2. A Battleground

In my own words

Welcome to CHAPTER TWO of #TechnicallyAutistic: Lessons from the Periphery, where I talk about how my disability affects my day-to-day life.

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When I found out who I was rooming with for MUSE, I started an email thread. “Hi everyone!” I typed. “My name is Asaka, and I’m a rising senior journalism major.” 

I told them my project was about how “society categorizes mental disorders.” I gave them my number. I didn’t know that many people outside my friend group, but I’ve always wanted to branch out, and I was so excited to meet these new faces. 

Immediately, I got a reply from Naileny, a biology major. She’d be conducting experiments with worms to study genetic mutations that are responsible for glutamylation enzymes. We started texting. She was just as stoked as I was about the whole thing. 

Then, I heard from Kass, a computer science major who would be collecting data on virtual reality and cybersickness in children, and Franchesca, a visual arts major who would travel to New York City to take pictures.

This would be the first time I had a completely random room group. I looked them up on Instagram, but decided not to hit “follow.” I wasn’t sure if I wanted them to see my old articles about my disability, because I didn’t feel in control of that narrative anymore. I wondered which was worse: for them to just see the headlines, or for them to click the link in my bio, which directed them to a blog I hadn’t updated in a solid year. 

On our first day living together, I asked everyone when they’d be free to grab dinner together. “I also wanted to talk to you guys about my disability,” I said. No one knew each other and I couldn’t help but feel a bit smug that I was the one initiating. I’ve always thought of myself as more extroverted, but if I'm in a group with people who already know each other and have things in common that I don't, I become the quiet one. The brain fog didn’t help, but it was finally under control. This was a blank slate. But still…

I decided to start with the easiest part. “I have ADHD—I’m sure you know people that have it,” I said the last part quickly, scrunching my face to say, “Whatever. Anyway—”

“Well, I have an extreme version of it.”

Where, yes, it’s sometimes harder for me to pay attention and remember things, but it’s much better because I’m on meds, but I really, really struggle with disorganization. I mean, as far as rooming goes, I never had any issues with the chores (I actually enjoy cleaning the toilet) but sometimes I act differently because my thoughts are all over the place. 

“See how long it took me to gather my thoughts?” I chuckled.

I write because I’m afraid of thinking about complicated topics by myself, and talking about complicated topics with other people. Sometimes, when I try to talk about my disability, it feels like I’m operating a faulty engine with all the fuel in the world. My "ums” and “uhs” tick like a broken igniter, and my vague sentences vanish in thin air like a flickering, almost imperceptible spark that requires others to get uncomfortably close to continue the conversation. What goes unsaid turns into something forgettable and suffocating all at once, much like propane.

But I continued, “The biggest misconception that people have about me is that I have trouble with social cues.”

I told them what I usually tell people, which is that I might walk, talk, and move a bit oddly because I can’t accurately sense where my body is in space, but that I don’t have any trouble reading other people’s demeanor; and that very social person but can come off as withdrawn because it takes me longer to think and respond.

“If I’m the one initiating, it’s because I genuinely enjoy chatting,” I reminded them with a touch of humor. “If I had any issues with anyone, you would know. But seriously, you guys are so sweet."

And engaged, unlike many people.

“Makes sense,” said Kass.

“Yeah, thank you for sharing, that makes a lot of sense,” Naileny added.

I felt relief wash over me. “Of course, I’m glad it made sense. Ugh, thank you for listening.”

Naileny nodded. “I’ve noticed some things but I didn't want to be nosy. As long as you’re comfortable.”

This wasn’t said in an “I didn’t need to listen to all this” way, but moreso in an “I couldn’t tell if you were nervous, and I’m glad everything is alright” way. I smiled. The conversation felt like an experiment, and this was how I knew that it was worth it.

When I first started living on campus in sophomore year, I’d strike up conversations with anyone and ask for their Instagram. After a year of staying home and attending classes via Zoom, every opportunity for human contact felt priceless. But as the pandemic faded, so did our gratitude. By then, most of the upperclassmen had an established friend group and couldn’t be bothered to talk to people who weren’t friends with their friends.

