My hair is naturally jet black, so if I want a vivid color as advertised, I’d first have to bleach my hair. Bleach opens up the cuticles and strips the cortex of its original pigment. Then, I could go over with a semi-permanent hair dye (I stopped using permanent hair dyes because, in my experience, they don’t last any longer than semi-permanent dyes and only dries out my hair).

After watching numerous TikTok videos of hairstylists saying that Splat dyes were a “nightmare” to take out, I was SOLD. I got the shade Luscious Raspberries, a bright, almost neon red, rubbed it on my hair (which was partially bleached to a earthy medium brown) and slept in it, hoping for a pop of burgundy with minimal damage.

Sure enough, my hair rinsed out to a glossy burgundy. It was darker than expected, but I hoped that washing it again would reveal the vibrant red undertones, because that has happened before. But over the next several weeks, the color faded in a rather linear way, gradually returning to dull, mousy brown.

After I finally finished my memoir last week, I figured I’d touch up my hair. I decided to bleach my hair blonde for once and for all, and just use the burgundy hair dye I already had at home. If I started with light hair, I could achieve the advertised results, without having to mentally calculate the outcome of mixing dark brown with hot pink.

I figured that the bleach would wipe out the last traces of the Splat Luscious Raspberries, leaving me with a dirty blonde. Instead, my hair turned red. I thought that maybe the dye was coming out and sitting on the surface.

But when I stepped out of the shower, it was unmistakable: my hair was red. A bright, strawberry red. Orange in the janky dorm lighting, and slightly pink under the sun.

The past week, I’ve been crying almost every day. I wish I could tell you these were tears of joy.

But it’s unmistakable: they’re tears of sadness.

When I announced the release of my digital memoir last Friday, I thought that I’d feel relief. And I did. The fantastical part of me also thought I’d get more engagement from locals, more people asking questions about the memoir the next day I walked into campus, that I’d finally start creating a new narrative about myself. That didn’t happen.

Everyone I know is busy. Genuinely, so. One of my friends is going to law school. Another just got married. Another told me she couldn’t hang out because she’s so overwhelmed.

So am I. I’m graduating in December, which means I need to focus on career development. But I’m also desperate to recreate the active social life I missed in my younger years—trying to get the most spark from the last bit of college, the tail end of my youth. The good ol’ youth.

I have two months left before I pack my bags and forever leave this place, and the truth is, I’m not okay. I know that I will be okay, but right now, I’m not okay. Every day feels like a constant mental calculation of how much I should utilize the structured environment of college to build my resume, and how much I should just let loose and be silly because I won’t have this opportunity again.

Before I moved in, I packed more clothes than I need because counting the days would just make me cry. So far, I’ve spent half of it wearing the same black T-shirt and jeggings. I chose to go Goblin Mode during the final stretches of editing my memoir, and now, I feel like I have to look impeccable every single day before I have to tone myself down for a corporate job, but this morning, I didn’t even shower.

I told myself two weeks ago that I need a new mascara because I’m pretty sure I’m allergic to the one I have right now (my eyes are bloodshot, and I don’t think people would want to talk to me if they think I’m coming to class high as a kite). Last night, I browsed Amazon looking for a replacement, but I was hit with existential dread: should I save my money or splurge now before life gets any harder?

Oh, but it’s not even my money; it’s my parents’, and maybe this mental breakdown is the universe’s punishment for being a spoiled brat. At least, that’s what I told myself today, after I told my mom I was overwhelmed.

—Just focus on classes now, and look for jobs after you get home.

But I’d be too depressed to do that, when I get home.

—Why?

Because I’d be isolated.

—Well, you can go to the recreation center and find a hobby.

But is that really the same thing as being in a community with thousands of people. I’m already feeling really lonely right now, and I’m scared to find out how much worse I can possibly feel.

—Do you want to stay another semester? Because that’s all I’m hearing right now. But there’s only so much we can do.

No…

I understood easily that what I’m saying comes off as guilt-tripping. I just suck at being consoled. I wish I was better at being consoled. Of course it’s not anyone’s fault. Maybe I should’ve talked to other people but I feel like reaching out is overrated. Some of my old friendships fell apart because people kept telling me to ask for what I need. I needed them to check in on me first, so I’d know they genuinely wanted to help me, instead of just saying “Yes” because the opposite of yes is a no and no one wants to be the bad guy. But I guess that felt like I was putting even more on them. Maybe I would’ve felt the same too, if I were in their shoes. Ultimately, it meant that “playing mind games” got added alongside “trauma dumping” to their list of Why Asaka Was Never a Good Friend.

I’m grateful for the friends I have, and feel horrible when I catch myself making hyperbolical statements, like “I don’t have any friends.” I wouldn’t be who I am without them, and I shouldn’t take them for granted (Yet, I’m scared that so many of my friends are excited for the freedom that lies ahead, while I worry that I’ll feel more constrained. What if that means we’ll have even less in common once they settle into “normal” jobs and I navigate life as a “disability hire”? It’s not like I can go drive on my own to see them). I also don’t regret pulling back from past friendships that weren’t working, because I value my time and energy, thank you (But am haunted by the awful, nasty, and viscious ways I handled those situations, and the thought that none of this would’ve happened if untreated mental illness didn’t make me so damn unrelatable for the first three years of college).

So we’re using the word grief metaphorically now. I wouldn’t say I experienced pandemic grief but this mental health grief is knocking me off my feet.

As a writer, my dream was always to write personal essays and cultural commentary mixed in with general lifestyle advice—so basically, what you’d see in Vice or Dazed—but untreated mental health problems derailed my aspirations. I became used to writing about my struggles in a very specific way.

In my memoir, #TechnicallyAutistic: Lessons from the Periphery, I wrote:

What I thought would be a one- or two-time thing became a routine: survive an academic crisis, go home over the breaks, and write articles about how I got through it. This “disability writer” act was a marriage of convenience, signed with blood, sweat, and tears from when I had two choices: leverage my disability or give up writing.

After my medication was changed and I started leaarning new habits, my prefrontal cortex transformed. I found myself eager to learn, ready to absorb information like a sponge. Over a very short time, everything I’d been exposed to began to register in my head with striking clarity; lyrics I heard for years as sounds turned into recognizable words, and my writing became warmer, moving away from a detached, Wikipedia-esque tone as I recounted memories in greater detail. For the first time, I was talking to people with astounding ease and wrote because I was inspired by these interactions, and not because I needed to write in order to talk to people.

I began to revisit the idea that my writing skills could stand on its own, without the “Hey here’s someone with a disability volunteering to share a firsthand experience, and that’s more ethical than having someone without a disability report on it,” or the sensationalism of how I’m such a good writer for someone who could barely [insert “basic” task here]. I was excited to have a communal role that much bigger than my disability status.

You might be wondering, then, why I continued to focus on disability by spending another year writing a memoir on the subject that I’m now promoting it nonstop on Instagram. But is it really about disability? I wrote of the central question of the memoir, “What is autism?”:

The question has ceased to be a mere query and has instead turned into a plot device. The words that follow are a reflection of everything I’ve turned to—the good and the bad and the ugly—in search of identity and belonging as someone with an unusual disability.

When I was writing the memoir, I was 100% in control of my narrative. Honestly, I’ve wanted to do this a long time ago—to acknowledge the elephant in the room, OWN IT, and move on like a boss. But here I am. I might only have two months to be seen as more than just “that disabled girl.” I don’t know.

Now that I’m at a stable place, I’ve been poring over my resume, split between works in creative nonfiction and Accessibility capital case A, and thinking about how I can re-combine these passions in a way that would keep me stable.

Everything is getting realer by day. The tie between my writer creds—with my Thought Catalog/Collective World listicles and contributions to student media—and my “accessibility advocate” creds—with my involvement in the College’s disability advocacy initiatives and various “educational” articles on disability—feels even harder to break, with the addition of the memoir, which I’d say would be better described as a piece of art than a work of advocacy.

Some of the language I used in the memoir is rather colorful, and the whole thing is emotionally charged, which was a risk I knew I was taking. Basically, I talked about the lengths I’d gone to “own” my story, and the recurring experience of feeling alienated within disability advocacy, which left me feeling like “an outcast amongst outcasts,” and created rifts in friendships. Though so many people have told me to simply condense my personal stories about disability into a “service” article, these deeper reflections have made me question how sustainable that business model was.

If I’m going to take on the role of an “advocate,” I’d rather share practical advice that could make a tangible difference in someone’s life, than just serve as a symbolic token of inclusion. Even so, I worry that if I jump into it too soon, before I’ve written about other things, I might be jinxing it, like, if I had these [resources/tools/information] then I would've become a real writer, and I want to make sure you guys don’t end up the way I do. I know that’s a gross misrepresentation of all l the nuanced insights folks share in accessibility and the reasons why they get into that field. Selfishly, I’m struggling without the assurance that the life I’m living is a story, not just a theory.

I have gaps in my resume, and turmoil in my mind. I know that I sound melodramatic, but the mental health grief makes it hard for me to think clearly about my future.

Last spring, I persuaded my mom to allow me to live in an off-campus house in a desperate effort to remain close to the friends I’d be spending time with this semester, who would be graduating in spring (or later) instead of this December. I knew I’d have to leave someday, but I didn’t want to navigate the transition without friends, and I feared that would happen if I went home. One of the people I was dealing with wanted to negotiate a contract, but my mom, who handles the family budget, said no. Long story short, things got pretty messy, and I had a depressive episode. I was in the hospital for a week. For the first time, I saw my father cry.

The ordeal led to difficult conversations with my family, but I was able to repair my relationship with my dad—something I’d almost given up on. For the rest of the summer, I kept myself busy with finishing my memoir. It was the only thing drowning out the mean voice in my head that said I was an embarrassment and an awful person. It’s funny; the last time I went to the psych ward before that, I was in eighth grade, and I was finishing my memoir, and I decided to abandon the project because it was just too much. Sometimes, second time is the charm.

Opportunity is riveting, and my recent friendships have challenged the idea of “too late.”

Last week, when I texted my friend Alexa that I was having a hard time, she called me immediately. She drove over to pick me up, even though she was leaving for a business trip the day after. For the next two-plus hours, I was at her apartment, where she listened to me vent and I helped her pick out outfits for her upcoming trips. We had a class together last fall, we officially became friends two weeks before she graduated last spring, and I never thought we’d become this close.

My friend Noelle also called me. We went to high school together and weren’t really friends, but I always thought she had good vibes so I kept in touch with her on Instagram. We met up, and again, I never thought we’d become this close.

I’m not going to lie; as graduation nears, I feel sadness more than anything. I’ve felt this sense of finality before, and at times, it led me to resignation. But this time, my sadness fuels me to do something.

I started writing this a couple of hours ago. Usually, it takes me more than a week to write something like this. If this sounds like a stereotypical emo girl’s diary, so be it. I didn’t get to enjoy a lot of the things that come with being a teenager.

On that note, I’ll keep the red—for now. The "for now" is scary, but like most fearfully made things on this planet, it’s also beautiful.

Previous chapter

If I grew up in the 1960s, I would’ve been diagnosed with something called Minimal Brain Dysfunction, which is “characterized by evidences of immaturity involving control of activity, emotions, and behavior, and by specific learning disabilities involving the communicating skills needed in reading, writing, and mathematics”1

And if I went to Scandinavia, doctors might tell me that I have DAMP. And no, it’s not a joke. According to Wikipedia2:

DAMP (deficits in attention, motor control, and perception) is a psychiatric concept conceived by Christopher Gillberg defined by the presence of five properties: problems of attention, gross and fine motor skills, perceptual deficits, and speech-language impairments. While routinely diagnosed in Scandinavian countries, the diagnosis has been rejected in the rest of the world.

Diagnostic categories change over time. These labels are limited tools, not the end-all-be-all of understanding ourselves and one another. I don’t belong under labels; labels belong under me.

There was a time where it felt like my symptoms dominated every social interaction I had, leaving me in a hurry to either secure the “right” diagnoses or defend its absence. I didn’t want to be the who’s gonna tell her? girl. But with the right support, coping strategies and psychiatric care, I’ve been able to take control and buy myself time before having to have these conversations. And my mom said that if I get what I need, it’s all that matters. 

Sometimes, I need help, and I need to succinctly communicate what is going on. The jury’s out on whether I’m autistic, but I like to use more specific labels that addresses the most relevant aspect of my disability.

When I first saw a speech therapist in 7th grade, she said that I definitely had a speech impediment, and though I can’t find the paperwork, what I likely had (and have) a fluency disorder. My speech patterns perfectly match the description of cluttering, a condition that causes coarticulation, or slurring words together; disfluencies, aka fillers like “um” and “like”; and maze behaviors, which is when you stop mid-sentence to rephrase what you just said or add information you forgot to mention earlier. I also have accessory movements, which are involuntary movements that occur under the strain of speaking, like blinking, looking away, and tensing/jerky movements. Though accessory movements are more common in stuttering (which I don’t have) it all falls under the fluency disorder umbrella.

Everything I just described also match the description of social communication difficulties and repetitive behavior in autism. I do prefer telling people that I have a fluency disorder before getting into the autism thing. The former feels descriptive while the latter feels subscriptive. The concept of fluency disorder focuses on the practical challenges I might face when I’m communicating, without ascribing deeper meaning. The concept of autism, on the other hand, frames my worldview and communication style in a way that can be confusing that requires me to spend a great deal of time and energy clarifying.

Being diagnosed and treated for ADHD has changed my life. After all these years, I have yet to receive a diagnosis of dyspraxia yet but to hell with it; I have dyspraxia. While I’m not against self-diagnosis, I also understand it’s not something to take lightly. In my case, it couldn’t be any more obvious.

I struggle to keep my writing in a straight line and spill things when the people around me aren’t. I had delays in learning to tell my left and right, tying my shoelaces, and it took me long to learn to style my hair. IQ tests have consistently placed my visual scanning abilities within the lowest 2-5%. As far as DSM diagnosis goes, dyspraxia is one of the more measurable ones.

The only reason I didn’t receive this diagnosis, well, you got it—bureaucracy. Since my autism diagnosis already afforded me with all the accommodations that a kid diagnosed with dyspraxia would’ve gotten, an additional diagnosis wasn’t on my parents’ priority. Not to mention, some definitions of autism include symptoms of dyspraxia in it. 

Long story short, my chances of receiving an official dyspraxia diagnosis depends on whether I could beat those autism allegations. And I’m not wasting another second playing that game. What’s the worst that can happen when I highlight a set of symptoms that has the most impact on my day-to-day life? That someone gets catfished because I’m not sharing my full medical history? Ultimately, I reject the notion that my autism diagnosis carries some unspoken truth about me that I owe to the world. 

I’m divesting from my pet theory that my autism diagnosis was a mistake and investing in solidarity. Though many stories that are considered Good Autism Representation™ don’t resonate with me personally, they also help me, in a way.

As more accurate information about autism becomes common knowledge and outdated stereotypes fade, the more I can share differing perspectives without emboldening ignorant assholes—or triggering people who suffered at their hands. And if there are enough people out there with my neuro-developmental “profile,” maybe we could carve out a niche in the autism community. Or maybe we’ll push for a new diagnoses to create more awareness. Who knows?

Ultimately, I want to live in a world where we get to know each other as individual people, and not just by their labels. When I get too worked up about whether I am or am not autistic, I remind myself of other demographic brackets I belong to and how none of them have stopped me from connecting with people who are different from me:

1. We don’t have to know EXACTLY what something feels like, in order to emphasize, understand, and engage with someone else’s experiences.

I know this because I’m definitely not straight but very much care about my straight female friends’ men problems.

When one of my closest friends broke up with her boyfriend, I cried before she did. I’ve never dated a guy—or anyone, ever, as of now—but in that moment, I felt her sorrow. Another friend wanted my input on which guy in her DMs was worth her time. She’s a bit more traditional—but never judges anyone for being different—and I just want her to get back the kindness she gives to the world, in whatever form it takes.

Growing up closeted has taught me so much. I’ve had crushes on female friends, and know how hard it is to “get over” someone, because I’d get so weird and emotional despite being repulsed by the idea of actually being with them. I also know how powerful our desire for validation is, because I always wanted guys to want me, even when I didn’t want them. Even now; I hear a manly voice, and all of a sudden I’m high-pitched and giggly. What really made me reflect was when I hurt a close friend by leading him on. I kept flirting with him uncontrollably, despite not feeling much emotionally. He handled it with incredible grace and kindness, too.

Ultimately, these experiences have challenged me to build an identity outside the dating world. Those who know me don’t see my outsider status as a mark of ineptitude, but rather, a source of perspective.

2. Saying that I’m a part of ANY group doesn’t mean that I have to agree with every stereotype that comes my way—not even “positive” ones. 

I know this because I’m the nerdy Asian without the classic ingredients; a Kumon membership, violin lessons, and a megadose of filial piety.

My dad listened to NPR while driving me to therapy and my mom ordered me Scandinavian toys for Christmas. Honestly, my family has gone through so much stuff that the world will never know and even I don’t know 100%, but I will say that I was spared from the whole “my parents wants me to be a lawyer or a doctor” cards.

I’m not your Good Asian Girl. Never was. I became a raging workaholic and a smart-ass last year to make up for the years I lost to the brain fog. Allow me to once again cite a Hayley Williams quote: “Lucky for me I run on spite and sweet revenge.”

3. Even if I’m not fluent in the “social language” of another person, that doesn’t mean that they’re less capable of seeing, hearing, and understanding me.

I know this because some of my most meaningful relationships span linguistic and cultural lines.

A lifetime ago, I spoke Japanese better than English, and now I speak English better than Japanese. Despite this shift, my bond with my Japanese mother has only deepened.

Even though I’m not good at reading and writing in Japanese, I can intuitively grasp the nuances of different words. A funny (not) story: do you want to know how I realized just how desensitized we can be to violence in the United States? Words like “kill” “strangle” in Japanese make me feel uneasy, because I associate it with tragic news. But the word “kill” and “strangle” in English doesn’t evoke that same visceral reaction in me, because it’s used so casually as a figure of speech.

I've been able to form strong friendships with people whose first languages aren't English or Japanese. My best friend from 8th grade, Ilsa, moved from Pakistan due to her parents' job. She was only there for a year, but we were inseparable.

When I met Franchesca and she told me what it was like to learn to speak English, I saw many parallels with my mom’s experiences. Franchesca is a photographer, and you know what they say about pictures. That a picture speaks a thousand words. One of them, she said, is sublime.

“What is sublime?” I asked. (I only recognized that word from that band that sang Santeria).

“Oh,” she said, a bit taken aback.

A vast, indigo blue sky, lush greenery, and a sienna outcrop appeared on the computer screen. I got it.

4. NO diagnosis replaces the work of getting to know yourself, getting to know other people, and communicating clearly.

I know this because I feel like my ADHD diagnosis just makes sense, yet I sometimes need to do a little more explaining so that it makes sense to other people.

For example, many people with ADHD have difficulty with working memory and with “planning and prioritizing,” and so do I—but not always in ways someone might infer by observing me from a distance.

Two years ago, when I was working on one of my many incomplete essays at home, my dad, knowing that I struggle with working memory, suggested that I keep the instructions open in another tab beside me so that I won’t forget what to do. That didn’t help much.

In reality, my difficulty with working memory meant that I couldn’t keep up with the deluge of information coming from the endless readings and lectures. I knew that I had to set aside time to study on my own, but I didn’t know where to start. Not with the readings, but with routine tasks, like picking out my clothes, taking a shower, and deciding what to eat.

Really, I had no time, and like most people in a time crunch, I wasn’t able to think rationally. In that paper, I also stretched my arguments as far as I could to hide my gaps in knowledge.

I want to encourage people to be their own expert, no matter the diagnosis. One symptom listed under a diagnosis could easily be mistaken for another symptom listed under the same diagnosis, and everyone is dealing with something that people may not know about that, that may be completely unrelated to any diagnosis.

Anytime I say I’m not big on labels, I’m not saying it to shut down conversation but to make room for clearer ones. I’ve been mustering the strength to follow through and start some of these conversations, and here is it! I’ve done it.

When I started this project, I quickly realized that I was contending with two main challenges: my disorganized thinking due to my disability, and the dynamic nature of our media landscape, where everyone I spoke to had different knowledge level but have been feeling pretty overwhelmed with all the new information that was coming out. As a student journalist, I took this project as the ultimate test of my ability to articulate complex ideas.

If there’s anything studying journalism teaches you, it’s that you can always ask better questions. Even about a topic you’re still learning about, even about something that doesn’t affect you, whether you’re covering human interest or a press conference at a White House, you get a sense of what questions are good. In my opinion, “Maybe we’re asking the wrong questions” is probably the hottest thing someone can say.

As I write this, I’ve been asking this to myself: Now that I’m getting this off my chest, what will I write about? I don’t think that is a wrong question.

I’m not entirely sure how to best combine my passion for accessibility with my passion for writing just yet, but I’ll continue to use this blog to share personal reflections. Blogging has empowered me to have courageous, sometimes challenging (The most awkward one was telling an ex-friend who left me over my main character syndrome that she was a background character in one of my articles. She offered to talk things through with me, when she could’ve filed a restraining order against me for all I care. Bless her.), and always rewarding conversations with people that I otherwise wouldn’t have had. On social media, there’s a sense of choice, power, and freedom, on both ends, in deciding how and when to engage.

With this memoir, I’ve been able to explore the nuances of my experiences that I once thought were beyond reach. Now, I feel more confident in my ability to expressing my opinions on different topics. I have so much to say about personal growth, spirituality, friendships, cultural trends, healthy media consumption, and finding balance in life.

Sometimes, I know enough about politics to have an opinion; other times I don’t. Let’s face it, the world is a MESS. We’ve got jet-setters in suits, boasting a moral compass on a broken clock: loud as fuck, goes in circles, and can be right twice a day. Comment sections can feel like one step forwards, two steps back, with 10 people from 10 different algorithms using big words like "capitalism" and “Marxism” in 10 different ways. And, of course, local journalism is dwindling (great!).

The rest of us are quietly doomscrolling, ashamed of having the luxury to discern, knowing that someone is suffering at the end of the day. Some days I feel guilty for existing. But on our worst days we can remind ourselves that we can BE the change we want to see in the world.

Sometimes all the pro-this anti-that sometimes just feels like “love and light” in dark mode. As a culture, we tend to discus things vaguely, and exploring the media ecosystem surrounding my disability has shown me how deeply ingrained this issue is. We suck at pinpointing where our thought processes diverge, and as a result, we assume the worst about each other.

Though my focus as a writer will always be on sharing personal experiences, I also hope to use my voice to help society become less polarized. Depolarization, to me, is not about congratulating people for walking around with a white picket fence up their ass and yelling at other people to Be Kind. It’s about encouraging collaboration. Some of us are good at proposing practical solutions, while others work out failsafes and contingency plans. Some of us are good at holding the powerful accountable while others are good at addressing the fears of the misinformed. It’s easy to pledge our commitment to Who and Why, but it’s much harder to do the messy work of sorting out the Where, When, Which and How. We need each other, even when it doesn’t feel that way.

My journey through identity, belonging, and mental health is my forward momentum. But it’s also responsible for the doubting voice in my head that says, “But who am I to…” When I was struggling, I blew so many people off, broke so many promises, and said some very nasty things. People want to hear from someone who’s been there, done that, but for the person sharing, it’s petrifying. Sometimes it feels like I’m waiting for some factory reset where I’m clean enough to speak. At what point could I share my thoughts, observations, and concerns, and be seen as sincere—not a bad-faith argument or a last-ditch attempt to win people over?

The stark contrast between my writing skills, and my ability to manage most other things is like the archetypical kryptonite in every movie ever. It’s pure bliss, when strangers call you an asset, a shining example of what happens when a person with a disability can use their strengths to overcome their challenges. It’s sheer agony, when you’re staying up late crafting yet another apology text, wondering when the benefit of hindsight veers into the advantage of revisionism, when self-awareness turns into impunity, and you’re just another gaslighter for hire.

To be human is to be scathed. If being good was easy, then we would have world peace. I once read something on Instagram—I wish I remembered from who—that said we have two choices: confine ourselves to a fear-based life or move towards a value-based life, even if the path ahead seems uncertain. I won’t let my fear of being called calculating turn me calculating.

And so I write. I write defiantly and imperfectly, clinging onto the faith that this main character arc leads to an odyssey, not a psychological thriller.

Previous chapter:

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I left the womb nine weeks early, in a city that never sleeps. Since then, I’ve been in constant, wayward motion. 

I was born to a Japanese mother, a foreign-student-turned-immigrant, and a Korean-American father. They met on the West Coast, moved to New York to have me, and raised me and my little sister in New Jersey. We grew up teetering between many little worlds, with our multi-cultural, bilingual household as the pivot.

It wasn’t uncommon for my family to stay in Japan twice a year when I was little. If we weren’t going to Japan, it would be California to see my dad’s family. Or Canada to see my mom’s aunt. Riding the plane was torture. Within the first hour, I would always throw up, only occasionally distracted by TVs and games. Motion sickness drugs didn’t work, because it wasn’t the motion; it was the odor of the airplane that made me nauseous. But it was all worth it. 

I vividly remember my grandpa and step-grandma’s house in Hachioji, a suburb at the outskirts of Tokyo. The lumpy, olive couch where my sister and I tuned into NHK’s (basically, Japan’s PBS) morning segment; the sliding door behind the couch, leading to the tatami-style room that we unloaded our suitcases in; my grandpa’s old home office, which practically functioned as a library.

Leaving was always the worst part. Every time we boarded the bus to the airport, I’d bawl my eyes out. I told my mom it was because I missed grandpa but the truth was, my longing couldn’t be tied down to a particular person or a thing. Japan was my happy place. 

Once I was old enough to understand numbers, the calendar on the kitchen wall served as a reminder that nothing lasts forever. I’d run my eyes over the dashes marking our arrival date and our departure date, helplessly aware that whatever time remained would succumb to the same fate as the time elapsed. All that was left to do was turn the TV back on and forget. Thankfully, that always worked.

Up until third grade, I attended a private school that only taught Japanese (except for a biweekly ‘English’ class). The student-to-teacher ratio was low, and the retention rate was even lower. A typical preschool class had up to twenty kids; by sixth grade, that number would go as low as four. Some kids moved back to Japan because their dads’ work visas expired. Other kids switched to public school (rumor had it that they “forgot Japanese”).  Nonetheless, there was plenty of attention to go around and God knows I needed it.

If kindergarten had class superlatives, I’d be voted most likely to get lost during field trips. Any time I went too long without being directly spoken to, I drifted away into my own world — a kaleidoscope of books, animals, plants, and some more books. According to my mom, I’d be so lost in my reading that I didn’t even notice when recess ended. At playdates, I’d ditch my classmates and wander off into their older siblings' rooms to read their books. According to my mom, I got along much better with adults better than kids – unless they had sunglasses on. Then, I would run and cry (she denies any sunglass-related trauma).

My favorite activities was was snooping at the 連絡帳, a notebook that parents and teachers wrote on every day to exchange messages. These pages were full of shorthands (or Kanjis) that are typically taught in elementary school. But with some context clues, it was easy to find out what my mom and teachers were saying about me (I don’t remember much, but my mom kept mentioning that I was “very shy”, and my teacher often noted that I couldn’t sit still during nap time). By the time I was in first grade, I was at a sixth grade reading level. 

In all other departments, I lagged behind. I couldn’t finish a worksheet without my mom watching over my shoulders. When left to my own devices, I’d start doodling, and she’d walk into my room thirty minutes later, realizing the mistake she made when she left me unsupervised.

Math homework was the worse. I remember my mom spending hours trying to teach me how to subtract double digits, while I cried and screamed, arguing with her logic. The laws of mathematics felt magical in the worst way; utterly unpredictable with no rhyme or reason.

Doing my homework was half the battle; the other half was getting it to the teacher. I was always the last one to turn in my assignments. I was so busy playing with my eraser, doodling, and thumbing through my textbooks that I wouldn’t notice my classmates walking across the classroom to submit their work.

I also couldn’t understand how everyone’s folders were neat and mine wasn’t, while my worksheets from six different subjects from over a week ago were shoved haphazardly in my backpack and desk both at school and home. My mom kept telling me to put my belongings back where they belonged, but I thought that was one of those advices that no one followed, like “Floss your teeth twice a day.” A couple of times I tried to organize my stuff, I almost ended up late for my next class. Everyone else was on time. It was probably just a coincidence that my backpack was so messy.

I was clumsy. Every time I saw a ball moving in my direction, I flinched. My teacher kept reminding me that the rules of dodgeball did not apply to soccer or basketball, but every time I tried to play correctly, a slapstick sequence ensued. There was a thud, a crash, and aah, aah, aah... Those who spent enough time with me recognized my distress call (Once, a kid said that my name was Aah-saka — get it?).

At one point in second grade, I came across a passage in an encyclopedia that said people with autism “reacted to things differently.” I asked my teacher if I had autism. “That’s a good question. I’m not sure,” she replied. My mom also said she wasn’t sure. Ultimately, I didn’t think much of it.

A poster child of the expression, I do not wish to be perceived without my consent, I spoke in periods never exclamations, rarely looked people in the eyes, and didn’t call people by their name. Despite the occasional teasing, my classmates tried to understand. But I wasn’t interested. 

My parents scratched their heads. Unlike other kids who were shy, I had little regard for social norms. When someone complimented me, asked me if I was okay, or recognized me at a grocery store, I didn’t say “Thank you.” Instead, I ran and hid. One time, I lashed out at my mom’s friend, flinging my stuffed labrador-greyhound mix, Snow, at her at the checkout line, because she ran over to say hi.

My parents signed me up for weekly counseling with a therapist in New York City. They also had a learning specialist come to my school to give me a psychological evaluation. The unfamiliar woman pulled me out of class, asked me about my family, and made me solve a bunch of puzzles. 

“She said that she’s almost certain you have Asperger’s, but that she couldn’t diagnose you because she wasn’t a psychologist,” my mom recounted.

To my mother, pursuing a formal diagnosis was like beating a dead horse. The first page suggested I get assessed for Asperger’s but she was more interested in the next ten pages, a comprehensive breakdown of my IQ test scores. The report stated that I had the hardest time pairing letters with shapes, while I aced the vocabulary portion. It also noted that my attention span was shorter than what is expected for my age, though that was hardly a surprise.

“It didn’t matter to me what it was called. What mattered to me was that you got what you needed,” my mom told me.

In second grade, my grandpa died. I was in the room when my mom learned that he was in critical condition, and that was the first time in my life I trembled because I had never seen my mom in such a state of distress. But in a room full of sobbing people and an open casket, I found myself dry-eyed. I wondered if I was a cold-hearted monster.

