Autistic Pride Day

It’s like a sensory difference, but the sense I’m missing is not one that I’ve seen named anywhere.

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April was Autism Acceptance Month, so I wrote a post about my diagnosis story, how I came to realize I was autistic, which required noticing that everything I had ever learned about autism was incorrect.

June 18 is Autistic Pride Day, so I’d like to talk about the reality of autism—my autism, anyway, since everyone’s experience is different. And Autistic Pride is about celebrating, rather than stigmatizing, medicalizing, or stereotyping people.

My diagnosis was an enormous relief, because it gave me a coherent structure for thinking about all the things that are so very, very hard for me that other people do without effort.

Why can I only be in a mall for an hour or so? Why do I need to wear sunglasses at the grocery store? Why am I only confident in social situations where I’m the teacher, asked to be there to teach?

But also, I realized that all my favorite things about myself are autism. My intense focus, my ability to think about complicated ideas without the interference of social norms or artificial boundaries between intellectual disciplines. The inside of my head is just about my favorite place to be. I can sit at my computer and think and write and play with ideas, moving them around and reshaping them, exploring how they change when I put them in different contexts, for literal hours at a time. I love the inside of my head.

Before I was diagnosed, I had lunch with someone who also wrote books. She talked about, ugh, what a struggle it was to get motivated to write and how hard she had to fight not to procrastinate or let herself be interrupted.

And I was like, “Hm that’s not my experience. I sit down at the computer and just lose three hours.”

She had a feeling about that, which I can’t explain to you because I’m autistic. (What is it like to seek commiseration and instead find someone who can’t relate to your problem at all? It must be… disappointing, right? Sad? Frustrating? Do you get a little mad at the person for not having your struggle?)

Sex education is my primary special interest. It’s not just that I love reading the science, it’s that I love learning about the most effective approaches for teaching that science to people, in order to make their sex lives better. I’m intrigued by the contradiction inherent in my special interest: It requires that I make a study of neurotypical folks’ learning styles and that I learn to speak in a language they understand. Metaphors, for example, which come pretty naturally to me. And storytelling, which does not come naturally to me at all. Long before I ever seriously considered that I might be neurodivergent, I told Esther Perel I had no storytelling instinct. She seemed surprised – probably because storytelling features so heavily in Come As You Are. But I had to read like six books about what stories are and how to construct them, so that I could include those stories.

Another place I love? The inside of my body. Sensory differences are a diagnostic criterion for autism, but that looks different for each person, because different senses may be hypersensitive while other senses are hyposensitive. For example, with the standard five exteroceptive senses (see, hear, smell, touch, taste), I’m hyposensitive to taste while my twin sister (also autistic) is hypersensitive. And in addition to exteroception, we have interoception, awareness of the internal sensations of our bodies. My twin has alexithymia, which is not uncommon among folks on the spectrum. It’s a bad name, because it sounds like a person just lacks the vocabulary to describe their internal experience, when in reality it’s very often a highly diminished awareness of their internal experience. They can’t describe it because they barely even notice it. I, on the other hand, have what I could call hyper-interoception. My body WILL NOT STOP TELLING ME HOW IT FEELS. And it’s great, I wouldn’t trade it for anything. Except while I was on SSRIs, I have never struggled with orgasm, because my body is really good at telling me how it feels and what it needs. And even when I was on SSRIs, my experience was not of a “struggle” with orgasm, but of a significant change in my orgasm, to which I had to adapt by exploring, curiously, what was true about my genital sensations in the context of all this extra serotonin floating around inside me.

And of course there are the social differences.

Oof.

With both the “special interest” aspect of my autism and with the sensory differences, I experience obvious benefits, in addition to the struggles. The social differences… it’s harder to find a benefit.

I’ve been trying to be okay at people for as long as I’ve been even marginally aware of my difference. I’ve been studying humans since I was 15 and picked up a Desmond Morris book (sorry, it was the ’90s). I have an undergrad degree in cognitive psychology (because of course my first interest was in human cognition, not emotion or psychophysiology), a masters in Counseling (because it took three years in a graduate program to teach me to listen and feel feelings), and a PhD in Health Behavior (kind of like public health) (because it took three years in a graduate program to teach me to understand how people make choices about their bodies.)

