I’ve posted before about why I’m not behind the puzzle symbol for autism. But I want to talk more specifically about why I strongly object to the ideas and methods of the most prominent autism awareness organization, Autism Speaks.
This video from their “About Us” page is revealing.
In the first seconds, we hear the experience of having an autistic grandchild described as “heartbreak” and later as “grieving.” The boy’s family members make it clear that they were proud of who he was before his symptoms manifested fully. But they have nothing positive to say about his worth as an autistic individual, and show no concern for what his experience is.
This is emblematic of the lack of self-advocacy in the autism awareness movement. Coverage focuses on the experience of families, and treats autistic children as if they’ve died or become vegetative. (It doesn’t focus on adult autists, period.) If a positive trait is mentioned in an autist, it has to be some savant quality: precocious piano or art skills in someone non-verbal, for example.
In the video, we see clips of children– almost all boys– stimming and averting their gaze, juxtaposed with clips of neurotypical adults clapping and cheering about their own accomplishments. Toward the end we are granted a few moments of adult (again, almost all male) autists in occupational therapy. But we don’t see the co-reality of independently living autistic women (hi!) or children who are verbal but melt down in social situations, etc., and we don’t talk to autists, or hear from autists, we talk about them. And about their behaviors, not their feelings. It’s like having a women’s rights committee made up only of men. “Be thankful for your neurotypical advocates, because all you do is stim,” is the takeaway, when it should be, “Here is a platform and a voice for autists and families to open a conversation.”
Brief glimpses of the group’s slogans and catchphrases are also telling. We get a brief shot of a person’s back with a tee shirt that says, “Autism will not stop me.” Later, a graphic from a news report shouts, “Autism Epidemic.” This is the type of militant attitude that Autism Speaks takes toward neurodiversity. Autism might as well be neurosyphilis. What do we do with epidemics? We don’t live with them and understand them and love them, we eradicate them, or try. I’m not saying Autism Speaks wants to eradicate autists– just our deviant brains and experiences.
But how can they eradicate when all they are trying to do is “raise awareness”? As they say in the video, awareness and advocacy “go hand in hand.” What they don’t clarify is that when you talk about something, you advocate for your view. Because, language. When your pleas for autism to become a “household name” are coupled with references to an autism “epidemic” and “grieving” for the neurotypical child you’d rather have, a mouth as big as AS’s starts to be heard, and to drown out everything else.
What we need isn’t awareness for its own sake, or awareness so we can “nip it in the bud,” it’s awareness so that we can understand each other. We need the active inclusion of autistic adults in all forms of advocacy, from advertisements to board meetings. We need representations of many of the infinitely various manifestations of autism. We need to spread not just our label, but a respect for neurodiversity and disability rights, to every corner of the globe. (After all, most people know what ebola is, but again, what do we do with epidemics?) If you’re not on board with that, then get the hell out of the way so that people can see and hear those you claim to represent. No amount of money and “awareness” will rectify the damage you are doing to public discourse about the spectrum.
In one of the most offensive moments in this very troubling video, the voiceover informs me that each of us autists costs $2.3 million over a lifetime, for a total of $137 billion (in what time frame and geographical area I have no idea.) Seriously, who made this video and failed to go “Uhhh… let’s not monetize the value of human lives”? Gee, Mr. NT Man, I’m sorry that you find no value in my contribution to society and only see a price tag on my head.
I’m not claiming that everything Autism Speaks is associated with is bad. On my college campus, I once had a conversation with an 18 year old fellow autist and her friends, members of the local AS group, who were letting people throw pies in their faces to raise awareness. We talked about neurodiversity and they said they had never thought of autism as a disease and didn’t want to “cure” it. I wish those students’ attitudes, conviction and sensitivity carried over to the national organization. Until then, I suggest the group change its name to “Autism is Spoken About,” because right now, they do not speak for me.