Many kids at the Japanese school were there because of their parent’s jobs. Others were permanent residents; many of them were hāfu, a Japanese word (from “half”) meaning someone had one parent who was Japanese and another who wasn’t. That was the case for me, too. My mom grew up in Japan and came to the United States to study fine arts after getting a liberal arts degree in Japan; my dad grew up in Korea and emigrated with his family when he was in middle school. Like many others in her position, my mom wanted me to experience cultural perspectives and the individualized attention of a private school, before going to public school. 

When my parents dropped off transfer papers at Edward H. Bryan School, they gave the guidance counselor a heads-up about my suspected disability. She told my parents that they’d need more information — including proof of diagnosis (the psychological evaluation from the prior year had no official diagnosis in it) — in order to determine my eligibility for special education services. Then, they could talk about options.

The first few months of third grade consisted of watchful waiting. The teachers said that my English was excellent. I was too excited to meet new people and start a new life to feel sad about leaving my old school. The folks from the Child Study Team frequently visited the classroom with a clipboard in hand, though I highly doubt it was all for me — rumor had it that my class, 3N, was the worst behaved, and that the teacher, Ms. Nally, was stretched thin.

Ms. Nally always had this welcoming aura. Even after the contractors installed the Smartboards, she’d huddle us on the carpet to read us books. Once, she read us a book called The Junkyard Wonders. The story starts with Trish, a young girl horrified to find out she has been enrolled in a special education class known as “the junkyard.” 

Their teacher, Mrs. Peterson doesn’t flinch at the epithet. The junkyard, she says, is “a place of wondrous possibilities.” Soon enough, Trisha learns the truth about her classmates: a determined group of students, each brimming with triumph and talent. 

One day, Mrs. Peterson takes her students on a field trip with a mission: divide into teams, go through the junkyard, and collect anything that is useful. “Forget what the object was ... imagine what it could be!” she says. Trisha’s group stumbles upon an old model airplane, and after brainstorming different ideas, they transform it into a motor-driven drone they call Junkyard Wonder. The message of the book was unfamiliar to but intriguing: If the entire world insists on labeling you, owning it might just be the most powerful thing you can do. 

Ms. Nally introduced me to her colleagues. I introduced her to my microcosm, my little world of Snow and friends, my iffy home life, and my particularities, or feeling problems, as I would call them.

When my family brought home an actual dog, Pumpkin, I got irrationally angry that they weren’t doing things the way I thought they should. My mom would yell at Pumpkin when she started nipping, even though the training guidebook said to ignore that behavior. She also moved the pee pad to the back of the room by the patio door, even though I thought it was perfect right next to her pen like I’d seen in a magazine. To top it off, after Pumpkin chewed through the leash I picked out for her, my dad went to Shoprite and bought a hot pink one that clashed terribly with her collar, a dusty mauve. We spent therapy sessions negotiating early loans from my monthly allowances so that I could get new gear from PetValu or order a new guidebook to accommodate changing circumstances.

I also became increasingly self-conscious of my unusual cultural background — a mom that I spoke Japanese with, and a similar-looking dad with whom I spoke English with. Every trip to the pool or park was a battle because I didn’t want to be caught by someone I knew. If someone happened to eavesdrop on a conversation with my parents, catching me off guard, I'd yank my mom or dad by hand and bolt, sometimes throwing in a slap or a shove. 

Once, one of the folks from the Child Study Team asked me: if I were the only one who could communicate in Japanese in a life-saving situation, would I make the call?

"Yeah," I replied.

"Then why don’t you want to speak Japanese with your mom in front of people?"

"Because I want to save my fear," I explained (Spare the stress, I meant).

"Fear," she murmured, "can be overcome."

At that moment, her words felt like a personal attack. Who was I without my emotional reactions?

While other people based their identity on who they were to other people, I just felt like a sentient blob. I didn’t have an internal narrative. Randomly associated sights and sounds (think: Kiki and Boba), flickered in the background with zero commentary. And while others my age found fullfillment in their roles as friends, students, siblings, daughters and sons and whatnot, I found fullfillment in maintaining order.

So when Ms. Nally once said that I was going to be a writer, I didn’t get that. I wanted to be a dog trainer, because I thought I’d be good at it; over the summer, much to my family’s surprise, I successfully taught my great-aunt’s Border Collie to "down," "heel," "wait," and more (Previously, he could barely sit).

But she continued: One day you will be writing a book. And I’ll want a signature.

One of Ms. Nally’s colleagues was Ms. Martin, a brunette who always carried a brightly colored iced coffee cup and showed me pictures of her toy poodle, Mocha. One day, they told me that I was going to join Ms. Martin’s class for Reading and Writing from now on.

I didn’t know this at the time, but Ms. Martin’s classroom was a special education classroom, and I was there because my parents now had my diagnosis on paper. Or two. Up until its fifth edition, the DSM stipulated that a person couldn’t be diagnosed with autism and ADHD at the same time. One doctor had declared that I had ADHD; another declared that no, I had Asperger’s. Now, my parents were looking for a third opinion.

Thank you for reading CHAPTER FIVE 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.

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- 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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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.

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…? 

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.

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- 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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“... and autism,” I said at last, the word feeling heavy as I closed off the list of Everything I’ve Ever Been Diagnosed With. Not heavy like a book about incest and drugs and suicide, but heavy like a door that could never be fully shut or opened. Was there a key?

“But I don’t—I don’t relate to it,” I quickly added. I twirled my hair. “I don’t know.”

“So is it just the autism diagnosis that you don’t relate to?” she asked. She didn’t narrow her eyes.

“How come?”

My voice was airy, like a ditzy but earnest middle schooler, as I explained my daily struggles, which sounded like autism… but also not quite? And when I used clinical terminology like “motor skills,” I did so with an awkward but (hopefully) sincere hesitance of a nice old lady saying all the letters in “LGBTQ”.

I’d left my dorm, nonchalantly twiddling my fake lip ring (that I lost at a cafeteria a week later), but inside the four thick walls of Student Health Services, I sat up stiffly, as if my right hand was signaling surrender—"Almighty Grown-Ass Adults, have some mercy on me"—while my left hand was mincing words so that she won’t narrow her eyes: “Wait a minute. Who said that? What makes you believe that?” 

But her skepticism wasn’t directed at me when she replied: “Just because someone says something, that doesn’t mean it’s true. Doctors can be wrong, too.”

I nodded wryly. 

This has been my reality since I was a teenager: I carry this label, this diagnosis that so many people would readily accept as self-explanatory if not redundant, but feels confusing and ever so misleading from where I sit. 

My old therapist, Judy, would often say, “You’re a rare case.” Entering adulthood, one of my biggest worries was finding therapists who would understand my complex psychiatric history, which went beyond the typical “college female with anxiety and depression.” And how about my anger issues? The simple thought of sitting through a lecture about something I already knew, or having to explain to someone something I thought they already knew, made me combust.

By the time my insurance changed in sophomore year, my fear had quelled, thanks to a more widespread awareness of neurodiversity, or the variation of human minds. Over the next few years, I hopped between short-term programs offered by my school and large, high-turnover clinics advertised in Psychology Today, too busy to stress too much about having to explain myself.

“So you don’t identify with that diagnosis,” said Bryan*, my first therapist after Judy. Identify. That word felt generous. Maybe too generous, who knows? It also sounded pretty political. Some people don’t identify with a diagnosis because it could be used against them in court, or simply because they don’t believe in the psychiatric industrial complex.

My qualms were as individualistic as can be: I struggled socially, but not in ways that have been recognized by the autism community. Nonetheless, it felt existential. At the pit of my stomach lay this notion that I was an outcast among outcasts. That meant that I was doomed. Destined to be a loner.

I don’t always use the word “like” when I’m writing in metaphors, but it’s my go-to when I’m giving someone the tea: “I was like/She was probably like/It was more like [restate a comment in a different tone]/It’s like [insert rhetorical question]/But that’s kind of like [put comparable situation here].” Because that’s what poor Bryan* had to listen to, at least every other week—drama, drama, and more drama. Worse than middle school and high school combined. I couldn’t get along.

Time and again, I’d tell him, “This is what I mean. No one has been able to help me.” Bryan* had told me he didn’t specialize in autism, but once in a while, he’d chime in that all this sounded more like ADHD than autism. My next therapist, who worked as a school psychologist and now has a private practice dedicated to adult autism assessments, also agreed.

When I started seeing Brenda* this summer, I had already mastered my routine. “That diagnosis was given to me because of how I act—” I’d say, pausing until the other person gave me a sign that said, “I'm listening. Go on.” Then, I’d continue, placing my hand on my chest and stiffly shaking my head “—and not what I’m thinking and feeling on the inside.”

Brenda* told me she used to work in social services to help people with intellectual and developmental disabilities. She said that every person with autism is different and that autistic traits are more or less amplified versions of universal human experiences. 

“But if it interferes with your life, that’s when they diagnose you,” she said.

“I know, but it doesn’t interfere with my life.”

She gave me a curious look.

I explained to her that yes, I had my fair share of challenges, but related more to people with other disabilities in that regard. The copy of my childhood psychological evaluations in my portal didn’t say much. My internal landscape was teeming with thoughts and feelings that my younger self wouldn’t have been able to recognize.

“Ah!” she said, her voice blaring from my laptop speaker. “I see now. Have you ever looked into Global Developmental Delay?”

“No.”

“Because that could explain a lot.”

Global Developmental Delay (GDD) is a diagnosis given to young children who are "behind" in reaching the expected social, academic, or motor milestones. Apparently, it’s fairly common for individuals with GDD to catch up in some areas, while continuing to need help in other areas. If people with autism are marching to a different beat, then people with GDD are simply marching at a slower pace.

“I know you’re already diagnosed with autism, but if you qualify for Global Developmental Delay, then that diagnosis would replace the autism diagnosis.”

She said it like it was something I could ask for and receive, like a tretinoin prescription. I reminded her that I had been diagnosed with autism by at least three separate doctors and that fighting it felt like a waste of time. 

“The good news is,” she said, “An autism diagnosis can get you a lot of resources.”

That day in 9th grade when I pretty much begged my doctor to undiagnose me, I didn’t walk out of the clinic with a wild story like I hoped to. There was no climactic plot twist, bombshell revelation, or a Daily Mail article written about me (“It’s not the same,” says 15-year-old girl MISDIAGNOSED with autism). Just the doctor telling me that all the records checked out and that no further steps were required. There was nothing to see here and most certainly nothing to WELL, ACTUALLY… anyone with.

But I’m here today because I have an even wilder story to tell. One of my all-time favorite quotes is by Maya Angelou, and she said: “There is no greater agony than bearing an untold story inside you.” Isn’t that true? 

According to TikTok, this is my Roman Empire. And you know what they say about Rome.

I embarked on this journey over a year ago, as part of TCNJ’s MUSE (Mentored Undergraduate Summer Experience) program. I was paired with a faculty mentor, received a grant and a salary, and made new friends.

All my other memoirly endeavors have been one step forward, two steps back, and this project is no exception. But I couldn’t look back, no, not now. I worked like a maniac. I would stay up past 12, sipping an ungodly concoction of condensed milk, protein shake, and Ovaltine. My head hurt from staring at the screen all day and my fingers ached from all the typing. I learned that I could convert exhaustion into fuel by pretending I was freaking Alexandar Supertramp writing his last words. And yet, when the program ended, I only had two out of the eight chapters I’d planned to publish. 

When they sent me a form to vote for a t-shirt design and one option was “Adversity builds character” with (if I remember correctly) a stickman lifting a weight, I remember laughing because I thought it was a joke. Only when I revisited my project a whole semester later did I appreciate the true significance of that quote.

When I finally got the chance to resume working on my manuscript in early 2024, my first thought was, "Oh boy. I’m glad I didn’t publish it because this makes no sense." Seeing How Far You’ve Come is a double-edged sword, isn’t it? On one hand, it shows that with hard work, anything is within reach. Who knows where you’ll find yourself in 3, 6, 12 months? On the flip side, you can now see all the flaws in your old stuff that you didn’t notice before. You will cringe. And you start to wonder if you’ll feel that way about what you’re trying to do now.

But I knew that any flaws in my writing couldn’t possibly embarrass me any more than the fortress of chaos, dysfunction, and manufactured crisis I’d built to avoid the profound isolation of my disability. And when it all came crashing down, I was still living in the shadows of a diagnosis other people imposed on me, slipping in and out of the cracks nobody seemed to notice. Or care.

I had to transform my alienation before it transformed me. It was time to write. 

In my book (or at least in this “book”), “diagnosis” and “disability” are not the same things. Disability can refer to any number of mental or physical states that is at least a notch above mono or a broken ankle or ACHOO syndrome (yes, it’s real and I have it). Legally speaking, disability is “a physical or mental impairment that substantially limits one or more major life activity.” But otherwise, the rest is up to interpretation. Diagnoses, on the other hand, are the labels we use to further categorize disabilities, like “autism.”

In this Information Era, diagnoses primarily serve as search queries. Millions of people look up those terms on Google (or their nearest library) to locate information, communities, and resources. I wholeheartedly believe people when they tell me that a diagnosis saved their lives. Shared vocabulary makes it easier for people to reach out and work together to break through barriers.

Put differently, my diagnosis is to disability as a hashtag is to a video. If we’re posting something on social media, we might slap on some hashtags that it reaches the right audience. These bad boys make our experiences of scrolling through our phones more predictable. Searchable. Sharable. Sortable. But we’re talking about keywords. Not even key PHRASES or key POINTS. Key WORDS. If we outsource discernment to algorithms, we’re bound to miss some things.

For the past few years, my autism diagnosis has enjoyed the status of a “backup diagnosis” in my psychiatric records. My providers include autism in the section where they list everything I’ve ever been diagnosed with (for insurance purposes, I’m pretty sure), but not in the paragraphs where they explain why I’m seeking help and what I’m working on. 

“So you know you have something, but there’s not a name to it,” said my friend, Erica.

“I don’t know if that makes any sense,” I kept saying. But she listened, periodically checking for clarification: “…Is that what you mean?”

“I’m listening,” she reminded me, as she drove into the Starbucks drive-through.

And I lost it.

Tears poured out—a mix of gratitude and frustration that most other people didn’t understand, followed by guilt: what the hell was I doing, unloading my emotional baggage in the car of this girl that I barely knew?

“Asaka, it’s OK.” She put her hands on my shoulders.

“It means a lot to me that you were willing to engage in convo with me,” she wrote when I texted her later. “We’ll hang out again,” she told me—and we did.

That moment marked the beginning of the strongest—and perhaps most unexpected—friendship that came out of Feminist Disability Studies, a class we took together the semester before. Since that course was one of the options for a College Core requirement, it attracted an interesting mix of students, ranging from aspiring care workers looking to sharpen their understanding of intersectionality to a group of underclassmen in pajama pants who didn’t want to be separated from their friends. Everyone was so sweet and thoughtful and had something unique to bring to the table.

On the first day of class, I told everyone I had a disability myself, as did a handful of other students, but I didn’t want to go into the whole diagnosis thing. How could I talk about my situation, when I wasn’t sure what my audience already knew? And that has been the biggest way I’ve held myself back: feeling indebted to what is already out there.

I wish the public understood that a person’s diagnosis doesn’t have to define their disability, the same way they can understand that a person’s disability doesn’t have to define them as an individual. If someone says, “My disability is only one part of me, and not all there is,” it's an instant standing ovation. And if someone says, “Who decides who’s ‘disabled’ and who’s not? We’re all human and want the same thing,” they’ll get maybe a smaller nonetheless hearty round of applause. And that is to say nothing of all the beautiful people who regard disability as a central identity, no different than gender, religion, or nationality (In the Feminist Disability Class, we all learned to say disabled. Disabled. Disabled. Over and over until the word no longer felt dirty).

I just don’t understand why it’s so hard for everybody to understand that my diagnosis—or at least the one everyone chooses to focus on—is the least important thing about my disability.

As human beings, our values and decisions are shaped by our upbringing, our education, and a tapestry of intersecting identities. My disability has shaped the course of my life in not-so-insignificant ways, but what if I told you that my disability isn’t as important as you might think? 

Shocker, I know. And I’m not being facetious. There are a lot of “ifs” “ands” or “buts” that go into my disability that I certainly spend a lot of time talking about, online and offline. If I’m being honest, I learned from an early age that the only socially acceptable “excuse” for discussing my disability at length was to do so under the guise of “educating” the world.

Once I started high school, the adults around me sort of expected me to be a “disability advocate” first, and “writer” second. And that made sense. I was in the gray area of normalcy, where I wasn’t nearly as “productive” or independent as other people my age but well-spoken enough to appeal to some vague, abstract notion of inclusion. It seemed that awareness campaigns were my best shot at breaking into the media industry.

By the time I decided to pursue journalism, I was already well-versed in the disability “sphere,” so to speak—from hashtag movements to online debates— but these broader conversations reminded me that my lived reality was just a blip in the ever-expanding bodies of knowledge. My response was to become more nitpicky and argumentative with my writing, which reinforced my role as an “educator.”

When I started living on campus, I remember telling myself I’d write a few more blog posts ranting about my disability, and then move on. Even when I joined the executive board of Breaking Down Barriers, my college’s disability advocacy org, I wasn’t as interested in “spreading awareness” about different disabilities as I was interested in showing that disabled people belonged everywhere—in classrooms, in boardrooms, in society. After all, we were all here in college for a reason.

I, for one, wanted to become a magazine writer. If all went well, I’d write about lifestyle, wellness, and culture, and I’d talk about my disability the same way a fashion blogger might choose to talk about their race—sometimes confined in specific, practical contexts (like noting their foundation shade or curl type), sometimes driving deeper reflections (like discussing how representation helped or hindered their self-love journey), but not necessarily the main focus.

But all didn’t go well. I was struggling in all my classes. Badly. What I thought would be a one- or two-time thing became a routine: survive an academic crisis, go home over the breaks, and write articles about how I got through it. This “disability writer” act was a marriage of convenience, signed with blood, sweat, and tears from when I had two choices: leverage my disability or give up writing.

I’m proud that I kept going, and I’m endlessly grateful for the people who have supported me along the way. And still, every time someone told me, “I really like the personal angle, keep it up,” I’d freeze. When I’m done talking about my academic disasters (because this BETTER be the last), then what? What do I talk about? My childhood? My social life?

Every time I tried to write about these things, I was useless. Every thought felt like a tangled thread, where each attempt to untangle one knot only seemed to tighten another. Meanwhile, I had classmates introducing me to their friends as an “autistic writer,” and school staff emailing me about programs for people on the spectrum and I would panic. I didn’t know what to do. I started this project because I had to stop running.

MUSE was one of those things that changed everything, where you have “before MUSE” and “after MUSE.” There was the project, obviously, but there was so much more. Over the eight weeks, I met one of my best friends, attended a life-changing workshop on design thinking, and experimented with different methods to stay organized in a dorm setting like a mad scientist. These events set the stage for what would be the most transformative semester, and I couldn't be more grateful.

As I grew into myself, I’ve come to appreciate the fields of “disability advocacy” and “writing” as not just career opportunities, but as avenues where I could make a meaningful impact. Sometimes, I see that the places where I feel I can be the most helpful or useful lie outside the safe middle road that I’m used to, and navigating that in my senior year is as nerve-wracking as it’s exciting.

I feel the strongest sense of connection with the greater disability community when I’m working hands-on, doing what I call an “accessibility intervention.” When I was in Breaking Down Barriers, I was always tinkering with Google Suite, trying to come up with different systems to keep ourselves organized. Last year, I went from being practically bedridden to getting up every morning at like 7 and working on my computer for at least 3 hours a day. Nice words didn’t get me there. Practical solutions did. I had to recognize that my poor sense of direction was hindering my ability to focus. That realization alone took me 21 years to reach. Then, I audited everything from the vanity counter to my digital workspace to remove any unnecessary obstacles. This experience sparked my interest in designing and marketing products and services for those of us who learn and notice differently.

Yes, I draw from my personal experiences with my disability, but it’s not the same angle I draw from when I come here to write. And just because something is autobiographical, that doesn’t mean that it has to be a whole educational campaign and a half, you know? For example, I always get comedians on my Instagram Reels who tell jokes about growing up Asian. In my opinion, they’re not doing anything wrong, and they’re all much funnier than the stereotypical Asian sidekicks to white characters, but would I call them racial justice advocates? No. Sometimes, we just want to express ourselves.

As I once wrote: “If you’re going to put a criteria or a price tag on something like that, I want it to be based on artistic merit, not educational value. Otherwise, I’m afraid, I’d feel too much like a case study and not enough like a person.”

Telling stories is my way of celebrating being alive. I stand in my individuality by sharing things no one asked for, just because I want to. I celebtate community by highlighting acts of kindness and by showing the good in as many people as I can. I embrace growth by detailing how I changed over time and what I’m still trying to change at the moment. It all comes naturally.

I do worry that my muse (no pun intended), the Dillema of Diagnosis, could make me a “bad advocate”: SEO-unfriendly, not #hashtaggable enough, and unfit to represent the larger disability community. But the universe loves to play sick jokes, and mine just so happens to be that I have a disability that affects communication and haven’t been getting any mileage from the broader conversations attached to my disability.

The emotional toll of this is far too great to put into words. Just give me another day and you’ll see me get the last laugh. Or don’t. Right now, I’m tired.

 I don’t tell my story in order to convince you that my autism diagnosis was right or wrong. I tell my story because that’s all I have. Like Natasha Bedingfield said in her iconic song, Unwritten: “The rest is still unwritten.”

I’ll never get tired of questioning things, learning something new, and admitting that I’m wrong. But I’m tired of doing it alone. I’ve been told to educate myself and yet educating myself has left me with more questions than answers. You don’t have to believe that a particular diagnosis is an indictment or an admission of defeat to wonder if that diagnosis specifically applies to you, or better yet, to say: Hey, all of these words are being defined in such a confusing way. What am I looking at? What in the flying fuck is going on?

In my opinion, any attempt to dispel misconceptions and stereotypes about autism—or any condition for that matter—should probably start with this question: What is it?

What is autism? A spectrum, all right. A spectrum of what?

Many of us take this question for granted, and in this series, I will try to solve this question. And SPOILER!!! there is no answer!!!!

It’s a tale as old as time. The question has ceased to be a mere query and has instead turned into a plot device. The words that follow are a reflection of everything I’ve turned to—the good and the bad and the ugly—in search of identity and belonging as someone with an unusual disability. And maybe I’m not that rare. Maybe there are plenty of other people like me, and we’re just not talking about it because we don’t have the language for it—yet.

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.

Subscribe now

- 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.

Next chapter:

Previous chapter:

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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:

1. A million pitter-patter-pitter-patter sounds.

2. I wonder, What could that noise be?

3. Mom cries, “It’s raining!” Then the noise must be rain.

4. So I look out of the window…

5. …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.

6. Only now does the sound of the rain start to register.

7. 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.

8. Upon finding common aspects, I feel relief and reassurance.

9. I wonder, How come it’s raining now? It was clear earlier.

10. 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?”

11. I recall Mom running to the balcony to save the laundry.

12. 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.

Take a look at this TikTok by popular autistic creator Morgan Foley/@morgaanfoley:

@morgaanfoleyBottom up thinking is a common autisric trait and its why it might take us longer to process things #actuallyautistic #asd #bottomupthinking #autistictraits #neurodivergent

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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.

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.

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.

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.

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. 

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.

Subscribe now

- 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.

Next chapter:

Previous chapter:

Next chapter / Previous chapter

One of my closest friends, Angie*, told me she’s in the process of getting diagnosed with autism.

Even when I was practically housebound, our friendship remained strong. We’d sit down and talk, or even just text for hours. We talked about many different things, mostly, people stuff: family woes, Karens at work, and countless embarrassing moments that would end us if anyone else found out, but somehow felt less embarrassing when we told each other about it. Sometimes we had different opinions, but these disagreements never felt like fights. They were just as benign as another pair of friends debating over who the hottest person in The Bachelor is.

On social media, it’s hard to see the nuanced reality of autism. You can (and should!) Listen to Autistic Voices, but it’s still Zuck’s world, and you’re going to see a whole lot of emotionally charged, hyperbolic statements and sensational stories, because clickbait sells, baby. Unplugging and spending time with diverse people has reminded me time and again that we’re all human, and that the cutoff line between “autistic” and “allistic” (non-autistic), is so insignificant in the grand scheme of things. Just as it wouldn’t matter if Angie is autistic and I’m not, it wouldn’t matter if I were autistic and my other friends were not.

And sometimes, I wonder: if you took my labored speech, my jumbled reactions, and my awkward pauses—put it aside, even just for a second—and focused only on my internal thought processes, would there still be something different about me that mark me as autistic?

I used to be so sure of my answer—that I was non-autistic on the inside; I was just another girl with ADHD, but with the severity cranked up to the max and some extra motor issues—but now I’m not sure anymore.

I know that autism, in its most subtle forms, are indistinguishable from personality traits and only becomes disabling when the person is under extreme mental or physical stress. I’m definitely eccentric, and it’s entirely possible that I’m one of those people with latent autism who could still benefit from additional accommodations to optimize their well-being.

It’s hard to say, because my outward presentation skews the metaphorical algorithm. Let me explain:

A common exercise recommended for adults struggling to accept their autism diagnosis is to “try on” accommodations used by other people with the diagnosis. Often, this leads to a revelation: “Oh my goodness, I feel so much better! I can’t believe I was living life on Hard Mode all this time.” So if I’m wondering whether autism affects my social life, I might start by telling (not ignorant) people, “Hey, I’m autistic, and I find it helpful when people are very direct with me and let me be direct,” even if those words feel foreign to me, and see what happens.

When I say these things, I’m basically giving people an algorithm: I’m highlighting a pattern and drawing attention to anything that fits that pattern. This is where things can get very confusing. For example, my unreliable tone or impulsive remarks (nothing mean, but just awkward) could easily be taken as an instance of me being unaware of subtext. So can my struggle to “get to the point” while talking or providing sparse details during social conversations. The algorithm will EAT this up, distorting people’s perception of like, how direct are talking here?

When I tell people that I identify with certain autistic traits, what I say has entirely different implications than if someone like Casey* or Angie were to say the same things. Even if I look at my life and recognize enough Autism Moments—and that is a real possibility—having that understanding reflected back to me feels like a futile endeavor.

The idea of being allistic “on the inside” might raise some eyebrows, but it was something that occurred to me as I educated myself more on autism. Like I said, my thought process was: So you’re saying that not everyone who is autistic acts A Certain Way, because autism isn’t about how the world sees you; it’s about how you see the world. But wouldn’t that mean that the opposite is also true? That not everyone who acts A Certain Way is autistic?

According to queer autistic scholar Nick Walker, there is a deeper, third layer beneath it all that I haven’t touched on yet. On her blog post, WHAT IS AUTISM? , she writes:

The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

So much of the current conversations on autism challenges the view that autism is a social DEFICIT and not the view that autism is a SOCIAL deficit. But Walker says it makes more sense to see social differences as a “by-product,” rather than the defining feature, of autism:

An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development.

What Walker said about autistic people registering more information lines up with the descriptions of “bottom-up” thinking, where your brain recognize the smallest details first and work its way up to the bigger picture, spending more effort on filtering out irrelevant information. Now that I think about it, all the examples of bottoms-up thinking that I couldn’t relate to only talked about the social- aspect. Social cues. Social dynamics. Social rules.

And, as you might expect, the focus was always on interpretation, with no mention of how it could impact communication independently of that: Struggling to “read the room” because you can’t keep tabs on everyone’s facial expressions? Nope. Having to translate common turns of phrases (“Like it’s getting late” to mean “Let’s end the conversation, time for closing remarks”) in my head? Can’t relate. Unable to assume things about other people? I wish.

Clearly, I don’t process incoming information in a bottoms-up way. But I can recognize some elements of bottoms-up thinking in how I notice and describe things that happen inside my head:

Although I can quickly guess what someone probably means when they say something, I take longer to clarify what I mean. When I say the same things over and over, each rephrase is better than the last, and when I write, I usually have to cut down my first draft by at least a half. If I get in a fight with someone, I usually go through at least five rounds of internal debates to be able to summarize my position—“I don’t take an issue with A, but I have an issue with B, because reasons D, E, F but mostly E.” Doesn’t that mean that my brain is manually sifting through each piece of information (bottoms-up thinking), instead of skimming (top-down thinking)?

And though I can usually read body language at a glance, my body language might be harder for other people to read. My body isn’t the best at handling two things at once, like looking straight ahead while looking for words, or eating while facing a person. I also wear special glasses (prism lenses) so that my left eye and right eye can look at the same direction, and if I wear regular glasses, I can’t make eye contact at all (if you want to know what this feels like, try holding your hand up perpendicular between your eyes). Doesn’t that mean my brain is processing sensory input in separate parts (bottom-up thinking), when other people might experience it as a unified whole (top-down thinking)?

“I believe that the best way to understand autistic minds is in terms of a thinking style which tends to concentrate resources in a few interests and concerns at any time, rather than distributing them widely,” writes Fergus Murray, an autistic educator from the UK, on his website, monotropism.org.

There, Murray explains monotropism—an idea developed by his mother, psychologist Dinah Murray—which he claims “explain[s] many features of autistic experience that may initially seem puzzling, and shows how they are connected.”

The theory of monotropism suggests that allistic (non-autistic) people are polytropic, meaning they focus on many things at once, while autistic people are monotropic, operating from an “attention tunnel” where they focus on one thing at a time.

It’s easy to see how a monotropic brain would favor bottom-up thinking, where you carefully examine one thing at a time to form a conclusion, rather than looking left and right for context clues. But if I’m understanding this correctly, a person could use tops-down thinking in any given situation—so maybe, they “read between the lines” more than “hang onto every word” in their conversations with people—and still be monotropic if they aren’t attending to other things going on in their life.

When I get tired, I automatically turn off the methodical part of my brain, before I turn off the social part. If you catch me when I’m cooked, you might hear me chuckle "Quite a mouthful, isn't it?" and start a side conversation while someone is still writing down the name of a band I spelled out for them, or rush to open a door for someone as a friendly gesture only to stand right in their way. This doesn’t mean that the expectation to be “social” is maiming me (unlike what sensationalized stories about “masking” might suggest); everyone has different strengths and weaknesses. If someone like me could be considered autistic, then perhaps the next frontier in autism advocacy is to hold space for different ways people may channel their attention tunnel, and eliminate the idea that one way is more authentic than another.

Cognitive resourcing is a fascinating thing. Ever since I could remember, I’ve struggled to understand the motives of characters in books and movies, which puzzled me because I was good at symbolism, historical context, and things like that. Then, one day in my senior year of high school, after I got a poor grade on an essay, I went to my teacher for help. She started talking about all these location changes and legal and financial proceedings that I didn’t even realize had happened. It turns out, I’d been accurately identifying the emotional state of the characters, but completely misunderstanding the sequence of events that led up to it.

