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.
15 thoughts on “Autistic Enough?”
Probably not the best example there, what with the increased polarization and generally reprehensible nature of politicking these days compared to when they’d mortally wounded one another in fisticuffs.
I’m reasonably certain that many political hardliners have purposefully erased their theory of mind, much like how neurotypical people can choose one of many ways to no longer have empathy for a person and then destroy them.
The other thing that people who ask this stuff, or people who throw doubt on our neurostatus for not giving detailed answers, don’t seem to get is that this stuff can be incredibly hard to talk about. And that a lot of the things that add up to make an autistic childhood hard, especially when so many of us weren’t diagnosed, weren’t necessarily the big, spectacular challenges, but as I said to a friend once, the thousand daily little signals and reminders we get that we’re wrong or that people aren’t supposed to be the way we are.
And then there’s that the real challenges of autism to an autistic person often aren’t what an outside observer sees at all, and those things are even harder to talk about, not necessarily because they’re painful, but because the ways that autism gets talked about in the popular media is so backasswards that it’s left us without a common language for those experiences.
Yet Ari himself denies people the opportunity to volunteer with ASAN for not being “autistic enough”
Source? Or are you just spreading rumors? Did someone say that to you specifically? Was it Ari?
I am not calling you a liar and I am unaffiliated with ASAN, but that’s a seriously foul accusation you just made unless you can back it up.
Please, stop distracting the argument from the real issues. Individualism is not the solution. All know this is a difference between higher and lower functioning/aptitude, not level of autism. He very much is obligated to let the general public know of his level of ability as it pertains to autism, as he is trying to and likely has influenced government policy on autism, while leading an organization which does the same. This is a serious concern due to his opposition against looking for a cure, which would primarily benefit the lesser-abled side of the spectrum. He has responsibilities to the stakeholders, not to his friends and cronies. Misery Olympics? This is not just a contest over sympathy. I won’t be shamed into staying out of this conflict of interest between the higher and lower aptitude ends of the autism spectrum. The highly-abled side of the spectrum already has all of the advantages and indulges in its dominance. I don’t prioritize your reputations. I have basically no life due to my gruesome particular disabilities, and have had to worry over what your side is trying to do.
What? First off you can’t just assume someone is “high functioning” even if you believe in the classification.
Second, that comment is just gross.
There are no assumptions. It is possible to discern that some are higher or lower functioning than others. All you have to do is see what someone can and can’t do. You basically have nothing to refute this.
lurker. Can you tell us what kind of “gruesome particular disabilities” you have that separate you from the higher functioning ?
I can’t communicate well, which includes difficulties putting words together in sentences to answer questions, express thoughts, and to explain things. I have difficulty speaking clearly, slowness in responding and in coming up with responses. I also can’t read nonverbal cues much, and sometimes have difficulty keeping up with and understanding what others say to me and engaging in conversations, and have problems knowing when someone is talking to me. I have very weak executive functioning and judgment, and some difficulties with concentration and attention, as well as with noticing pertinent details among other ones. I am often unaware of mistakes as I make them, have short term memory problems and forgetfulness, and have confusion in understanding instructions. I think I have problems in learning some things, and have poor reading comprehension. My visual/spatial/motor skills are terrible, and I injure myself accidentally sometimes.
It’s even worse when you don’t explain everything that makes you autistic and they assume you just aren’t really autistic. I often want to tell people about it but I have a hard time finding the words so I can’t anyway..