Neurodiversity is human
by Alix Adair
April is Autism Acceptance Month, and a few years ago this month I was saying out loud for the first time that I am definitely autistic. This year I want to take some time to explain my singular experience with my neurotype. There are so many different ways to be autistic--some of us are super verbal, some of us less so, some of us are extroverts and some of us are introverts, and our special interests are all over the place. But the things we share make us human and valid and real, and if you’re just learning about yourself, you need to know that you are all of these things as well.
It felt weird the first few times, like I was claiming a label that I didn’t “deserve” somehow, because I’m still on a waitlist for an official diagnosis. But here are the facts: the majority of the autistic community recognizes self-diagnosis because the majority of the medical community is still under the impression that we’re all skinny white cishet men who love trains and science. We are not.
In fact, a disproportionate amount of us are trans, nonbinary, or otherwise gender diverse--some of us even use labels like autigender or neuroqueer to describe the intersection of our autism and our gender.
Just like being trans, a lot of people tend to think that claiming a neurodivergent (that’s a word that includes other diagnoses like ADHD and OCD, and you can have more than one!) label is somehow “trendy” or being popularized by the internet and we’re making it up to be cool.
That always makes me laugh, because I have never been, nor will I ever be, cool. You can ask literally anyone who knows me. In fact, as a kid, I had a really angry soapbox about coolness and how useless that label was. (I had a lot of really angry soapboxes as a kid. I still do, but I’ve learned better timing for them, mostly. Hannah Gadsby, who is also autistic, describes this phenomenon in her standup special “Douglas” as “pufferfishing,” which means getting really upset over something that doesn’t seem to upset anyone else.)
I was always tracked into “gifted and talented” programs that I didn’t feel like I deserved. In kindergarten, I got extra homework because I already knew how to read. How fair is that? Some kid who’s normal like everyone else gets to go home and relax and I have extra questions to answer about books I never asked to read? I even got pulled out of class to do extra work. You can imagine how cool this made me.
In retrospect, it’s not at all surprising that I hummed and sang to myself a lot, or stuck to the side of the hallways so I could touch the wall as I walked. Stuff that makes you feel better by letting your energy out when you have a lot of feelings is called “stimming” by autistics, and I’ve done this my whole life. Allistics (non-autistics) do a bit of it too, if they tap their feet or bite their nails. I pull on my hair. You could track how well my day’s gone by how my hair looks, still. If it’s standing straight up, I’ve needed to stim a lot.
Stimming can happen when you’re really excited, like when I watch Jeopardy and it reminds me of my grandpa and how much I loved him because we’d answer all the questions together. It can also happen when you’re very upset, and all that energy just has to go somewhere. (Some of us stim in unhealthy ways that can hurt us, and this is one way we get misdiagnosed as borderline or depressed, if we’re self-harming. It can be hard not to scratch my fingernails on my arms or legs if I’m very upset, just to try to ground myself in space with my body.) Yeah, I’m definitely not doing any of this to look cool.
In fact, I remember winning some superlative award in eighth grade (probably “nerdiest” or “smartest” or something like that. It definitely wasn’t best hair.) and refusing it on principle. I tried again when I was salutatorian of my high school class, because to my mind, school came easy and I hadn’t worked hard enough to deserve it. They didn’t let me refuse that one, though, so I wrote an angry speech about how useless these labels were. (Weirdly, other kids really liked it and I was cool for like, a week.)
But no, I’m not telling you I’m autistic so you’ll think I’m cool. I’m telling you so that if you’re like me, you’ll understand that we’re both human.
It is a really common autistic experience to not feel human. Our emotions can be all over the place, and allistics keep telling us that we’re either over- or under-reacting. I cried constantly as a child because everything was so frustrating and confusing and the worst part was when I didn’t have words for what was making me feel that way. You can imagine how cool this made me with my peers.
Even teachers would take me aside to try to help me not be so weird, and I never listened. I knew that if I were making people laugh, then at least they weren’t tormenting me, so for some reason in eighth grade I drew on my nose at lunch every day with a blue marker. People thought it was funny, so I kept doing it. It distracted them from how I got better grades than they did, which I didn’t think mattered at all. In fact, when teachers called attention to it, I’d get really upset.
My thought was that I hadn’t put in any work, that school came easily to me, and so there was no point in complimenting me on it. Someone who worked harder should be complimented because they were studying and trying, and I was reading under my desk all day. (Sometimes literally. I’ve always liked to sit in a small space. Even in university I remember sitting under my desk sometimes, and people just shrugging it off because that’s who I was.)
Soapboxes. Principles. Where were we? Right. Human. You can imagine how hard it was trying to be me as an adolescent and also imagine that one day I’d be just a normal adult like everyone else, which is what well-meaning allistic adults kept telling me. “High school is hard for everyone. You’ll come into your own in college.” I do think high school is hard for everyone, because everyone is trying to figure out who they are. I kind of doubt that everyone is hoping the mothership will come for them someday and take them to their home planet, though.