It just seemed easier to avoid eye contact with everyone and stare at my phone, which made me a part of the problem. But if there’s anything interviewing people for class and doing outreach for Breaking Down Barriers has taught me, it’s that everyone was thinking the same thing: I want to talk to people but I don’t want to be weird or annoying.

As I explained my disability, Franchesca, the photographer, nodded observantly. Occasionally, she looked a tiny bit lost, but the warmth in her eyes was unmistakable — nothing like the vacant “You make no sense, but I’m walking on eggshells” stares I get from people. 

She drew in a sharp breath. “Oh, Asaka, you’re not alone.”

“I’m sorry, English is not my first language.” She told me she was born in Colombia and later moved to a predominantly Hispanic town in Florida. Four years ago, she’d decided to move to New Jersey to go to college, and adjusting culturally hasn’t been easy.

In a way, she told me, she could relate. She also loved talking to people — before COVID, she would travel, stay with Airbnb families, and sleep in airports — but socializing in college was overwhelming, with an onslaught of unfamiliar meme references, a packed schedule, and twists in sentence structure that left her thoughts in shambles (Later, she’d show me a clip of Gloria from Modern Family saying, “Do you even know how smart I am in Spanish?”).

“I know it’s not the same thing, but I also have trouble finding the right words. It’s at the tip of my tongue… Wait, is that how you say it?” 

“Yeah!” 

I understood everything she was saying.

“Sometimes, people treat me differently because I have an accent,” she sighed.

I speak in chopped-up cursives; a base of standard English, with a bit of a Korean and Japanese accent (heavier on the Korean, even though I haven’t spoken a single word in Korean), and a lisp that’s quite not a lisp. Back in my hometown, which has a large Asian population, people notice these subtleties. In Trenton? Not so much.

I couldn’t help but wonder if that affected how people saw me, too. Usually, people aren’t surprised when I tell them I have a disability, but once in a while, someone would say they would’ve never guessed I had a disability, and sometimes that sounds about right but other times that feels impossible. Maybe they pinned my “different” onto some imagined cultural and linguistic barrier.

It was muggy and gross outside, so we all brought our food home. As we laid our food on the kitchen counter, we also took a moment to unload our burdens, at least for a bit. All four of us took turns opening up and offering words of encouragement. We talked about what it was like to start college during COVID. We talked about times when we felt “different” whether it was because we had strict parents or because we couldn't afford something. We talked about the bureaucratic nightmare of "reaching out for help.” It was the first and last time we got to hang out as a group of four, but that night, I slept well.

My faculty mentor, Professor Hustis, gave me some books to read. The first on the list was Pathological: The True Story of Six Misdiagnoses by Sarah Fay. 

“This isn't a classic mental-illness memoir,” the book began. My head buzzed with untold stories. 

“That kind of memoir is a quest story. From the beginning, our hero is exceptional.”

I annotated each line with my parallels. 

This isn’t a classic “not like the stereotypes“ autism story. 

That kind of story is a redemption arc. In the beginning, our hero is ignorant, appalled by the suggestion that she could be on the spectrum.

“She's a debutante or a celebrity or a genius or at the very least she attends an Ivy League school when her enviable potential is dashed by mental illness. Her journey is extreme. She must leave the ordinary world in search of the elixir that will ultimately cure her.”

She’s a PhD candidate or a YouTube beauty sensation or a white-collar stalwart when her outgoing, charismatic façade is slashed by a nervous breakdown. Her journey is extreme. She must search for what made her feel ‘different’ her whole life and reinterpret every human interaction she had, in search of a ‘true’ self that will ultimately set her free.

“Trials hinder her attempts to find it,” Fay continues.

 “She's committed to a psychiatric facility. Or she becomes a professional mental patient, a victim of the psychiatric industrial complex.”

She seeks help and is sent home with a Lexapro prescription and some self-help book that gets her fired when she takes one of the suggestions too literally. Or she goes off the deep end, drowning in booze, snorting coke, and hooking up with random strangers.

