If you spend any time within autistic circles, or looking at autistic’s Instagram accounts, you’ll know that “you don’t look autistic,” is one of those vehemently despised sentences that people say to autistics frequently. It’s a beast of a thing to hear.
There are two reasons this is a crappy thing to say:
One, it plays into the assumption that the “neurotypical world” dictates what is and is not autistic, and that autism is still largely defined by what annoys/bothers/confuses neurotypicals rather than the lived experiences and inner world of autistics. (And because we mask so much, to our own detriment, sure, you won’t always “see” what you think makes someone autistic.)
Two, it plays into the idea that because we don’t “look” autistic, we must not be “that” autistic or need much support/struggle that much.
All of the above are as false as can be.
All the ways I’ve learned to mask and present myself on the outside are very, very different from what’s going on in my head and body. You cannot tell someone is autistic by looking at them. Allistics (non-autistic people) are really and truly stuck on the idea of eye contact; one of of the reasons “you can’t be autistic” that we hear most is “because you make eye contact.” And as unimportant and unreliable as the eye contact “test” is, it’s a notion that just won’t die, so let’s have at it for a moment. Eye contact is not a diagnostic criterion. The full set of criteria include “deficits in social communication and interaction,” which can include eye contact, but eye contact is not mentioned anywhere. (The DSM language sucks, by the way—we don’t have a single deficit, thankyouverymuch. What we have are differences. And I hate the word “diagnostic,” because being autistic means I am a different neurotype, not a person with a disorder.)
To the outside world—to you, to the cashier at the grocery store, to my professors, to coworkers, to friends—I appear to make eye contact. So does my husband (who is also autistic). But what you don’t see is that I hate eye contact. It has always made me uncomfortable, largely because it’s something I don’t do naturally and so I’m afraid I look weird or squirrely when I’m forcing it. Watch closely, and you’ll see a sort of choreographed routine where I briefly make eye contact and then find all these little ways to give myself a break while trying to appear that I’m not purposefully breaking eye contact. I’ll take any chance I can get to look away, as though I’m thinking about what you’re saying. Or I’ll take frequent sips of my coffee. Or I’ll stir the coffee. Or I’ll look at the door at people coming in, if we’re out at a coffeeshop, for example. Or I’ll just do my favorite trick, whenever possible: keep my sunglasses on. My sunglasses are such a “thing,” that people used to bug me to take them off, as far back as my teen years. (I’m also infamous for having unusually large sunglasses.)
You might ask, “Well, if you can make yourself make eye contact, why is it a problem?” Well, if you can’t do full splits, what happens if you force yourself to do it? Hurts, right? But can I call you flexible because you can force it?
When I am diligently “making” the eye contact I know that I’m supposed to make, it means I’m not paying attention to what the person in front of me is saying; I’m so focused on making the eye contact, monitoring how long I’m making eye contact, wondering if it looks natural enough or if I look like I’m staring at you, if I’ve made eye contact for too long, if it’s been long enough that I can take a break, and feeling so, so very uncomfortable the entire time. (And if you watch my husband closely, you’ll see that he always takes his glasses off when he’s face to face with people; he does this because then faces and eyes are blurry and he’s no longer making direct eye contact.)
This “faking eye contact” is called masking. (And yes, it’s faking eye contact. I’m not engaged. I’m not connected to you. I’m not listening. I’m just going through motions of what is expected of me.)
Y’all don’t know what it autistics look like, because you think the autistics you’ve seen in movies are what all autistics are like. There’s that saying, when you’ve met one autistic, you’ve met one autistic. So many of us have learned to mask—essentially performing and spending all our energy on passing as neurotypical so that we aren’t mocked, infantilized, or ostracized. As a kid, and as a teen, I was picked on A LOT. I didn’t fare very well as a young adult, either, and I’m pretty certain that most of my masking skills were learned in my early twenties. (As a teen, for example, I simply learned never to raise my hand and never to ask questions in class. My questions were about small details no one else needed, or gave the impression I wasn’t paying attention because I don’t process verbal instructions very well, or because I understand things differently… whatever it was, asking questions essentially resulted in my being laughed at or yelled at.)
Not all autistics can or do mask, but some of us have learned to mask and to mask really well, which means we’ve learned to hide the traits that “make us look autistic.” That doesn’t mean we “aren’t autistic anymore” or that we don’t have any issues if we’ve learned to “play normal.” It means that we’ve learned to do hide ourselves to avoid the negative consequences of simply being ourselves. It is exhausting, damaging, and can lead to all sorts of physical and psychological problems.
Autism isn’t about what you see. Autism is about what we experience. (Also: autism isn’t caused by vaccines, a poor diet, or any other external nonsense. But it is hereditary, so…) I, like many, have spent so long masking that it’s been a long, long process to find what’s “mask” and what’s “me.”
If I told you what goes on in my head and how I feel during social situations, you might declare that I “just” have social anxiety. But I only feel awkward and uncomfortable and self-conscious around neurotypical people. It’s always been a struggle to manage small talk or casual interactions where conversations are about mundane-to-me things. It’s a real struggle to pay attention. But I also have to work hard to monitor myself every second, to gauge when I should speak, how I should respond, and not saying anything “weird.” In a group, I’ll laugh when everyone else laughs simply because everyone is laughing, so I know I *should* laugh even though I don’t know why anything was worth laughing about. If I let my guard down, I’ll have “inappropriate” (to neurotypicals) reactions or make faces that don’t make sense. When I was much younger, I was frequently called “weird” or “intense.” People would tell me that it was obvious I didn’t like someone, though I had no idea why they’d say that as I had no particular feelings about the person in question. I was just a weird kid and a weird teen, but once I entered the “working world,” and my behavior and reactions were being noticed and called out more frequently, I learned to monitor myself closely. I had always been extremely blunt and direct, but I learned to speak in the neurotypical, roundabout way or just keep my thoughts to myself.