A few weeks later, the school made me take an IQ test so that I had an up-to-date documentation that I could use to apply for accommodations for college. In the final report, my evaluator concluded that my comprehension issues was a reflection of my ability to remember words, than my ability to infer meaning:

Because learning often involves a combination of routine information processing (such as reading) and complex information processing (such as reasoning), a weakness in the speed of processing routine information may make the task of comprehending novel information more time-consuming and difficult for Asaka. Thus, this weakness in simple visual scanning and tracking may leave her less time and mental energy for the complex task of understanding new material.

With all that being said, I was still experiencing this as a comprehension issue, and not a visual one. When I was reading books, I wasn’t thinking, Ugh, not me skipping a line again or What does that word mean again? Instead, I was making wild guesses about the story itself and then taking a nap because I was so damn exhausted. Disability or not, so much of what happens in our brains is outside of our conscious awareness. Knowing “why” can be helpful in one context, but in other contexts, it might be completely irrelevant.

The human species is unique in our tendency to seek meaning in everything. It shouldn’t be surprising that two individuals with the same functional disabilities may make sense of their circumstances differently, resulting in widely varied subjective experiences. People with hearing conditions have grappled with this, too, and they’ve adapted their vocabulary to address it.

If you started to notice more people spelling “deaf” as “d/Deaf” that’s why. “Deaf” with a lowercase “d” refers to a physical state of not hearing, while “Deaf” with an uppercase “D” refers to a cultural identity shared by people who do not hear. In the United States, Deaf people use American Sign Language and observe distinct social norms, which includes prolonged eye contact, a blunt manner of speaking (signing), an emphasis on physical touch, and lengthy goodbyes (at gatherigs, people may linger for an HOUR after saying that they are leaving. Sign me up—no pun intended!). In the book, Deaf in America: Voices from a Culture, Carol Padden and Tom Humpheries write:

The members of this group have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society.  We distinguish them from, for example, those who find themselves losing their hearing because of illness, trauma or age; although these people share the condition of not hearing, they do not have access to the knowledge, beliefs, and practices that make up the culture of Deaf people.

When I think of it this way, I could be autistic (or have autism, I wouldn’t care) with a lowercase “a,” just not Autistic with an uppercase “A.” I might have the mental condition, but not necessarily the social identity associated with it. And this isn’t even an analogy; many people on social media have already began to capitalize "Autistic.”

I might have leaned “Autistic” with a capital “A” when I was younger, but that’s far from the most important thing people should know about me. Fun fact: did you know that English is my “second language,” strictly by definition? I do have an accent, but English comes more naturally to me. Not only do I read, write, and talk in English, I think in English. It’s a big part of how I define myself. It would be kind of weird for my friends to go around telling people, “This is Asaka, English is her second language.”

I could very well be autistic. But a lot of what I’m describing also sounds like ADHD. So what gives?

Murray posits that people with just ADHD also exhibit some forms of monotropic thinking, though more research is needed. A key sign of autism is focusing on details that others may consider unimportant or irrelevant, while a key sign of ADHD is inattention to detail; many people with both diagnosis report that treating their ADHD have made their autistic traits more prominent. In fact, most newly diagnosed autistic adults I know had been previously diagnosed with ADHD and chose to seek further evaluation when because they were still having problems at work, home, and with friends.

My experience has been the opposite.

When I tried to fight my autism diagnosis as a freshman in high school, I argued that my social struggles came from executive functioning issues, as opposed to a specific thinking pattern that would indicate autism—an explanation often met with skepticism since I guess my behavior seemed too bizarre for someone with just ADHD.

(Also, I’ve come to realize that most people don’t want to analyze how many different parts of our brains are engaging when we’re socialize, because it’s unsexy. We’d rather to believe that charisma can be solely attributable to pure intentions if not a basic understanding of social cues, instead of things like quick recall, efficent coordination, and store-brought norepinephrine.)

And even if my disorganization, forgetfulness and impulsivity explained the awkward pauses in conversations, it didn’t explain my unusual relationship with writing.

I was always thinking about writing. Every five minutes, a new phrase, analogy, or inkling would come to me, even when I was doing something completely unrelated. I’d pull out my phone in the middle of the grocery shopping to jot something down in my Notes app. Every couple of weeks, I'd transfer these notes to a Google Doc, where I’d crash my mental GPS with all the scrolling, copying, and pasting, since I was working with incomplete if not redundant sentences. It was a painstaking process—once, I counted and it took me a whooping 200 hours to finish writing a 3,000 word blog post. Most of my rambling never made it to second draft, but when I miraculously made it to the third draft, I was tormented by the fear that I would die before the piece was published. I hated working from backlogs, and never feeling present. I wanted to stop writing. But I couldn’t.

I didn’t have an identity outside writing. Oh, and I also wrote a lot about a niche topic: disability. Every time I met someone new, I pressured them into following my blog, but many of these friendships dissolved because they couldn’t relate to me. I couldn’t comment on topics like classes and Netflix shows, and I couldn’t recall things like what I ate or what the weather has been like (though not necessarily because I was engrossed in writing; I felt slow and forgetful in general). In hindsight, I also think people walked on eggshells around me because I sounded very intense on texts and emails, and would go on unhinged rants on social media.

Being medicated for ADHD has radically changed my relationship with writing. I have a much easier time fulfilling social and emotional needs that I used to rely entirely on writing to meet. Without the constant brain fog, my conversational abilities are up to par with my extroverted personality, and that’s all I ever wanted, to talk to people.

I’ve mostly been able to kick my text-bombing habit, instead using a combination of in-person, phone, and voice memos to maintain an open line of communication with friends while giving myself space to gather my thoughts. Healthy friendships is kind of like co-authoring an article, where both people work together to create a balanced story without one person controlling the narrative, and it’s easier to achieve that balance when I can organize my thoughts.

The process of writing itself is more efficient—who knew I could type one sentence from beginning to end in one go?—so I get more satisfaction out of it. I have more time to learn new hobbies. And I’m a pretty fast learner now. For the first time, I can listen to NPR while my dad drives me, and I’ve been doing write-ups for a podcast, The Jounalism Salute, where I’ve learned so many interesting historical and scientific facts.

Becoming more well-rounded didn’t dull my personality; it just means that I have more to joke or wax poetic about. I feel more passionate about what I write. Today, my life experiences dictates my writing, whereas before, my writing has dictated my life experiences, restricting who I talk to, where I go, and how I spend my time, because my portfolio was the only thing I could control.

I always balked at people’s insistence that writing was my special interest, though I couldn’t argue against it. I had a much easier time concentrating on writing than I could concentrating on anything else. “Write about it” was my go-to solution to every problem I had, and I brought my verbose, highfalutin “voice” to settings where it wasn’t socially acceptable. As far as special interests went, it checked off all the boxes. But I wasn’t just interested in writing; I’d been using it as a practical means to cope, pushing myself to my limits through sheer force of will and desperation.

Don’t get me wrong; I have nothing but love for my past self, my past work, and all the people who helped me keep a positive outlook. As people, we crave more, but I think that’s a dangerous game. I can recall many moments where I was truly happy. I burnt out afterwards, but that doesn’t make these moments of joy any less real. I had people in my corner who did everything they could to support me.

At the end of the day, I’m thankful. That chapter of my life has taught me so many valuable lessons and I’m excited that I have the tools to apply them in practice. It just unnerves me to think that I may have never gotten the help I needed, if I wasn’t incidentally prescribed ADHD medication after nearly failing my classes. That’s all.

Sometimes when you hear hoofbeats, it really is a zebra.

Here I go again, overanalyzing. I will touch grass, and I’ll do it as soon as I finish my next chapter. But bear with me for a little longer, please?

Have you heard of the horseshoe theory? It's an idea in politics that suggests the far-left and far-right are quite similar, even though they seem opposite. Many people have pointed out that this model doesn’t capture the most pressing problems facing our country, and I agree. But still, this idea that if you take anything too far in one direction, you could end up with the same problem you started with, has many uses beyond politics. Like different definitions of autism. 

You can define autism in technical terms, on observable behavior: autism is when you display these specific observable behaviors, no ifs ands or buts. Or, like Walker and Murray, you can also define autism as theoretical terms, as a set of tendencies that makes someone more likely to react to things certain way but not always. 

These definitions seem diametrically opposed, but if you really think about it, they enforce the same approach: that autism is something that you can see, whether that’s through direct observation or brain activity.

I can’t speak on the scientific utility of this. But I don’t think these models should be used to discredit a person’s subjective, lived experiences or deny their autonomy. Each of our brain is as unique as our fingerprint, and as we embark on this adventure called life, our neural pathways make new connections. I don’t study psychology, but I know that much. People don’t come in factory settings, and every one of us have unique observations only we can make. In that sense, we really are the best experts of ourselves.

Society operates under the assumption that anyone who fits the technical definition of autism should also fit the theoretical one. Right now, we have a fertile ground for different stories about how autistic people: Autistic people think this way… Autistic people love it when you... Autistic people hate it when you… Many people, including myself, rely on diagnostic tools to reveal a singular, deeper truth about a person, and forget that their stated purpose is to record statistically significant cluster of symptoms or traits.

Our experiences shape our perceptions. Just as my outward presentation might make it difficult to get a blank, clean sounding board for how certain accommodations work for me, my personal experiences with stigma influence what language I’m comfortable with.

Autism shapes how a person perceives the world. You can also say the same thing about intellectual disabilities and Down Syndrome. Yet, language preferences vary: many people on the autism spectrum use identity-first language (“autistic”), while most people with down syndrome and intellectual disabilities prefer person-first language (i.e. “person with intellectual disabilities” or “person who has Down Syndrome”).

What I’m seeing here is people trying to push back against the status quo. Autism can sometimes (not always) be invisible, and it’s common for an autistic person to feel like their struggles are not taken seriously. In comparison, other disabilities are more visible, and it might be more common for people with these disabilities to feel like they are being defined solely by their challenges.

I’ve read so many good stories about people with different disabilities succeeding despite people doubting them. It’s no secret that the education system fails children with disabilities (and teachers, who are overworked and under-equipped), and there are also common patterns based on different diagnoses. For example, teachers might take out their frustration on autistic students for not following instructions despite being given multiple “chances,” when what they need is for someone to explain in a different way or to ask more clarifying questions. Meanwhile, students with intellectual disabilities might be cast aside, forced to do simple, repetitive tasks because the current assignments seem too challenging, when what they really need is just more time.

Due to the unique societal barriers faced by each group, autism advocacy tends place a greater emphasis on how autistic people are different from non-autistic people, while intellectual disabilities advocacy focuses more on how people with intellectual disabilities are similar to those without intellectual disabilities.

I say all this because I wonder if my aversion to certain autism cliches—the glittery generalities about “seeing the world differently”, the constant contrasting between autistic vs non-autistic communication styles, and the whole “masking” thing (and seeing so many gorgeous girls selling their entire platform on how she’s NOT as “typical” as she seem)—has more to do with my own projections, than the intended message.

So much of the messaging that I see on social media is made for and by people whose deepest wounds stem from sentiments like “But you’re so normal. Stop using it as an excuse and get it together already!” They might not necessarily be thinking about the people whose deepest wounds came from sentiments like “Oh, you’re special… I’lll assume what you need.” I’m not saying that one stigma is “worse” than another, and I should also note that the same person can be be hurt by both of these things (I feel like lately, I’ve been getting more of the former).

What I’m suggesting is that some of these messaging, drawing attention to how different autistic folks are, only help when there’s a backstop: you’re different, but to an extent. There’s definitely a place for it. But I want you to know that as someone who can present as overtly “strange,” I don’t have that backstop. Some of the rhetoric that I see on social media feels like a free pass for everyone to treat me like an alien species, deciding that something is too hard for me, and exclude me from conversation assuming that I won’t be interested in the same things they are.

Keyboard warriors like to poo-poo assimilationism as a “privileged” stance, but it’s not that simple.

The right to fit in is something that so many people take for granted, yet remains out of reach for some disabled people. For instance, when a person with Down syndrome expresses interest in "adult" activities like drinking, swearing, or getting frisky, the people around them might falsely assume they’ve been groomed, unable to consider that maybe, they did it because they felt like it.

The right to try, too. An AAC (Augmentative and Alternative Communication, which includes picture boards, communication books, and computer-based systems that help people talk) user might face skepticism about whether their words are “real,” especially if they have an aide with them. This can be dangerous if they’re being abused and the people around them aren’t believing them.

And then there’s this mentality that disabled people and non-disabled people are so fundamentally and intrinsically different that they should be separated, to “be with their own kind.” Strides in disability rights have been achieved despite this idea.

In the disability community (and in many other communities), we have all these people who have been fucked over by the system in so many different ways, trying to reclaim their power in so many different ways. As human beings, we want what we have been denied. We heal our inner children, and negotiate with the world every day, trying gauge what the people around us do or don’t know about our lives so that we can engage in meaningful dialogue.

I’ve always said that my lived reality aligns more closely with being allistic than autistic, but maybe this feeling of alignment may have less to do with the general cutoff line between “not autistic” and “autistic”, and more to do with how the world applies these concept to me. If I’m being honest, I don’t know what my “true” place is on the spectrum.

And I can sit with that uncertainty.

It feels like I'm on a Ferris wheel that stopped, where, as the motion steadies and the butterflies settle, I see the vibrant hues that lie beneath. If I’m the last to find my footing, so be it. I’ll watch the sun go down, admiring how small yet mighty we all are.

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“There’s a growing field of people with those diagnoses sharing their experiences. You might want to look into that,” said my MUSE (Mentored Undergraduate Summer Experience) mentor, Professor Hustis.

Professor Hustis, one of the chairholders in the English department, was introduced to me by my wonderful long-time advisor, Professor Pearson. I wouldn’t be where I am without Professor Pearson. I was able to start this project for MUSE because I was looking for an excuse to get out of the house and get some cash, and she thought that my article, What People Don't Realize When They Hear ‘Autism Is a Spectrum' was packed with crucial questions worthy of a full-fledged research project.

I felt a whirlwind of excitement and doubt. Sheer ambition. I already knew it. This was going to be really damn hard and even more damn rewarding. 

I combed my fingers through my jet-black hair, once bleached into a neon pink and now fading from violet to a metallic mauve. I couldn’t help but think how much my world has changed since I was in high school. I’d survived a pandemic. I no longer thought twice when I told someone that I’m “bi-curious, mostly lesbian.” #ActuallyAutistic has exceeded 6 billion views on TikTok and 600k posts on Instagram, growing past its Niche Online Discourse status to becoming a hot topic in diversity and mental health. Hell, some of the internet’s hottest it-girls had come out as autistic.

And yet, my relationship with my diagnosis was just as fraught as it was eight years ago when I went to the clinic, hoping that a doctor would undiagnose me.

Earlier that year, when someone from my organization told their friend, “This is Asaka. She’s also autistic and she’s the Vice President of Breaking Down Barriers,” I recoiled. As soon as the friend left, I asked the person to please not refer to me that way. I felt a deep sense of shame. I was the head of the College’s disability advocacy org. I was supposed to be a role model. A spokesperson. An advocate. I wasn’t supposed to shy away from my autism diagnosis, unless I had another diagnosis in its place that I was trying to raise awareness for.

Executive boards, or eboard in short, are great but not without challenge. You have the annoying email tags, the endless hot potatoes, and zero work-life boundary if you live on campus. Everyone complains about their presidents and vice presidents being control freaks with sticks up their asses and more chips on their shoulders than you can count, and every incumbent thinks they can become Leslie Knope by introducing a revolutionary system or adopting a relatable and #real persona. As with most things, it’s easier said than done.

But what stumped me the most was how tricky it can be to navigate disability etiquette. I knew what it felt like to be misunderstood and cast aside, but I never knew where or how to direct my empathy because those Feminist Disability Studies readings never told me what my role was—whether I counted as autistic or allistic, or whether my inability to relate to certain stories meant I was too privileged or not privileged enough. I was perpetually flustered, never sure what was and wasn’t okay to ask or ask of somebody else.

There’s probably a rumor somewhere out there, too, that I’m a bully, that I used my position of power to make everyone hate themselves as much as I did. I would never bring other people down on purpose, but I do think that power can turn anyone into a self-absorbed clown. The weekly meetings were the only place where people eagerly awaited for me to speak and looked to me for answers, where I felt competent, so I will admit I felt a bit smug.

But nothing compared to the satisfaction of doing “hands-on” work. Even—and especially—in the most hectic moments, I delighted in the challenge of coming up with innovative solutions and creative compromises. The practice of adapting connected me to the broader disability community more than mere labels ever could. I felt like I was serving something bigger than myself, a sense of purpose countless people had promised I'd experience from speaking at panels.

“I'm autistic and proud,” so many of my colleagues would say. I could hear the strength and conviction in their voices and it was this resolve that echoed across the hollow chasms in my armor as I walked home: If it’s not the kids in middle school saying that I’m the r-word that makes me autistic, and if it’s also not the piece of paper that makes me autistic, what the hell is it that makes ME autistic?

Despite my best efforts, my speeches and my Canva slides never conveyed the depth of my thoughts. I felt like I was circling around each idea with my hand, focusing on the silhouette rather than the dimension. But maybe I was the one who didn’t get it. For some reason, that thought made me feel a little less afraid.

“I know that neurodiversity is a broad topic; I’m specifically interested in the semantics and epistemology of diagnosis,” I told Professor Hustis. Semantics is the study of meaning, and epistemology is the study of knowledge (Epidemology is the study is disease). 

“Right, so it’s like, who decides who’s autistic and what’s not? So what if someone doesn’t want to look someone in the eye? In some cultures, it’s weird to stare at people in the eye—”

“Well, I don’t know if the diagnosis applies in the first place,” I interrupted.

I tried to explain as much as I could, and I don’t know how, but I must’ve done it half-decently, because she said:

“Ah, so it’s about the scope of these categories.”

Scope. My eyes lit up.

“Again, it’s about framing, right?” Professor Hustis would say at the countless Zoom meetings in the summer session that changed my life.

Framing isn’t about whether something is true or not, but about how things are being connected with each other. The concept is also the central theme of my first reading, Pathological: The True Story of Six Misdiagnoses by Sarah Fay.

The first chapter opens with twelve-year old Fay in the emergency room, weak and clammy from under-eating. “My stomach hurt. It didn’t want food, so I stopped putting food into it,” she explains. “Not eating brought a different kind of ache (dry, but empty), but at least it wasn’t the sickening, murky pit.”

The vicious cycle reaches its peak during her eighth-grade field trip when she goes three days without eating and vomits when she finally tries to eat. The doctor promptly diagnose her with anorexia, a disorder typically characterized by an intense preoccupation with losing weight and restricting calories, never once asking Fay why she hadn’t been eating.

In what is one of the most brilliant passage I’ve ever read, she writes:

I didn’t know it then, but the comma was punctuating my life as an anorexic. It separated items in the list of ways I was falling apart: dry skin, brittle nails, difficulty concentrating, exhaustion. It set off information I deemed unimportant: My symptoms, which included muscle weakness and fainting, were severe. It coordinated adjectives that describe me: the thin, depressed girl. It marked an introductory phrase: Once upon a time, there was a very thin girl. It created dependent relationships: Although my family tried to help, I kept getting worse. It connected independent clauses: I got worse, and my family was worried.

That passages reminded me of AP Lang, and also of my ongoing struggle to talk about my disability in a way that makes sense to me and whoever I’m talking to. Of course, there are some major differences between the diagnoses in question. Anorexia, for one, is a horrible illness that causes a person to have upsetting, negative thoughts and hurt themselves, while autism is frequently characterized as a neurotype, or a natural difference in how someone's brain works.

Still, both diagnoses are flawed attempts to describe what’s happening inside a person’s mind. And our minds, in my opinion, are the weirdest, most beautiful, and most fucked up things to ever exist on Earth. I knew I couldn’t possibly be the only one who, despite having all the symptoms of a condition, felt disconnected from the bigger “picture” implied by a diagnosis.

In most autism infographics, features like “difficulty using nonverbal communication” and “difficulty understanding nonverbal communication” are lumped together under overarching statements about how autistic people “relate to people” or “make sense of things”, and of course, “see the world” differently from someone without the condition. When I asked some of my colleagues about how autism affected their day-to-day life, I received similarly… vague? broad? generalized? responses. A big one I got was “I have difficulty with tone,” which begs the question: do you have trouble using tone or understanding tone or both? Most, if not, all people I’ve asked told me they had some degree of difficulty understanding tone.

These narrative structures have taken on a life on its own, feeding on inference rather than explicit clarification from an “official” source like the WHO. I’m not saying that this is wrong, just that I sometimes get confused because it wasn’t what my diagnosis was based on.

My autism diagnosis has shaped the trajectory of my life, but I sometimes find it much easier to avoid the subject because it can get stressful, like a last-minute cram session where everyone compares answers with anxiety and a hint of accusation in their eyes: Wait… So… Who got it wrong?

So you’re saying that not everyone who is autistic acts A Certain Way, because autism isn’t about how the world sees you; it’s about how you see the world. But wouldn’t that mean that the opposite is also true? That not everyone who acts A Certain Way is autistic? That’s how I’ve been thinking about all this for the past few years.

I will admit that sometimes, the voice in my head that says “I’m not really autistic, am I?” sounds awfully like the twelve-year-old coming home from school sobbing, asking if she’s fat. She doesn’t need anyone to pinch her tummy, look through her wider friends’ tagged posts for unflattering shots, and say “Don’t be silly. You’re not fat; you’re beautiful!” as though those two things are mutually exclusive! God no! Fuck no!!! What she needs is for someone to listen to and care about what she’s feeling—lonely, angry, embarrassed, anxious—so that she’s not just stuffing them away under “I feel fat.”

When I get too stressed, I try to step back and ask myself what is it that I’m afraid of: 

Being dismissed? 

Being excluded? 

Being treated as a liability? 

Because no one deserves that, whether they’re autistic or not. No one.

NO. ONE.

But also, it’s not that simple. Securing equality for people with disabilities starts with acknowledging that disabled people are worthy and human just like anyone else, but it shouldn’t stop there. Inclusion isn’t just about being okay with a disabled person sharing your space; you have to think about what their daily life is like and the barriers they face, instead of assuming there is one standard way to do things.

(Graphic by Tzipporah Johnson/@tzipporahfeiga)

And that’s where I run into trouble. I struggle because so much of the widely circulated "tips" for respectfully communicating with autistic people leaves me feeling disempowered and set up for failure.

In the past decades, our culture has blamed society’s abysmally low expectations for autistic people—that they are incompetent, incapable, and unable to learn—on its failure to look past differences. But today, advocates are asking a very good question: what if the real problem is our culture’s failure to acknowledge difference?

Though people have been saying for years that autism isn’t synonymous with a lack of empathy or intelligence, I’ve talked to so many non-autistic people who, after a negative experience with an autistic friend or coworker, fall back to resignation: they make me feel bad, but I’ll allow it because they’re not as good with people/feelings. Usually, it turns out that there was a communication breakdown neither party was aware of, and I think advocates on social media have done an amazing job of illustrating where communication can go awry between autistic and non-autistic folks.

(Graphic by H.J. Richardson/@hat.taks.uk)

I suspect that the delicate balance between being mindful of someone’s needs and treating them differently is something we, as a collective, will continue to grapple with for years to come. But when I think about where my own needs fit into this conversation, I face a sense of uncertainty that I feel far more alone in.

Promoting the view that autistic people have a different, not less, way of communicating, means that we have to stop using “autism” as a catch-all diagnosis given to everyone who struggles socially, let alone as some miscellaneous loony bin for anyone who’s really fucking weird, and start talking about what these differences are. I’m not sure what that means for me. I know how I communicate, and I don’t see myself fitting into any of the pre-determined roles championed by the autistic community.

When I first started following #ActuallyAutistic around 2016, I remember seeing everyone get really angry every time a new TV show or movie with an autistic character was announced. Now, I hear less of that frustration. It seems like the industry is finally listening and hiring more informed people to portray autistic people in a more respectful and accurate manner.

I haven’t started watching TVs and movies yet (though I hope to do that very soon), but I follow updates on social media. I see that today’s autistic characters are increasingly diverse, especially in terms of race, gender, and sexual orientation. Writers are making more of an effort to integrate autism into universal themes and broader social dynamics. Autistic kids can see relatable role models, not just a stick figure with symptoms pasted from WebMd that performs solitary activities, or alternately, Buddy-Hobbs-level shenanigans. I also see that much of the “positive representation” we see today are essentially a more polished version of a decades-old trope: the autistic character says and does things that others find baffling, but there’s always a reason. Their rationale is fair, logical, and endearing if not enlightening.

One example is Extraordinary Attorney Woo, a K-drama about Young-Woo, an autistic rookie attorney determined to forge her path at a Seoul law firm, despite other people doubting her. In one scene, Young-Woo’s colleague, Su-Yeon, calls Young-Woo before an important meeting to bring "any” pair of pants, and Young-Woo arrives with pink pajama pants. Su-Yeon gets flustered because the pants don’t match her professional outfit. But Young-Woo had taken the request literally and thought Su-Yeon wanted something comfortable.

(Graphic via Autistic Not Weird/autisticnotweird.com)

As someone whose strongest connection to autism comes from how society perceives and treats me, rather than an internal sense of how my brain works, I’m grateful yet frustrated by the growing fascination with the big why. Why am I like this? I’ve always wanted to talk about it, but I worry whether anyone would understand, or believe me.

When I was first diagnosed at ten, my social differences were far from superficial. I was just as different in my thinking as I was in my behavior, which is to say very. A lot of what other kids considered a big deal, I didn’t think was important, and vice versa. I just couldn’t relate. However, I’m not sure if that points towards autism, or something else entirely.

Some of the wisest people I know are autistic. Many of them have intensely focused interests, don’t care for small talk, and thrive on rules and certainty. Sometimes I don‘t know what to say because they never outgrew these traits, and I did. I know that for so many people, these features are intrinsic parts of their identity that they nearly killed themselves trying to hide or fix; for me, they are relics of an irrevocably good but developmentally fraught childhood, marked by phobias, dissociation, and learning setbacks owing to extensive lapses in attention, and a near inability to hear my own thoughts unless I was writing or talking.

In these conversations, distancing myself from my diagnosis has felt like a protective measure. I worried that if I removed the shield of “It’s not the same,” then we’re going to go down the “Oh, I get it; I used to be like that but thank God I’m not anymore.” Then, someone would get hurt.

I mean, it really is not the same. The last time I struggled in the ways they have, I lacked emotional permanence and basic abstract thinking skills. The people that I talk to possess far more (relative) insight than my five-, nine-, or twelve-year-old self could ever imagine. They’re the therapist friends. The peacemakers. The philosophers.

Speaking of philosophers…. Why do I overthink this? The bottom line is, I know and respect autistic people. So why would sharing a diagnosis—and a broad one at that— with them be such a scary thing?

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Then, COVID happened. I don’t have anything to say that no one else has already said. But yes, I was quarantining in my childhood bedroom when I was accepted into The College of New Jersey, as a Journalism major. 

Writing was always the one thing that propelled me to reach heights I thought I’d ever reach. After debating between a creative writing and journalism major, I decided that journalism was more practical. Besides, a creative writing major would require me to take fiction workshops, and with my crappy imagination, I didn’t think I would be able to pass the classes. So journalism it was.

Later that month, I was diagnosed with ADHD in the most unceremonious way imaginable. I was asking Dr. Roberts* for formal documentation so that I could get accommodations in college, and I honestly couldn’t care less what was on it, as long as I got the accommodations I needed. Dr. Roberts obviously knew that I was diagnosed with autism when I was younger and had been prescribing medication for anxiety. 

But I thought I’d ask: “I was also wondering where I could get tested for ADHD?”

“Yes, Asaka, I already have it on your chart. You have symptoms of ADHD, Predominantly Inattentive, and I’ll be sure to put that on your letter.”

And just like that, it was on paper.

Even after the world shut down, I continued to live like a doomsday prepper. Every time I had a new idea for writing, I would wonder if I could finish it “before I died.” But that urgency never stopped me from mindlessly scrolling on social media. No matter how hard I tried, I couldn’t bring myself to seize the moment I had right in front of me. Instead, I tried to reserve the moment I envisioned in some distant, elusive future.

Intro to Journalism was a small class with only about five people. I immediately got along with my first professor, Professor Webber.

Excitement coursed through my veins as I learned about all those sayings: If your mother says she loves you, check it out, which means fact-check everything. Follow the money, meaning investigate people’s financial incentives. Don’t bury the lede, meaning the most newsworthy part of my article should be in the first sentence, not the seventeenth paragraph.

Learning the AP style, or Associated Press’s editorial guidelines, was boring. It has arbitrary rules, like spelling out the numbers one through nine, numerizing 10 and above, and using a.m. and p.m. instead of AM and PM. I don’t think I’ve met anyone who doesn’t find these rules a bit annoying.

Once I started sharing Google Docs with other people, I couldn’t help but feel a bit self-conscious about my writing process. I couldn’t believe so many of my classmates could type a sentence from beginning to end in one go. I always spat out bullet-point-sized fragments rather than complete sentences, right up until the final draft.

Since I was the managerial editor for my high school paper, I knew how to proofread other people’s work. But when I had to write an article myself, I was so exhausted by the endless copying-and-pasting, dragging-and-dropping, and sifting through [placeholders] that I’d overlook even the simplest mistakes, like subject-verb disagreement, missing transition words like “because” or “for,” and duplicated words.

In high school, I had seven classes every day, and in college, I had four classes every week, and at last, I was free from math. But it didn’t get easier. Dense readings made my head hurt, no matter how much I broke them up, and I struggled to write detailed responses, without daily classes to spoonfeed me information and without Sparknotes to bail me out.

Six month into quarantine, my family life was falling apart; mental illness runs in the family, and I’m very, very lucky to have grown up with the education, support, and knowledge I did. After I had to leave my house for a couple of days, I began to fall behind by weeks instead of days.

I remember covering the redness of my nose with makeup in my chilly childhood bedroom, the outside eerily quiet except for distant sirens now that the cicadas were gone. I couldn’t find stability, certainly not here, but also not in the idea of having my own place someday.

I knew that I had to do something about the brain fog so that I could make a living for myself, but I feared that anyone I turned to for help would have more of a reason to say “See, it’s your emotions.” I wished the world could see what I saw: studying what I liked didn’t fix it, getting more naps didn’t fix it, and now, I was holding back tears, unable to look away from what was truly at stake.