“Of course she triumphs, ending up in the light, elixir in hand: accepting medication or getting off medication; finding true love or God; discovering her illness was physical (thank goodness!), not mental after all; devoting herself to meditation or some other supposedly natural remedy; or finding a brilliant physician or freethinking therapist who saves her.”

Of course she exhales, emerging from a 40+ hour assessment with an answer in hand: she is autistic. She sheds tears of relief as she finds out there is a name for what she is experiencing.

“On the book’s final pages, she’s no longer ill or has embraced her illness. She’s rejected her diagnosis or accepted it.”

On the book's final pages, she’s become a spokesperson for “breaking stereotypes.” She wants the world to know that she is successful because, if not regardless, of her autism.

”My path wasn't that clear,” says Fay.

“I went to a good university and may or may not have shown promise. I wasn't a professional mental patient. I wasn't a victim. Doctors didn't find a physical cause.”

I was enrolled in a special education program and may or may not pass as non-disabled. I wasn’t forced to suck it up and be “normal.” I wasn’t groomed. Therapists didn’t find an emotional cause.

“Many elixirs were tried: food, alcohol, exercise, various therapies, ‘natural’ remedies, and, finally, psychotropic drugs.”

All pertinent information was gathered: Wikipedia, Instagram, WebMd, TikTok, Tumblr, Buzzfeed, YouTube, Medium.

“The result was pain, monotony, confusion, and messiness.”

‘Explaining my autism’ is an oxymoron. Imagine taking a curious child through a grocery store: Yes, we also need olive oil, but let’s go down the list first. Nope, that’s a boiled egg, not a fresh mozzarella. Yes, that’s the same barbeque sauce on the advertisement but we’re having lasagna tonight, so let’s get tomato sauce first. Leave the lady alone, she doesn’t know the answer either. Come on now, keep with me.

This is how it feels to guide people through the information ecosystem around my disability because no matter what, it feels like I’m always sifting through disambiguations:

It’s less that…/it’s more that.

It’s not that, it’s just that…

I hate that I spend more time explaining what my disability isn’t than what it is, but that’s kinda sorta exactly what happens. 

My mind is a battleground.

I’m a talker. But talking requires more concentration from both me and the person listening to me. Holding down the beginning, middle, and end of a sentence feels like a fight against gravity, and I say things like “um” “like” and “okay, so” much more than most people I know.

I don’t always have the best control over my voice. On my better days, I speak with little effort but get pitchy between sharp breaths, which can make my voice sound scornful at times (My tone is more accurate when I’m only saying one word, like “Oh” or “Yeah” or “Right.”) On my worst days, even I find it hard to decipher what I said on recordings. My consonants are crisp, but my vowels fade in and out. It’s harder in large rooms, loud environments, and Zoom meetings (I’m not afraid of public speaking. It’s just that I’m much better at seeing than feeling where my body is in space, so when I know I have to project my voice in a specific direction, it’s easier for me to tense my neck than focus on my breathing.)

It’s easy for the signals between my brain and my body to get scrambled. In middle school, I did speech therapy so that I could pronounce my R’s and whatnot, but I struggled to apply it consistently. Recently, I started going to physical therapy to fix my poor posture, and for the first time in my life, I was able to move my shoulder blades! It helps me look more confident and I think it also helps me talk a bit louder because I can breathe easier.

Another place you might see the wires get crossed is in my facial expressions. As a journalism student, I sometimes conduct recorded interviews on Zoom, and I like filming myself for shits and giggles, so I’m used to seeing myself on video. Every so often, I would find videos of myself where I’m shown gawking and flinching, as if I’m bewildered, even though I could’ve sworn I gave 10 different knowing looks.

Sometimes, it’s just the concentration of speaking. Imagine someone intensely reading a stressful tongue twister: that’s the kind of expression you might see on me when I’m trying to explain something. And when my face isn’t caught up in that, it’s busy gesturing things like “Does that make sense?” or “Scratch that, let me try again.”

When I talk, my eyes wander a lot. I can’t help it. Sometimes, it’s frustrating because it looks like I’m rolling my eyes. I’m sure people can tell I’m not doing it maliciously, but I worry that they’ll underestimate my ability to understand facial expressions.