Which leads us to Special Interests, or what a lot of us call SpIns. I was really into Star Wars and the idea of life in space in general as a teenager, and I read a lot of the novels based on the movies. I also watched the last ten minutes of Return of the Jedi, where you realize that everything’s going to be okay and everyone loves each other, every morning before school. This was at least a SpIn that aligned with pop culture for a bit, which was less embarrassing than previous SpIns (the Holocaust, World War II in general, Les Miserables, Broadway musicals in general…) seriously, nobody does this for cool points. Nobody. I guarantee you that memorizing all the lyrics to “Six Months Out Of Every Year,” from Damn Yankees, which has two intertwining main melodies, and trying to sing them both at the same time whenever I was alone in the bathroom, earned me zero cool points.
But it wasn’t, and still isn’t, about that. Good Omens, a book by Neil Gaiman and Terry Pratchett that was made into a series on Amazon Prime, has been my main SpIn for a couple of years now, and it’s about the way my brain lights up when I think about it. It’s spicy. I feel the sparkles and tingles in my brain when I write fanfic, or to this day when I hear a favorite song from a musical. The SpIn has generalized somewhat into general British humour and fantasy, and I’ve discovered that it’s incredibly satisfying to listen to any show or documentary with a British voice narrating.
The thing about Good Omens, and I promise I’m coming back to the point, is that it’s about humanity. Even though the characters are mostly angels and demons, the point is that they find their purpose in coming together to save humanity. They love the ideas of free will, imagination, and creativity so much that they defy the rules they were given in order to stand on the side of humans, as dangerous as that is for them. There’s something about that that appeals to my autism because the world and its rules can make so little sense, at times.
I spend a lot of time thinking and rearranging people and concepts into categories of good and bad. Someone I thought was good might say something awful and racist and boom, they’re bad. That’s really distressing for me because it’s like I just had the world figured out and now I have to redo all the numbers. Someone really mean might sincerely give me a compliment, at least it will sound sincere, with a smile, and it will throw me for days, because what if they’re not as mean as I thought? What if they did really like my hair? (Prooooobably not.)
When this happens, I usually call my mom, which let me tell you, at age 36 also does not make me cool. Luckily, she’s known me for a really long time. She wasn’t at all surprised when I told her a few years ago that I’m pretty sure I’m autistic, even though my official diagnosis is OCD (another neurodivergent label). I think OCD isn’t wrong--I do worry that I’m going to accidentally do something bad and hurt people, all the time--it’s just not the whole picture.
I think I worry about that, specifically, because I have a poor concept of a) what’s actually hurtful (not everyone is as sensitive as me) and b) what I’m likely to do (I’m probably not going to say awful things I don’t mean, just because they go through my head).
People will tell you that autism means we don’t have empathy. Ohhhh man, is that wrong. That is super wrong. I have SO MUCH EMPATHY. It doesn’t really help anything, but I have it. I’m always worried that our dogs don’t think I love them enough, or that I haven’t spoken to all of my friends recently enough so that they know I’m thinking of them. Here’s the thing: there are different kinds of empathy. Just because I’m terrified of hurting your feelings doesn’t mean I recognize immediately when you’re hurt. That’s affective empathy vs. cognitive empathy.
Cognitive empathy is what I struggle with. It comes out like “But WHY would they do such a thing? Who does these things? Why are they so ____?” I have a really hard time understanding why anyone makes a different decision than I would. I don’t want kids, so I really struggle to empathize with a friend who’s spent thousands of dollars on fertility treatments. I can’t just put myself in her place with the reasons she’s given me--it doesn’t make sense.
Again, when I struggle with this, I usually call my mom. She’s really good at understanding people. (She’s had to learn to speak me, after all.) She tries not to take it personally that I hate every single change she’s made to her house, her furniture, or herself since I’ve moved out.
Change is really, really hard. It took me years to be brave enough to try buying school lunch rather than packing my own, and a friend to stand with me in line and explain what happens behind the door when you go inside. When I lived in NYC, I would take three subways rather than try a crosstown bus for the first several years, even though it made the trip to my therapist on the East Side twice as long. You can recommend me TV shows and movies all you want, and they’ll go on my list, but honestly, I don’t watch anything I’ve never seen before. (Yeah, I can’t explain that one either. Eventually I’ll try some of them, maybe.) My favorite outfit is a pair of soft Old Navy jeans with a black t-shirt and a flannel long-sleeve shirt in Black Watch Tartan. I have several copies of this and I just replace them when they wear out. I wish it had been OK to just wear the same outfit over and over as a kid, but I was weird enough without a cartoon character wardrobe.
My point is that if you’re autistic, too, you can get to a place where you’re more comfortable than you are. You can stim as much as you want, you can wear your same clothes and eat your samefoods, you can use scripts in conversation--little phrases you’ve picked up that you know how to use if you don’t know what else to say--but it’s so much easier to do those things with other autistics. Allistics love us, but they don’t always get it.
I have a group chat with some of my autistic trans friends, where we check in most days and remind each other to eat, hydrate, and feel feelings even if they suck. We remind each other that it’s ok to say something and then be embarrassed, or only be able to react in memes, or need to plan out what’s going to happen tomorrow because it’s new and weird. It’s OK to say “I’m here and listening but can’t word well right now.” It’s OK to just send a whole bunch of hearts in the colour you know is your friend’s favourite. It’s OK to go “ugh frens, am thirsty but all the cups feel wrong.” It’s really OK to go “ugh what are bodies? Why are bodies? Just wanna be a brain in a jar.”
For over 30 years, I thought I was just really bad at being a human. Turns out, I’m just bad at pretending to be neurotypical. I’m excellent at being autistic. And that is pretty cool.