4. "Currently"
Welcome to CHAPTER FOUR of #TechnicallyAutistic: Lessons from the Periphery, where I talk about my “working definition” of autism.
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Casey* and I were best friends for a year. We hung out every week and texted every day. We exchanged secrets.
Then one day, she stopped talking to me.
That was a long time ago, but I don’t remember doing anything wrong. Every time she had a new crush, she changed her clothes, hobbies, and interests. And still, the day I said hi to her across the hallway and decided that would be my last time trying, I had no doubt in my mind that my secrets were safe with her.
So last year, when I DM’d Casey on social media, it only felt natural. We were just kids, and there was no animosity. Casey said she was sorry for not being a great friend.
“I didn’t know who I was then, but now I have a better idea. Two years ago, I finally received my autism diagnosis, and I’ve just been working on myself… But honestly, I’d love to learn more, Asaka. How was it like for you?”
I paused, searching for the right words. I remembered being at her family’s BBQ party, facing away from everyone else and picking at grass as I told her that I was questioning my autism diagnosis. There was no clear resolution, and I was still stuck in that uncertainty.
“I’m also trying to learn myself” I replied, admitting that I still wasn’t sure if autism was the right word for everything I’ve been experiencing.
“How is it like for you? How do you think autism affects you?” I asked them.
“Oh, it affects everything.”
She sent me a picture — the first few pages of Unmasking Autism by Devon Price, a book that I have heard of on Instagram but never got the chance to check out. Price, an autistic psychologist, explains that autistic people are good at "bottom-up thinking,” where you go from noticing the finest details first, to spotting recurring patterns, and then forming a bigger picture, while non-autistic, or allistic, people are better at "top-down thinking," where you start with an overall idea and then pick out the details as you go. Price states:
If you want to understand Autism as a disability and a source of human difference at a glance, it's best summed up this way: we process in a careful, systematic, bottom-up way. Allistic folks, in contrast, make sense of the world in a very top-down fashion. They'll enter a new environment, such as an unfamiliar restaurant, take a quick look around, and jump to reasonable conclusions about how to order, where to sit, what kind of service to expect, and even how loudly they should talk.
[...]
Autistic people, on the flip side, don't rely on knee-jerk assumptions or quick mental shortcuts to make our decisions. We process each element of our environment separately, and intentionally, taking very little for granted.
Price’s description wasn’t as much of a surprise as it was a summarization of all firsthand accounts I’ve read, seen, and heard over the years, on books, articles, and videos.
In the book, Fall Down 7 Times Get Up 8, autistic advocate Naoki Higashida describes what was going through his head when he didn't help his mom get the laundry inside:
A million pitter-patter-pitter-patter sounds.
I wonder, What could that noise be?
Mom cries, “It’s raining!” Then the noise must be rain.
So I look out of the window…
…and watch the rain, mesmerized; yet as I watch now, I hear nothing; it’s like a close-up scene of rain in a silent movie.
Only now does the sound of the rain start to register.
I seek to connect the concept “rain” to its sound; I search for common aspects between all the downpours in my memory and the rain now hammering down outside.
Upon finding common aspects, I feel relief and reassurance.
I wonder, How come it’s raining now? It was clear earlier.
Up to this point, my mother hadn’t crossed my mind. Now she comes downstairs, saying, “That shower was on us all of a sudden, wasn’t it?”
I recall Mom running to the balcony to save the laundry.
How could she realize so quickly that it was raining?
Higashida is nonverbal and uses a letterboard to communicate his thoughts. But the thought process he describes are very common across the spectrum.
But autism, I’ve learned, isn’t about how much you know or how deeply you think; it's about what catches your eye.
Take a look at this TikTok by popular autistic creator Morgan Foley/@morgaanfoley:
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In Unmasked, Price also describes a similar challenge with decoding facial expressions:
When I look at a person's face, I don't simply see ‘happiness’ or ‘sadness’ radiating off them, for example; I see minute changes in their eyes, forehead, mouth, breathing, and posture, which I then have to effortfully piece together to make an informed guess about how they feel. Often, it's too much discordant data to make sense of. When I don't have the energy to carefully process others' emotional expressions, people are inscrutable to me and arouse a lot of anxiety.
Growing up, I heard teachers explain to students that the same way blind people couldn’t see and deaf people couldn’t hear, autistic people didn’t have the “sixth sense,” or the “social sense.” When I started going on the Internet, I kept hearing people say that autism is to “low EQ” (emotional intelligence) as to Down syndrome is to “low IQ.” Once I got into writing, adults marveled at how “self-aware and insightful” I was given my condition.
But autism, I’ve learned, isn’t about how much you know or how deeply you think; it's about what catches your eye. If your brain doesn’t pick up on things “at a glance,” then you might have a hard time in situations when you are expected to make quick inferences.
Social interactions, of course, are a big one because people communicate in at least two layers. On one hand, you have the literal, spoken message, what is said. And the other hand, you have the non-literal, unspoken message: how something is said or what is not said and what that means for “us.”