Maybe I’m overthinking, but I’ve seen social media posts from people who identify as autistic saying that they thought “rolling your eyes” only meant moving your eyes in circular motion, 360 degrees, because they took the phrase literally. There were hundreds of people commenting, saying that they’d been accused of rolling their eyes because of the way they broke eye contact, and had no idea that “counted.”

My involuntary eye movements are far from subtle (figuratively speaking, my eyes are on the ceiling), but I can easily detect much smaller eye rolls and whether that means someone is getting annoyed or is making fun of me or a third person or whatever the case might be. 

Recently, I noticed that I’m usually looking away when I start a sentence, or when I’m doing my “ums” or “likes”. That was when it occurred to me: people look up when they’re trying to remember something (like in those “thinking” stock images where someone has their thumb on their chin and looking up 120 degrees), which is exactly what I’ve been doing—trying to regain my train of thought or find the right word. Similarly, my eyelids sometimes flutter when my tone and expression shift, meaning that if I talk to you in a deadpan way while blinking consecutively, it’s less likely that I hate you and more likely that I meant to say whatever I said in a much different tone.

They say eyes are a window to the soul but if you’re me, it also serves as a screenshot button, a reset button, and apparently, a fuck/marry/kill dice. They amount of times I've accidentally given people—and random objects—cavernous, swooning, or hateful looks, because my eyes have spun out of control is absolutely ridiculous (The first two usually happen when I’m saying something that’s meant to be funny, and the last one happens when I’m nervous).

Though not as frequent, there are moments when my face completely draws a blank. It’s hard to explain. My baseline emotional state, like happy or angry, will still show on my face, but when it comes to more communicative expressions, like glancing or nodding to emphasize a point, sometimes my body forgets how to do it. It’s like my muscles are all knotted up, unsure of which parts of my face to relax and in what order.

Since my motor coordination is already precarious, any substance that slightly loosens or tenses my muscles can throw things off. I can’t even do coffee. I take several medications for ADHD and an unrelated physical condition, and even though that’s something I’d rather keep private, I’ll sometimes just tell my friends that I’m in the process of getting my meds adjusted because my demeanor can change, quite drastically.

Since my motor coordination is precarious, any substance that slightly loosens or tenses my muscles can throw things off.

Until fairly recently, I was on a SSRI (selective serotonin reuptake inhibitors, or a class of medication for anxiety and depression), which exacerbated everything. I was on it for a decade and spent five years on a high dose. I was a zombie. I was constantly drowsy and spent every waking moment daydreaming. My emotions were blunted and I had barely any facial expressions. Even though flat affect is a common side effect of antidepressants, it’s also common in autism, so no one noticed.

One of the major themes in Pathological is medication. I felt Fay’s frustration as she tried to put herself in an ill-fitting box, and this former AP Lang kid was entranced by her attention to rhetoric. I wasn’t sure how to feel about her refrain—that these diagnoses are scams to sell more medication—though.

Fay’s narrative is different from mine and from many others I know. But she makes astute observations, and I respect that she said what she had to say, without stopping to cater to a potential "But what about—.”

Fay’s journey starts when she is twelve. Her parents were divorcing, she was feeling anxious, so anxious that she could barely keep food down. Even though she has no desire to lose weight, she is diagnosed with anorexia. Her curiosity about her diagnosis exposes her to triggering content, which causes her to start purposely starving herself. As she grows older, she encounters more emotional struggles and is diagnosed with other mental illnesses. Though each diagnosis sounds more accurate than the one before, they ultimately hinder her, casting a shadow of learned helplessness. Medication offers temporary relief but leads to a cascade of scary side effects and unbearable withdrawals, making her feel worse and worse.

I was barely 12 when I was put on a SSRI. I was already going to therapy twice a week. But I couldn’t get out of my head. Phobias, fits of rage, incessant repetitive thoughts… You name it. Not to mention, I was convinced I was dying because of some puberty stuff (turns out my physical quirks were harmless but related to a serious connective tissue disease, soooo…). It was fine at first, but as I experienced more complications at home, school, and with friends because I couldn’t focus, they kept hiking the dose up, saying that I was anxious and just didn’t realize. 

