(Trigger warning: Ableist language and phrases.)
One of the most common responses I get when I disclose that I'm Autistic is the curious look mixed with a bit of confusion as the other person says, "But you must be really high-functioning then, right?" or something remarkably similar. And I get this.
I have "passing" privilege. Most times, most days, most places, I can "pass" pretty well for neurotypical, for non-disabled, for non-Autistic. (Except around other Autistics. They know. They always know.) Outwardly, I have all the markers of success (and more) according to the framework constructed and perpetuated by our ableist society—I skipped a grade, graduated from high school without staying an extra year, took honors and AP classes, was accepted to and enrolled in a prestigious university, and am pursuing a double-major while interning at a national non-profit organization. On paper, I look fantastic.
In person, at first glance, I seem completely together. I can be intelligent, witty, sarcastic, sociable—even gregarious. I've been in two romantic relationships, know at least the basic ins and outs of both domestic and international politics, and have memorized enough little facts and anecdotes from my life and the lives of other people I know to make dinner conversation for years. I'm told that the first impression most people get of me is "brilliant young woman" or something to that effect.
Most people equate "autistic" with unintelligent, incapable of doing anything, relegated to special education, unable to complete post-secondary education, anti-social, incapable of choosing to have or not have sexual or romantic relationships, and eternally infantile. These ideas arise because of the ableism that is so pervasive in our society. I defy most of them, if not all of them. Most Autistics I know do. Intelligence has nothing to do with disability, including in those with intellectual disabilities; ability to "do things" is very heavily tied to the presence or absence of necessary supports, natural or unusual; sociability or lack thereof has nothing to do with being Autistic; sexual orientation, including asexuality, is natural to everyone regardless of disability; and all disabled children become disabled adults. The only ones that may disproportionately apply to Autistics are the over-representation in segregated special education environments and the underrepresentation in higher education.
"But since those things don't even apply to you, and they must for all of those poor, low-functioning autistics, you must be very high-functioning. Right? I mean, I would have never guessed you had autism."
I'm sitting in my dorm room past midnight and I haven't started my homework yet. Really. I know exactly what my assignments are and when they're due, and I haven't started them yet. They're sitting behind me, papers and books jumbled together in my bag, along with dishes I haven't washed (and that have needed to be washed for several days now) and notes to myself to write articles and emails that I was supposed to write anywhere from a month ago to this past weekend. I know this.
This is a nightly routine. Know that I have homework; know that I need to do it; know that I have a million and one other things that must be done and maybe needed to be done sometime two days or two weeks ago; and sit here and do nothing.
I go on Facebook for a few minutes. Check a few links, an event page. Glance at my email inbox. Glance at my blog's list of articles I've written elsewhere or other places where people have linked to here. Put laundry in the washing machine. Eat a popsicle. Wait. It becomes two a.m. quickly. But that's early. I start my homework later. I frantically work at it, knowing that I have a ticking clock before I'll fall asleep out of exhaustion and knowing that no matter how hard I try to convince myself, there's no way whatsoever that I'll actually wake up in the morning before class to finish it.
Things that aren't homework? They rot for longer on my hard drive, on my to do list, somewhere in my mind and memory. I go to classes. I go to my job. I go to my internship. I go to events where they serve free dinner. I do my homework. But then I forget to call people and say hello. I forget to write random things about disability for this blog. I forget to email people to follow-up from meetings and conferences and chance encounters after promising I would and keeping a little stack of their business cards. I forget to do my dishes, days and days after I've used them and kept them in a pile of Dishes to Be Washed by the door. I stop noticing the gigantic paper with a to do list written in marker pinned to the door to see before I leave. And these things can happen to anyone, disabled or not, but for me, to professionals, they're evidence of "deficits in executive functioning," "deficits in self-care skills," "deficits in social awareness," et cetera, et cetera.
And they're not fun. Whether they're simply evidence that I forget things a lot or fall behind on things a lot or some massive amazing deficits somewhere (which I doubt), they make life obscenely harder than if I didn't do these things (and it's not as though I haven't tried every strategy in the book, so don't give me that "but you must not be trying hard enough" or "you should just try harder" crap) and certainly not even close to as shiny and easy and happy and rainbowy and sunshiny and yay as "you must be so high-functioning" makes my life sound.
