For the past few days, I’ve been working my way through In a Different Key, a new book about the history of autism. There are many things wrong with In a Different Key. The Thinking Person’s Guide to Autism has been livetweeting a read-through, and I think they cover a lot of the ethical problems with the book – Justifying the murder of disabled kids and minimizing the problems with punishing autistic people with cattle prods and electric shocks is troubling, to say the least. I plan on writing more about that, and I encourage my peers to do the same. That’s not what I’m writing about today, though.
What I’m writing about today is much more personal: As an autistic person, I am tired of walking the impossible line between “too autistic” and “not autistic enough” to have a say in autism policy. I am tired of my peers having to walk that line. The fact of the matter is, there is no way for anyone to be sufficiently impaired but not too impaired to meet some so-called autism advocates’ made-up, arbitrary standards. We shouldn’t have to. I’m not like your child because no one is like your child. Your child is an individual. That doesn’t mean I don’t understand what being truly autistic is like. In a Different Key’s coverage of Ari Ne’eman, founder of the Autistic Self-Advocacy Network, is a prime example of this pernicious double standard.
Full disclosure: Ari Ne’eman is my friend. In my experience, Ari is warm, clever, and funny. He cares deeply about his work. This is a large part of why I find In a Different Key’s description of Ari utterly baffling. He is described as lacking empathy to a pathological degree. He feels very strongly about certain issues, of course. But who doesn’t? Do the Democrats and Republicans lack Theory of Mind when they clash in Congress? It’s an absurd double standard.
This unfairness is a feature of In A Different Key. The book’s treatment of Ari is a case study in how self-advocates are told that we are paradoxically too disabled and not disabled enough to have insight into own experiences.
Ne’eman, who even in college, was usually seen wearing a necktie and lugging around a briefcase, was diagnosed with Asperger’s at the age of twelve. He was sent for a while to a special school, which he disliked. He was reticent with reporters who asked about his past beyond that. In Troy, New York in 2013, he gave a typically vague answer to the question: “My experience growing up was similar to most autistic people,” he said. “We struggle socially. I had very strong interests in very particular topics.” The reporter seemed to take the cue. That was all Ne’eman wanted to say about the subject.
Ari is not obligated to demonstrate to strangers that he is autistic enough to meet their invented standards. The refusal to share the intimate details of how an impairment functions is not the same thing as that impairment not existing. To be blunt: You aren’t his family, you aren’t his friend, you aren’t his therapist or his doctor, and it’s none of your goddamn business. It’s an intensely personal question and you are not owed an answer. It takes a fairly warped sense of entitlement to declare yourself the Grand Poobah of what is “real” autism and what is not. And yet, it’s an astoundingly common attitude among non-disabled people.
I had my first interview with a newspaper last May. The reporter was looking for autistic adults to talk to about neurodiversity and autistic culture. One of the first questions she asked me was about ways that I am symptomatic or unusual. I was lucky in that some activist friends had prepped me on how to keep my privacy: “Pick something you do that is innocuous and sort of boring.” My go to these days is that I wear musician’s earplugs most places, as I have somewhat sensitive hearing. This isn’t a new kind of rudeness. Jim Sinclair described it in 1994: “We’re expected to speak only when spoken to by neurologically typical people, and only for the purpose of providing informative data for others’ purposes, like self-narrating zoo exhibits.”
I refuse to play the Misery Olympics. So do my fellow neurodiversity advocates. I’ve done things that were very challenging for my parents and sister. I’ve done things that I’m not proud of when having a meltdown. A lot of us have. I’m not going to tell those things to strangers who don’t give a damn about me so they can judge whether I meet the shifting goalposts of being autistic enough to have an opinion. The thing about the Misery Olympics is that nobody wins.