(Video by Pippa Hastings/@shewearssocks)
Sometimes, the literal message gives way to the non-literal message. People make throwaway remarks all the time, where they’ll just say whatever as an excuse to spend more time with you (“It’s cold outside.”, or to show you how they’re feeling through their tone and gestures ([*Sighs*] “My day went well.”) Other times, like when someone says “It’s okay, I don’t wanna talk about it,” with a tormented look on their face, their intended message to you may lie somewhere in between: I want to tell you more, but first, show me that I can trust you.
On one hand, you have the literal, spoken message, what is said. And the other hand, you have the non-literal, unspoken message: how something is said or what is not said and what that means for “us.”
Based on what I learned, it sounds like allistic people are biased towards non-literal communication, while autistic people are biased towards literal communication. I say “biased” because if there’s one thing I learned from interacting with people from different cultures, backgrounds, and generations, it’s that there’s no such thing as either/or—each social interaction is unique, offering multiple possible interpretations.
And no, allistic or non-autistic are not synonymous with neutral. Throughout history, autistic people have run so everyone else can walk. Many of the things we agree are helpful, like discussing wages at work or taking a social media detox, were considered socially unacceptable not long ago, and guess who’s good at breaking taboos? Autistic folks.
Shortly after catching up with Casey, another friend sent me a TikTok video from Simon Strange/@simonbstrange demonstrating how hidden meaning in social interactions can be missed:
When I was in high school, I said I couldn’t possibly be autistic, because I understood “social rules.” Even though I felt an overwhelming urge to speak out of turn or butt into a conversation, I still knew that it was socially unacceptable to interrupt. I might forget that for a second, but never longer. But that’s not really a good example, because “social rules” are more complicated than that.
In this skit, Strange never said anything that struck me as odd. The coworker on the receiving end of Strange’s actions might have felt hurt, but if I were watching the interaction unfold, I wouldn’t have thought, “They’re acting peculiar; they must have a disability,” like my classmates would have when they saw me trailing a group like a lost puppy. And who knows? Maybe that coworker was the least-liked person at work, and everyone else saw it and thought, “Good for them.” The point was that Strange never meant to come across that way.
That being said, I wouldn’t have made the same mistake, for the lack of better words. The second I heard “Hey we’re going out to lunch—” I immediately understood that the speaker was extending a “pre-invitation” like they explained later. I thought some of the explanations were a bit dramatic, though I think some of it might be for satirical effect. I don’t know that many adults—regardless of whether they’re autistic or not—who’d want to bend backward for people who took things that personally! I would’ve assumed that Strange’s character said “Oh nice, have fun” because they were busy, overwhelmed, and probably stressed with their own stuff. It never occured to me, however, that a person could interpret that initial “Hey we’re going out to lunch—” as anything other than a pre-invitation, or see “Oh nice, have fun” as the nicest possible response, because that was something I took for granted.
Strange’s suggestions made sense to me, though if I already knew I was interested in going, I would’ve gone “Ooh, where are you going?” without going into further detail because that’s easier (the restaurant choice wouldn’t matter unless it’s expensive, in which case I’d let them know I'm on a tight budget). So much of our social interactions aren’t about knowing your do’s and don’t but estimating your “it depends.” That, too, was another thing I’d taken for granted.
My concern is that I don’t have trouble with any of those things, but the people around me might think I do because I “struggle socially.”
When I turned to the comment section, I saw so many people sharing similar experiences of misunderstandings, some of which have cost them friendships, marriages, and even jobs. I felt so much admiration for people like Casey, who had to figure things out on their own and find themselves, after spending their whole lives being defined by narratives they weren’t even aware they were a part of.
At the same time, I couldn’t help but feel a bit lonely. These books, these videos, and these forums always did a much better job of describing how other people thought I saw the world than how I saw the world.
Ultimately, it took me back to square one.
In years of writing, people have told me, “Asaka, people want to hear stories. Not theories.” And that makes sense; I may have spent my whole life believing, for example, that autistic people didn’t understand social interactions at all, if I didn’t see specific examples of how different people might interpret the same situation differently.
Still, whenever I try to talk about how I personally experience these social situations and how it compares to everything I know so far about autism, I struggle to provide examples. Instead, I find myself wanting to hide behind fancy words. Social situations inherently involve other people, and writing about real people always makes me feel gross. I don’t want to use my platform to brag about how good of a friend I am or spread rumors about anyone, but I know it could come off that way. I also know that autism is a highly stigmatized condition, and I never want anyone to feel like I’m belittling their struggles.
These books, these videos, and these forums always did a much better job of describing how other people thought I saw the world than how I saw the world.
Sometimes I find myself saying “Unlike most autistic people…” when what I really mean is “most autistic people that the general public would compare me to.” I’m well aware that not every autistic person can attend college, or go to social gatherings. On the flip side, there are so many people who are one checkbox away from being qualified or dis-qualified for an autism diagnosis.
So even though I get tempted to say things like “If I was autistic, I would’ve…” I know I should say: “If all the points everyone has been using to justify my diagnosis actually added up, I would’ve…” (Emphasis on my diagnosis. Not your nephews. Or your friend’s. Mine).