I told you so, I wanted to scream. I fucking told you so. Instead, I typed a wordy email to Judy:

Even though I never went past the bare mininum in all my classes, I had no time or energy left to write, or even brush my teeth. It hurts to accept that this has been a recurring, persistent pattern in my life, not just a "rough patch."

Today, I spoke to my disability office coordinator, who encouraged me to take 3 classes instead of 4 classes per semester (and making them up during summer and winter breaks) from now on.

But I'm not that relieved, because, before in the blink of an eye, I'll fall off the proverbial cliff. 

I don't know how I'll transition to a 9 to 5 job, when I'll be recieving a fraction of the intensive accomodations I'm recieving right now at college. 

On FaceTime, Judy nodded with her eyes downcast, making it clear that she believed me and wasn’t going to dismiss my struggles as “depression and anxiety.” though she must’ve sensed some despair in me. She reminded me that I was starting my first semester of college in unprecedented times and that I’d overcome so much before—I could this time, too.

Then—as she always did when something major major came up—she asked: “Asaka, does your psychiatrist know?”

I bristled. “Well, she can’t do much. She’ll prescribe more antidepressants. When has that ever helped?”

“There are different medications,” Judy replied. “I’m sure something could make a difference.”

Judy said she’ll also talk to Dr. Roberts. When I met Dr. Roberts, she proposed a new option: Zealon*, an off-label antidepressant used for ADHD, to add to my SSRI. 

We started cautiously, monitoring my blood pressure. Everything was good, and the first time, I had the energy to not only do my homework every day but also write articles.

Gone were the days I had to plead with my parents for permission to start a blog. In the second semester, I wrote an article for Thought Catalog, Fuck Cheugy, I Can’t Get Over These Early 2010s Trends.

It was surreal because that website was popular when I was in middle school, and I was able to get a byline, just in time before they rebranded into Collective World. I remember pitching the article as something like “Eff Cheugy, I Can’t Get Over These Early 2010s Trends” and when I saw that they had spelled out the four-letter word on the headlines, my face turned red because I thought Professor Webber was going to hate me (she doesn’t). But more than anything, I was proud.

As a teenager, I wasn’t the author of my own story. I was a method actor, cycling through existential fears by taking platitudes like “Nothing lasts forever” and “The future is unknown” to their bleakest logical conclusions. If Frankenstein conducted botched thought experiments, I was the zombie. If Candide, ou l'Optimisme was about cynicism, then I was your guy Candide. But when I wrote that article, I wasn’t thinking about any world other than the one I lived in, the only one I had.

In my next article, I buried the lede. I wrote about how my disability affected me, never once using the word “autism” or ADHD for that matter. In the sixteenth paragraph, I wrote:

By now, you’re probably wondering: Asaka, what’s your disability?

My disability is known as autism and ADHD, though you can also think of it as a generalized learning disability. I say it that way, instead of “My disability is autism and ADHD” because I find it nearly impossible to define my disability through clinical metrics.

My reluctance to label myself is not a matter of euphemism — in fact, quite the opposite. There is nothing shameful about being diagnosed with autism and ADHD, but I don’t think these terminologies are as precise as we’ve been led to believe. Although I technically meet the clinical criteria of autism, there are a number of caveats, and my autism and my ADHD are so closely intertwined that I can’t parse apart the two. The whole thing is a semantic nightmare.

Looking back, I cringe at how abtruse and philosophical this sounds, because that’s exactly what I’m trying to criticize. My point is that if I hesitate to declare that I’m autistic or that I have autism, it’s not because I see autism as an insult, or because I think my “problems” aren’t “that bad.” It’s because I want to present all the pieces in a way that makes sense to me, and not worry about the borders society has drawn.

In another article, Surprising Things ADHD and Autism Have in Common, I explored the relationship between the two diagnoses.

Autism and ADHD can be mistaken for one another. For example, being blunt out because you’re feeling stressed or antsy (impulsivity and restlessness, a characteristic of ADHD) was different from being blunt because you say exactly what you mean and don’t see much else to it (literal thinking, a characteristic of autism). 

But these similarities are “more than just skin-deep,” I explained. For example, I said that my difficulty with completing multi-step tasks can be “counted” towards either autism or ADHD. Last but not least, I made the point that although I had functional difficulties that fit under definitions of autism or ADHD, they were linked to internal experiences that weren’t specifically associated with one or other.

Case in point: I’m a non-linear thinker, with little to no inner speech. My inability to clearly “see” or “hear” my own thoughts presents as two sides of the same coin: while I experience communication difficulties typical of autism, I also experience chronic disorganization at the heart of ADHD. 

In another article, Surprising Things ADHD and Autism Have in Common, I wrote:

Nothing is set in stone. I can only hope that our language will refine, alongside our knowledge …  In the meantime, I want the world to remember just how broad a singular diagnosis can be. Saying autism is a spectrum doesn’t just mean that autism looks different on everyone — it also means that autism, at least under its current definition, is felt and experienced differently by everyone.

I don’t know about you, but every time I meet someone new, I ask the same questions, trying to get a sense of who they are: Where do you work? What do you study? What do you like to do in your free time? And my favorite: Do we have any mutual friends? If I haven’t yet (I’m a big Insta stalker), I’ll be sure to look them up on Instagram.

According to the Uncertainty Reduction Theory, proposed by Charles Berger and Richard Calabrese in 1975, our urge to learn more about someone isn’t random—it's driven by our fear of uncertainty. Berger and Calabrese identified three main factors1 that affect our ability to get over the uncertainty hump; anticipation of further interaction (like knowing you’ll be working with someone), incentive value (when they offer something we want—whether it’s money, status, or irresistible charisma), and deviance (when they act in unexpected ways).

The last one is interesting. People often defy expectations, all the time (Judee K. Burgeon, another scholar, says there are two types of expectations: predictive expectancies, which is what you think a person would do in a given situation, and prescriptive expectancies, which is what you think a person should do2). A bit of unexpected behavior can make us go, “Hmm, what’s up with that?” But past a certain point, it might make us shut down: “I don’t even know what’s going on. I’m out.”

In other news: we’re all running from the beast called uncertainty and every person who’s in your life is here because of our fight-or-flight response.  

When I sat down with one of my first college friends, Madison*, to give her The Talk, what she said surprised me:

“I know,” she said. “You wrote about it in your articles. I actually looked through your website and read everything. I dig it.”

This was why I did what I did.

And still, my digital footprint revealed another jarring inconsistency: the discrepancy between my spoken and written communication ability. 

Offline, I was plain-spoken, usually observed mumbling indistinctly and trailing off into laughter: “I don’t even know what I was saying.” Online, I was sharper than a needle. Any conversation deeper than what I ate for lunch sort of became an exercise in flowery writing. I don’t have nudes but I have old text and email exchanges that either read like a scathing WaPo editorial or a sanctimonious breakup announcement from a child-actor-turned-spiritual-healer on Instagram. Go figure.

For a long time, I thought the only reason people didn’t trust me was because they didn’t know what I was capable of. They thought I couldn’t understand the same things they did; any piece of contrary evidence, I assumed, they dismissed as a one-off thing or me just copying what I saw other people do. But what if people didn’t trust me because they knew what I was capable of?

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When Dr. Roberts* bumped up my dose of Zealon* during my sophomore year of college, I had low expectations. But it made a huge difference. 

Up until then, most of my formal education happened outside the classroom—when I reviewed my notes at home, Googled missing details, and made Quizlets. There were a lot of missing details that I didn’t even realize. And though I’d always enjoyed participating in classroom discussions, my input consisted of philosophical or ethical questions, or loosely related headlines I’d skimmed on Instagram. With more Zealon in my system, something shifted. I started to understand things the first time they were explained, and if I didn’t, it eventually clicked as I continued to take notes.

I knew that meds weren’t going to fix everything. Reading, for example, still required tremendous effort — I used a text-to-speech software while following along with my eyes, and hitting “pause” every other sentence to make sure I understood. 

But I had more stamina. I would read a book, get tired, take a break, and then dive back in. I also had the energy to socialize for longer. I had the energy to socialize (I was now able to make small talk with fewer long pauses, though a lot of that was due to gaining more experience). For me, this was a big change. I even wrote a blog post about it. 

But then came the side effects.

Zealon switched on my mind, but didn’t allow me to switch off my mind. It was helpful when I had a lot of schoolwork and not much else going on. But once I started having arguments with my friends, I became panicky. I couldn’t stop seeking reassurance, wasting time arguing with myself, and being annoying.

On the highest dose, I felt sick. Imagine being in a hot car, parched with your morning coffee still on your breath, cramming your homework while someone drives you. That was how I felt on a regular basis. My vision was unsteady, making it difficult to read from a board, and I felt a dull, but constant pressure in my head. I didn’t even realize that these were side effects, even though I felt it hit when I took the pills. I couldn’t let myself think about it, because I couldn’t afford to fall behind in class or miss out on social interactions.

The summer before my junior year, I started to see a new cardiologist. My dad switched me, and I don’t remember the reason. But I remember asking him if it was okay to continue taking Zealon, worried that he might say no, and being surprised by his response.

“My ADHD is completely debilitating,” I told him.

"Zealon… Isn’t that an antidepressant?” he asked.

“Well, I know that I shouldn’t be on stimulants—”

“You can be on stimulants if your psychiatrist thinks you need it. As long as your heart rate and blood pressure stays within range, I’m not worried.”

I did my research. Stimulants considered by many experts to be the most effective way to treat ADHD. Adderall and Ritalin are examples of a stimulant. A quick Google search showed that stimulants can raise blood pressure and heart rate (anywhere between 1-6 points), but the scariest tales had to do with people misusing it—taking more than they were prescribed or using it to stay up all night. Zealon had already increased my heart rate and blood pressure and to boot, it was making me anxious. Just like caffeine.

The bureaucracy of obtaining Cognisync*, the stimulant medication that irrefutably changed my life was a hassle. I showed Dr. Roberts the letter from my cardiologist saying that I could be on a stimulant so long as my blood pressure didn’t exceed 120/80 (my average blood pressure at the time 100 and 60 something), but she said she wasn’t comfortable. I had to stop seeing her due to an insurance change anyway, so I got in with an online clinic. 

“So you’re saying that you have trouble focusing on your work, getting your work done,” said the nurse practitioner, Stacy,* in an empathetic tone.

Looking at my chart, she furrowed her brows. “Zealon isn’t for ADHD. You’ll do much better on stimulants.”

She said it with a slightly dismissive but warm Brooklyn accent, reminding me of my third-grade classmate’s mom who chaperoned a field trip. (“That’s garbage,” she said, looking at the flimsy bracelet I picked up. “Do you like this one?” she asked, pointing to a sturdier bracelet I was holding. She knew I did. “Don’t worry, I’ll buy it for you.”)

“But it can increase anxiety, so we have to be careful.”

I nodded vigorously. “Which one has the least cardiovascular effects?” 

“They’re all the same, but I definitely need an EKG from you first.”

I relayed this to my dad. I needed him to drive me to my cardiologist’s office. 

“I know you’re desperate right now. Let’s talk when you finish your schoolwork,” he said, referring to the leftover assignments from winter break. He didn’t know that this was the third semester I’d had an incomplete. 

The EKG came back fine, so I sent it to the psychiatry clinic. I didn’t get a prescription, I called the front office and was told I needed to see my provider, so I scheduled another appointment with Stacey.

“You need to come in. I need to see you in-person because it’s your first time,” she said.

“Oh my God, I had no idea. I’m so sorry. I’m four hours away, I don’t think I can.“

"Here’s what we can do: Do you have a primary care doctor? I can send her a memo saying I’m good with you taking Cognisync, and then she can write the prescription."

When I saw my primary care doctor, she handed me a paper prescription, explaining that since she wasn’t a psychiatrist, she couldn’t call in a digital prescription. I brought the prescription to CVS, and three hours later, they called me. I was excited. But they told me insurance didn’t cover it, and that I had to pay over $300 out-of-pocket unless I got prior authorization.

I helf my brrathe as I texted my primary care doctor, hoping she’ll say all the right things to convince insurance that I needed this medication. Cognisync was the one my cardiologist mentioned in passing, and the only one my dad reluctantly agreed to have me on. After two excruciating weeks, we won.

The first day I took Cognisync, I was surprised at how mind-bloggingly easy it was to read. It was mental agility I’d experienced occasionally on Zealon, but without all the awful side effects. Soon, I noticed that I was absorbing much more than just words on a screen.

For the first time, I experienced the world in a continuous flow. When I went to the cafeteria, I didn’t hear people chatting in line, hear Taylor Swift’s Anti-Hero, and found myself smiling awkwardly as I realized they didn’t have the candied yams I wanted.

Instead, I overheard someone say they were running out of candied yams “soon-ish”, heard the lines “Sometimes it feels like everybody is a sexy baby/And I'm a monster on the hill/Too big to hang out, slowly lurching toward your favorite city/Pierced through the heart, but never killed,” saw the worker take the steel box at the corner of my eye, and decided to leave because I didn’t want anything else from there.

When I went back to my dorm and wiped the bathroom counter, I glanced at the toiletries’ packaging and felt a familiar “click”—the same click that used to only come after I’d read a sentence over and over. I got bored so I challenged myself to remember the exact string of words: Softsoap Soothing Clean Aloe Vera Fresh Scent, Glade Exotic Tropical Blossoms, Fabuloso Bleach Alternative. How could reading be so… easy? I used to find it hard to believe that people read packaging out of boredom, let alone while using the bathroom, but now I understood.

Over the next few months, I noticed that I was becoming more verbal in my thinking. When I read news articles for class, I would spontaneously start talking myself in my head, like "That article uses interviews as an anecdotal device, while this one uses interviews to relay data from a specific source," whereas before, I just felt that the articles were different, and then typed up a bunch of incomplete sentences that required constant rearrangement.

When I analyzed other people, my thoughts often remained wordless—a sort of a “just felt like it”—while I became increasingly verbal in recalling the actual content of the conversation (i.e., weekend plans). I found myself texting less, and when I did, I wasn’t as annoying about it. It was threefold: I stopped feeling antsy, I felt more confident in my ability to articulate myself in real-time, and when I started to read for more than five minutes at a stretch, I quickly discovered that “I was so busy and forgot to reply” was a realistic scenario and not just a polite way to say “Get lost.”

Something interesting I noticed was that for how much I was talking, I wasn’t talking over other people that much. It wasn’t like I’d suddenly noticed new social cues that I didn’t see before. It all came down to the fact that I was speaking more clearly.

Until then, talking felt like trying to read a teleprompter that was still being edited, my jaws tensing as the words shifted around unpredictably. I was barely audible as I breathed deeply enough to carry a consonant but not a full vowel and pursed my lips after each word. Now, I was louder and faster—but not startlingly so—since I could also relax my face and inhale before I spoke. After twenty-one years, they also gave me a turn signal, so that I can let everyone know that I was about to speak.

Before I started Cognisync, it felt like my body was trying to close itself off. Changing my tone or my expressions felt like dragging a clogged pen across paper, and when I wasn’t doing anything, considerable effort went into holding my posture and gaze steady. (One day in sixth grade, my mom told me I should act more “natural,” when she noticed that I was sticking up my nose and flipping my hair while waiting for her to pick me up. Looking back, I was battling an overwhelming urge to glance at anyone who moved behind me. My nonchalant demeanor was my way of keeping myself occupied)

The newfound continuity in my movements mirrored the continuity of my external world. When I spotted someone I knew on my way to class, I no longer felt the need to hide behind my phone or jumpscare them by intruding on their friends’ personal spaces; calling out “Hi” from a distance felt automatic, instead of a multi-step process of unlocking my muscle.

I no longer had flat facial expressions, something I’d been told was a feature of my autism and an intrinsic, fundamental part of how I interacted with the world. I knew I didn’t have to look “typical” and wasn’t going to, but it was a relief to see my emotions and outward appearance align more closely.

In conversations, my face morphed automatically like a mood ring, which probably had a hand in making my head quieter, freeing up the energy that was used to say something, damnit. I felt more present as I no longer had to see the startled faces of my classmates when I erupted in a strained voice after seemingly showing no interest in their group conversation or hear the shame in my friend’s voice as they were telling me a personal story and I alternated between vigorous nodding and uh huh.

The day after I started Cognisync, I cried because someone reached out to me after not speaking to me in ages. Three days later, I cried because I was proud of my friend for getting on the Dean’s List after an incredibly rough semester. What was happening to me?

I was never a stoic—the last two times I cried, I did so in public, in the Arts building, once in the stairwell, and once in the middle of my journalism class. But there were countless moments before when I felt like I should cry but couldn’t. And I had no idea what it meant to be moved to tears until that week.

There are many things in my book where I don't know if it's the chicken or the egg, and this is one of these things. All I know is that I felt less anxious, and as my anxiety grew smaller, and my other feelings grew bigger.

It was the calmest I’ve felt, my whole life. I was still having anxiety attacks pretty regularly, though; at least once a week. I spoke with a psychiatrist and decided to add another medication, a non-stimulant used to treat ADHD, and taper down on Lomelix* since it hadn’t helped that much. The panic attacks dwindled, and I felt my emotional range expand.

Before taking medication for ADHD, my emotional skin was perpetually raw; hyper-sensitive, scalding, with my nerve endings exposed. And yet, these nerves seemed shallow and ever so distant from the heart.

The startle response I got when I heard another person’s disapproving tone told me that I would get hurt if they kept talking. The scorching, want-to-crawl-into-a-hole embarrassment from seeing my old, unhinged texts told me that I did something I shouldn’t have, that I was guilty. The sinking feeling I had when I braced for a dreaded outcome told me that I had something to lose. And yet, despite these intense sensations, firsthand experiences of hurt, guilt, or loss were fleeting and rare.

Many emotions were like distant acquaintances you hear about constantly from your best friend; you think of them more as characters in a story than actual people in your life, even though they are actual people, and they are in your life.

You could say anxiety was my toxic, possessive BFF because she made sure I never saw my other emotions or tried to pit them against me. Whether I tried to face my fears or escape them, a brutal showdown was always waiting. If I knew I needed to cry to get release, the only way to get there was to seek reassurance and work myself into a panic attack, or try to explain my predicament to someone slow to understand. Even then, I sometimes felt like I cried of exasperation more than I cried of hurt or guilt or loss.

Crying for myself was hard, and crying for other people was even harder. Though I always knew right from wrong and strived to treat others the way I wanted to be treated, I felt like I lacked emotional depth. I needed intense stimulation, like music videos with dramatically orchestrated flashbacks and movies with sappy dialogue (think: the ending of Titanic)—to experience the same degree of sympathy that other people seemed to naturally feel when their loved ones were having a hard time. As far as real-life situations went, the closest I came was the fierce protectiveness I sometimes felt for a friend with a similar disability or someone I had a crush on.

Once I got on medication for ADHD, my emotions started to balance out. It was like a second puberty: my moods were volatile at first, but gave way to acceptance, as I got to sit with everthing instead of always running.

Low empathy isn’t a default for most people with unmedicated ADHD, nor is it a common symptom (And if you’re thinking about taking anything you’re not prescribed for just so that you can “feel something,” please, please don’t do that. This can go wrong in so many different ways). I was also on too much SSRI, which can dull emotions for anyone and make ADHD symptoms worse if you have that.

Humans, regardless of disability, are remarkably diverse in how they cope with big feelings. Take grief, for example; some people cry, and other people become numb. For me, the constant head chatter was so overwhelming that despite years of therapy, I couldn’t properly process emotions.

People have their opinions and some very understandable concerns about fucking around with synthetic chemicals, but for me, these changes told me that I was finally on an actual treatment plan—not just a way to numb me into oblivion.

Every time I get my eyeglasses updated, I have a mini-crisis, because I realize what humans can see and wonder if the kid sitting behind me has read my embarrassing texts on my laptop and if the professor noticed the weird faces I was making at the back of the classroom. Getting my meds adjusted also gave me a similar sense of perturbing clarity.

As I became more familiar with my own emotional range and more immersed with other people’s, their words registering more vividly in my mind, the concept of emotional labor moved to the fore. I realized, for example, that my excessive complaining wasn’t just inconveniences; my guilt trips—though never calculated—could make someone feel bad about themselves, and my pessimism could be genuinely triggering.

I didn’t realize it then, but I was starting to feel depressed myself. For the first time in my life, I had the attention span to finish what I started, but getting started still felt impossible. I fell into the habit of spending hours on my phone in my bed when I woke up, and skipping meals to catch up on homework. 

I still haven’t told many people how horrifying my eating habits were at one point. I was cold all the time, and my joints would sometimes crack. One day, I took an exam where I had to write a mock article about a school shooting. After the exam, I went up to the professor and mentioned that I didn’t realize there was an actual shooting, which was completely out of character for me. Not even three days later, I ended up in the ER from the most excruciating period cramps I’d ever experienced in my whole life.

I wasn’t on the brink of death, but who knows? The under-eating was taking a serious toll on me. It was scary. That was when I knew I needed to change my habits: not tomorrow, not next week, not next month, but now. And I did (though I had several near slips along the way).

My medication helped me be compact, and I liked it, though not in a physical sense—I never cared about making myself small in that way. I was more efficient at expressing myself, at explaining myself, and most importantly, I had less to explain. I could roll with the punches.

In one of the many interactions that confirmed to me my long-standing social struggles weren’t because of a “hidden curriculum” (as one therapist put it) that I wasn’t privy to—but rather, practical skills—I made small talk with a cashier at Target for the first time. When she mentioned that her daughter loves the apple cinnamon body spray I was checking it out, I didn’t just nod and smile. I told her that it was my first time using it, that I was buying it to use as a room spray (because let’s be real, Febreze is expensive aerosol), and that now I had a surprise to kick-start my self-care weekend. I couldn’t believe how quickly my mind was able to recall these details.

For the first time, everything felt manageable. I was ready to advertise myself as someone whose disability-related challenges were merely superficial: “Just give me a chance, and I’ll do things just like everyone else.” I was a pillar of stability and a ray of sunshine under my addled movement. I wasn’t, but what’s a little faking it until I make it? I’d already done that with school, all these years.

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My therapist saw the screenshots.

“Report her,” she told me.

“Look it up: ABR... Anti-Bullying Bill of Rights. If you file a complaint, your school is required, by law, to open an investigation. Audrey* can get in big trouble and so can anyone else who was involved. They’ll find that out for you.”

I didn’t.

As a college student, I was mortified to say I was bullied, a term mostly used by fifth graders who believed in the Tooth Fairy and washed-out YouTubers crying on TikTok after they were caught scamming their fans.

I could plead the former, because my disability makes me seem childlike to enough people, but doing so would only feed Audrey*’s savior complex: I didn’t know better, but she did, and she could dangle equality like a carrot on a stick—you should be grateful, because unlike everyone else here, I’m not letting you off easy. I never wanted to see her punished. I only wanted her to understand, if at all possible.

It started with the little things, as many things do.

Audrey, a few friends, and I were involved in something through the school. Long story short, I’d been asking the group chat for some stuff. No one else was doing it, but I didn't see why not because I was fully entitled to it according to an agreement we signed.

Audrey DM’d me, telling me to knock it off. She said I was making her uncomfortable and that I should be requesting at least five times less than we’d originally agreed.

I could see why I came off as critical. Now that I’d mustered the strength to get out of bed and sit on my desk to work on my laptop, I’d been texting more haphazardly, without my usual emojis and exclamations, before I turned my attention to near-miss Canvas discussions, gulped my meal replacement shakes, and prayed there was no one more thing that I had to think about. The first thing I did was clarify my tone, but Audrey told me that wasn't the point, that me asking was inappropriate in general.

WHOA.

I said we should regroup, find a different solution, compromise, I don’t know—we were creative enough to come up with something, right?

That angered her. She wanted me to drop it, like yesterday. Maybe I should have. It wasn’t that much of a big deal.

Or maybe it was.

It reminded me of home, where my family had to learn healthy conflict resolution skills amidst generational attitudes like “Watch your nagging” or “Stop yapping” or “Man up.” I despised the idea that some things were too trivial to talk about and that fairness didn’t matter as long as it was over little things—because I saw that most big things were made of a bunch of little things.

I thought that Audrey already knew this. But the thing about stereotypes is that they cause us to cherry-pick information, focusing only on what fits our preconceived notions. I realized that Audrey didn’t want to hear about what was going on in my personal life or share what was going on in her personal life; her main concern was that A) there were some social cues and B) I wasn’t responding to them the way she wanted me. I knew this because she sort of kept saying the same things over and over: that no one else was doing it, that others found my behavior aggravating, and that I should re-evaluate when it was appropriate to ask.

Audrey said I was being a stickler; I thought she was being the stickler. People don’t take too kindly to being told to not do something, end of the story, unless it’s something objectively shitty, like flashing someone’s significant other or scrolling on TikTok while someone talks about their dying grandpa. Maybe we were half-assed when we signed that part of the agreement about the thing I was asking for, but I thought we were genuinely committed to the part where it said everyone would have an equal say.

After some back-and-forth, Audrey apologized for coming across as too harsh—but not for telling me what to do—and agreed to set up a group meeting later this week. I gave her 24 hours to get started: if she didn’t send an invite in the group chat by tomorrow night, then I was going to do it—with the screenshots attached.

She called this blackmailing; I saw it as restoring fairness. Not having the stuff I asked for made my day more hectic, and between attending twelve hours of therapy a week and helping another friend in crisis, I felt like I was going to topple over. I didn’t want to be painted as the inconsiderate one because I didn’t stop when she first told me to, but I also didn’t want to bring this up in the group chat unprompted. It’s usually not a good sign when someone says, “I just wanted to…” and doing that would only fuel the perception that my requests were indeed grievances.

At this point, I was all bluster—more “c’mon, don't be a pussy and walk the talk” and less “as a student at this school…”—because I didn’t want to be written off as being too literal, too hung up on the rules to consider the interpersonal context. Legalistic, like she said. I was afraid she’d tell everyone I was unrelatable if I stated that I had the right to a fair learning environment, where her girl’s night outs, for instance, didn’t take precedence over my study sessions (but maybe, I thought, Olivia*, the STEM baddie, might be more sympathetic in that regard). But at no point was I ever comfortable with one person deciding that a due process (for a lack of better words) was not neccesary because I just didn’t know better.

At one point during the hour-long argument, Audrey blamed me for something mildly annoying that Madison* typed in the group chat. When I replied Well, that wasn’t me, that was Madison, Audrey said that I was being unfair because Madison wasn’t there to defend herself. Meanwhile, Audrey never told me who “we” were when she told me, We’re all busy. She also said, I’m sure I’m not the only one. She said that I was making things unneccesarily difficult; I just had to listen when she was pointing out a a problem behavior that made life stressful for all of us.

I felt like I was in the middle school locker room again. The popular girls would walk up to me, say “Good job” like I was five, and when I brushed them off, they’d briefly look at each other until one of them GASPED, frowning dramatically: “Asaka, that’s not very nice! That hurt my feelings!” They had a millisecond to exchange looks; 24 hours was more than enough.

I knew Audrey wasn’t exactly like those girls. In the short time I’d known her, she’d become one of my biggest cheerleaders. There was no sarcasm in her voice when she told me she loved how real I was. She said that she admired me for being true to myself and breaking free from the boxes other people had put me in. She also texted me first, something people rarely did. But this time, she was the one putting me in a box.

“I try to accommodate you, but I can only do so much,” she sighed when she called me that night.

I shouldn’t have brought up my struggles with ADHD. I brought it up the same way a frazzled coworker might bring up their daughter's school play when someone asks for extra work or skipped meals when someone's lateness is causing a delay. It still bothers me when people disregard rules because that is another person determining I’d be just fine without their courtesy. But first, Audrey and I had to agree on what courtesy meant, and I hoped that the phone call would lead to a mutual understanding.

On the phone, Audrey’s voice quivered with the compassion that I recognized. For a split second, my anger waned. Then, I realized that she wasn’t sorry for telling me to shut up; she was sorry for not telling me to shut up more nicely.

“It’s hard to tell tone in texting, and I was also really stressed. I just felt like I had to step up and tell you because everyone’s too nice to do it, you know?” she explained.

A feeling of detachment settled in, with a hot rush giving way to an icy stiffness behind my eyes.

“Like Madison—she’s, like, super chill.”

I wanted to hang up. The message was clear: You don’t belong (But maybe you could if you did as you were told). But I was glad she finally agreed to have a group meeting. At least then, I’d know who was okay with this.

Maybe I shouldn’t have been surprised that many people were. I thought about Miss Clements*, who had the world’s best intentions when she made me feel like my words were not words, my wishes not wishes—just meaningless noise:

“I feel anxious,” I’d tell her.

“Uh-uh-uh,“ she’d say. “That’s Inappropriate Behavior. And what did we say about Inappropriate Behavior?”

“You’re hurting my feelings,” I’d protest.

“This has nothing to do with feelings. Let’s try again.”

“But—”

“Uh-uh-uh. That’s another 10 Bonus Bucks off for Whining. Asaka, look at me. What did I say about Inappropriate Behavior?”

“That there will be Consequences?”

“Yep. And they are?”

“10 Bonus Bucks.”

“That’s right. 10 Bonus Bucks.”

The next morning, I texted Audrey, asking if we were still good to meet as a group. I also told her that I was still pretty shaken by some of the things she said the night before and hoped we could handle disagreements with more respect in our friendship moving forward.

WHAT?! she replied.

I don’t understand how it became such a big thing.

I thought about bringing in a mediator, but they’d probably just focus on the contract, and that would make me look like legalistic. That’s the other thing about stereotypes: you can’t run from them. There comes a point where this all stops being about freeing yourself and about how many people you’re willing to hurt in your attempt to shatter something that one person can’t possibly shatter overnight. Being the foolhardy bastard I am, I fell for it.

My fingers flew over the keyboard. Forget it. If this is how you feel, then I can’t be friends with you anymore. Besides, everyone else here is more like an acquaintance than a friend anyway. This isn’t worth my time. Bye!

I felt like a loser, and I figured I’d feel less like a loser if I started rejecting everyone before they could reject me first. 

For months, cynicism had been churning my head. Two days before the fight, I saw a post on Instagram explaining the difference between a friendship and an acquaintanceship. It said that autistic people often struggled to distinguish between the two, though when I recognized myself in its description of an acquaintance orbiting a friend group, there was no heartbreak or vindication—just a stillness in my head, as the “justs” drained away: I just need to get it together. It’s just a coincidence. Just one more try.

I told the group chat I was leaving for personal reasons.

Taylor* was the first person to message me. Asaka, I hope everything is OK. If there’s anything I could do to help, please let me know.

Thank you so much, I said.

I couldn’t yet say that Audrey’s comments were ableist, even though it felt that way; it felt cruel, like I was throwing her to the wrath of cancel culture. But maybe if I chose my words carefully, she’d actually see where I was coming from—and not just say she did because she was afraid of losing her job.