In Pathological, Fay positions pharmaceuticals as the primary beneficiary of the diagnostic system. The DSM (the diagnostic statistical manual, the book used to diagnose mental disorders), she argues, is written so vaguely that almost any universal human emotion can be construed as a symptom of something. The lens of a diagnosis compels you to dissect every thought, feeling, and opinion you hold, wondering if you can trust your own perception, and if you have any control over your own choices. This is when Big Pharma comes to the rescue, offering a pill that supposedly allows you to take charge of your sickness and say hello to your true self beneath it all. 

This isn’t how it played out for me. I was anxious and didn’t know it at the time, and it wasn’t anything SSRIs could help with, but ADHD medication did. I don’t think it’s fair to suggest that diagnoses are just ways to throw random pills at you and hope it sticks. Autism aside, most people agree that I have ADHD and I suspected I had it, long before I knew that taking medication was an option. When I did start taking medications that were specifically made for ADHD, my life changed for the better.

Unlike SSRIs, ADHD medications work on different neurotransmitters called dopamine and norepinephrine. Many doctors already acknowledge that treating ADHD can resolve anxiety, rendering any additional medications unnecessary¹. I probably had too much serotonin. I know chemical imbalances can play a role in mental disorders because I experienced it firsthand.

A couple of months after quitting the SSRI, I had to decrease one of my ADHD medications, because it was starting to work too well. My mind was so still that I had nothing to look forward to. I couldn’t make the simplest decisions like whether to eat breakfast or shower first. I was literally tweaking; I regularly spent more than an hour on my computer revising the same paragraph. Every stroll on campus felt like my last. It wasn’t like I wanted to die. Life was passing by, and it was only when the despair became unbearable that I could spring into action: cramming, catching up, and planning for the future. 

I had to go on a much lower dose, and I’m glad I did, but going off of it entirely wouldn’t be helpful, either. My ADHD (and anything else I have that is being addressed by “ADHD medication”) isn’t about not wanting to be cooped up with humdrum jobs; it’s chronic brain fog that, for years, left me stranded in my own mind.

In my unmedicated state, my thoughts hop so rapidly that they blend into static rather than following a logical sequence. Mental images are hazy and fleeting, to the point I’m functionally aphantasic, with a first-grade level imagination. When I talk, I can sound like the “Have you ever had a dream?” kid and when I write I’m pretty much the “Oh absolutely, there’s something to be said” guy (and that would have to be on a computer, not a piece of paper; I literally can’t finish a single sentence from beginning to end).

Every time I listen to a lecture or read a book without medication, I have to constantly repeat, rephrase, and review things in my head to make sure that I understand. I can’t “just” listen or read; I can turn off my daydreaming, but that doesn’t stop me from focusing on the speaker's voice or admiring the font instead of absorbing the content. When this happens, I don’t realize that I missed anything until it’s my turn to respond.

I could listen to the same songs on repeat—I’m talking seven times a day for a week straight, but I wouldn’t be able to sing along without reading the lyrics (I’d remember the lyric of one line from the catchiest chorus and 3 half-sentences from the main verse, and I could barely hum the rest of the chorus without skipping a note).

Unmedicated, I can’t hear or see 50% of the things I could hear and see medicated. And out of the things I do notice, there’s a good chance I’ll forget 50%. It never ceases to amaze me how I got my ass to college, 100 miles away from home, when I was essentially walking around with a horse blinker.

I remember a couple of years ago, I would go to the farmer’s market, and I would stand behind a line for minutes, waiting without any progress, before realizing that I was in the wrong spot and asking someone else for help. Every time I went to crowded places, I always ended up with a red mark on my forearm from my parents yanking me out of the way just before I trampled a toddler or knocked over a baby cart.

Since I started ADHD meds, I’ve also found that it’s easier for my body to keep up with my mind. My reflexes are faster, and I can tune out little extraneous sensations, like my tongue resting on the roof of my mouth, or the weight of my head on my neck, so that I’m not tensing muscles that don't need to be tensed. It allows me to be more animated with how I talk and express myself, regardless of what it is that I’m feeling.

