I wrote this back in 2013, and it’s worth repeating, so here it is.
Here’s the thing about my autism, okay? It’s my autism. It is not your kid’s autism, or your brother’s autism, or your nerdy friend’s autism, or your patient’s autism. It is my autism and no one else’s. It doesn’t belong to anyone but me. So I’m the only one who gets to decide whether it speaks or stays silent in a given situation.
And I am sick of organizations appropriating my autism to scare parents and politicians into supporting dubious “treatments” that don’t work instead of making sure that I have the supports I need to do my work, and making sure that other autistics have the supports they need to dotheir work, whatever that work might be.
I don’t think in pictures. I speak in whole (and complex) sentences. I have managed to reduce my rocking and flapping to times when I’m alone or with others who understand and don’t judge me. I don’t think I make any more gaffes or slipups in conversations than most NTs make, these days. But it is still my autism. Mine. And the way it affects me has changed over the years.
When I was a kid in the 1970s, being autistic caused me so many problems that were attributed to my high IQ and my “giftedness.” With no explanation for why people thought I was weird, and no way to fix any of it, I did a lot of self-harm. I hated myself, because no matter what I did, I was in someone’s way or getting on someone’s nerves. I was literal-minded to the point that a joke book on “how to make yourself miserable” (Google it or look it up on Amazon) seemed like actual instructions for how to live, not humor. I had trouble understanding small talk or why anyone would care about the weather or sports when they could be discussing the important things (like the books I was reading to pieces, or the music I wanted to play over and over and over and over again on the piano, or the important thing I learned in history class). I had no feel for depth or nuance. I couldn’t understand how interaction worked – too much of the important information was being communicated on channels that I had no receivers for (tone, body language, facial expression, and indirect/metaphoric language). I spent a lot of time frustrated and confused because my logical, literal brain couldn’t navigate our illogical, metaphoric world.
The social ineptness, literal-mindedness, and unrealistic expectations continued into my twenties. I dropped out of college after graduating from high school with a D average (so much for being “gifted”), drifted from dead-end job to dead-end job, annoyed my co-workers and bosses, and got fired repeatedly. I got married thinking it would fix me; it didn’t. After two kids and a nervous breakdown, my marriage fell apart, and I found myself at 29 with no prospects and no income beyond a very small disability stipend.
My thirties were spent going to school because at first I didn’t know what else to do. In that first year of school I got lucky – an official diagnosis of high-functioning autism, and for a while I used that as a shield. But I didn’t want people to hate me, so I also studied how it actually works, this whole interacting-with-other-human-beings stuff. And after twelve or thirteen years of intense study of human interaction, I get some of it. I have a Ph.D. now, and it’s in a subject that helps me understand and get at least some of this stuff that I never understood as a child and a young adult.
But I’ll never get all of it. I’ll never get what’s interesting about the Kardashians or Paris Hilton or any other celebrity. I’ll never get why the news doesn’t cover the real issues: global warming, discrimination, the crashing of our economy by corporate bigwigs and Wall Street gamblers – and I’ll never get why small talk is so damned important that NTs have to fill up so much air with it. I’ll never get why people’s actions don’t match their words. And I’ll definitely never get why “nice” is so much more important than “honest.” I still have trouble with my need for black-and-white answers and one-true-way thinking. I am still not comfortable with nuance or ambiguity. I still hate new, and I still resist change. I still annoy people with my difficulty in shifting mental gears to adjust to rapid changes (even minor ones like changes in a conversation or going to a new restaurant for dinner). Make no mistake: I am still autistic, even though I fake NT really well these days. And I still need support that isn’t being provided, because Autism $peaks would rather spend money trying to eliminate people like me by making us “normal.”
It is not just my job to adjust to your world. It is also your job to adjust to mine, to do things my way when you are interacting with me. It is your job to be a little more literal in your speech, a little more honest about your intentions even if it’s embarrassing, a little more direct and a little more blunt. If I have to navigate through your indirect, metaphor-filled, obscure, “polite,” and confusing methods of communication, then I think it’s only fair that you should have to navigate through my direct, clear, blunt and fully honest (with no white lies) method of communication.
What I need support for is help with making ends meet. What I need help with is finding a way to get a job full-time doing what I love to do (teaching college) in spite of my social weirdnesses (and you try getting a tenure-track job without making everyone in a department think you’re going to be a good social fit during the interview process. It’s never about my academic qualifications; it’s about the fact that I’m socially strange). I need help with navigating social pitfalls and places where honesty is simply not tolerated (and help understanding why people can’t just say what they mean and mean what they say). And I always will need help with those things.
But this is still my autism. It belongs to me, it’s made me who I am, and I wouldn’t give it up for anything. It’s given me a sharply analytical mind, a single-minded passion for achieving what I need to achieve, and a perspective on the world that allows me to cut through the bullshit and point out the problems.
It’s not all roses and cookies. But it’s still my autism, and I wouldn’t be me without it.