“Hi, I’m autistic.”
I know, it’s not a thing you normally hear someone say, but I want to make a point here.
I’m what’s known as “late-diagnosis,” meaning I didn’t have much of a clue about some pretty important parts of myself until I was nearly thirty. I didn’t know then (as I know now) why missing a step in my morning routine can completely ruin my day, or why people often tell me my facial expressions are exaggerated or cartoonish, or why some days I can’t touch a paper napkin long enough to even get the silverware out of it at a restaurant. Maybe I should’ve known earlier—god knows the signs were all there, from meltdowns mislabeled as tantrums, to social backfires misunderstood as failures to “play well with others”—but thirty years ago in Ontario you couldn’t be both “gifted” and “autistic.” They were literally separate check-boxes on the educational placement form. If I had problems it was because I was “too smart for my own good.” But I am autistic, and it gets top billing as a part of who I am the way being a writer or being an academic does. It’s about the way I see the world, the way I think about it, and the way I interact with it. So I want to take a few minutes to say a few things about autism here, in this oddly self-centered genre of website, with the caveat that I’m one autistic person with one person’s experiences. As ever, your mileage may vary.
I do not “have autism.” I am autistic. If you ask a lot of hashtag-autism-moms out there, they’ll say their child “has autism” and that they “don’t let it define them.” I am autistic. It does, in many ways, define me. It’s literally to do with the structure of my brain. I’ve written about this elsewhere, but I just want to say it again: the majority of autistic people prefer what’s called “identity first” language, i.e. “autistic” or “autistic person,” over “person first” language, i.e. “person with autism.” Not that you won’t meet other autistic folks who prefer “person first,” but in general it’s more polite to refer to people the way they refer to themselves. We don’t need to be reminded we’re people. We know.
I do not often “look autistic.” Aside from the fact that there is no “look” to autism (Rain Man is not a documentary), you don’t get to my age without a diagnosis if you exhibit marked behavioral deviations from the assumed norm. This is a phenomenon called “masking,” in which autistic children quickly learn to “act normal.” Don’t walk on your toes. Don’t flap your hands when you’re excited. Don’t rock or tap your fingers or bounce your knees even if it helps you stay calm. Make eye contact when you’re talking to someone. Make sure you laugh at the right moments, smile and nod when someone’s talking to you, don’t correct people when they’re wrong if they’re in a position of authority. None of this is easy. It’s tiring, stressful, and anxiety-producing to put on this act, and most of us late-diagnosis types do it without even thinking about it; we have to consciously un-learn masking because we’re so used to it. That said, there are times when I very much will “look autistic,” where I can’t keep the mask up—I find hospitals, large crowds, and finding new ways to places on public transit incredibly stressful, for instance—and that’s okay. I don’t need help, I’m just short on resources and am putting them to better uses than pretending to be neurotypical.
Neurotypical and Allistic
These are two words that come up often in discussions about autism. First, “neurotypical” means what it sounds like—your brain’s operating within the defined parameters for “normal” in today’s society. Second, if you’re not autistic, you’re “allistic.” That’s literally all it means. We needed a word for it because there are plenty of non-neurotypical or neurodiverse people who are not autistic. If you’ve got ADHD or OCD or what-have-you, you’re not neurotypical, but it doesn’t make you autistic. So we needed a word not “not-autistic,” and language provided the building blocks for it.
It’s often said that “autism is a spectrum,” but it’s become clear lately that it’s a misleading metaphor, because it assumes there’s two “ends” and a sliding scale in between. It’s tied to the idea that there are “high functioning” and “low functioning” people, labels which are discriminatory and ableist and you should never use: “The difference between high functioning autism and low functioning is that high functioning means your deficits are ignored, and low functioning means your assets are ignored.” Instead, the metaphor of the “sundae bar” has come into use, which suggests that the effects and presentation of autism are more mix-and-match, both to the individual and even to the day. As I wrote above, some days I sure look (and even feel) “more autistic,” and that’s kind of how this works. Besides, I prefer to think of myself as a tasty dessert with sprinkles anyway.
There’s a growing need for self-advocacy in the autism community, because there’s a persistent attempt to silence autistic people in discourse about what’s best for us. We’re either not “autistic enough” to “count,” or “so autistic” that we can’t know what’s best for us. Both silence the voices of autistic people, and render inconsequential our experiences. So here’s some links to autistic people and autistic-led organizations who I think are doing cool things or are at the very least worth following on Twitter.
ASAN (The Autistic Self-Advocacy Network) is a US-based autism advocacy group who put autistic people’s voices first.
A4A Ontario (Autistics for Autistics Ontario) is an Ontario, Canada-based autism advocacy group. They’re new, but they’re filling a need that wasn’t there before, and I’m originally from Ontario.
Canadian Autistics United is an online community that’s pretty much exactly as advertised in the title.
Autistic Book Party is a great series of reviews of books by autistic authors, featuring autistic characters, and both, put together by the autistic author and advocate Ada Hoffmann.
Autistic Hoya is a really informative blog by autistic writer, activist, and educator Lydia X. Z. Brown.
Kaelan Rhywiol is an autistic author and editor and a general font of knowledge about all things queer.
Are you an autistic advocate, educator, or author? If you want me to share your link on here, just drop me a line using the contact form or just on Twitter: @schadenford