My improved memory also makes physical tasks easier. One of my favorite hobbies is fashion, and when I do my hair and makeup, I don’t make as many mistakes because I’m more aware of how I’m angling my face, gaze, arms, and mirror, and how my fingers hold my brushes. Some things will always take more effort, though—like using a curling iron, which feels like threading a needle with mittens on. I just need to take it slow.

The thing is, I still need to do certain things differently, and that’s OK.

Though I don’t struggle with conversations nearly as much as I used to, I sometimes need time to get myself in a flow state so that I can gather my thoughts. When I’m having a particularly difficult time gathering my thoughts, I’ll repeat the first half of the sentence while trying to remember the second one.

If you asked me to show you how to make pasta, I might say something like “To make pasta, you have to… you have to boil water in a pot—so, you fill the pot with water and then boil it. Then, you add the pasta.”  And then I’ll do my little recap: “But yeah, first, you're gonna fill the pot with water and then boil it on high for 10 minutes before tossing the pasta. I love the elbows! *Chef's kiss*”

Not only does that make more sense, but it’s just more me (that would be my “sparkly quote”, as my old journalism professor would say). Even though I don’t always struggle to this extent, going in circles has become an ingrained habit.

“I actually like that,” a friend told me recently.

“It’s a skill to be able to say things in a different way.” 

It was an extra dose of self-compassion I didn’t know I needed. Moments like this make me realize I’m more resourceful than I’d given myself credit for.

Compensation is a nuanced topic. I make decisions about my social life on my own, but a lot of people can tell something is going on because I’ll falter, buffer, or trip over my words. According to media depictions of autism, I don’t have the innate ability to “read the room,” so I rely on my excellent memory, unforgiving perfectionism, and psychology books to navigate the world. But this couldn’t be further from the truth. In most situations, my ability to “read the room” is the most reliable thing I have going on.

Tone, body language, and context clues matter in social situations, but so do facts, examples, and reasons, and that’s true for most people regardless of disability. At the end of the day, when you're having coffee with someone, you’re not just choosing between the "ask a question," "tell a related story," “bring this other thing up, but only as an aside” or "change the subject" button, or cranking the seriousness meter; you still have to bring your own questions, anecdotes, excuses, and jokes. These exchanges require a basic level of alertness, recall, and consistent exposure to the outside world that I’ve struggled to attain for a long time.

I know that I sometimes talk in an over-simplified way, or get loud or quiet in a way that doesn’t match the energy of the room. When I misspeak, it feels as though my mouth is a jammed printer, churning out distorted images. When I’m struggling to gather my thoughts, it can feel like rummaging through a disorganized closet. None of these things have bearing on my ability to see connotations—the ones that led up to the moment, and the ones I bring to life.

Anyone who has shared a common area with me has seen me start a conversation, go quiet, and then pick it back up two minutes later. My brain is aware of the cues signaling that a conversation has ended. My brain also loves to take its sweet, sweet time loading all the relevant and not boring information that would’ve been really nice to have three minutes ago. I know it’s like I’m holding open a heavy door for someone, slamming it in front of their face to catch my breath, and then opening it again—definitely a weird position to be in.

I don’t always want to acknowledge “I spontaneously thought about what you said and possibly for the last 120 seconds” to someone I’m not close to, so sometimes I’ll start over with a different, completely impersonal topic. That way at least, I can see if they're pleasantly surprised that I like them enough to talk to them again, or if they’re thinking, “Ugh, not again!” (Though that’s something I try not to do too much, because sometimes it just turns into an excuse for myself to keep talking, when we all have more important stuff to do.)

I’ve always described myself as “outgoing” since I was a teenager. But at the height of my brain fog, I couldn’t joke. I’m dead serious! The same way I couldn’t move my ears or whistle like some people can, I couldn’t joke. In order to bring some levity to conversations, I’d complain loudly (“It took me so long to put my shoes on today”), dramatically re-enact everything (“So I was like [insert dramatic gesture] ‘NO THANKS!’”), or feign shock (“No way! That’s a HUGE water bottle! I’ve never seen one as big as yours!”) to the point I came off as very mean. Making a big deal out of everything was the closest thing I had to a punchline. 

