On Being an Autistic Person

As you may or may not know, I’m autistic.

I don’t make a secret of it, but I don’t often go around trying to explain what it’s like, so I’m taking this opportunity to put it in words. And to explain something that really annoys me, while I’m at it.

Autism is a whole a spectrum of neurodiversity, so it means a lot of different things to a lot of different people. For me it means a little trouble with “seeing the forest for the trees” (details overwhelming generalities); as well as trouble with dry sarcasm (I’m okay with the kind of sarcasm that you sing); more subtle facial expressions (loud ones get through); and properly communicating what I mean through my body language (yours is usually fine, if I remember to pay attention). I have some mild sensory issues, too: touching cotton balls, paper napkins, and dry crystal glasses makes me intensely nauseated; I don’t have the auditory filtering that lets you neurotypicals navigate cocktail parties; and my body doesn’t give my brain great feedback (which has made exercise a little… fraught… on a couple of occasions, and makes me more comfortable when moving, including swaying and rocking). When I was a kid I threw a lot of “temper tantrums,” and when I got older, I had “anger management” issues. Except they weren’t tantrums or a bad temper, they were meltdowns, and they’ve almost entirely evaporated post-diagnosis, because hey, it’s amazing how knowing what’s wrong makes things easier to fix.

I am an autistic person.

Now here’s the thing: I can’t tell you the number of times people on the internet have tried to correct autistic people about the way we refer to ourselves. You can’t so much as whisper “I’m an austistic person” on Twitter Dot Com without some “autism parent” popping up to tell us we’re not “autistic people” we’re “people with autism.”

Y’all need to stop.

Austim is, as best we can tell, a difference in brain architecture. It looks like there are a number of genes involved, and that there may be environmental factors affecting the expression of those genes. It’s not contagious. It’s emphatically not a disease. While many of us would be very happy to have some of the “comorbidities” mitigated (or done away with entirely), under no circumstance does autism itself need a cure. It’s a variant organizational structure specific to our brains, not a disease.

It’s like our brains run Linux, instead of Windows or OSX. They work, just not the same way.

A truly shocking amount of who you are is a function of the shape and design of your brain. The ways you think about things are, in my opinion, one of the most defining features of your identity. Autism is a defining characteristic of my identity. I don’t “have autism” so much as I “am autistic.” It’s who I am.

Think about it like race or gender: people don’t “have Blackness,” “have womanness,” or “have queerness.” Someone is Black, they are a Black person. They are a woman. They are queer.

“Person-first” language—”person with/of X” formulae—were invented to foreground the personhood of groups that were traditionally denied personhood by other (usually white, male) people. Some of them are even still used by the people who identify as such. For example, if I’m not mistaken, “people of colour” is still in use, but it’s complicated.

It’s important to remember that the people who came up with it, and who use it, often mean well. I appreciate that. But.

You would never come up to someone who said “I’m a Black person” and try to correct them. You would never say to a gay person “don’t let your gayness define you!” (And if you would, ew, go away.) (And let’s not forget that there are people with multiple overlapping identities, like (say) queer black people, who probably get twice this crap.) But people with truly stunning regularity tell me and other autistic people that we’re not “autistic people,” but rather “people with autism.” That we shouldn’t “let our autism define us.”

Do. Not. Do. This.

As someone who’s studied the development of languages at the graduate level for longer than many people even attend post-secondary school, I will be the first to admit that language is a slippery beast that rejects all attempts to corner it and make it obey rules.

But as a matter of basic humility, you do not tell people how to interact with their own identities.

The vast majority of autistic people prefer to be called “autistic people.” Use that as your starting point. If they want to be called a “person with autism,” call them that.

I’m an autistic person. You can call me that.

Signed: The Remixologist.

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postscript:

A final note before I go: under no circumstances should you ever tell an autistic person that they are not “autistic enough” to offer insights regarding your child—your child who uniformly “has more severe autism” than we do. I’m an autistic adult. Your autistic kid’s still a kid. They’re going to change as they get older, but I promise you, they will never be less autistic. That’s all I’m going to say about that for now, because it’s a whole other post and more.]

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post-postscript: I’ve come to realize that one of my comments above may have been harmful in its lack of intersectionality, and I’ve added to them to point out that identities are not either/or, and that there are plenty of people who are, for example, black, queer, and autistic, who probably have to deal with a whole dogpile of garbage at once. (12/3/2018)

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Photo source: Neil Conway, CC BY 2.0