And sometimes, rarely, but sometimes, I lose speech. The ability to form words and push them past my lips as sound disappears. Usually, no one notices, but that's because the few times that it's happened that I remember, it's happened when I'm alone. I've been around people exactly three times when it's happened. I usually speak. In fact, I usually speak articulately. I'm told this nearly every time I meet anyone or a group of people and spend more than one minute talking.
"But I thought people with autism couldn't talk."
Some Autistics talk a lot. Some don't talk at all. And others, like me, fall somewhere in between, whether you notice it or not. Usually, I talk. And occasionally, it just stops. And sometimes that's okay because if I'm alone, it doesn't really matter, and if I'm with another Autistic, they'll usually understand. But sometimes I worry that it'll happen when I'm in a situation where the people around me won't understand and won't just let me write or type things because all they'll see is that oh-so-high-functioning woman who we never would have guessed had autism so why the hell isn't she talking all of a sudden and what kind of ridiculous game is this. And that would be bad.
Because if nothing else, "high-functioning" usually means (grudging) (marginal) (barely any) respect for my human dignity and self worth. It means I'll at least get talked to, if talked down to, and I'll at least get listened to, if not taken seriously. It means I get into classes and show up at clubs and no one really questions my presence most of the time. And if nothing else, "passing" usually means presumption of competence, equal treatment under the law, no awkward or invasive questions from strangers, and legitimacy when I speak—until they find out I've just been passing, of course, and really aren't all that neurotypical at all.
When I speak in openly Autistic ways, move in openly Autistic ways, convey my thoughts and ideas and feelings in naturally Autistic ways; when I'm outed or out myself, when I lose (temporarily or permanently) the characteristics that let me pass or that get me labeled high-functioning; those are the times when I'm stuck between a rock and a hard place. (There—a metaphor. "But I thought people with autism have no imagination and don't understand metaphor." There's a good phrase for someone like that in Egyptian Arabic—ruuh fi siteyn alf dahiya.) Those are the times where I cease to be "that high-functioning person" or "wtf she's autistic" and simply become "wtf is wrong with her."
Some days I pass all day long, and consequently, no one questions my intelligence, abilities, competence, or qualifications. Other days, I'm stuck in a room full of hameer (donkeys) who've pinholed me onto the "high-functioning" end of the false dichotomy of "low/high functioning" because OHMYGOD I CAN SPEAK AND I GO TO COLLEGE I MUST BE SO HIGH FUNCTIONING. But I don't feel neurotypical, ever, and I don't feel "high-functioning." Some days I laugh hysterically at the idea that people actually believe this bull and think of me as "high-functioning" and Amy Sequenzia as "low-functioning." And other days I just want to cry because it hurts so much.
You don't really know what you're doing to me when you ask me if I'm just very high-functioning. You don't know what that does to entire communities of Autistics, all of whom suffer from these arbitrary, hurtful labels of low and high functioning, and none of whom they even come close to accurately describing. Because they only describe ideas that don't exist in reality, that don't exist outside laboratories without windows or thesis papers without people. They don't even describe precise or definite ideas. How can you take these words, then, and try to use them to describe real, breathing human beings? It reeks of ableism; it reeks of paternalism; it reeks of laziness and resorting to the language of convenience rather than searching for and using the language that affirms the value in being Autistic, empowers us despite our marginalization, and describes us respectfully and meaningfully.
"Oh, but you're so high-functioning. You must not really understand those less able than you, those who don't function at your level. You really shouldn't try to speak for them."
Ruuh fi siteyn alf dahiya, ya hameer.
You don't know me. You don't know the life that I live day in and day out. You see me for a few minutes, maybe a few hours. Maybe a few hours on a regular basis. You know nothing about my life except what I tell you in little increments, heavily edited increments. The things I choose to let you know. The things that aren't as consequential as the things that actually affect me. You don't know me, and you can't call me "high-functioning."