In the meantime, my frustration simmered, threatening to boil over. Knowing that Taylor had also dealt with microaggressions from other people, I turned to her, hoping for an unspoken understanding.

Just so you know, this is what happened, I said, as I attached the screenshots.

The comment about friendship was not directed at you, BTW. I quickly added. I’m just frustrated with how things are going with other people.

I meant it.

Taylor and I met when she reached out to me on Instagram, telling me she liked my writing. There was always something so thoughtful about her. Even though she’d become undeniably busier since then, she never did the whole nodding-off thing that many busy people do. If I was asking for too much, she’d tell me instead of just avoiding me, and if I was talking and she didn’t know what the hell I was on about, she’d ask me what I meant.

Taylor usually responded to my texts quickly, so I kept checking my messages. I gave it an hour—no reply yet. I waited twelve hours—she still didn’t answer. A full day, and still, nothing.

Honestly, I thought that anyone with a college education would recognize the power imbalance implied in the text messages with Audrey. I found it hard to believe that anyone would file this under your typical squabble between two friends, if not for Audrey harping on my social skills. That meant that her upper hand, wagging her fingers at me, was a necessary evil. Alturistic, even.

I was counting on Taylor to see through the bullshit. Where was she when I needed her? I started giving her dirty looks.

Madison also texted me: Asaka, I hope everything goes well. I just wanted to DM you because I wasn’t sure if you were comfortable with me texting in the group chat.

It was bittersweet—the first time that semester she texted first, about something unrelated to school obligations. I was thankful. But it was the kind of thankful you feel at farewells rather than housewarmings.

I hearted Madison’s message and turned my phone off. I knew that if I cared too much, the whisper of discontent would turn into a roar: Or maybe YOU don’t feel comfortable saying nice things to me in front of Audrey?

Someone was hiding behind someone.

Hours before, I saw on Snapchat that Madison, Audrey, and a few other friends had gone out. Audrey wasn’t there when they returned on campus, and when I walked by their table, they momentarily froze before picking up their conversation again. She knew.

Just to be clear: I believe in boycotting institutions, not people. The middle schooler in me wanted to issue an ultimatum—stop being friends with Audrey, or you’re a spineless coward—but I knew better. Nobody’s perfect, and everybody deserves to have friends. If this triangle deal was starting to affect my well-being, I had free will to leave. But I already knew where this was heading. There was no need to wait.

I did wait, for a couple of days. I wanted to make sure it wasn’t my impulsivity talking. It wasn’t. So I said the quiet part out loud: I don’t think our friendship is strong enough to withstand something like this.

I don’t expect you to get involved, and you didn’t do anything wrong, I told her. But this isn’t going to work out.

It’s not my battle, she said, in regards to Audrey’s actions. But I appreciate you telling me so that I get to hear both sides of the story which is what I strive to do in a situation like that.

When I saw Taylor at the staircase, wincing as she grabbed the handrail, I felt a pang of guilt. I knew that she’d been dealing with more, but talking about it less. It felt like we were both trying to hold it together, aware that one wrong question could push us a step too far from ourselves, leaving us feeling small and broken. If I didn’t spend so long trying to advocate for everyone else before advocating for myself, maybe I wouldn’t have grown so cynical. It wasn’t fair for me to expect her to be everyone else's Ableism Police all the time.

I texted her. Taylor, I’m so sorry. I know it’s not your fault.

Madison was laughing and chatting with her friends as if nothing had happened. When I came into view, Audrey pulled away, and Madison followed suit, never once looking at me. I didn’t see contempt or guilt in her demeanor, just a resigned understanding—as if Audrey was her sister and I was the family dog that bit her hand. But I was hurting, too.

I wondered if Madison would’ve been willing to help me if I didn’t write her off. Even though Madison and Audrey were closer to each other, Madison had known me for longer. Even if Audrey didn’t see how much her words could hurt someone, maybe Madison would have, and even if Madison couldn’t change Audrey’s mind, she could assure me I wasn’t crazy.

But I was worried I’d have to beg. A month before, when I stopped begging her to include me in her brunches, I felt a little less crazy. I wasn’t going to beg her to believe me that her best friend had hushed me in a way that felt painfully familiar—one that made my home uninhabitable at the time, prompting her at one point to send me $100 to escape, one that institutions paid people to do to me just because I was disabled. Maybe I wouldn’t have to beg, if I annotated the receipts, highlighting the most charged words and footnoting how the conversations could’ve played out differently, and then sent them to her.

When I finally sent Madison the receipts, they were unmarked and we were officially unfriended. I’m experiencing your lack of involvement as betrayal, I’d written. She responded to my pain with the glib indifference of a customer service representative, so I figured I’d seal the end of our friendship with the chilling formality of a plaintiff.

Between sobs, I wondered if Audrey was also hiding things from Madison. I didn’t think Audrey was that shady (or stupid), and I didn’t want to think I ended a two-year friendship over a hasty assumption. But if that was the case, I had to face my mistakes.

With the screenshots in hand, Madison remained unmoved: It’s not my place to comment because it’s not my battle.

It’s not my battle. I knew that turn of phrase just meant it was none of her business. But it also underscored our different realities: hers, where her words were believed by default, and mine, as a visibly disabled person, where every account I gave was met with Are you sure that’s not a misunderstanding?

I wiped my tears.

The truth was that I couldn’t make up my own damn mind if Madison was a generous acquaintance I burdened for far too long, or a flaky friend who let me down one too many times. We used to be good friends, but we’d been drifting apart slowly.

I wondered if she’d remember me as the disturbed stalker girl who was convinced we were soulmates, showered her with compliments, and went on bizarre, cryptic rants, or a stuck-up friend who abandoned her over a seemingly minor inconvinience; probably a little bit of both, as she’d say whenever I asked her a question about how her mind worked: Would you rather text or call? Did you not see that I was upset the other day, or did you just not see why? Do you find comfort in certainty or ambiguity?

A couple of months before I cut Madison off, I began updating her on my therapy sessions and analyzing our differences. I thought that maybe it would help us better understand each other, but it didn’t. When I decided to leave the group, I chalked up those instances as yet another effort I invested into friendships that weren’t returned in kind. But after two whole weeks without hearing her cheerful, steadfast voice, I began to wonder if it all felt entirely backward to her, like those old Tumblr groups that played amateur crisis counselors for each other and competed over who was the sickest.

Abandoment. Trauma. Grief. Madison had faced all of these things on a much larger scale, yet I never saw her take her emotions out on anyone else, EVER—which probably made my theatrics, an emotional display over a friendship I chose to end, all the more pathetic to her.

Madison was better at compartmentalizing emotions, but I was better at extracting emotions. I could finish people's sentences using their tone, expressions, and context clues, and when I needed help but felt overwhelmed and unsure where to start, I found a way to get them to finish mine. These skills always came naturally to me, but of course, since other people doubted me, I had to keep proving myself. When I started college, I became even better at it because managing my disability required a great deal of initiative on my end.

Madison wasn’t really into that stuff. Part of it, I knew, was that she had to grow a thick skin and stop worrying about what other people thought to maintain her equanimity. Being strong was what held us together, but drove us apart in the end.

On the Notes app, my final messages to Madison—a word salad of accusations, apologies, and well-wishes—read like a respectful acknowledgment of our mutual differences. Once wrapped in a blue text bubble, it resembled nothing more than a grand finale of the guilt trips that had strained the friendship. I sounded melodramatic as fuck, too, like we were singers filing for divorce, our scandalicious affair now up for grabs at your nearest tabloid counter: I let you go because I also sensed you were burnt out. I hope you know I care about your happiness, too.

In a way, though, there was something scandalicious beneath all this. The icy stiffness returned behind my eyes as I re-read Audrey’s text messages, supposedly on behalf of us, wrapped up in discriminatory rhetoric. Never, in a million years, did I think it would happen in this place, with these people. Or that she’d walk away unscathed, while our mutual friends, who wasn’t even in that group, started looking at me like a monster.

These mutual friends told me they'd rather stay out of it but I knew damn well what they meant: Of course, I'm treating you differently based on all the horror stories I’ve heard about you. Thanks for reaching out so that I can report back to them that you LOVE drama.

If not for everything else that happened, Audrey and I might’ve one day become friends again. After three long weeks, she’d given me an actual apology—not the I’m sorry if that offends you variety. I told a joke, and she laughed. When I got the flu, she offered to send me her notes. It was like I woke up from a nightmare.

Taylor asked me if I was still leaving.

I took a deep breathe. Yeah, I told her. I admitted to her that I was hurt by the way no one said anything or seemed to care. Taylor apologized. She also admitted she was hurt by my offhand remark in my texts to Audrey about how no one was my friend. We forgave each other, and agreed to mend our friendship.

But the rumor mill showed no signs of stopping. I never found out what exactly they were saying, just that the dirt on my name had surpassed Audrey’s microaggressions (or even that one other kid who got ousted the year before for something more serious). I got the message, loud and clear: my decision to end an unsatisfying friendship with Madison was the ultimate expression of my wrongness that made me undeserving in the first place.

I felt duped. Earlier that year, when I confessed to Madison that I felt abandoned, she promised me that she was going to reach out more. Yet, I saw no real change. “You can be more upfront with me, too,” she reminded me. “I don’t pick up on hints. I’m a straightforward person.”

For months, I’d been unraveling:

Why didn’t you invite me? No that’s not fair of me there’s nothing wrong with anyone hanging out without me I just feel like you don’t care about me. Why do you not care about me? No I know you care about me sometimes it just feels like you’re not there. What’s stopping you? No I don’t think anything is stopping you you just do things differently than I do. How—You know what maybe I’m making this more complicated than it actually is I just miss hanging out with you like we used to.

The answer was always the same: Yeah, one of these days. She was busy—busy hanging out with everyone else.

It just seemed like Madison was one of those people who only paid attention to me when I was crying, and that couldn’t possibly be healthy for either of us. I wanted to Get Well—wasn’t that what we all wanted? But at the end of the day, she is a person; not a bad habit I can Opposite Action my way out of.

When people stop talking to each other, we fill the void they leave behind with a tapestry of "No wonder," stitching together everything that’s ever gone wrong into a single, neat explanation.

Mine said that Madison, Audrey, and God knows how many other people had been pacifying me with half-hearted apologies and false promises, while making no real effort to spend time with me because no one wants to be the Bad Guy, and it’s much easier for them to tell the world about all the things I did that hurt them than for me to tell the world about all the things they didn’t do that hurt me (No wonder why I was running in circles, promising them I’d change but couldn’t). They couldn’t be bothered to ask me for clarification or offer alternatives and expected me—someone who struggles with recalling and organizing information—to do all the communicating (No wonder why I looked like I was never happy with anything), and seemed to care more about congratulating themselves for being Patient and Understanding than building my confidence (No wonder why they were so offended when I left even though they didn’t seem to miss me when I was still there). Was I just a trainwreck unfolding in slow motion, for them to watch and post on their Discord servers?

On their end, I’m sure, it went something like this: Asaka went on a rampage because she didn’t like how something was worded, like we’re supposed to memorize all her triggers (No wonder why everyone was too scared to have an actual conversation with her). Asaka says she “values boundaries”—The. Biggest. Lie. Ever. All she ever did was cross lines, step back, and say “I’m sorry for my part. As for…” Like we owe her even more now because she finally stopped stomping her foot and used her big girl words, like congratu-fucking-lations (No wonder why she went nuclear when someone told her “No” for once). Asaka left because she needed new people to lie to (No wonder why she’s being oh-so-charming with her new “friends”). Did she ever care about “getting better,” or was it all an act?

Recognizing my past mistakes brought the typical mixture of guilt, forgiveness, and relief—I was never with “bad people”, and this was my chance to learn and grow. Yet, it also deepened my anger: Why didn’t anyone tell me? I’d been treating so many people like they were worthy of talking to, and not about, when they didn’t feel the same way about me, and I’d been doing this so guilelessly, for so long, that they saw no limit to the humiliation I’d accept to get a seat at the table. No wonder—

Open communication is always easier said (that is, in abstraction) than done. I thought about a time when I knocked at Luna*’s door at 8 AM, telling her we needed to “take a break,” because I was so overwhelmed by her rants. A few months before, I’d started saying more of what she wanted to hear, hoping she wouldn’t press me on the matter once she got it out of her system (and got past her stressful Thursday labs). But she did, and my anxiety about letting her down grew into something all-consuming and noxious.

Luna and I ended up resolving it on the spot, and two hours later, we were laughing our asses off at Panera. After that, she and I spent a year working through our issues, and we both agree, with amusement, that if we weren’t as close as we were, we would’ve given up by now. Our bond was remarkable. So, maybe I was a jealous hater, after all, and the only crime I accused Madison of was not being close enough to me. Of course, no one owes me closeness.

But if someone that I worked closely with—whether I considered them a friend or not—was being discriminated against, I’d say something! I’d try to help, even if not directly. And if it was my own friend enforcing it in my name, I’d stand up against it, right? How difficult could it be to say, “Well, I don’t agree with that”?

All the what-ifs, what could’ve been, and what might’ve been spun in my head, mirroring the motion of the rumor mill. Turning. And turning. And turning. Imagination frayed at the threads of “no wonder,” turning the strands razor-thin and pin-tight, threatening to deconstruct the next person ensnared—me or someone else.

For months, people continued to give me the same side-eye: I know what you did. Your chances are up. It accused me of being clueless, or thinking they were clueless. 

Emotions, of course, are inevitable after a fallout. What’s a little bit of a dirty look? 

Well, according to my pride, everything. How could anyone think I was going to come back crawling, begging to be accepted into the group again?

I couldn’t rest until that idea was thoroughly dispelled. So I posted snarky comments on social media and, whenever I saw the old group in the hallway, I made a point to pass by them with the fakest, snobbiest smile and wave I could muster.

Taylor frowned. 

I thought that we were good. But clearly, she was appalled by the person I’d become since then. 

“Taylor, please. You know that I don’t have a problem with you,” I said.

I wasn’t thinking of her when I stuck up my nose at everyone. At those people. At that place.

Oh, the antecedents.

That is to say nothing of Olivia, her best friend, who I didn’t know nearly as well, but made my time at the place a bit more bearable with her gentle presence. I didn’t realize how ungrateful I’d been acting.

I was just stressed and busy—busy rebuilding my confidence and proving the haters wrong.

As if that was an excuse and not an indictment. As if I wasn’t the one shouting from the rooftops: friends don’t treat friends like an afterthought.

I was a hypocrite.

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I entered my twenties, feeling lost and out of my depth, but hesitant to admit I was struggling socially let alone that I could barely relate to people, because speaking these words made me a part of stories that sounded exactly like mine—until woosh! A big plot twist came along, revealing what everything had truly been about all along, and before I knew it, I was back where I started, if not somewhere worse, somewhere no one could find me. I felt like an outsider among outsiders, incomprehensible, unfathomable, and trapped in a never-ending game of hide-and-seek from anyone who tries to connect.

Sometimes, I feel like I’m alone and I’ll never figure it out, but I know that I can; I’ve figured things out on my own before. Not that long ago, getting out of bed felt like a Herculean task rendering half of my waking hours useless. I remember going to class with crusty eyes, my mouth smelling like actual shit, emanating a metallic tang when I finally brushed it.

Now, I sit in front of the mirror nearly every morning, relishing in the quiet luxury of getting ready. I show up overdressed and some people look at me funny—as if I’m missing some unspoken rule about TPO (Time, Place, Occasion), but I don’t care. Each detail of my appearance tells a story about how I conquered the hurdles of distraction that once left me bedbound. The tightly curled lashes and overlined lips show that I got out of bed and showered instead of mindlessly scrolling on my phone for hours. The bounces of my deliberately teased hair remind me of the persistence it took to style myself with my motor skills. The cloud of perfume reassures me that I’m home, no matter where I am—safe in my own body, in my own mind.

But what if I told you that sometimes, prettifying myself is all I could do to distract from the deep-seated shame whispering that I’m a monster? That I’m bad, not a bad bitch, but bad, period. Inherently, inescapably bad.

As a teenager, I never understood why other girls would say things like “I’m ugly and stupid and a horrible person,” because what does being ugly have to do with any of these things? After all, physical beauty is subjective and has no moral value. Until I reached a depth of self-loathing, where even my own reflection turned against me. I’d check my Instagram, curious about who from my first-year seminar unfollowed me, to find myself mindlessly scrolling through my old pictures like a political cartoonist looking for unflattering photos of a disgraced millionaire. And before I know it, I’m dissecting every “flaw.”

Yes, I go to therapy, and yes, I sometimes wonder if I’m a horrible person and I’ve successfully fooled everyone, including my therapists, that I’m wonderful.

How do I know that I have a good heart and not just a hollow soul that feeds on honeymoon periods, when I’m always compensating, under-doing here, over-doing there?

How do I know that I’m reaching out and not just burning through people like matches when I keep saying “I can’t do this anymore,” flooded by the grief of discovering and rediscovering what is and isn’t possible for me?

How do I know that I’m working on myself and not just doing PR, when every conflict feels like a long division, a single error turning a simple equation into a never-ending process, making me feel like I’ll never be clean?

My social media algorithms promise me that I can be clean.

Do you ever feel like people instantly dislike you?

Or that everyone you hang out with ghosts you?

And like no matter what, you keep fighting with the people you love?

You’re not “crazy” or “sketchy” or “unlovable,” it tells me: You’re autistic.

People can be both, but that’s beside the point. I’ve been told, time and time again, my diagnosis holds the key to bettering myself, recognizing my autistic traits will allow me to finally get my life together, eliminate drama, and navigate the social world with confidence (yay!).

Navigate the social world. Every time I meet a care worker, they look at me with awe and a hint of apology, astonished by how I even managed to come this far. I don’t know. I can find my way just fine. Maybe not physically, but psychologically, yes. I know where I’m going. I know where the channels of communication overlap. I can usually predict which way the other car is going to turn. I can spot signs from a mile away and I always know whose turf I’m in.

What I find difficult is maneuvering. Every effort to get myself across is punctuated with abrupt swerves, screeching halts, and long-winded detours. At my worst, I've missed my exits, plowed through fences, burnt bridges, you name it.

Misspeaking, I’ve found, is a lot like running over freshly painted lanes. You can pretend it never happened but then you’re leaving a trail (and you better forget about it ASAP, because if look at it you might get distracted and crash into a pole). Or you can turn around and try to clean it up, but risk further blurring the lines.

Most people don’t understand the emotional toll of managing the gap between my ability to navigate and maneuver. Everyone second-guess ourselves in social interaction, some more than others, especially in new or unfamiliar situations. But when your brain and your mouth are always out-of-sync, it feels like you’re speaking in codes that only you can understand.

It gets lonely. You’re threading the fine line between controlling yourself and controlling other people, deciding if it’s okay to explain (“I’m only asking because…" or “Wait, did I tell you that…?”), send multiple texts, or tell someone you’re sorry before they confront you. Sometimes it feels like one misstep is all it takes for you to land in a weird, uncomfortable, and downright disastorous social situation where no one would believe your answer to “What on Earth were you thinking???,” with no hashtag movements to back you up or give you advice because most people who think like you don’t get themselves into these situations to begin with.

My Instagram Explore page is full of others with my diagnosis venting their (completely understandable) frustrations at non-autistic culture and society: Allistic people had their way validated, affirmed, and catered to by society their whole lives, while I’ve nearly killed myself trying to fit into their mold.

I wonder how they’d feel if they met me. Would they like me?

In a way, I’m privileged. I can get a passive-aggressive email and quickly save face. I can half-listen to an awkward meeting and pick out a handful of people in the crowd who will say “Ugh, I know right?” after we get out. I can turn on the TV after a long day, and be greeted with social interactions that just make sense, on a platter ready to serve.

In theory, my thoughts, feelings, and desires hold more weight than that of some of my friends’, which is upsetting. That’s not fair, and that’s not how things should be. But it’s hard to have that conversation, when my thoughts, feelings, and desires haven’t been allowed to flourish, and often aren’t believed to be mine in the first place.

From responding to every “Do you like my shirt?” with anything but a “No”, to offering things to people even (and especially) when you know they’ll say “I’m good, thank you” just to show that you’re thinking of them, human interactions are laden with niceties that turn what could be a simple exchange into an elaborate dance. Much of the autistic community rejects these conventions, calling them nonsensical riddles and mind games. 

But what if I told you I can’t get enough of these?

Growing up, I was excluded from participating in those rituals. Social contracts were withheld from me in a way to mark me as the incapable, unqualified “other.” My middle school memory is full of classmates, with no apparent disabilities, flouting decorum in my presence—stating the obvious, asking nosy questions, and not even trying to have a back-and-forth conversation—to see how far they can go (many times, because they genuinely had no idea how to interact with me).

As I’ve grown into adulthood, I’ve found a strange comfort in not just following decorum but also enforcing it upon other people. I don’t think I’m alone in craving friends who will listen to me talk about puzzling interactions with other people and give me the validation I’m seeking. But there's also a part of me that's plain mean. I know how to round my lips and hold my gaze (as much as I can) at an idle, yet dangerous distance, like a cat sizing up its prey.

This tough exterior protects me. It tells the world that I will notice if anyone does or says something a bit “off,” and that snubbing me probably won’t be a good idea. No one from my classes have spoken to me like a child for at least a year. Now, I’m sure people laugh at me for being cocky and obnoxious all the time; the point is that I rarely get called sweet and adorable anymore. But a part of becoming an adult is realizing that armors are rarely just armors. They can hurt other people, too.

I remember one time, having lunch with a friend of a friend that I met from a disability group. He asked me a question about something (maybe my major, if I remember correctly—it was unrelated to disability), and though he was genuine, his way of asking might have seemed nitpicky to some other people. As I preened on my phone, I saw that mean look in my eye. I was ashamed of myself.

I don’t want anyone to feel judged the way I did.

We all just want to be loved and accepted for who we are. That’s the foundation of my empathy for other people in the disability community—and really, for any human being. I’ve given up on parallels or counterparts in that regard because I don’t fit the equations.

America’s favorite therapist friend, Brené Brown, once said: “We have to know where we end, and others begin if we really want to show up with empathy.” I know how important and hard that is because I occupy two spaces in the public imagination: it’s like the world sees me as autistic, while I see the world from an allistic, or non-autistic, viewpoint. Of course, I’m going off what I know so far, which comes from what I see out there, which is why I said public imagination. Of course, I could be very, very wrong about all this.

Braving the tightrope between paternalism and exceptionalism has always felt perilous but not quite courageous. I’ve been looking for place to unpack the confusion, loneliness, and alienation has been weighing on me for so long. But if I misplace my baggage, I’m not just hurting myself; I’m hurting other people.

I know that Spring has sprung when my LinkedIn feed fills up with pitching calls for Autism Acceptance Month, alongside the usual PSAs: marketing coaches reminding me to know your audience, and DEI experts cautioning me not to speak for a group that I’m not a part of.

Am I on the outside looking in, or the inside looking out? I don’t know. I don’t know. I don’t know.

And that scares me.

I’ve spent so many April nights feeling like time is slipping away as I scroll through comment sections, reading one story after another that seems to be the opposite of mine in so many ways.

Did the conversation forget about me, or was that conversation never meant for me in the first place? 

I don’t know if I was born autistic and whether that means that I’ll die autistic or not, but I can tell you right now that I was raised autistic. I was a ward of the special ed system. I got the help, and I also got the stigma.

Despite this, I often find that my way of thinking, reasoning, and making sense of things aligns with the non-autistic majority, the way I understand it. That doesn’t mean I’ll never relate to an autistic person as well as I do to an allistic person; some of my closest friends have told me they are autistic and I love them unconditionally.

Distinguishing between autistic/allistic is only one way of describing people (I’ve written here and here about the differences). For me, the distinction matters the most when I’m struggling in my social life. Autism is the first thing that we think of when we think of a disability that affects social interactions, and if I’m seeking out that information, it’s because I’m already feeling lost. It gets frustrating.

Talking about my struggles in designated disability safe spaces can be hard. I find myself saying things like “I say and do things I don’t mean,” before correcting myself to say “I say and do things that other people interpret as XYZ” to be respectful of diverse communication styles. Sometimes, when I tell stories about a super awkward situation caused by my symptoms, hoping to get comfort, I receive confused, if not disappointed, looks, becausd they don’t see how it’s awkward. It makes me feel empty, and I don’t know if it’s a sort of a sunk cost fallacy—so you’re telling me all the care and energy I invested into socializing “normally” was ultimately for nothing? 

And I already know what some people would say to that: Yeah and why does that matter? 

Asaka, the ableists doesn't like you, either. PS: social norms are an invention of colonial, white cis-hetero patriarchy? Ick.

I don’t know. Social norms are natural and exist across cultures (Take “nunchi” for example, a Korean concept which means “eye-measure” and translates to “gauging.” In the MindBodyGreen article, What Is Nunchi? 8 Rules For This Korean Secret To Emotional Intelligence1, Euny Hong positions nunchi as an antidote to toxic individualism: “Nunchi emphasizes the room as a whole, single organism, and not just the people within it”). But I can definitely see how social norms can be used to oppress people. I’m sure that reprehensible actions like "treating people differently based on the color of their skin" or "slapping your female secretary’s ass” started off as a widely accepted etiquette, not much different from “Saying ‘Bless you’ when someone sneezes” and “Eating with your napkin on your lap.”

We can all stand to question things, and the autistic community offers valuable wisdom, challenging all of us to meet differences with radical curiosity, not just forgive (“She didn’t know any better”) or forget (“That’s not her, that’s the disorder talking”). It’s an honor to be invited into that space. On a personal level, I feel like many of my autistic friends are great at asking for clarification and pointing out holes in my stories, which is extremely helpful when I’m struggling to articulate my thoughts clearly.

So YES to open communication. YES to making fewer assumptions. YES to not turning every conversation into a godforesaken Cold War. But sometimes I’m just like: Why do I have to be the one that leads the revolution?

I’m not Your Neurodivergent Bestie™ and I’m not here to save the world. My disability isn’t some statement of ultimate truth; it just is. And for me, what this means is that the signal from my brain to my mouth gets mixed up and I’m trying to live my life and I don’t want the world to decide what I’m good for. 

I carry the stigma of autism, all while feeling invisible in my so-called safe havens, and am trying my damndest not to send the wrong message—that I'm uniquely undeserving of the struggles others face, or that other people should be more like me—in a world filled with hate. I’m not sure how I found the courage to write about this stuff. Perhaps, despite everything, the universe hasn’t played a cruel joke on me after all.

When Franchesca and I meet at Eickhoff Hall, we’re catching up. We talk, she replies to her emails, I update my Notion, we talk some more, and occasionally, we recreate the middle school sleepovers we missed by hogging the Arts building at ungodly hours. One night during final exams, we decided to study together from 10PM to 4AM. When we went out for a drink and a bathroom break, we got locked out. I got someone to let us in, and when I turned around, Franchesca was blowing bubbles in the hallway. I could barely contain my laughter—good thing I already peed.

People say that she and I both have accents, referring to the way we pronounce words, but what I notice more is how we accentuate our words. We talk wide-eyed, with our hands, sometimes tapping on our own chests, and sometimes scrunching our noses to say, “Oh, you know” or “It’s OK.” 

But I’m more tense. Jerky, almost. A lot of it is my motor control. I can barely aim a spoon to my mouth; every time we put our plates away, mine is overflowing with crinkled napkins while hers is not. A part of it, though, is that I’m used to forcing everything and I forget that I don’t have to. Sometimes it feels like I’m not trying hard enough if I wasn’t feeling resistance. 

Not long ago, my synapses were misfiring every waking moment; there was no blank stare, a dull reply, or an awkward comment, that I didn’t accidentally produce, that I could save for when I had to make a Statement capital S. If I wanted to make a point, I knew that I had to go over-the-top.

I’m used to screaming above the noise, in any way I can. During the worst of my speech impediment, I was very pushy. In my younger years, I’d butt into conversations and repeat myself in case they didn’t quite catch what I was saying, hoping for a different outcome. When I got older, I pictured approaching them again when my body would cooperate more and I could be a 1000% sure they heard me speak.

The act of putting myself out there was never not a gamble, and entering adulthood, my risk tolerance was off the charts. Well into college, I was resorting to shocking, extreme antics, making faces and staging dramatic outbursts when I felt ignored. And though it may have been immature, it was anything but stagnant, a far cry from the zombie days where being alone didn’t make me sad, just bored, where being excluded made me feel frustrated, not hurt. But there had to be a better way.

“I can’t relate to people in a functional way,” I confessed to Franchesca.

She put her hands on my back.

“The more I think about it,” she murmured, “the more I think that people are the way they are because of how they grew up.”

We like to label people as one thing or another, she said. But who ever asks them about their life story?

The truth is that I have hurt people and I have let other people hurt me. I have hurt, in ways that are specific to my disability and in ways that are not, and everything in between. I dance with the devil in the space that lies between my ordinary reflexes and my extraordinary circumstances. And when I look back at the moments I felt the most disconnected from other people, I don’t see a divide along the lines of “Asaka, the literal, straightforward autistic one” versus “the non-literal, indirect non-autistic one.” 

I exhibit mannerisms, speech patterns, and habits that we commonly associate with autism, though I don’t rely on the autism community to explain their significance. Aside from that, I also have deeper struggles with connecting with people, and when I describe in in a few words, it most definitely sounds—not just look—like autism. But if I keep going, you’ll hear nuances that often gets overlooked in conversations about autism:

I know for sure that most people in the autistic community will be able to relate to my description of feeling like communication is a never-ending long division problem. Many autistic people experience miscommunications because they interpret things more literally than the non-autistic majority. For example, an autistic person may be seen as “defensive” for trying to answer a rhetorical question; “manipulative” for sharing factual details intended to be informative but are interpreted as accusatory or “shade” by the listener; “disingenious” for saying “I’m confused” or “What do you mean?” 

I’ve definitely struggled with miscommunications more than someone who doesn’t have a disability—not necessarily more often, but when it does happen, it seems to spiral out of control quickly—and I’m sure that many people think I’m defensive, manipulative, or disingenuous, which, I am sometimes, but that’s not all I am. Even so, my struggle with communication doesn’t mesh with the patterns that are being described.

In Unmasking Autism, psychologist Devon Price notes that autistic people take little for granted, but sometimes it feels like my brain takes too much for granted. Before I got on medication for ADHD, my thinking was extremely vague, and even now, communicating is a conscious practice of telling myself WHOA—Slow down. One thing at a time. Elaborate!!!