The prototype of the Average Autistic Person™️ is fiction. The whole concept of “average” isn’t as useful as we think. In the viral TED talk, the Myth of Average, educator Todd Rose tells a story about researcher Gilbert Daniels who measured 4,000 pilots in 10 different size dimensions—height, weight, arm length, shoulder width—hoping to take stock of how many of these pilots were ‘average’ in all 10 dimensions and would fit a plane1
“The assumption was that many would be,” says Rose. “But do you know how many were? Zero.” (Also, what does ‘average’ even mean? Are we talking about mean, median, or mode?)
The same idea also applies to autistic people. As many people have already pointed out, the autism spectrum is a pie chart, not a scale:
(Graphic by Autism Sketches/@autism_sketches)
Every single autistic person that I've spoken to has told me that they struggle with "social cues," but even that is such a broad term. Some of them have a hard time detecting sarcasm, and some of them speak fluent sarcasm. Some people have explained that they have trouble reading emotions from facial expressions. Still, other people have explained that they can tell how someone’s feeling but get very anxious when there is ambiguity like “maybe” or “soon” on the table.
My concern is that I don’t have trouble with any of those things, but the people around me might think I do because I “struggle socially.”
When I’m struggling to get myself across to other people, it’s less that my words and gestures don’t come off the way I intended, and more that they don’t come out the way I intended. The issue here isn’t with the purpose or meaning of words or gestures. It’s about what it takes to summon my words and gestures in a way that makes sense to me—before it ever does to anyone else.
Because I take longer to gather my thoughts, it’s common for me to answer an open-ended question with a close-ended response, or a close-ended question with an open-ended response. On rare occasions—mostly when I’m talking to people I’m very close to—I’ll skip right through the most obvious point they’re making, but that’s because I forget that I only replied in my head and not out loud. That’s not the same thing as being confused about someone’s intentions.
Whenever I hear from autistic people who are similarly aware of how other people communicate and how they’re being perceived, the same 2-3 metaphors come up: I’m putting on my customer service voice. I’m wearing a mask. I’m walking on eggshells. To put it another way, they are actively studying other people and passively avoid trouble. But that’s not at all what I’m trying to do. It’s more like I’m passively noticing things and actively adjusting my behavior so that it conveys what I want it to convey.
In the glistening currents of social interactions, I'm like a surfer, constantly shifting my weight to restore my internal sense of equilibrium.
When I analyze social interactions, writing the unwritten, speaking the unspoken, and retracing my steps, I’m not doing it to translate the world to me. I’m doing it to translate myself to the world (and sometimes to myself: it helps me be honest about my insecurities and my motives).
And I don’t even mean this in an "I learned your ways, so it’s only fair you learn mine" way. Absolutely, friendships go both ways, and if I’m being honest, I wish that more people acknowledged the effort I put into showing up, taking initiative, and communicating. But any attempts, from mostly non-disabled people, to “meet me halfway” will only push us further apart if it’s based on the assumption that I fundamentally think differently about social situations.
I pretty much communicate in a way you may expect from someone without a disability but with some extra steps. The best thing you can do to help me isn’t to simplify things, or assume there’s no double meaning to what I’m saying (unless that works better for you, of course, and hopefully that is something you feel comfortable telling me), but to stretch your time horizon. Trust that even if I don’t respond to a social cue immediately, it’s already been noted and taken into account. And if I say something off, know that it could be you, me, or something I did 5 minutes ago.
When I analyze social interactions, writing the unwritten, speaking the unspoken, and retracing my steps, I’m not doing it to translate the world to me. I’m doing it to translate myself to the world (and sometimes to myself: it helps me be honest about my insecurities and motives).
In the glistening currents of social interactions, I'm like a surfer, constantly shifting my weight to restore my internal sense of equilibrium. It might take me longer to get into a flow state, and I don’t have the best control, but what comes around goes back around, and I’m solely going off vibes.
Thank you for reading CHAPTER FOUR of #TechnicallyAutistic: Lessons from the Periphery. Just a friendly reminder that this blog series is a work of MEMOIR. All pertinent disclaimers apply, such as:
- My narratives reflect the cultural context of the present year (2024? No way!) and my experience of growing up in the 2010s. If the world doesn’t change and I don’t change, then I’d be damned—we’d all be. Stay curious.
- I’ve made minimal changes to some names* and identifying details for the sake of privacy. I’d rather you not stay curious about that.
- I also used fictional names* for medications because different things work for different folks and I don’t want to interfere with anyone else’s path to wellness. (Do I have to tell you that I’m not a doctor?)
- But yes, this series contains depictions of mental illness that some readers may find triggering. Please take care of yourselves.
Now that I got that out of the way, a special shout-out to the best accountability buddies in the world: Dr. Harriet Hustis, for allowing me to start this project in a life-changing summer program, Nora Neus/The Longform Lab for supporting me through completion, and the journalism faculty of TCNJ for setting me up for success.
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