Now, I’m much wittier, but I still have moments where my thinking feels indescribably sparse. I can feel my thoughts heading in the right direction, but they stop abruptly, just like that, and I instead end up saying the bluntest and somehow the vaguest thing one could possibly say (which, I guess, is a talent in its own right, given how improbable it seems).

To give you an example: The other day, my new friend, Lily* picked me up to go to Dunkin’, and she kept apologizing for her driving. I haven’t touched a driver’s manual since I flunked my paper test at sixteen and generally don’t notice unless I feel there’s a safety concern. Like that one time an Uber was swerving like a deserter—he was rough. Compared to that, slow and meandering is nothing.

“Listen, as long as you’re not going to drive us into a pole, I couldn’t give two shits.”  

“I just got my license so I have a lot of anxiety around driving,” she replied. “You make it a breeze!"

I could’ve said “Don’t worry, you got it,” but I wasn’t in the mood for that. Sounded too preachy. My mind turned to a hypothetical driving trip. That was the vibe I was going for. A place that would be perfect… Real, or fictional… But nothing was coming up… So I blurted out: 

"Well, you can drive me anytime!" 

Uh oh. For a split second, I froze, looking for signs Lily felt pressured into giving me a ride every time I needed a ride. Seeing none, I cruised on.

l only keep score if the person in front of me needs me. A few months ago, a friend at school was telling me about a bad day. There wasn’t much I could do to help—she already had medicine and insisted she had to work—and not knowing what to say, I went on auto-pilot:

“My head hurts”

“Really?”

“My back hurts”

“Really?”

“My boss yelled at me again.”

“Really?”

At first, saying “Really?” can come across as empathetic—like, “Oh no! It’s not fair that this keeps happening to you!” But if you keep repeating it, it can quickly morph into, “I don’t believe you, you weirdo.” I sensed this, but I wasn’t sure what else to say. My friend knew that I had good intentions, and I knew that I would rather “Really?” than do “Aww” or “Uh huh,” which felt too dismissive. At least with “Really?” I could get her to tell me more about what’s going on, while I made a bigger mental note to check in on her later and prioritize helping her.

I’m grateful that throughout the years, and even over the last few months, I’ve become more proactive about managing life with my disability. I realize that in order to make the best use of my strengths, I have to practice discipline and learn new skills instead of solely relying on feelings.

I can still get impulsive when I’m socializing, but now I know that my impulsive tendencies come out the most when I’m on the go, like if I’m catching up with a friend before rush hour, or if I’m talking to a housemate before they’re going home for the weekend. If I wanted to have a healthy social life, I had to be intentional about budgeting my time, and actually put things in my calendar beyond just “text so and so happy birthday.”

I know that I’m able to be the most present in longer conversations—ideally, more than a few minutes, in the double digits so that I have enough lead time to defrost my brain, and circle back as needed. Since it’s much much harder for me to organize my thoughts when I’m engaging in physical tasks, I resist the temptation to start talking about big, important subjects while I’m walking at the mall or finishing my meal (it goes both ways, too: I need to be more mindful of rambling while my friends are driving).

I always say that I don’t have a “mental GPS,” because hopping from one place to another, whether it’s on my computer screen or in my bedroom, is harder for me. These transitions can leave me feeling drained throughout the day, even if I don’t realize it at the moment. I have a strict regimen to keep the dreaded bed rot at bay. This entails a weekly clothing organizer to reduce indecisiveness; apps that allow me to set reminders with the least amount of entering, exiting, and scrolling possible, including a timed checklist for cleaning my room.

Because I’m used to negotiating pushback from my own mind and body, and optmizing my uneven set of abilities, contradictions don’t faze me. But there’s one type of contradiction I’ve struggled to reconcile, which has to do with how society tries to classify my disability. Each litmus test for whether I “count” as autistic is backed by a system of words, definitions, and expectations that are at odds with one another and even itself.

And my reality demands a conversation that many people aren't ready to have.

“You don’t have to constantly explain yourself,” so many people have told me. “The people who accept you for who you are, anyone who’s worth being in your life, won’t think anything of it. Just be yourself!” 