Anyway, I don’t have social anxiety; I can manage just fine in social situations when there’s real conversation about interesting (to me) things. I am a share-r and absorb-er of information. I’m also pretty good one-on-one (versus in groups), and people are often my special interest. I love meeting new people, I love digging in to what makes them tick, and I absolutely love connecting with someone. That means that I’ll happily press for details and ask all sorts of questions about a person’s life—sometimes I can tell I’m being “weird” again, and I’ll stop. But sometimes, they’re happy or flattered. I’m actually quite an extrovert and tend to make at least one friend or other connections in every class, job, or social gathering I’ve ever been in.
I connect with people, individuals, fairly easily. I have a long history of instant-friendship with people I now recognize as also being neurodivergent (whether actual ADHD, autistic, or some other thing that neurotypicals have classified as a “disorder”). However, I’ve never maintained friendships very well—I stay friends with other neurodivergents who understand and are cool with not speaking or seeing each other for months, even years, on end. I don’t know how to manage, nor do I really care about, the minutiae of daily life. I don’t want to get together to “catch up,” i.e., to sit and drink coffee while talking about feelings or just going over all the stuff that’s happened in our lives over the last however long. It’s not because I don’t care about the person in question; it’s because I don’t see the point.
BUT! I will remember really obscure details from conversations ten, twenty, even more years ago. I remember things that most people think are throwaway, and I have, on more than one occasion, freaked people out by mentioning these things I remember. (There’s something about me that inspires people to let this information fly, even if as an afterthought, but I catalogue it because it’s interesting. More than once a person has nervously asked me “how did you know that?” and then they looked confused when I say, “you told me.” But I don’t just say “you told me,” I’ll describe where we were, what they were wearing, any other people that were around, and what led up to them telling me—hell, I might even describe the weather. Oddly enough, that only seems to make them more nervous not less. LOL, as they say.) So I have also learned to lie and to pretend not to know or remember things.
I could write a novel on all my “social difficulties” or “social deficits,” as the DSM calls them. I also have sensory issues, particularly with sound. I’m alexithymic, struggle with interoception, and can get obsessive about interests or even people. I tend to be over-expressive. I have absolutely no interest in the routines and rituals that most of society cares about, even for myself (baby showers, weddings, funerals, etc.). I am not lacking empathy—I am, as most autistics know we are—hyperempathic, and struggle to manage other people’s emotions or get swept up in them. I don’t have much patience for sentimentality, though. I do rehearse social interactions or things I plan on saying. As a kid, I “collected” and “staged” toys instead of playing with them like neurotypical kids do. I still collect things and love to organize them. I don’t read a lot of fiction, though I did as a teen in order to understand my peers better; I am a voracious reader, though, and always have been—as a kid, I had a set of Disney encyclopedias that I loved to read over and over and over again. (Did I mention how much I love information? And learning?)
I used to be a tech trainer and an EFL/ESL teacher (English as a second/foreign language). I didn’t have any anxiety about standing up in front of a room to teach groups of people—because training is 95% performance and personality. I didn’t have to struggle with things to say or how to respond; my job was to teach the same curriculum over and over and over again. Technical training was super easy. Not only did I have a set list of topics to cover, but I got to use all the same jokes and tech speak for every class. I was always working off a script. But after full days of training, particularly when I traveled to train on-site, after each day of teaching, I’d always have to run to my hotel room and hide in the dark with the tv and room service. I always squirmed my way out of invites for dinner or drinks after classes. It was exhausting, and I needed to recover.
The sensory issues and synesthesia make things incredibly difficult at times. My synesthesia mostly involves color, sound, and movement, and I tend to have strong, emotional reactions to a lot of things in my environment. I hide my reactions and stifle any outward expression of emotion; quite simply, people think it’s weird to start crying because a color evokes such strong feelings or because I’m so taken with the extraordinary colors of a sunset. I fidget A LOT, which I also try to curb around other people, but then it’s harder to focus. Sometimes I fidget because I’m too hot (I don’t regulate body temperature well) and the tactile sensations of being hot and sweaty are too much. Or because the seams of my shirt aren’t even. But I learned to hide the fidgeting the day two girls in my class, in 7th grade, picked on me when they saw me fussing with my bangs (because I was hot and they were sticking to my forehead and making me uncomfortable).
I was diagnosed with misophonia a while back, which involved getting a hearing test. My hearing test showed that I have superhuman hearing for high pitches. That means many of the sounds that don’t bother most people “pack a bigger punch” (as my audiologist said) for me. Thanks to the pandemic and general population explosion of Seattle, my neighborhood has gotten MUCH, MUCH noisier and I feel like I’m being suffocated and assaulted most days. The leaf blowers, ambient traffic, motorcycles tearing down the road, the neighbors kids… all these things are stressful and, at times, physically painful. I’ve often had to turn the volume on meetings down or step away completely because someone’s voice (or the way they smack their lips when they talk, or other similar sounds) send me straight into fight or flight mode. I used to struggle with panic and rage when I felt trapped (and couldn’t get away from these sounds)—but working at home and learning to request accommodations has helped immensely. (And accommodations in my case really just mean nothing more than “can leave meetings or keep the camera off, as needed”). Sometimes I have to leave the room when my husband or son is eating. I’ve been known to send my husband all-caps, rage-filled texts for half an hour when I’d be trapped on a bus or in a room with someone who was eating a bag of chips, for example.
And no, I cannot just tune things out.
This is all truly just the tip of the iceberg, as they say. I assure you, yes, I am very much autistic, defined not by how well you think I do engaging with you, but by how exhausting it is pretending not to be.