I can recall countless moments in my life where I sensed that something wasn’t right in a situation, and my instincts turned out to be right. Yet, capturing the essence of my concern felt like tugging at fringes, unable to fully grasp the threads. Despite always being the first person in the room to speak up, my efforts materialized in roundabout ways, through loosely related examples and counterpoints buried under at least 3 layers of “but’s.” These things sometimes created unnecessary drama, and I’d panic and agree to things I later resented or resort to genuinely lousy excuses to get people on my side.

That morning I told Luna* I “needed a break”, one of the first things I told her was, “I don’t want to be someone that I’m not.”

I still remember the way her voice shook. “I change myself all the time to fit other people,” she said. “I’m always putting other people first.”

No one wants to hear from their best friend that they need “a break,” but my comment hurt her particularly because it made her feel like she wasn’t good enough. I knew that she felt that way; that was the reason I was having the conversation, and what I meant was that I didn’t want to change myself, either. It was just so obvious to me (and to her, as well) that I just… forgot to acknowledge it.

Now, I’m much better at articulating my thoughts and feelings, but I have to be very intentional about giving myself time to process things, even if I don’t think I need it, because these disjointed responses can still come out when I’m under extreme stress.

When it comes to social chitchat, I do better one-on-one than in group settings—yet another common autistic experience. But when this phenomenon is discussed in the context of autism, we tend to look at how groups work in general. Most autistic people will say that struggle to decode the facial expressions and body language of multiple people at once, and that it takes then longer to familiarize themselves with the dynamic, like who’s closer to whom, or determine where to get more information and how much to disclose to each person to minimize gossip if a sensitive topic arises. How many times do I have to say that none of these things are difficult for me?

In group settings, I take all the “moving parts” in stride (and I’m not one to pass up the oppourtunity to be the center of attention) but often find that my responses fall short because the dynamic is inherently skewed against me, and no, I’m not neccesarily talking about people being judgmental jerks. Just as physical strength or lingustic barriers can create power imbalances, having different abilities can do the same, allowing other people to influence situations in ways I can’t. Even when no one is abusing it, my brain can start protesting in unhealthy ways—I almost want to say language of the voiceless, but we’re cutting that shit! I don’t have to be voiceless! I’m learning to leverage my strength in a positive way. It’s been a grueling, but rewarding, journey.

For example, I’ve always struggled to keep up with friends who were into TV, movies, and books, because my difficulty concentrating made it nearly impossible to engage with these things. Though I connected to many people through my passion for fashion and posting on social media, academic problems made it nearly impossible to maintain that monentum. It always felt like when things were starting to get better, they would unlock yet another milestone that I couldn’t reach.

When many of my friends started getting cars, and hangouts shifted from common areas at school to faraway locations I could only go to if someone from the Core Group ™ extended an invitation, which rarely happened. This made me feel like I had one of two options:

A) Rack my brain trying to come up with plans that were more exciting than the ones offered on the table

B) Explicitly invite myself, and make them feel uncomfortable

I’d get frustrated by their lack of effort in planning logistics, but couldn’t articulate that or even recognize it as the real issue. Instead, I kept apologizing for being awkward and sporadically lashing out, hoping that something would change.

Therapists have shown me circles. I’ve seen rings—the innermost core of trusted people, surrounded by progressively widening strata of work friends, acquaintances, and strangers, each of its own set of appropriate conversational topics and expected favors associated with each stage of friendship. I’ve seen Venn diagrams—showing the overlap between “you” and “me,” and the importance of not pressuring people into doing things they don’t want to do. Yet, it felt like no matter how hard I tried, I could never aim correctly.

It wasn’t that I didn’t see these fine distinctions; I didn’t have solid footing. I’m all too familiar with the feeling of walking into a room, where their ledges are made of concrete, built brick-by-brick with shared experiences—things they’d heard, seen, touched, and tasted together—and mine are made of glass.

I’ve asked multiple therapists if I had BPD (Borderline Personality Disorder), which is characterized by intense, unstable relationships, frantic efforts to avoid abandonment, and "splitting," where a person idealizes or devalues someone based on one thing they did. Although anyone may engage in these behaviors occasionally, individuals with BPD are more likely to frequently "test" others and reject others to avoid being rejected themselves.

My therapists said it was hard to tell because my brain was still developing; I also recognize that my circumstances are unusual. My fear of rejection, for example, didn’t stem from the need to be liked by others so that I can like myself; I simply craved my daily dose of human contact (for an extrovert, please!) that most people were already getting.

My functional limitations—difficulty engaging in hobbies, going out, and doing busy work—kept my world small, while the people who serendipiously entered it became huge, omnipotent. I consistently ranked most of my friends much higher on my priority list than I did on theirs, and eventually, I started to feel resentful.

My feeling of resentment was compounded by the extra work of communicating. I felt the need to explain my disability to every new person I met (If I don’t tell my story, someone else will). The people who didn’t notice my disability at all often didn’t notice other social nuances that were important to me. It felt like maintaining friendships always involved more work, one way or another, and I couldn’t quite shake off the uncomfortable atmosphere where a casual hangout could turn into a marriage counselling session at any moment.

In the thick of my brain fog, I felt like an idea—both an elusive, untouchable ideal and a sustained simulation like a dancing dog, held by the arms to make it wave—instead of a person you can hang out with. I still grieve the time I can’t get back.

Though I’ve become much better at dealing with social situations where things don’t 100% go the way I’d hoped, I still have days where I feel drained by navigating my practical constraints. For example, it’s not safe for me to drive because of my disability, and I have to factor that when I initiate plans. Casual offers like “Let me know if you need a ride” can present an exciting opportunity for a first hangout that turns into a lasting friendship, but from there I have to get a better sense of the offer (an excuse to hang out, or just for urgent situations?) and how I can even begin to pay them back. It can quickly get overwhelming if I’m struggling with other obligations.

Sometimes, people have trouble deciphering what I’m saying because I might not speak as clearly, and that definitely shapes group dynamics, sometimes making me feel invisible in groups that don’t strike me as particularly “cliquey.” Recently, I’ve noticed that the way people behave around me versus around other people bears an eerie resemblance to how I behave medicated versus unmedicated, which was an upsetting but illuminating realization. It all made sense: people straining to listen, reminding themselves to be “on,” and not knowing how to respond, especially in bustling or distracting environments.

There are times where people find it easier to focus on each other than to me, and due to the nature of my speech impediment, I’m sure, someone (whether they have a disability of not) might not pick up on the connotations of what I’m saying, even if it’s obvious to me.

After all these years, writing is my go-to when I feel disconnected for people and when I want something more, though my relationship with it has changed profoundly. When I was a kid, I was anxious to become writer so that I could explain myself to the world, but these days, I see tremendous value in explaining myself to myself before letting the world bear witness.

My friendship with Franchesca began because of a writing project, but flourished entirely without it; she hadn't read a single article from me when we started calling each other best friends.

“You know, I was diagnosed with autism when I was ten,” I muttered. That, she knew. I’d mentioned it at the roommate meeting. 

Franchesca told me she knew a couple of kids from her class who said they were autistic.

“I don’t understand why people judge them because they all seem really nice. And smart, too! But Asaka, what is autism? Is it just… being a little bit different?” 

I sighed.

“That was my MUSE project.”

And I was nowhere near done.

“Asaka, eat,” she said, pointing out my unfinished bowl. 

But what is autism?

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“I know you said that you struggle with loneliness…” my friend Luna* drew in a breath.

Between each word, her voice creaked ever so slightly, like the sound you hear between steps when you thread a floor as gently as possible.

"…and that you don’t like cliques… right?” 

I knew where this was going. 

The day before, Luna and I had something planned at 5. But I overheard my other friends say they were going to play a game at the student center, and well, I hadn’t yet kicked the habit of inviting myself, so I went my merry way. I came back at 5:30. 

“Listen—I’m sorry for being late. I should’ve watched the clock. I really am sorry.”

Luna looked at me. “Asaka, you’re still avoiding the question.”

“I don’t know how to say this nicely, but lately, you’ve been acting… desperate. I’ve seen you follow them around day in and day out.”

Luna said I was selling out. Said it wasn’t cool that I didn’t invite her, even if I came back on time, that it was a dick move in general. I thought it depended on the occasion and what the person was doing.

“Obviously, I had to do a lot of work that day, but you could’ve still asked me. And it’s not like I don’t know them—didn’t we make that group chat last week?”

I wasn’t sure if I should apologize. “Thank you for telling me how you feel,” I said gently.

I told her I’d happily tag her along next time, but that doing it to tick it off a box would take the fun out of it; I’d rather just take it as it comes.

The next day when my other friends hung out without me, I cried. When Luna heard my voice break on the phone, she told me I was being hypocritical.  The frustration in her voice struck a chord with me, but I didn’t know what the answer was.

I never had a hardline stance on invitation etiquette, and I still don’t. But that month, I didn’t see why my friends couldn’t have invited me, or reached out to me individually—even to just send me a TikTok video. Either would’ve meant something to me. My anger, I’d later admit to them, was my excuse to hear that I meant something to them. The only thing I had left to do was to await Luna’s admission. 

Luna was the person who eliminated any remaining notion that I was here to impress rather than to connect. I never really said the phrase, “That’s what friends are for,” until I heard Luna say it all the time. In high school, a three-minute conversation where the other person said “bye” happily was a success. I celebrate small wins. Wins, as if this was a game. But Luna told me it was okay to want more. 

As college became more real, Luna and I supported each other in different ways. I knew that she sometimes felt sad when I only listened to talk about myself or didn’t check in on important days, so I started jotting down memories onto notes so that I could ask better follow-up questions. 

Luna showed me support by keeping the conversation going, never taking my lack of words as a lack of interest. Like Kayla, she’d go on these heartfelt rants. She carried symbols of strength handed down from her mother, a Humans of New York's worth of lessons from strangers befriended at bus stops, and a burning determination to make the world a better place.

But she also spoke of the oceans she’d cross for other people and the puddles they stopped at. She told me about moody friends who left her to pick up the pieces and flaky colleagues she had to hunt down and this feeling that she couldn’t shake off, that she was an outsider amongst outsiders.

“That’s ridiculous, I’m so sorry. Why do people do that? I would never do that” I’d say.

At first, I was flattered that she confided in me. These were the sorts of things people usually kept from me. Then, a queasy feeling began to stir within. Somewhere in my stomach, I think, but not exactly sinking, not exactly knotted. 

The truth was, I was barely keeping it together myself. Luna and I were close enough to talk about everything, but in a way, that made it hard to see the whole picture. Luna knew about my therapy homework, the side effects of my meds, and my endless internal debates. I always put in extra effort to slow down and pay attention—an effort that easily waned if I were around other people who honestly weren’t as important to me.

How could I be sure I wasn’t exactly the same as the people she complained about?

Eventually, that whisper of doubt turned into outright avoidance. In groups, I was a people-pleaser, running around to help everyone, in hopes that Luna wouldn’t have a disappointing encounter that I’d later hear about. When it was just two of us, I was a contrarian prick. I complained about someone before she did, because I didn’t want to be in a position where she could say “I told you so.” But if she brought it up first, I’d go “Okay, but wait…” eager to play the devil’s advocate.

I knew Luna hated it when people said one thing and did another, but these people promised things to her that they couldn’t keep. I was trying so hard not to be a letdown by running from commitments, but ultimately, I ended up doing the same thing: saying one thing and doing another.

“You know, this whole ‘being an outsider amongst outsiders’ thing… It’s harder than I thought,” I told her a few months ago.

Since Luna graduated, I’ve realized how much more alike we are. I used to internally roll my eyes when she would say those things, like picking up the pieces and hunting them down. But now, those phrases come out of my mouth all the time.

I remember suggesting that she go to therapy, hoping it would help her get past what I thought was her black-and-white thinking. But later that year, when I had my own “it’s me against the world” crisis, I came to see that my negativity came from a place of weariness, not ignorance.

When you don’t see yourself represented in spaces they say are meant for you, every attempt to reach out can feel like a Hail Mary, like you’re grasping at the amulet of oughts, shoulds, and musts. And some days, when you’ve given all you have to forge your path, get what you need, and remind the world you exist, a seemingly small letdown can feel like the last straw.

At twenty-three, I’ve only just begun to figure all this out. Therapy helped, but so did experience. Sometimes, you have to live through it to learn from it.

“Come to think of it, we’re tag-teaming,” I said.

And I wasn’t sure if I should say this part, but I had to: “I guess… In a way… I have a better idea of what not to do in these situations, because you know, back then there some things you said or did that bothered me—” 

For a split second, I winced, hoping that I wasn’t rehashing old arguments. But last couple of times we hung out, we were both laughing about it.

“—and now I end up fucking up in other ways. But you live and you learn, right? That’s why we go out and explore and report back to each other. Luna, I just want you to know that I’m thankful for our friendship.”

“Likewise.”

“Love you.”

“Love you more.”

While the world told Luna she wasn’t doing enough when she was doing more than most people did, it told me that I was doing enough, even though I knew I wasn’t.

Every day, when I passed Matt* at the student center, I felt like I was in debt like I was drowning in the loan I first took on the day we met when I monologued to him about my disability (because if I don’t tell my story then someone else will). 

So when Matt confided in me one day that he was going to break up with his then-girlfriend, I held his gaze, feeling grateful that he trusted me to share the news. As he talked, my eyes turned to horror: She hit him, spiked his drink, and sent her father to threaten him more than once. 

Then, Matt started going off about how he works 10 hours a week, and made the dean’s list, while she’d never worked a day in her life, was failing her classes, and stayed in bed all day.

Like me. 

Focus, I told myself. None of this was personal—after all, something tells me that Gayle, the ABCDEFU singer, wouldn’t turn away fans for owning Craigslist couches and ripped-off paintings. 

I took a breath. “You got this. I’m proud of you.”

Lying in bed that night, I couldn’t help but wonder: when he said he only wanted to associate with people who are in for the bigger game, did that include me?

Once, I had dreams of being in the Honors Society and graduating early. Now, I spent every final season submitting a CARE Report on myself and begging my professors for an “I” on my transcript: incomplete. My blog—my only source of self-expression—gathered dust. At school, I felt like I was drowning, and at home, I felt like an oozing wound. I didn’t know what to do. 

“Lately, I keep thinking about what will be left of me when I burn through my bridges and my sympathy passes and my daddy's money,” I wrote in my diary. 

“I can’t shake off the feeling that at twenty-two I’ve already lived most of my life and I just want time to freeze.”

On ADHD medication, sounds, sight, and information stopped slipping by. But the hours, days, and weeks flew by. Gone were the days I forgot one sentence while reading the next one. Enter the days I forgot that my homework was due in an hour because I was so caught up doing other work for my other class. That was the kind of forgetting I’d heard about from friends with ADHD. Many of them had managed to get it under control after years of dealing with it. But I was new to this. 

Even after reducing my courseload to two classes in hopes that I’d have more energy to take care of myself, getting out of bed remained a challenge. I was losing weight again, too. The second I woke up, all my responsibilities blurred into the background, alongside the low rumbling of my air vents, the lone sock lying on the floor, and the scent of sweat mixed with Bare by Victoria’s Secret, leaving me to come up with excuses to delay getting out of bed. I coaxed myself with impulse purchases, some nice-smelling soaps and cute organizers, but I’d get distracted by something else, fall behind, and the cycle would continue.

I knew that if I continued down this path, I’d end up graduating just to graduate, and spend the rest of my life wishing I could go back, as the realities of the Real World knock me off my foot, baby steps be damned. 

I asked my friends for a grace period. I tried to keep them engaged, throwing in some therapy updates (see, I’m working on myself) and vague complaints about how busy and stressful and hard my classes were. I was excusing my lack of participation, and in a way, excusing their lack of common interest—not that it was anyone’s fault. But I wanted to believe that if everyone did their part, we’d all be besties, happily ever after. We just had to figure out how to keep score.

In the meantime, I aimed to entertain. From my bed, I sent out puns about a text that was sent 5 bubbles ago and overshared TMI stuff because I’m so random and such a hot mess and WTF is it even in my life? (—Me when I look in the mirror, HA!). But you can only repeat jokes so many times. Eventually, I gave up being the Sad Clown and settled into the tried-and-true role: the Needy One.

In other words, I was The Crisis Friend™. And every time I talk about this, I think of this song, Get Well by Icon for Hire:

Text within this block will maintain its original spacing when published

We throw tantrums like parties
We're not happy 'till everyone knows we're sick
And that's just how we like it
We've hurt bad enough, right, we've earned it

Don't tell the others, but it's all getting old
I mean, how many more times must our stories be told?
And being lonely's only fun in a group
It sort of loses its charm when it's true

I meant it when I said I wanna get well, I wanna get well
Are the rest of you so content?
Stay where you are but it hurts like hell

And I'm sure it was fun at first
Test your pulse and check your vitals
If it's only a game, you lost me
I quit it with the suicidal recital

I also meant it when I said I wanted to Get Well. But I didn’t know what to do. It seemed like every time I reached out to mental health professional, I had to downplay my emotions because if I didn’t, my concerns might be dismissed as an emotional issue, amenable to positive mantras and maybe some antidepressants. And when has that ever worked?

Each day I spent being mad at myself represented each month I spent being mad for myself. I knew that I deserved better than cliche advice and empty reassurance from people in coats with no skin in the game. I kept a running list of things that have gone wrong in my life and could still go wrong, because I was holding out for the hope that the right person would come along and recognize that this is real and this is serious and I needed a rescuing hand, not a high-five. Every once in a while, I went back to that list, re-reading it, wondering if I’d missed something, if there was a solution hidden in plain sight, like just try harder. My most “negative” thoughts came from the burning conviction that I could be helped, and that I deserved to. But I was at the end of my rope.

I wrote in my diary:

“Free will tells me that everything is my fault and that I need to try harder or quit being a sore loser. Fate tells me that nothing is my fault and that there’s no point in trying. I guess I’m struggling to be positive without being an entitled prick who thinks I’m better than everyone else.”

On a sunny October day, I found help: I’d admitted myself to intensive outpatient care. Everything moved fast from there.

Within the next day, I joined groups where we learned about things like co-dysregulation, where two people encourage each other to freak out more and more even without being aware of it, and Opposite Action, a strategy in which you deliberately go against knee-jerk impulses to show your monkey brain who the boss is. 

Then, I made the hardest decision I’ve ever made in my whole life: I started a tough conversion my family, which I’d been avoiding at all costs for years.

I also went back on a baby dose of Zealon*, just enough to help me get out of bed.

In a true Gen Z fashion, I posted an update on my private story. The people who reached out were far away, but most people that I saw every day at school said nothing. Not a single word.

I was going to Get Well, and I was going to brave the limbo space between being so dysfunctional that everyone got scared and rushed to help, and being functional enough to be fun and relatable and with-it. And I couldn’t afford to be around people who couldn’t look out for me.

Kayla called me when I was leaving the mailroom. I sat on the dewy bench, and made sure the speaker phone was off.

But I could hardly catch my breathe. “Everyone says, ‘communicate,’” I sobbed.

“But at what point— at this point I’m just piling one guilt trip onto another.”

Communicate. Communicate. Communicate. Communicate. Communicate. Fasten obligation and emotional weight, each one tightening its grip until it all falls apart.

That’s the thing about about isolation: it multiplies. Each rejection reinforces the belief that we’re hard to love and that those who manage to yet still love us are saints, and each “saint” ends up bearing the cross of past letdowns.

It was getting cold. “I wish you were here,” I told Kayla.

“Me too. I love you.”

“I love you too.”

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My schedule for junior year of high school was a study of extremes: special education for Geometry, and Advanced Placed Language and Composition (or AP Lang, in short). 

I was also happy to get into AP Lang because I knew that it would look good on my transcript. By then, I knew that I wanted to write professionally as a job. Writing, to me, was never a standalone subject; it was a means to an end. I could talk for hours about many topics — life, relationships, fashion — with many more people, but that wasn’t an option. 

So what do you do? You start a blog or something. I enjoyed reading personal essays on places like Vice and Buzzfeed and and I hoped that someday, I could write like that, too.

I still have the Quizlet from the first week of AP Lang.

Denotation, the simple meaning of a word. Connotation, the more complicated meaning of a word. “Weeping” and “sobbing” are both synonyms for crying, but "weeping" typically suggests deep grief or being profoundly moved, while "sobbing" might imply feeling overwhelmed or victimized. (That’s why we shouldn’t play Mad Libs with the thesaurus, said my teacher, Mrs. Krapels). 

Active voice, a sentence structure where the subject does something, like “Asaka disclosed her disability.” Passive voice, a sentence structure where something happens to the subject. Like “Asaka’s disability was disclosed.”

Synecdoche, a figure of speech where a part of something is used to represent the whole or vice versa. When we say, "all hands on deck," the hands represent the whole crew. And when we say Attention-Deficit Hyperactivity Disorder, the person’s struggle to sit still and focus represents weaknesses in a skill set that psychologists refer to as executive functioning (and society over-values, if I may add).

Antecedent, the person, thing, or idea that is named (Chadwick Bosman/the American Dream mall/the Varsity Blue scandal) and later replaced by a pronoun (she/it/this) or another substitute (the legendary actor/the popular destination/the high-profile case) later in a sentence or paragraph. 

Oh, and I just used parallelism.

Every day, we wrote about writing, asking an important question: why, out of all possible ways, did they say it like that? It sounds impossible at first, but it’s not. Under the energetic, whip-smart teacher and the groggy, but thoughtful eyes of my classmates, no word, sentence, or juxtaposition, went unnoticed. I started to understand what exactly gave each piece of text its kick, its oomph. 

As with most things in life, doing it was the hardest part. Well into the second semester, Mrs. Krapels had to still remind me to not end paragraphs with quotes. I knew that I had to elaborate but always hit a block. But overall, I did well. I was also taking a journalism elective with Mrs. Krapels, and she always commented that my writing was “very strong.” 

“Keep following your dreams. You’re going to do great things,” she told me.

Though I was more passionate about writing than ever, my blog was stalling. The more I understood the thing I was writing about, the harder it was. My rapid-fire thoughts outpaced my ability to produce. Even my keyboards were no match. Weekly goals turned into monthly struggles which turned into yearly yearnings that faded into the background as life brought new responsibilities.

I hadn’t posted in nearly a year when I changed the name of my blog from “Openly Autistic (Amongst Other Things)” to “Spectacular!” At that time, an alarming number of high schoolers used the word “sped,” a slang for special education, to mean “stupid” or “silly,” but you know how I deal with these sorts of things. I decided to identify broadly as disabled, without specifying a diagnosis.

When I tried to write an essay about the doctors’ (re)visit from freshman year, I thought that I was being very clear in my writing, because my therapists said it made sense. But when I decided to ask a friend of a friend for feedback, I realized that all this might not be that clear to a layperson:

Him: I admire your vulnerability and passion for educating people about disability. This helped me understand how autism, ADHD, and dyspraxia makes it harder for you to socialize. 

Me: Thank you so much! That means so much to me. Here I’m implying that what I used to think was autism, is probably ADHD and dyspraxia, but were you able to catch that?

Him: Hmm I see. The words ‘ADHD’ and ‘dyspraxia’ are mentioned so many times that I’m a little confused as to what they mean.

A familiar surge of anger rose in my body. I wasn’t mad at him; I was mad at the situation. The essay was twenty-five pages, and I couldn’t identify the antecedent.

“When all is said and done, labels don’t matter,” I said to my mom. 

“I told you,” she smiled playfully. 

But I could only shrug. “Yeah.” 

All was not said and done until I had gone to the doctor. At least now I had a story. A story that showed how diligently I researched and how strongly I felt about all this and how much faith I’d put in the system before I stopped putting stock in it. I just couldn’t be the “Who’s gonna tell her” girl.

I don’t remember what I wrote in the twenty-five-pager, but I vividly remember using the word compact. I stated that replacing my autism diagnosis with other diagnoses would’ve given me a “more compact” way to convey my circumstances to the world.

I yearned for containment. I wondered what it was like to take up less space, not for other people’s comfort, but for my mobility. I wanted to live in the moment, be myself, and roll with the punches, wherever I was.

Instead, I was tethered. Chained to private locations and rehearsed meetings where no one could leave until I went over all the ifs ands or buts—or got a helplessly confused look, whichever came first. Glued to a computer, a portal to the Everything You Need to Know About Interacting with. 

Without a doubt, social media was one of the things that made me feel more compact. When Mrs. Krapels had the entire journalism class enter the New York Times Student Editorial Contest, I decided to write an essay called I’m a Disabled Teenager, and Social Media is My Lifeline:

I’m keenly attuned to the unwritten rules of social interaction. I can identify the subtle variations in people’s facial expressions, and I’m quick to read between the lines. And my discernment is not just on an intellectual level, but also at an intuitive level: I’m intimately familiar with the dance of social interaction.

The information that I just provided sounds like a mundanity, until I tell you I was diagnosed with autism. 

Then, I went on to talk about what everyday social interactions were like for me, and how it often seemed like I didn’t understand or relate to certain things, even though I did.

“On social media, though, I’m a completely different person,” I wrote. “I’m dynamic. I’m assertive. I’m people-oriented.”

I won.

Many months later, I told Kayla that I felt like an imposter. That essay, I admitted to her, wasn’t about what social media did for me, but what I wish social media did for me. And I didn’t even know it.

My blog was stalling, and by the time my editorial was published, I hadn’t posted anything for a solid year. Instead, I resigned myself to sharing every single passing thought on my Instagram stories, from trivial complaints like getting sunscreen in my eye to my opinions on political tweets. My frantic, verbose tone made me sound like a celebrity who Googled conspiracy theories during a ketamine bender and was convinced they were the second coming of Christ if not a satirical Tumblr girl made up by a 4chan troll. And yes, I talked about my disability, but in bits and pieces. Anything bigger than that felt unmanageable.

This weekend will be the week I’ll publish a blog post, I’d tell myself every week. But I could barely keep my eyes open. Every morning was a battle between me and my mom to get me out of bed—a challenge we accepted as a part of our routine, much like a rock, paper, scissor for the last piece of cookie—but at least twice a month, she'd lose, resulting in a critical level of “Absent” on my transcript.

Weekdays were spent reading the same sentences over and over in a textbook, missing details like painting over a gapped surface. Every few minutes, I paced around my room, skipping one song from another on my headphones. Music was always there for me. It never asked me to pay attention (except when I broke my earbuds, which happened every couple of months since I never remembered to untangle the cords until they were unusable); I could tune out the lyrics and groove to the bassline, or replay the bridge as many times as I wanted to.

On weekends, I regularly spent 5 to 6 hours going from my bed to the shower I should’ve taken four days ago, struggling to piece together the steps needed to shower.

Every time I found the time to actually write, it was a purge. I hounded poor Kayla, begging her to help edit my twenty-plus pagers. I told her to tear apart my writing and rephrase all the sentences I’ve colored red, and she obliged. There was nothing I wouldn’t do to become a better writer. But one time, I cried because she was so much better at writing than I was.

“Well, she’s in Northeastern,” said my mom. 

“Is she studying creative writing? Or journalism? Because the last time I checked—” I sobbed.

“I feel like I have to be a fucking prodigy,” I remember telling Judy.

I felt that my disability made me so incomprehensible and unknowable that I needed a large audience and some newsworthy (read: click-baity) content in order to have an active social life. I knew that as soon as I left for college, I wanted to write another article for a mainstream media outlet—the first step towards my increasingly grandiose aspirations, like getting 10K followers and being on reality TV.

Once I asked Judy if I had Narcissistic Personality Disorder because I didn’t feel empathy for other people. I cared about other people and always strived to do the right thing, but I seemed to lack the deep emotional response that other people had. Now that I think about it, my generation is the first generation to grow up after “the autism as a lack of empathy” myth; we were taught that if someone with autism doesn’t display the expected emotions, it's usually because there was some sort of miscommunication. The problem was that I had trouble feeling.

What did that mean?

“But you haven’t got a lot of empathy for yourself,” said Judy.

She was right. Being alone didn’t make me sad, just bored. Being criticized made me scared, but not guilty. Being excluded made me feel frustrated, not hurt.

Judy said that this is what prolonged isolation can do to you. It changes you.

After over a year of weekly group discussions and several bake sales, Access-Ability received an invitation from the Principal to present to the middle school health class.

“Guys, I know what to do,” I spluttered. These kids were probably taught at some point that disability meant that something is “wrong” with a person’s body or mind, but now, all the teachers were gushing about “celebrating differences” in the context of disability. If we didn’t show them how these statements fit together, it could make the whole topic feel like a scary, controversial mess that people gloss over.

My thoughts might be all over the place, but that doesn’t make them wrong, I explained to the twelve-year old. This mind was the only mind I had, and I had ideas that only I could come up with, I told them. And when people let me focus on big ideas instead of small details, I can thrive.

Accommodations were crucial, but who said it had to come from a place of “She’s sick; she can’t help it”? They could just as easily come from a place of wholehearted, enthusiastic acceptance that we all have strengths and weaknesses, many times you can’t have one without the other, and some of us just have very interesting package deals.

But when my difficulty concentrating and organizing interfered with my ability to become a better writer, acceptance didn’t feel good enough. Writing was the one thing that I could control, a force that made me so invincible that for the longest time, I never moped about not being able to fit in.

I felt defeated. But I didn’t cry or come close to crying. Just numb. The dreamlike haze that landed me in the hospital was still there; it just stopped being frightening. Even outside of school, I hardly ever experienced life directly through my own eyes or ears, instead relying on my mom to point things out to me later. No wonder why I over-intellectualized. I’d get excited about going out, but as soon I finished eating, my thoughts began to race with what I’d do when I got home. Despite my best efforts, keeping my head still felt like a battle against gravity.

I knew that people took medication for ADHD. I wondered if that could help. My psychiatrist, Dr. Roberts*, shook her head. She told me that most ADHD medication would be off the table for me due to the potential cardiac side effects, but that we could discuss other options. 

“Maybe later,” said my dad.

“You did say you were also having Existential Thoughts, which as you know needs to be monitored. Should we go up on the Lomelix*?” she said, offering to increase my SSRI.

My dad hesitated for a moment, then nodded. “Yeah.”

They both turned to me. “Does that sound good?”

I nodded.

When I asked about ADHD medication at my next cardiology appointment, the cardiologist pressed her lips together.

“Stimulants increase your blood pressure and heart rate and we don’t want that.”

College would be easier, I told myself. The classes would be fun enough to grab my attention, and with my friends—instead of with family, whose familiar voices had long faded into background noise—by my side, I’d feel more present.

“Is it OK to have caffeine?” I asked. I’d been drinking black tea every day after coming home from school because otherwise, I would sleep for hours. My parents weren’t worried about it, but I wanted to make sure.

“Oh, that’s fine,” the cardiologist replied.