Speaking of litmus tests — that’s got to be one of the worst. And don’t get me wrong: some of my strongest friendships have started with these four words: “Asaka, I didn’t even notice.”

But to suggest that if someone doesn’t feel the impact of my disability in our interactions, it means that either I won’t have to put in much effort or they won’t, is simply not true.

If a person doesn’t think anything of the way I act, it could just mean that they’re busy getting to know me in other ways, which is amazing. For once and for all, I can just be “Asaka” and not That Disabled Girl. Hell yeah!

But sometimes, I get the impression that the opposite has happened: my disability is all they’re seeing so far. When I’m hanging out with someone and I don’t know what to say, that feels weird to me because I see myself as a chatty, responsive person. And that’s when I would go, hey I’ve been struggling to think clearly but I love the vibes, let’s do this more. But to someone who’s already pegged me as the introverted, observer type? There’s nothing weird about my silence.

We all contain multitudes, but when you have a neurological condition, the gap between who you are on the inside and what you present on the outside can feel insurmountable. Whether people attribute “the way you are” to a disability or your star sign can feel irrelevant when you feel like you’re wrestling against an invisible saboteur that hides the full range of your wants, needs, and interests. Of course, this is the only brain I have, and I try not to cast something I can’t change, like my disability, as the enemy because it’s not helpful. But sometimes I get frustrated, too.

If a person doesn’t think anything of the way I act, it could well be that it’s not noticeable in general. I’m just so used to struggling and I forget how far I’ve come. But it could also mean that the person in front of me doesn't care about the same subtleties that I care about in daily interactions.

You know how the barista was being unusually chatty to the regular in front of me (aka she definitely has a thing for him)? You know how the librarian called my writing "interesting" instead of "fascinating" (aka she probably won't actually read it, damnit)? You know how everyone on Zoom collectively decided to turn their mic on, not off when that one manager gives the most redundant and useless advice (aka we’re all Well Aware and Are Trying Our Best, please)? A lot of these things I care about in the same way that I care that it’s stuffy outside or that it smells like pizza in here or that this Met Gala dress has a different vibe; a fleeting observation that remains just that, fleeting, if someone can put it to rest by saying I know right, but might linger if not — Huh. Am I tripping?

When other people don't see what I see, I don’t see that as a bad thing. No, not at all! Some of my closest friends are polar opposites of me. If I had to form a detective team, I know that I’m in good hands because I catch what they miss, and they catch what I miss.

I just get nervous because so many people have stopped talking to me, irked, if not dissapointed, by my sensibilities. I’m all too familiar with the way a new friend’s eyes grow distant as soon as I start reenacting what I think is an amusing or awkward encounter, or wink at them about something they might’ve also noticed. Sometimes they seem emotionally drained, almost as if I’m anxiously awaiting their feedback on whether I’m socializing correctly, when all I’m doing is sharing my take (and they’re not that different from takes I’ve heard other, nice, well-liked people make). Every time, it feels like they’re thinking: “Wait a minute. This isn’t what I signed up for! She’s too much.”

Not long ago, I turned to excessive gossiping because I wanted someone to tell me that I wasn’t too much. I use the term “gossip” very loosely here, but I’d just go up to people, and blather indiscriminately about situations involving other people in some way shape or form. I was never a slanderer or a secret-spiller; most of it was the sort of things you’d hear people talking about at your nearest cafe on any given day.

Still, it’s weird to talk about these things to people you barely know—and even to your own friends, if you’re not talking much about anything else. At many points in my life, I behaved like a Hater, capital H, because I didn’t have much else to offer aside from unoriginal compliments and barely relevant comments followed by “I don’t watch movies/drive/[insert any milestones I didn’t reach] but…” When I was talking about other people, that was my way of seeking out other people who could relate to this part of my perception that felt the least hazy.  

And as I write this series, talking about my life, my struggles, and my place in the autism conversation, I once again feel like the annoying girl trailing off: I don’t know, is it just me, or…? 

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Thank you for reading CHAPTER ONE 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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1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1896299/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4282137/

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