent branding). And all these nice, well-meaning people and institutions, and also the NYSE, are (hopefully) blissfully unaware that they're standing in solidarity with a campaign run by an odious organization that actively harms autistic people.
This comes as a shock to a lot of people because, unfortunately, Autism Speaks is THE name in autism-related advocacy groups. It's understandable, just from hearing the name in combination with their omnipresent PR, why the unfamiliar would assume the group is a force for good. In actuality, however, the group has no autistic board members or leadership; the closest they've come is Look Me in the Eye author John Elder Robison, who resigned from their science advisory board in 2013, disturbed by the group's rhetoric about his fellow autistic people. "I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people," Robison wrote. "We do not like hearing that we are defective or diseased. We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated. We are people."
Indeed, Autism Speaks' mission statement describes autism as an "urgent, global health crisis" and speaks of "a possible cure," which is a combination of ridiculous pseudoscience suggesting autism is somehow acquired through an eternal agent and the same dehumanizing rhetoric Robinson spoke out against. I imagine a lot of this seems like oversensitivity on my part, but Autism Speaks has endorsed much more explicit versions of these same sentiments, as covered extensively in this post: the group commissioned the video "I Am Autism," directed by Academy Award winner Alfonso Cuaron of "Gravity" fame, which compares the disorder to AIDS and cancer and explicitly says it will "make sure your marriage fails." In another video, "Autism Everyday," in which former board member Alison Singer expresses the desire to commit a murder-suicide with her autistic daughter, in front of said daughter. This group is not for autistic people and does not pretend to be. This group is for our "victims."
Even the choice of blue for the campaign derives from condescending, fallacious thinking: the purpose of using blue, by Autism Speaks' admission, is to gender autism. On its page for the campaign, it points out autism "affect[s] four times as many boys as girls." In fact, a growing body of research suggests that girls are underdiagnosed due to gender expectations causing autistic girls' symptoms to manifest differently. In other words, fewer girls are diagnosed with autism in part precisely because groups like Autism Speaks present it as a gendered disorder. There's a certain amount of bitter irony in a nominal awareness campaign centered on increasingly outmoded stereotypes.
When I hear people like this promoting "awareness" of people like me, it doesn't make me feel supported. It makes me feel like a burden or an existential threat, and nothing knocks the wind out of you like knowing you can mark such a feeling on your calendar. I've tried to explain this to individual people, but until I began trying, I didn't understand just how hard it could be. It's tough, explaining, at length, to people who thought they were supporting you that they're promoting ideas that get people like you killed. It's hard because when you're used to being misinterpreted, explaining to someone that they're not actually helping not only hits close to home, it makes you feel like a dick. To some extent, that's why I find myself writing this, in hopes that I can reach as many people as possible and not find myself struggling with the urge to lecture individual Facebook friends this weekend. People who sincerely want to help should look into supporting a group that puts autistic people front and center, such as the Autistic Self-Advocacy Network, or, as I have done, worked to reach out to Autism Speaks' celebrity donors and endorsers regarding the nature of the organization. I can only hope this reaches enough people to make this April 2 a little more bearable for me and those like me. In the meantime, we'll survive as best we can and do our best to educate those willing to listen.