I spent a lot of time thinking about the future because the only way to make life tolerable was to define every moment relative to its inevitable end. Math class, 7 hours until I can go home and write. Mondays, 5 days left until the weekend. April? 70 days before summer break! My life hasn’t begun yet. I never let myself get too attached to anyone or anything. I started to stay up later and later, absorbed in making mood boards, shopping lists, and apartments for Seattle. 

By the time I was 17, I found myself contemplating life at 60.

I wasn’t thrilled. When I saw old people, I judged their appearance — Ew, the hair! — which reflected my own lack of purpose — But it was cool in the 80s. They must’ve worn it in the 80s because it was cool, and now they do it even though it’s not the cool thing to do. So… they stopped caring? How? When?

How do I know what to live for, when everything is changing?

I set out on another mission impossible: crafting the ultimate, trend-defying brand identity that would last me from 17 through 70. 

I changed my writing voice to sound more timeless. If I wasn’t using the smartest-sounding words on Thesarus.com (I was completely reliant on the thesaurus; I used it for every other sentence and got significantly lower scores on paper exams where I couldn’t), then I was cursing like a sailor. “Yeet” was temporary. “Fuck” was forever. Just like the pursuit of diagnosis, the pursuit of timelessness was one of bargaining. I thought that I was upgrading, but looking back, these changes were superficial. Shallow, like everything else did. 

I judged older people even more harshly. Every time I was out in public, I laid my eyes on older women, doing a series of mental calculations: How old do I think she is? Why do I think that? How many years can I take off if she did her makeup differently? Would she get away with wearing something edgier? 

Nostalgia was a private affair. After years of diving into the “related artists” rabbit holes, I had 6000+ songs on Spotify from obscure 2000s and 2010s artists that many people my age had never heard of, in a variety of genres spanning from neon pop-punk to darkwave. 

To add a little bit of fun, I decided to make an anonymous Reddit account to help people find lost songs. On the subreddit r/TipOfMyTongue, there was no shortage of people asking about that one band that was on The Hills and had a slot on Warped Tour once, and just fell off the face of the earth. 

Some people described the lyrics and uploaded humming melodies, but many of them couldn’t remember that much so they’d type a paragraph describing the song through comparisons—Their music sounded like a mix of this and that. The lead singer looked like a goth version of this famous actor. Close, but the song I’m looking for is heavier. And these were my favorite challenges.

Over the spring of my junior year, I got a stacked bob, more commonly known as the Karen haircut. I stopped wearing ripped jeggings and started wearing boxy dresses handed down from my mom. I looked at my Mayday Parade shirt, reeking of sweat and perfume because I’d been avoiding washing it to preserve the print. I threw it in the trash.

And I started picturing all the Terrible Things that could happen to me—No, silly, your life has begun, and don’t you know, it’s headed to the end. You could die in a plane crash! You could get run over by a car! Oh, and don’t forget; you’re medically high-risk! 

I don’t know why I thought I could scare myself into being present. Maybe it was good that I wasn’t allowed to install Dumb Ways to Die in sixth grade.

“The way they treated you made me so fucking angry,” Kayla said. It was the first time I’d heard her curse, and most definitely not the last.

Three years into university, Kayla had a fair share of amusing stories, but I think the underwear run took the cake. It’s an unofficial tradition in Northeastern (and apparant, UCLA) where, every year, hundreds of students run across campus in nothing but their underwear.

I, too, was one step closer. After what seemed like forever, I finished taking my SAT, relieving me of hours of math tutoring and Khan Academy. Now, it was time for me to write my college essay.

I didn’t have anything particularly interesting to write about, so once again, I went for the aspirational. I ended up translating what I had on my Instagram bio at the time. If I remember correctly, it had “WRITER” in all caps, followed by some cocky alliterations, “disabled dynamo,” “weird woman” and “eclectic” something. Whatever.

I was elated because that was the second time I managed to write about something so personal within the limits of a word count and a deadline. The college essay had to be under 650 words, and that New York Times essay was 459 words— less than a tenth of what I usually wrote.

Maybe I could be compact.

Shortly after submitting my college essays, I deleted the hundreds of notes on my Notes App and scrapped the backlog of 20+ manuscripts that had accumulated on Google Docs. I wanted to see if I could convey my disability in a single Instagram highlight. I opened Canva.

I felt a calm wash over me.

“Remember,” said Kristen. “Those labels are an argument. So when I put autism on your paper, I am making a case to justify why you need resources from the government. It doesn’t have to mean anything else.”

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The diagnostician said I had autism. As for ADHD, he’ll send a questionnaire.

The verdict: resolved.

I outgrew it, apparently. Dyspraxia wasn’t even mentioned.

“Oh, you definitely have ADHD tendencies. No question about that,” said my mom.

Daydreaming. Forgetfulness. Misplacing my belongings. These were the prominent traits that prompted her to get me evaluated in the first place. 

“But I was told that you could only be diagnosed with ADHD or autism, not both.”

“Well it says on Wikipedia that it changed in 2013,” I said.

“Hmm, in that case, I think that’s also strange.”

She looked at me with sympathy. 

I knew that my brain fog couldn’t have been easy on my family either. At the dinner table, my sister would spend twenty minutes talking to my mom about her plans with her friends, and the day after, I’d ask my mom for a ride at the exact same time my sister also needed one. Zero recollection. Any piece of information that was mentioned in passing or didn’t concern me directly was guaranteed to be immediately discarded by my brain.

One time, I tried to get vanilla ice cream at a bakery and didn’t notice the employee had scooped out the strawberry one instead, right before my eyes, until they handed me the cone. As soon as I got into the car, I cried, horrified by how disconnected I was from my surroundings.

But Asaka, why do you care about labels so much?

My parents insisted that these were just technicalities. They told me to stop splitting hairs and touch grass, pretty much. Remember, they said: that most kids your age don’t want to sit through a lecture about the classification of diagnosis. 

Me neither. The truth was I was sick of shit as much as everyone else. I was sick of putting myself under a microscope, sick of defining myself by my disability, and sick of researching everything, all for the illusion that any of these conversations were happening on my terms.

I went through the hassle of researching, printing articles, and nagging my parents — and my school — to get me re-evaluated, because I thought that these new diagnoses would give me a more concise way to communicate my disability to the people around me. Talk about a return on investment. 

While my parents hoped that the doctor's verdict would be the last word and put my questioning to an end, it had the opposite effect. If you can call THAT autism, then you can surely call THESE ADHD and dyspraxia, I wanted to say. And if you’re saying that none of this reaches the threshold for ADHD and dyspraxia, then none of this reaches the threshold for autism. Not even close. I suspected I had dyscalculia as well, but I decided to not ask the doctor because I didn’t want to come off as obsessive.

School kept getting hard. Every time I couldn’t do something that my classmates could easily, it was a taunting reminder that most people had no idea what the hell going on inside my head.

“I can’t process it,” I’d tell my teachers, holding up a blank worksheet.

“What do you mean you can’t ‘process’ it?” my chemistry teacher asked me one day. She was just as confused as I was.

What do you mean? I wanted to ask. Everything she said about ionic bonds, covalent bonds, and coefficients sounded unrelated. It was like saying, I don’t know, that birds can fly because all mammals have hair, I don’t know. Sometimes, for a fleeting moment, I’d think I solved the riddle, and my brain would start pumping out hypothetical questions: Because birds have feathers instead of hair? But how about bats? Also, isn’t a dolphin a hairless mammal?—hold on, what was I about to ask? Somehow, each answer confused me more than the last. 

I nodded and smiled as she walked through the problems, step-by-step. But every time it was my turn to do it on my own, it was like I fell off a cliff. She told Kristen: “She seems preoccupied by anxiety and easily shuts down.”

While all this was happening, another, unexpected diagnosis struck: Vascular Ehlers-Danlos Syndrome, or vEDS.

For years, I’d been bruising easily. Vitamin K deficiency? Anemia? Negative. Leukemia? Negative, thank goodness. Then I found myself in a geneticist’s office with a box of tissues placed conspicuously in my reach. I had a serious genetic connective tissue disorder, a collagen deficiency that made me high-risk in all aspects: strokes, bleeding, et cetra. The median lifespan of someone with vEDS is 50 years. 

On the way out, my dad asked me if I was going to tell anyone. I said two names.

“Good,” he said. “You want to be smart about who you tell.”

But soon enough, I wanted to tell more than the two names.

vEDS was the reason that I stuck out like a sore thumb in gym class — and wound up with an actual sore thumb on multiple occasions. Every time I managed to catch the volleyball, I got a huge bruise that extended to the lower half of my hand. It hurt so bad that one time, I nearly passed out. One of the coaches gave me an Oreo and allowed me to leave early. After I was diagnosed with vEDS, she pointed me to the back of the gym, where three other kids with intellectual disabilities played catch with the help of an aide.

The characteristics of vEDS also explained why I felt physically different, in general. My shoddy joints made me walk with a hunched back and clench my jaw constantly. My blotchy skin made me seem like I’d been held back by more than two grades. One time in eighth grade, I wondered for a week if I had mosaic Down syndrome (a rare form of Down syndrome where only some of the cells have an extra chromosome) instead of autism because of my sunken eyes and an undefined jawline.

I couldn't help but look at everything that made me stand out, and ask: how much of it could I pin onto the physical stuff? Anything to distract people from the mental stuff. To distract myself. 

My dad shook his head.

“You need to be careful about who to trust.”

He said that there were a lot of sensationalized information about Ehlers-Danlos Syndrome. For example, 1999, a man with a different form of Ehlers-Danlos Syndrome won a Guinness World Record for stretchiest skin1. He said that kids can be cruel and that he didn’t want me to be treated like a circus freak. But I already was.

“I don’t understand. When I was diagnosed with autism, you encouraged me to educate people.”

“Well, that’s different. Your condition is unique. It’s rare and it’s complex,” he responded.

I saw red. After all that he’s seen me go through, how could he imply that my autism — or whatever the hell I had — wasn’t unique or rare or complex? 

But he looked at me with disapproval.

“Remember how you were dying to tell everyone you had ADHD?”

I was incoherent with rage.

“You see a pattern there?”

I slammed the door. 

The official symbol for Ehlers-Danlos Syndrome is a zebra. As per the Ehlers-Danlos Society:

Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.

The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.”

I find that funny because all the mental stuff made me feel more like a zebra than vEDS ever did.

• The hoofbeat, the signs: My abrupt interruptions.

  The horse, the expected explanation: I don’t understand when it’s my turn to speak.

  The zebra, the unexpected explanation: I react too fast or too slow, and it’s hard to control.

• The hoofbeat, the signs: My brief replies.

  The horse, the expected explanation: I’m straightforward — a nod means I understand, “That’s nice” means “That’s nice,” “Good for you” means “good for you.”

  The zebra, the unexpected explanation: I think vaguely, and I take longer to find reference points.

• The hoofbeat, the signs: My monotone voice.

  The horse, the expected explanation: I pay less attention to tone.

  The zebra, the unexpected explanation: My speech organs wouldn’t let me.

I wasn’t just another emo kid collecting diagnoses like Pokemon cards; I was using my critical thinking like he’d told me to.

“Do you think you were misdiagnosed?” Judy asked me at some point, emphasizing the mis- in the misdiagnosed.

I pondered her question.

That old man became the third doctor to diagnose me with autism — not even counting the tentative diagnosis when I was seven. What are the odds of not just one, but three, doctors being wrong?

Apparently, it’s smaller than the odds of being a correctly diagnosed person reading hundreds of web pages, blog posts, and social media content, and still not being able to relate.

Well, shit. I was a unicorn, wasn’t I? Defying all laws of developmental psychology and doubted by humans. How majestic.

“You have a tendency to focus strongly on things, and that’s not a bad thing,” my dad sighed, sitting in my bed.

He tried to search his words, careful not to offend me. “Remember when you were into birds? You were always researching birds, reading encyclopedias, and classifying them. Mom and I took you to the Cornell trip to encourage that. But sometimes I worry that you’re going to focus on the wrong things.”

We both knew what he was talking about: special interests.

There’s nothing wrong with having a special interest—it can be a wonderful thing. Many people believe that Edison and Einstein may have been autistic because of their unwavering dedication to their fields of study. And have you seen the pure joy in a person’s face when they get to talk about their special interests? If you haven’t, I hope you get to witness that.

But diagnosis-ology wasn’t something that made my brain happy; it was something society had imposed upon me. Reviewing my diagnoses didn’t intrigue me, nor did it fulfill some unique, above-average need for order and certainty that any other teenage girl didn’t have.

My autism diagnosis was like a fixer my school hired for me when I was little. It mediated my interaction with the world, complete with an unwritten contract: We highly advise you to discuss your disability using the template we provide you. Failures to do so may result in third parties completing it for you. It's crucial to understand that we are obligated to maintain public records of each submission.

In attributing my anxious need to categorize my disability to my autism, he’d proved my point: this was something people used to interpret me, every day. A piece of paper, my ass. It was a whole damn framework, and when its foundations shook, I was trapped, while everyone else precariously balanced the pieces and walked away before they fell. I understand why it was given to me. I needed it to survive. Because bureaucracy. 

But how could the world call me different for picking up the pieces they left behind? The dilemma of defining my disability was never about self-soothing; it was about self-determination.

Thank you for reading CHAPTER NINE 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.

Subscribe now

- 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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“I wanted to write a book, but I had to stop because I was hospitalized,” I told Kristen, my new case manager. 

Kristen raised her eyebrows. “Why were you hospitalized?” 

“I had a depressive episode. But I recovered quickly. Like in 2 weeks,” I replied.

I did inpatient in Westchester for a week. Antipsychotics took the edge off the severe panic attacks, and group therapy gave me hope. Seeing myself through other people’s eyes made me feel less out of body.

At first, I wasn’t sure if I was going to get better. Everyone talked about normal, everyday things like grades and parents while I kept asking myself if the world was not real. But it was better than being alone with my thoughts. We were not allowed to use personal devices, so we played pass-the-aux on a smartboard (“Oh lord,” the nurse chuckled with endearment, when Caraphernelia by Pierce the Veil hit the bridge). That was fun.

“—Anyway, I couldn’t write the book anymore. But I still wanted to tell my story, so I convinced my parents to start a blog,” I explained to Kristen, as I began to fumble on the computer. I entered the URL and waited for it to load. There it was.

The animated text zoomed into view: OPENLY AUTISTIC (Amongst Other Things)

You see, I’ve been doing the whole yes/and thing before Ariana Grande made it into a song. I wore my autism label proudly because I wanted to collect as many “Screw you. Watch me!” points as I can.

With no relatable, smart, and cool disabled teenage girl role models in the media and with some people still talking to me like I was ten, any decision I made without my parents’ imput felt revolutionary.

My mom didn’t allow me to dye my hair or get false eyelashes, and my Hot Topic collections were limited because I didn’t want her to listen to screamo and have a heart attack. But I was able to obtain a choker, dark wine lipstick, and sheer pantyhose. And the good news was, it didn’t take much to turn heads.

But here’s the thing: none of these things had much to do with autism, the neurological condition. They had everything to do with sensationalized stereotypes sold by the media, and my urge to rebel. I didn’t have to think about what it meant to be autistic, because the people around me had already decided that I was.

Meanwhile, dozens of kids at my school slinked into mysterious smaller, pull-out classes every day for certain subjects or for a mysterious elective called “study skills. Some were jocks and cheerleaders, but no one came on the record saying why — except for this one girl, Kaete (pronounced like “Katie”).

“I have ADHD and dyscalculia,” she told me, matter-of-factly.

Kaete kept her voice nice and easygoing; neither sickly sweet nor cold as ice. I’d met her through theater, and when I showed her my book, she said that I was insightful and articulate.

I told her that I wanted to start a club for kids with disabilities. I named it Access-Ability (Cheesy, I know). Are you in? I asked.

“I’m in.”

Kaete told me she had to fight “tooth and nail” to get a diagnosis. 

“My brain just cannot process numbers,” she said.

“Same.”

Trying to memorize how to solve a math problem made my head hurt. Trying to understand why also made my head hurt. 

One time, I remember writing, “Every time my teacher tried to explain math, my brain rejected the information like a raincoat.” What I meant was that everyone else’s brains were porous, while mine was polyvinyl, deflecting every piece of information. If my teacher told me there was one step, then I would’ve forgotten it by the next step. Each piece of information jiggled precariously on my head — word-sounds, symbols — before the slightest jolt rolled away.

“People didn’t believe me because I did well in English and history. But I struggled so much in math and sciences.”

“Wait, me too.”

According to my dad, having autism meant that I had difficulty with abstract thinking. “Meaning things you can’t see or touch,” he reminded me. “You have a hard time changing your mind to accept other perspectives,” said my mom. She said that was also why I couldn’t let it go if I was upset about something.

But I didn’t have the same issue in English. Or history. Those subjects didn't box me into rules and formulas, and without that pressure, I was limitless in my ability to see multiple perspectives. 

“But I know what I’m good at,” said Kaete. “I can spend hours dancing.” 

I smiled. “You’re really talented. You’re an amazing singer, too.”

“Thank you!” She started tapping her foot.

Attention deficit, I’d learned, wasn’t a lack of attention, but rather, difficulty balancing attention, and more broadly, a struggle with executive functioning1, an umbrella term for self-management skills, like breaking big tasks into smaller steps, thinking before we act, and keeping things “in mind.” “Executive dysfunction,” I’d once heard someone on Twitter (RIP) say, “is like an erectile dysfunction of the mind.” 

And despite what the doctors told my dad in third grade, my love of reading and writing didn’t “rule out” ADHD; nor did my solemn demeanor and lack of jokes — a quick Google search told me that girls with ADHD may appear “withdrawn.”

When the boys from my study skills class stood on a chair and shouted things like “FIST ME DADDY!” across the room, other boys cheered and the teacher yelled at everyone to be quiet. When I overshared during Socratic seminars, the other girls fell quiet while the teacher rushed to fill the silence. But impulsivity was impulsivity, right?

I was too impatient for my own good. Whenever I had a conflict, I got anxious, but it wasn’t self-doubt or the fear of negative outcomes that was gnawing at me; I just wanted to get it over with — even though thinking about it didn’t speed anything up and only took time away from other things. Everyone gets irrational when they’re under stress, but I ate, slept, and breathed irrationality. On a daily basis, I checked my order status for a package that wasn’t coming in two weeks, paced around the kitchen for fifteen minutes waiting for dinner to be ready, and put off showering because “studying was more important”—and never studied.

Sometimes during class, I’d get too distracted trying not to get distracted by anything to comprehend what was going on. I would repeat the first sentence in my head, playing it over and over until I stopped hearing sounds and started hearing words, while the teacher was on the fourth sentence. I could do that two times in a row before I got so tired that I had to zone out for three minutes. At that point, there was no catching up.

How the hell did the adults miss this?

“Asaka?” Kaete looked at me, with a serious look.

“Do you have a pencil? I forgot it,” she said, lowering her head in shame.

I handed her a pencil.

“Thank you.”

Somewhere along the way, I came across an article about something called dyspraxia, also known as developmental coordination disorder (DCD), a learning disability that makes it harder to map out where your body is in space.

A hallmark sign is a lack of motor control, which is why dyspraxia is sometimes called the “clumsy child syndrome.” Individuals with dyspraxia often have trouble planning and sequencing movements as well. If you have dyspraxia, even simple tasks like brushing your teeth might take immense effort because you don’t have “muscle memory.”

I knew what dyslexia was, and Kaete had taught me what dyscalculia was, but that was the first time I heard of dyspraxia. My eyes widened when I saw the symptom checklists: Unusual posture and speech. Difficulty with multi-step activities. Poor sense of direction. Delay in tying shoelaces and using scissors. Difficulty playing sports. Mixes up left and right. Notable lack of rhythm when dancing. It felt like someone had been watching me.

I couldn’t tie my shoelaces or tell my left to right until I was twelve, and at fifteen, I couldn’t braid my hair. I struggled to make posters for class because I couldn’t write in a straight line or space out the letters evenly so that everything fit. Every time I had to vacuum my room, I got absurdly tired.

I could never tell if my back was straight without looking into the mirror, and I was used to keeping my head down, because if I didn’t look at my feet when I was walking, I’d stray from the path and trip over something, and if I didn’t hunch over when I was eating, I’d drop food on my way from the plate to my mouth. I knew that “abnormal” movement was associated with autism, but I didn’t know it was a condition on its own.

Dyspraxia is also similar to ADHD in the sense that the condition primarily affects your ability to perform tasks, and not neccesarily your ability to understand them or your overall motivation. The -praxia in dyspraxia refers to praxis, or motor planning. In general usage, praxis also refers to “action” and “practice.” In textbooks, the term "theory and praxis" is used to refer to different schools of thought and their practical applications. For example, if you’re studying to become a therapist, "theory" might cover therapeutic approaches like CBT and DBT, while "praxis" might cover specific things you could say to help your clients.

Learning about ADHD and dyspraxia excited me because these concepts introduced a different way of sorting all the little pieces that contributed to my awkwardness. My difficulty controlling tone didn’t mean that I didn’t understand tone, any more than failing to catch a ball didn’t mean that I didn’t know the rules of the game. Me saying something “weird” didn’t mean that I didn’t understand why it felt weird, any more than procrastinating my essay meant that I didn’t see when it was due. Under these more specific diagnoses, I could pair the scariest, most confusing parts of me with relatively simple concepts that people could grasp, instead of a broad concept of autism, which contained too many possibilities.

In high school, my social skills had their first major growth spurt (the second took place during the first month of college).

For example, I learned that it was socially expected to keep the door open for someone walking behind me. I just thought it was a nice extra thing people did as a treat until my mom pointed out that everyone was doing it at the mall. I never noticed.

Next week at school, when I found myself holding the door open for an underclassman I didn’t know, it felt like I’d been doing it my whole life. Even though no one had explicitly told me, I quickly figured out when it was a good idea to hold the door open and when it wasn’t (I never thought about it at the time, but I guess it depended on whether I was rushing to class, what my relationship to the person was, and how far away they were).

I had some missing information, here and there, but once someone filled me in, my mind made leaps and bounds, each one exponentially bigger than the last. Yet from the way I acted around people, you’d never guess how much I actually understood.

“My brain doesn’t give me instructions,” I remember telling Casey*, after one particularly long lull in a conversation. 

Many time when I talked to other people, I found myself in this weird limbo state, where I didn’t know what to say. These moments made a second feel like an eternity, acutely aware of my muscles holding me up as if I were teetering at the edge of a cliff. I could see the forest for the trees, but I couldn’t find the tools needed to get from Point A to Point B.

Then there were times when the people around me were way more confused than I was. I remember one day, arriving late to a choir rehearsal when I heard some chattering from the bathroom and saw my classmate waiting outside.

“Wait, we have to change now?” I asked.

“Yep.”

“Damnit.”

“Well, not right here. After they get out,” she added, with a nervous smile.

“Oh wow,” I said, putting on my best mocking tone. “So you really thought that I was gonna strip in the hallway?”

Sometimes, it felt like the world saw me as a hazard, one lapse away from taking a word out of its intended context or running with it. I told myself that I could make myself less dangerous by saying I know, I know, I know to anyone who would listen.

I’d learned to equate proving with safety, and that’s something I’m now unlearning as I’ve been able to have deeper, more meaningful interactions with others. In my adult life, the moments where people have felt the most unheard, uncared for, and unsafe emotionally in my presence were when I was caught up on having the last word—or the first. 

When I think about fostering empathy and curiosity, I think about my dear friend Kayla. I met Kayla at my first club fair. I was about to wrap up, when I saw a blonde girl in an oversized pastel tie-dye shirt, carrying a big water bottle, coming from the courtyard.

“Hiiiiii,” I hollered, “Would you be interested in Access-Ability?” 

She stopped and looked at me. “Hi!”

Then she started grilling me: How often will you meet? Are you guys doing anything outside of the meeting times? What are you trying to do for the semester? Her voice cracked, both from the exertion of track practice and from earnest excitement.

Still, I was surprised when she showed up. She said she didn’t have disabilities but wanted to be supportive. No further qualifiers. She showed up again. And again. And again. She even brought one of her friends, Katie. 

Kayla listened to CCM, never cursed, and was nearly valedictorian. I listened to Hot Topic music, only knew how to make dirty “jokes”, and was nearly failing chemistry. Despite our differences, our friendship grew quickly. When we found out we were in the same gym group, she squealed in excitement.

When we walked on the track together, she told me always had stories to tell. If I’m being honest, I don’t remember what exactly she told me. But these were stories that showed the good in people.

Thank you for reading CHAPTER EIGHT 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.

Subscribe now

- 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.

Next chapter:

Previous chapter:

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Well, it’s a spectrum.

That’s what always gets me. Because they all say the same thing: well, it’s a spectrum.

Duh.

It’s a spectrum. That strikes me as one of those things people say to comfort themselves rather than to comfort me.

It feels like a copout. None of us wants to accidentally say the wrong thing. 

And honestly? I don’t mind taking one for the team if I can keep the illusion that disclosing my disability is something I do and not something that’s being done to me.

It’s not the word “autistic” that scares me. It’s trying to figure out if the person that I’m talking to is broadening their view of the autism spectrum to fit me, or if they’re narrowing their view of me to fit me into the spectrum. 

Every now and then, someone asks me if I know “this girl on TikTok.” “I think you’ll like her,” they’d say, showing me a charismatic, conventionally attractive social media influencer who posts about autism. Sometimes it almost feels like they’re sizing me up: if someone like that can be autistic, then surely you [*looks up and down*] would qualify. But when I scroll through their accounts, it’s the same stuff: memes about hating small talk, bonding with people over fandom stuff, storytimes about being deceived and not realizing, PSAs urging people to be direct and avoid hints when talking to autistic people. I wish I could relate.

But I can’t. 

“You’re overthinking,” someone might say. After all, anyone who treats me differently based on what they see on the media as opposed to they’re seeing in front of me, is not worth keeping into my life. Right? But here’s the problem; appearance can be deceiving. And so can appearances of appearances.

“But Asaka, you had all the signs,” my mom says.

“You said ‘excuse me’ instead of ‘what’s up.”

— I was an English learner.

“You only talked about dogs.”

— That’s just one trait.

“You’d also ask people ‘What are you talking about?’ and ‘What do you want to talk about?’ instead of ‘How’s your day going?’ 

— Well, I’m sure ADHD can hinder learning if it’s severe enough.

I shut down, because I’m afraid that other people will use my past truths to poke holes in my current truths. Like the needle and thread of “of course,” the needle and thread of “no wonder” pierces through the most tender parts of me:

Wait, so Asaka only talked about her dogs until she was 12? No wonder why she blanks out after asking “How’s your day”—she’s probably screaming on the inside.

Wait, so Asaka said “Excuse me” instead of “What’s up” until she was 11? No wonder why she uses big words on social media and gets mad when people doesn’t follow rules—she doesn’t see professional and social settings as being different.

Wait, so Asaka didn’t know until she was 14 that people expected her to ask questions when you have a back-and-forth conversation? No wonder why her sentences are kind of vague and repetitive—it’s like a game she never quite mastered.

Maybe I’m overthinking again, but I worry that everything—from the regular brain farts and routine workarounds, to stupid decisions I made when I was in a bad place—just all the things I’ve bent over backwards proving that doesn’t define me would be reinterpreted to continue the story of a person I don’t recognize: the little kid forever captured in my medical records.

My internal debate over whether I can claim 'autistic' or not is ongoing, but my biggest fear throughout this is that if I cannot disprove my autism diagnosis altogether (or “beat those autism allegations”, like the kids say), I am “admitting” that I am not who I say I am.

Let me explain: in the autistic community, you will hear a lot about something called “masking.” Masking, for those of you who don’t know, is a coping mechanism where someone hides their differences to fit in or appear more "normal" in social situations.

According to Healthline, masking can look like:

• forcing or faking eye contact during conversations

• imitating smiles and other facial expressions

• mimicking gestures

• hiding or minimizing personal interests

• developing a repertoire of rehearsed responses to questions

• scripting conversations

• pushing through intense sensory discomfort including loud noises

• disguising stimmimg behaviors (hiding a jiggling foot or trading a preferred movement for one that’s less obvious) 

As with other autistic experiences, it’s easy to see sensationalized examples of masking and think, “No, I don’t do that.” And it’s tempting to run with oversimplified narratives, because it’s easier; the truth is that every script flipped by the autistic community feels like another page someone would have to sift through in order to see the world through my eyes. But life is nothing but layers. I can’t fear it.

When I first read an article about masking many years ago, I used to think that masking, in the context of autism, meant that a person used rote memory to complete social interactions, like chatbots with zero original thought. But after listening—and listening to listen, not listening to talk—I understood that masking is often more comparable to what most of us have done at least once, with a codependent, moody friend.

You’re watching what you say, and maybe you say some stuff that you don’t mean 100% because you know that’s what they want to hear. You're using intellect instead of intuition, not in the sense that you have no emotional stakes, but in the sense that you’re always playing Devil’s Advocate with yourself to rationalize their behavior, or at least, pick your battles. Nothing is given; there’s always an “if”:

If that’s how they cope with things.

If that’s important to them.

If they’re not OK with that, then I should not be OK with that.

I understand that for those of us who are autistic, the whole world can feel like the codependent, moody friend, ready to put words in your mouth and hold you responsible for their insecurities.

In the last year alone, I’ve probably combed through hundreds of posts, comments, and articles by people on the spectrum, and the one—and only, as of now—story that I could truly relate to is titled Don’t assume I’m masking. 

“There’s this narrative around masking—in my head, if not in yours,” writes contributor Consentsquad on NeuroClastic, a popular autism blog.

Here’s how it goes:

If an autistic adult seems neurotypical while socializing, they’re not being authentic. They’re using analytically-learned techniques to mimic neurotypical eye contact and mannerisms. They’ll suffer later from the strain of acting neurotypical for too long. AFAB [assigned female at birth] people are diagnosed less often as children not because we didn’t matter very much to the adults around us, but because we supposedly learned to mask at a young age.

I can start panicking when I hear these narratives. My brain already seems impossible or alienating to neurotypical people. Where do I fit in if other autistic people feel the same way?

Oh my gosh, me too.

“When I was young and very isolated, I did not have opportunities to learn how and why other people thought what they did,” the author explained. 

“Once I reached my teens, I became self-aware enough to know that I could cure my loneliness by starting conversations—theoretically. Instead, I developed intermittent mutism and chronic catatonia.”

No way. That’s nearly identical to how it played out for me, too. Even when I got something done—“lock, stock, and barrel” as my therapist had said—I encountered more specific issues that made it very difficult to show that I got it. For them, it was anxiety; for me, of course, it was the attention and motor issues.

Today, Consentsquad loves having small talk with other people, as do I. They say doesn’t feel “unnatural or forced,” and they savor it: “I still appreciate that release from the mutism that kept me from social contact I craved for so long.”