For many years before I knew I was autistic, I would joke that I learned how to have relationships by going to school and reading books about relationships. I decided my lack of skill originated in my dysfunctional family of origin. That story I told myself was part of why it took so long for me to realize my brain was different. My brain. Not just the family dynamics I was born into.

And while I find the social differences the most disabling aspect of my autism, they were the ones I was most willing to dismiss before my diagnosis. Allistic people talk about social interactions in a way that sounds superficially like the way I felt, so I didn’t realize that my internal experience was not the same.

“Oh, I hate small talk,” many people say. But they mean they find it tedious or boring. They don’t mean they feel like it’s a trial by fire where you have to prove your humanness or else you will be slaughtered for the alien you are. WHY DON’T PEOPLE SAY “I find small talk tedious,” instead of saying they “hate” it? I *HATE* small talk because it feels like a form of actual, literal torture.

Introverts like to spend time alone; I am definitely an introvert, which of course not all autistic people are. But neurotypical introverts don’t generally dread going to the grocery store because it means navigating a space full of people who are not all following the same rules, including some kind of conversations with the person at the check-out. Even the self check-out often involves talking to an employee because something goes wrong, because you’re buying alcohol, because because because… and so you procrastinate going to the store. Turns out, that’s not just introversion.

Anyway, because allistic people say things that superficially sound “a little bit autistic,” it was difficult for me to articulate how I experience social interactions like work meetings differently from introverts, people with social anxiety, highly sensitive people, and other folks who struggle in some way with connection. Here’s the best I’ve come up with so far:

It’s like a sensory difference, but the sense I’m missing is not one that I’ve seen named anywhere. In the same way people have different sensitivities to taste and smell, we have different sensitivities to social dynamics. In a conversation or in a group of people, there’s all this stuff happening, all these power dynamics, all this interpersonal play of emotion, all this subtext, this secret, coded meaning, and some people are intensely aware of it. They know what a subtweet is and why people do it. They understand and care about how others perceive them because they recognize and value social dynamics.

Many autistic people have (what I experience as) a deficit in the ability to experience and thus intuit social dynamics. I have learned by rote what feelings people might have in response to specific things I might say. And sometimes I am very wrong, especially when I anticipate that everyone will feel fine, and people ABSOLUTELY DO NOT FEEL FINE AND I HAD NO IDEA ANYONE WOULD FEEL NOT FINE.

This leads to the classic, “Wait, what? Did I say something wrong?” moment that sitcoms love, but let me tell you that in real life suck a bunch.

But even this does have a benefit, under the circumstances. Not long before I was diagnosed, an interviewer said to me, “It’s interesting how you answer questions and then you just let the listener have and process their feelings about that answer; you don’t try to cater to their preconceived ideas.”

She said it as a compliment (I think?). But my internal response was, “I didn’t know you were having emotions about my answer, I was just saying what I know to be true, to the best of my knowledge and ability. Should I be doing even more to anticipate what people incorrectly expect the answer to be and their feelings about the ways I violate that expectation? I thought I was already doing a lot of that work…”

But as a sex educator, part of my job is to be neutral and calm about things that give other people Big Feelings®. That, I have a lot of practice doing. I think my autism helps me to stand in a place where sex is kinda no big deal, it’s only as important as you make it, and you get to choose what you take and what you leave.

And I take pride in my ability to teach people about sex in a way that doesn’t rely on sexiness or cutesy innuendo or handholding while people move in tiny increments away from the lies they’ve been fed. If you’ve learned anything from me, my autism was part of that.

It isn’t easy to live with, but I would not trade my brain for a neurotypical one for anything in the world. Happy Autism Pride Day!

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Banner image credit: Autistic Pride Flag by Autistic Empire is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License. Based on this work.

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