The writer says that they do mask sometimes, or at least try to, without even realizing it—when they go auto-pilot and give haphazard responses to people when they’re feeling overstimulated and struggling to think clearly. But in these moments, people can still tell that they’re struggling: “The interactions will be brief, lack depth, and likely mark me as neurodivergent far more than authentic, intentional communication ever does.”

“I’m not even capable of thinking analytically if I’m in a situation that exceeds my sensory and emotional capacity,” they explain.

Me neither.

Before getting on medication for ADHD, my working memory was so flimsy that I wouldn’t have been able to use the strategies many autistic people use to navigate social situations. I always hear about autistic people tracking conversations when it’s their turn to ask a question or share a story, reminding themselves of what someone else said in a similar situation, or even replaying entire conversations from beginning to end to find patterns.

Meanwhile, I’d been figuratively catching my breath, assessing when to zone in and out based on the speaker’s facial expressions, tone, and presumed psychological state, since I couldn’t process large amounts of information at once. I wasn’t even aware that I’d been doing this until I could… just focus. You’d be surprised by how much you could learn about someone without remembering the particulars of their school, work and home life, as long as you pay attention to why they’re telling you.

Of course, there’s a dark side to leaning so heavily on intuition over concrete facts. It was so easy to gloss over my own shortcomings, and even when I was in a genuinely unfair situation, I lacked confidence in my ability to recall specific details (forget about coming up with actual solutions) and resorted to emotional appeal, which led to so many issues.

But at that time, these tune-out-a-thons were the best way I could relate to people, and I’m still friends with most of them. I could easily be caught off-guard by people suddenly appearing in my path at grocery stores and by plans my family had been mentioning in passing for days, but when my friend’s moods changed, I never felt the same sense of bewilderment.

It’s obvious that I don’t move through the world as seamlessly. I have communication hiccups, and yes, I like to smooth things over—correcting, revising, and adjusting—but I can confidently explain why I made the call. When I’m talking to someone and I buffer, it’s not because my perception of reality is scrambling to keep up with my words and actions; rather, it's because my words and actions are scrambling to keep up with my perception of reality.

The changes in my demeanor aren’t always meaningful. For example, medication, supplements, posture, and hydration can all impact my speech. I have jaw problems, so wearing a mouth guard, taking a warm shower and carefully applying lipstick can help me talk louder. These things don’t define me.

I also see that these inconsistencies may mirror many descriptions of “masking,” and quite frankly it’s upsetting that someone could see my plucky, spirited efforts to connect with the world, and treat it like a glitch in a deepfake—a damning evidence that my thoughts, feelings, and opinions are the artifices of a manufactured neurotypical persona, for the real me was vanished by conformist society.

Of course, that is a real thing that real people go through. I’m glad that we can talk about it, and I’ve read so many beautiful stories about people rediscovering themselves after they learn about their autism diagnosis. But when someone tell me I should also unmask, I don’t know how to because I don’t feel a mask. I worry that this idea only serves to please other people who are unsettled by the various inconsistencies in elements and hope to seperate “real” me, with my God-given autistic traits, or the fake me, with my learned behaviors. That being said, I don’t fault anyone for seeking comfort in that because we’re all afraid of the unknown.

I know a handful of people (who are not autistic, to my knowledge) who will talk to anyone and everyone, but are deathly terrified of giving PowerPoint presentations. Why was that? One time, when one of my friends texted me after a hellish presentation, I said: It sounds like you really like public speaking when it’s social but not when its’ academic haha.

I regretted this immediately. It sounded like I was grilling her. What the hell? Not wanting her to feel singled out, I quickly added: Honestly, same! I don't feel motivated to present unless I'm doing it with friends (She had another class with me, so that was also my way of expressing my appreciation, but with the lack of emojis, that wasn’t clear).

I had to call her to make sure she didn’t think I was judging her, and thankfully she didn’t—all good! She wasn’t a huge school person anyway, but I realized that what I said could be hurtful to another person because it could sound like I believed they were having a hard time because they didn’t care enough about the assignment.

Apart from accidentally sounding interrogative due to my speech impediment, I can be nosy at times. In high school, my most meaningful social interactions came from therapy sessions, and in college, I studied journalism, so I know how to pry. Even though I recognize difference between a professional relationship and a friendly one, I sometimes find myself pulling out the big probing guns because I’m scared of being the last to know. 

My biggest struggle with impulsivity isn’t with saying mean things out of emotion (though that has happened before and it’s still my responsibility). It’s more about accidentally saying inconsiderate things because I’m approaching it from one angle and forgetting about other perspectives. I feel like I’m a champ at holding multiple, simultaneous truths, so when the world start closing in on me, that tells me that I’m probably A) critically bored and can’t stop talking or B) running from something. I need to keep my shadow self under control because otherwise, she can get under other people’s skin.

Working on this project for the past year, trying to clarify my understanding of my diagnosis, I’ve been inundated with reminders that things aren’t the way they seem. It’s stirred up the existential fear that I don’t know anything about anyone. It’s also like, I’m constantly disclosing, explaining my brain, and pouring my heart out on the Internet because that’s what I do to feel a simulacrum of control, and most people don’t feel like they have to do that. Sometimes, I feel guilty, like I’m not doing enough because I don't always get to hold people in the ways they’ve held me.

It’s also interesting because I consider this impulsivity as a part of ADHD, and feel attached to the ADHD label in a way I don’t with the autism label. But as you can see, impulsivity is only one factor that drives my decisions. Everyone has complex fears, hopes, and motives. It’s only human.

And when I think of it like that, I wonder if the current approach, where we take everything and anything a person does to modify or compensate for their autistic traits and call it a “mask” (which, lest we forget, is a metaphor for disguising oneself) is truly helpful for anyone. Many of my autistic friends agree that some of the stories we see about masking are exaggerated and can be used in a way that undermines the individual’s agency. 

Autism is the only disability where the person who has it doesn’t receive credit for their ingenuity or resourcefulness. As someone with this diagnosis, any decision I make about coping with my disability, or any decision ever, could be categorized as either an instance of “masking,” a series of unnatural behavior society has bullied me into, or “unmasking,” the act of surrendering to my natural tendencies, perhaps from my early childhood. I’m not saying that doing what you’ve got to do to get by, or freeing yourself from shackles of shame, doesn’t take enormous strength. It does. 

But no one is a collection of symptoms, an embodiment an identity marker, however you want to put it… no one wants to be treated like a case study. Some people say they are autistic (“There’s no me without autism,” I remember one student saying, every time she came to a Breaking Down Barriers meeting), and other people say they have autism. But every person I’ve met in the disability community has likes, dislikes, and interests that are not exclusive to or solely influenced by disability. 

In a world of clickbait, it might be easy for someone who’s new to the conversation to fall into the trap of assuming that anyone who doesn’t fit their narrow view of autism is “hiding” their autism. In other words, an individual might already be staying true to themselves, but the people around them might be eager to explain it away, where it can’t disrupt the precious illusion that autism is foreign and scary.

I see this sometimes with celebrity speculations, where the subject’s quirks are instantly labelled as an autistic trait if they’re controversial, but once these quirks become popular or accepted, they’re reinterpreted as facades they put on to hide their autism.

Tacking on disclaimers, like “Many autistic people mask for safety, and not deception” and “Unmasking is a privilege,” doesn’t solve this.

Maybe we talk like this, because we haven’t found a better way to do so—yet. And veering into that territory makes me uncomfortable, because I don’t want to be paternalistic. It’s clear that a good number of autistic people resonate with the concept of masking, and I, of all people, should know that other people’s realities are something to believe in or not believe in. Is it better to just say, “Well, that’s you. #CantRelate #BuiltDifferent”?

It’s hard because I only ever hear people talk about masking in a circular way: You don’t relate to autistic traits? Well, you could be masking your traits. What is masking? That’s when you have autistic traits but try to hide them. You don’t relate to autistic traits? Well—

I may as well count myself out, declare myself a wacko fringe case that should be studied for decades to come, or better yet, decide that I’d been misdiagnosed all along.

But what if other people with this diagnosis feel the way I do? Why slam the door shut behind me?

Honestly, I wrestle with this every time I hear sentiments from “the community” that belies the essence of who I am. These conversations often serve as my only means of self-advocacy, and each time, I feel like I’m walking on a tightrope of paternalism and exceptionalism, under the mounting weight of untold stories.

When I started college, I was surprised by how many of my fellow students were diagnosed with autism or were in the process of getting a diagnosis. I feel like I tried to see how far I could go on this tightrope, eager to find where I end, and others begin, hoping that one day, I’d feel more connected. But along the way, I’ve found myself saying insensitive things. It’s part of why I feel like such an asshole.

We can argue about who’s the bigger problem: my diagnosis, or society’s ignorance. You can all be the judge while I read my testimony.

Welcome to my worldly, human, and surprisingly ordinary life. 

I’m a product of the world I grew up in. I come with scars, stretch marks, and echoes of everyone who has ever loved me. 

No one will dare tell me my accomplishments are just acts. Only I can say I’m just a kid—an overgrown scene queen who spends too much time thinking about the meaning of life.

Today I’m fighting for my right to be a normie because I just want to go about my day, without a tabloid headline written on my forehead: “HER DOUBLE LIFE: this autistic woman goes out and does things like any other people.” 

It’s not like I’m going to be blamed for it, because masking is a trauma response. But the voice saying “poor thing, she must be traumatized” sounds eerily similar to someone looking at me like a five year old flouncing in her mother’s high heels: bless her heart, she’s playing pretend. Don’t.

On a second thought, I do play pretend. But who doesn’t? We all have personas that we put in front of different people. Every day we follow rituals, partaking in greeting customs and following scripts, and every season, we go undergo phases to discover something new about ourselves. It’s just that my performance in that arena never felt any more unnatural for me than it is for people who are not autistic.

And yes, thriving with any sort of disability requires a little esprit d'initiative, the courage to say no to the ways things have been done. But that doesn’t mean the most different part of me has to always take precedence, like a drop of ink in a glass of water. Fluid I am, a multi-dimensional being just like you, and I don’t need to be exempt from the hard, beautiful, dirty work of integrating my evolving facets. 

I guess that’s where it gets murky, huh?

I know that some of my feelings, desires, and interests exist in tension with the constraints of my disability. Since it takes me more effort to gather my thoughts, maybe I should say to hell with it, start pulling a Quinni (she seems lovely) and say things in the bluntest way possible to preserve my cognitive resources. Maybe then, I’d have a bit more energy by the end of the day… but I wouldn’t be me!

I can’t unsee subtext or stop myself from addressing unspoken things any more than I can unsee optical illusions or stop myself from grabbing onto something when I fall. Unseeing is possible, and sometimes neccesary and very important, but doing it 24/7 with everyone feels more stifling than freeing. I also like that people can say the same things in so many different ways because I love adding a personal flair to everything I say (But then, I’m a sucker—the type to waste time shopping for mascara that’s probably made in the same mass-produced factory and repackaged into “lenghtening” “curling” and “volumizing”).

Telling me to drop that is like telling me to take my clothes off, you know? Asking someone with a physical disability to put themselves in a compromising position—sit at an awkward angle or let someone touch them—because the alternative “would be too hard for you” is considered to be disrespectful, so why is it advertised to me as the epitome of empowerment?

I guess I don’t feel indebted to my perceived autistic traits, unlike many other people with this diagnosis. Attempts to uncover the essence of my autism feels like expecting a stutterer to think, type and w-w-w-write in a stutter. Or expecting a blind person to be offended by the figurative usage of “see.” Or expecting a person with coprolalia to not laugh at the “Mommy sorry” meme. 

I also know that autism is not stutterinng or blindnesss or Tourette’s. Not that these three things are any more alike, but many people would agree that autism is a unique disaiblity—sometimes invisible, often characterized as pervasive.

So say it with me again: what is autism?

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People often ask me what I learned from my special education journey. The kid described in those early psychological reports sounds nothing like the Asaka everyone knows now, and most importantly, the person I see myself to be. What gives? I’d say that one of my biggest takeaways is that everything is relative. It’s a realization that can be comforting but also unsettling, and as I grew older, I've seen both sides. I lived it.

In hindsight, my need for orderliness wasn’t all that unusual. So many people want things to look just right or to follow a set of rules. Just look at Instagram: you have digital marketing managers churning out those sleek Canva posts, influencers sharing perfectly curated GRWMs, and people spending a fortune hopping from one wellness program after another. Back then, small annoyances—whether it be my dog’s training setback or ugly Sharpie mark-ups—felt like massive crises because I didn’t have bigger things to think about. As life became more stimulating, my microcosms became mere specks in my universe.

By the time I was in sixth grade, my worries changed from the minutiae of life to the typical puberty stuff: whether my bad haircut would grow out before the musical, the butterflies I felt around certain friends (hint: I can like girls), and my mom’s insistence that I was too young to shave my legs. For a while, I even lost interest in the dog I’d once pleaded with my parents for (Pumpkin forgives me), and more interested in going to the mall with my friends. Really, I was just a girl.

My school district was the worst possible place to try to reinvent myself. Like I said, I spent one year at one public elementary school before being moved to the other public elementary school. Kids from both elementary schools ended up at the same middle-high school. My schools were small, something I only realized when I started talking to people in college. I basically spent my entire childhood surrounded by the same 100 or so people.

When I started sixth grade, I thought that the group of preppy girls would get it. Many of them were nice. The others? Not so much. They brushed me off and said “What?” in a rude tone of voice.

But they all struck me as… mature? Or I don’t know, the type who wouldn’t furrow their brows in confusion if I told them that I wanted to try underwire bras, or that I was proud that a boy had asked me out, even though I didn’t actually like him back. They had the cutest clothes. I felt like some of the other kids that my special education teachers set me up with, wouldn’t get it. I just needed to show them that I was also growing. 

But there was one problem: I was late to the game.

The group talked about Dance Moms, The Walking Dead, and Teen Beach. They also joked about Miley Cyrus twerking and played Dumb Ways to Die. I found myself at a bit of a disadvantage since I had no cable TV at home and strict rules about inappropriate Google searches.

They also devoured books like The Hunger Games and Twilight. Serieses overwhelmed me because I didn’t know where to start. Fantasy novels confused me; I couldn’t keep track of all the names and places. Realistic fiction was more interesting anyway. I liked reading about everyday, semi-ordinary kids (Or talking dogs. I still had a soft spot for talking dogs. I was actually able to get into the Survivors series when it was relatively new).

I thought that these were things I could overcome by acting cool. But no amount of shrieking “Oh my gosh!” and talking a mile per hour (think: Trisha Paytas speed reading) was going to hype them up the same way they would, if I asked them how their day was going and went, Ugh, I know right? No amount of swaying my hips and flipping my hair wasn’t going to distract from the awkwardness of me approaching a group mid-conversation with: “Hey, do you want to hang out?”

Eventually, I settled with a group that I occasionally hung out with in elementary school. One of them was Hannah. Hannah wasn’t one for long conversations. This girl ran on catchphrases (I love you! Awesome sauce! Fluffy!), pranks, and Candy Crush. Basically, if Party City was a person. She had chaotic energy before that was a trendy thing to say.

But one time, she told me: “Asaka, you’re acting fresh.”

“What does that mean?” I asked. I knew it was figurative, but wasn’t sure what. Probably sassy.

“It means that you’re trying to act cool. You know, like Becky*,” she said, referencing the meanest girl in the grade. 

There was a difference between impressing and connecting, and I didn’t yet know how to connect. And once you make enough people uncomfortable that you earn the reputation of being “the kid with problems”, it only gets harder. People treat you differently from everyone else, and all your efforts is directed towards breaking through that initial wall before you learn about actual friendship.

By then, I was used to people treating me differently. The popular kids bolted up to me and said “Hi Asaka!” even though they never did it to everyone in class. I was happy they were taking to me, and I don’t think there’s anything ever wrong with making an effort to say hi to people who aren’t in your in-group. But something was missing from these interactions. Onomatopoeias occupied the space where people typically shared things about themselves.

Them: Asaka, what are you listening to?

Me: Sweeter Than Fiction by Taylor Swift

Them: YEAH? Do you like Taylor Swift?

Me: Yeah.

Them: [Looks to friends] AWW

Like before, it was the mostly adults who upset me. Mostly special ed people. Some of the older staff tended to be too lovey-dovey, saying “sweetie” and “good job” every five seconds, while possibly holding back a small sigh or two, but that wasn’t nearly as bad at the younger staff, who behaved like robots.

My new case manager, Jen*, loved giving me the same dead-end clarification about what was and wasn’t appropriate: It’s not appropriate to worry about that. It’s not appropriate to discuss that. It’s not appropriate to focus on that (for some reason, they all loved the word “focus on”). 

One day during recess, my classmate shared a story about how her teacher in third grade shamed her for having a messy backpack. She said that the teacher took out her backpack, dumped everything on her desk, and counted all the old worksheets she should’ve thrown away, right in front of the whole class.

That made me feel sick. When I went outside for recess, I still felt sick. And when I went to my next class, I still felt sick.

“This shouldn’t affect you. It’s none of your business,” said Jen. “You need to respect boundaries. It’s like personal space.”

Weekly counseling with Jen felt like bait and switch: I shared my deepest struggles (for a sixth grader, of course) hoping to get help, only to be given the most obvious and insulting answer. I stopped showing up to appointments.

“It’s not appropriate to tell your teacher how to do their job,” she told me, when I dropped off a letter, telling her why I didn’t want to talk.

“I can really feel you want to help me. I appreciate that very much. However, sometimes I feel frustrated and offended after sessions with you. I'm tired of bottling my feelings up,” I wrote.

I felt like she didn’t care about my feelings. When I got my period two months after starting sixth grade, I felt embarrassed about changing my pad. Most girls didn't start it and I felt like a freak, since I was puny. I asked Jen if I can use the faculty restoroom and she said no.

“I don't like the ‘It's a matter of discipline' approach,’" I remember writing.

"I never said that," she said. I knew she didn’t. I was talking about her tone, not the fact that she said no.

"I feel like you're not being open to what I'm saying, even though I'm trying to be open to what you're saying," she said.

But I couldn’t shake off the feeling that many people weren’t actually listening. Sometimes, it felt like they were just observing me with a notepad and a walkie-talkie, recording my “behavior.”

I turned on my parents’ desktop, opened Microsoft Word, and started writing down everything I wish people who claimed to help me knew. As time went on, my lists, numbers, and tables turned into full paragraphs. When I showed to one of my English teachers, Mrs. Schwartz, she loved it. The other English teachers loved it, too. They volunteered to help me revise my pieces after school and their faith in me is the reason I’m here now. I’m derermined to write for that little girl that noticed so much but couldn’t find the words.

Around the same time, I started seeing Judy. I liked Dr. Mori but lately, I’d been stopping myself mid-sentence, asking if I could explain it in English instead. And her English was good—she was the one who taught me what “validation” was before “valid” made its way into mainstream vernacular—but sometimes it felt like she didn’t quite get me, I don’t know.

Before my first session with Judy, I typed up an introductory letter. I listed some invalidating comments I wanted her to avoid, and referred to it as “my boundaries.” 

Mrs. Schwartz said maybe not use the word boundaries because “it might raise… some red flags.” I got rid of it but added it back before I printed it to bring to my session at 5PM. I used that word because I was still thinking about Jen and I’d realized she was the one being intrusive by suggesting I did something wrong in order to feel the way I did.

Thankfully, Judy didn’t take out the porcelain doll in the glass cabinet next to the door and ask me where my old therapist touched me. She did, however, ask:

“It’s OK if I said you were wrong, right? Sorry for my language, but sometimes you need people to call bullshit.” 

“Yeah, of course! That’s OK,” I said. I already felt relieved.

“What I don’t like is people looking down on me. Talking to me like I’m stupid,” I elaborated.

She shook her head in compassion.

“It almost sounds like they’re telling you who to be, instead of letting you be your own person. We’ll work together, kiddo.”

Hannah frequently invited me to her place to watch movies. We tried Hunger Games and I had no idea what was going on. We did Pitch Perfect, which was much better though I missed some things. It was obvious to me that Beca was worried about fitting in at Barden University, but not that her dad was a professor and that he had begged her to come for one year. And when the limo broke down on the way to the tournament, I didn’t realize that Amy never actually got around to putting gas in the tank until she did. I just thought it was interesting that she called herself Fat Amy. “So twig bitches like you don’t do it behind my back,” she explained.

I wanted to perform "Cups," but no matter how many times Hannah tried to help me, I just couldn’t get it right. I’ve always liked singing, but no one ever saw me break out into songs. Unless I was in the privacy of my room, I always felt like needed permission to sing. Honestly, I think I’m still like that.

I joined the theatre club. I enjoyed the singing, acting, and the festivities. I also loved introducing myself to upperclassmen because they didn’t know who I was. They were older and undeniably cooler, showcasing the allure of teenage life, and trying to make a fresh impression on them felt like an exciting adventure. It was intoxicating. By the end of the year, I was crushing on half the cast.

When practice ended early, Hannah took videos of us goofing around. I found it hilarious and at the end of the year, I went on iMovie to try to make a compilation of “funny moments” like the ones I’d seen on YouTube.

Watching myself on video made me feel weird. My demeanor was dull, with shoulders that curved inward and an unchanging groggy look from day to night, but when I smiled big, I smiled BIG. I had all the dimples in the world, and my eyes, according to my mom, were beautiful like crescent moons.

But sometimes, I couldn’t help but get a bit annoyed by my own smile; I could be frolicking in the sun in sheer bliss, or laughing in secondhand embarrassment about an offensive remark and it would be the same goofy grin (Some of it, I’m sure, is cultural; the Japanese smile a lot in general).

What frustrates me the most was the distinctive, muffled quality of my voice. It always sounded like something was stuck in the roof of my mouth. I said “word” instead of “world,” “phio” instead of “feel,” and tried to incite reverse McCarthyism to my humdrum suburban town by saying someone’s parents are “witch” not “rich.” 

My mom said it was probably because I had an accent and that I had braces. But I knew other people with braces and accents, and no one sounded like that. Well, except for some of the kids at school that I went to speech therapy with.

The school’s "speech therapy" sessions didn’t do squat for my pronunciation. We spent our time reading picture books about resolving conflicts and taking turns saying things like, “I’m sorry that…” “Thank you for…” and “I feel… when you…” At first, I didn't mind, because it meant that I was pulled out of math class every Wednesday, and there was no point in me going to math class. It made no difference because in order for me to retain anything, I had to sit next to the teacher, and have them demonstrate step-by-step. Missing math was fine but lately, the speech therapist has been getting on my nerves.

I relayed this to Judy. 

“I know someone who might be able to help you. Her name is Lisa,” said Judy. 

I looked at the business card she handed me.

“So, you’re saying she can help with my voice? Not just, like social skills?”

“Yes! That’s what she’s here for!”

Lisa told me that growing up, she used to have a lisp. “I’d say, ‘Hi, my name is Litha,’” emphasizing the th. “I couldn’t say my own name right!”

Lisa slipped on a glove, pulled out a popsicle stick and positioned it across my mouth. 

“Don't use your teeth. Just hold it there.” 

Within a second, my lips started to tremble, causing the popsicle stick to slip and scrape off a layer of hot pink Baby Lips as it fell onto the desk. Lisa explained to me that I had low muscle tone, which meant that my muscles were unusually weak. 

By then, I tossed my sequined Old Navy tees, pigtails, and denim skirts for Hollister hoodies, a shag haircut, and high-waisted jegging (the shag made me cry nonstop for a whole day because I looked like a Beatles member and not the cool #Hipster girl I found on Pinterest). Despite everything, I still felt like a little kid because of the way my society treated me.

When I was researching for my book, I learned that there was a word for it: infantilization.

I also learned that people can discriminate against people with disabilities the same way they have discriminated against women and people of different races (and continues to, but like many of us, I wasn’t taught about current events in middle school). The first time I heard the word ableism was in a book called Respect: A Girl's Guide to Getting Respect & Dealing When Your Line Is Crossed by Courtney Macavinta and Andrea Vander Pluym, which I picked up because I felt unheard, though I wasn’t really thinking about it in terms of disability at the time.

When I googled “autism” and “ableism,” I stumbled across Autistic Hoya, a blog run by disability rights activist Lydia X.Z Brown. Shortly after, I discovered #ActuallyAutistic, a hashtag used on social media (at that time, mostly on Tumblr) by autistic people to share firsthand experiences.

So you’re telling me I wasn’t imagining all the weird and kinda rude interactions I had with people? And you’re telling me that it wasn’t my fault? I felt relieved, and hopeful. The stigma against autism, like any other form of prejudice, is something we can— and should—overcome as a society.

Up until that point, I’d only ever heard the word autistic in a negative context. The kids who said that someone had autism said so with an uncomfortably deferential nod; the kids who said that someone was autistic scoffed and sneered, making no effort to hide their disdain. I knew that I had a speech impediment, and some other things I couldn’t put a finger to yet but filled my head with shame, disgust, and stereotypical images.

Through the practice of writing every day, I developed a strong inner voice that could hold its own — and so much more. If my head was a backpack, where my thoughts competed for space and threatening to spill out at the wrong time, then my manuscript was a flat surface where I could unpack everything, with enough space to hold two truths at once and mend what was broken.

I’d originally intended to publish the book on Thanksgiving, and when that didn’t work, it turned into winter break to spring break to graduation. It felt like watching a play where the "I want" song played on repeat, with no sign of the powerful ballad where the protagonist reveals important truths about herself. I was at the edge of my seat.

In the last month of eighth grade, I was nowhere near done with my manuscript. But I was already thinking about the cover art. I knew this one girl in class who was into photography and had all the fancy cameras. I told her I had autism and that I was writing a book about it.

“I couldn’t tell,” she said.

“Really? I’m surprised, because I know some people say that they can and other people say that they can’t,” I said. 

She froze for a spilt second. Then, she told me: “Asaka, everyone at school knows that you have autism.” These were her exact words. 

That was when I knew that I had one of two choices: tell my story, or let the world tell it.

By the time the graduation rehearsals started, I was white-knuckling. I started having nightmares about losing my flash drive, and about people hacking my computer. I stopped hanging out with other kids, and spent recess at the library, typing away at my computer. I believed that if I wasn't ready to publish my book, I wasn't ready to face high school, either.

The growing June sunlight gave life a dreamlike, surreal glare. It felt like I was reaching for something that I could never catch, and holding onto something that didn't belong to me. I was in suspense; in my head, out of body, and firmly on hold.

Three days after graduating, life got a bit too surreal. I was on a family trip to Japan for the first time after my grandpa passed, and when I arrived at the airport, I was greeted by the aromatic smell of seaweed, the warm voice of the airport announcements, and the vivid, colorful displays. It’s too good to be true.

How can I prove that my parents are real? Or my friends? Or anyone, really?

I can't.

I could feel the color drain from my face as the foundation of everything I cared about crumbled; a T-bone collision of fear and grief. I wanted to scream, the same way Jim Preston from the movie Passengers did when he realized he woke up 90 years early from his hibernation on his way to a planet 120 years away. 

My parents shot panicked glances at each other as I writhed on the hotel floor, hitting my head and screaming I CAN'T STOP! I CAN'T STOP! My head was pounding with questions that no one could answer — Why am I here? Why is it now? Why am I me? 

And that’s the thing about dissociation: it takes meaning and holds it hostage. I was surrounded by a haze, and in my stupor, the only thing that I could see was the sheer absurdity of my existence.

I couldn’t eat. I couldn’t sleep. I felt dizzy.

As the hospital carried away the stretcher, I made a promise to myself: I’m not going to write the book. I'm going to take it one day at a time. For a moment, a feeling of calm washed over me.

Then, it started again.

Thank you for reading CHAPTER SEVEN 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.

Subscribe now

- 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.

Next chapter:

Previous chapter:

Previous chapter / Next chapter

Two weeks before summer break, my parents made their final stop: a neurologist’s office in the City. Apparently, she had diagnosed me with Asperger’s. As I sat on the chair, over the thin walls, I heard my mom talking about transferring me to yet another school.

I flung open the door, sobbing. What do you mean, a different school? Why didn’t you tell me? HOW COULD YOU DO THIS TO ME?

My parents explained to me that the special education program at the other school had more resources to help me. What they told me blurs into the conversations I had with multiple adults in my life, over the next days, weeks, and months:

Grown-up: You know how you said you’re unique and sensitive? Things that don’t bother most people might bother you.

Ten-year-old me: Yeah?

Grown-up: That’s because you have autism.

Ten-year-old me: Okay.

Grown-up: That also explains why getting along with people hasn’t been easy for you. You might have trouble understanding certain things, so it can be harder for you to make friends.

Ten-year-old me: Oh, I don’t have trouble understanding anything. I think other people have trouble understanding me, though. But that’s because the things that don’t bother other people bother me, like you said. And you’re saying that’s autism, right?

Grown-up: That’s right, kiddo.

Ten-year-old me: Okay! That makes sense!

Well, kind of. I could see how a smaller class would make it easier to decompress and talk to someone when I felt anxious. But having different assignments, taking extra time to take tests, and being in a social skills group felt well… a bit extra. 

That was also when they started me on the SSRIs. I’d told my parents that they should medicate me, but my parents and I both knew that I’d meant in rhetorically, to say that I couldn’t help what I was feeling more than I could stop feeling physical pain. I didn’t know that was an actual option. Under the kitchen light, the little green pill looked too pretty. I felt a bit weird about it, like they were trying to gaslight me, but why the hell not? I didn’t notice a difference.

But switching schools? That was crossing the line.

It felt like a way for people to say that my feelings were incorrect, that knowing what I’m supposed to feel should’ve been enough for me to stop be so sensitive, and that since I was flunking, everything else also had to be dumbed down by a dozen. It felt like a scam. Why were my parents falling for this? 

The thing about self-awareness is that you don’t know what you don’t know. Half of the time, I had no clue whether I was feeling anxious or hurt or frustrated! I went for dramatic language, like traumatized and depressed. 

When I first saw one of those “thoughts, feelings, and behaviors” triangles, I didn’t get it. The idea, of course, is that by thinking about things a bit differently, I can make myself feel better. But I didn’t think; I just felt.

To me, there was no difference between emotional pain and physical pain: they were uncontrollable, unchangeable, and to be blamed on some external force, whether it be the whack of a volleyball or the prying gaze of a classmate. “Positive self-talk” stuck as well as a wet band-aid.

After I bid my farewells to 3N, I told my parents that I was suffering.

“We don’t want you to suffer. But you might feel differently once you start going there,” said my dad.

Tears rolled down my eyes.

My mom wrapped her arms around my shoulder.

“I know it’s hard, but think of all the good things that could happen.”

I sniffled. Why did she have to be so cheerful?

These days all I do is remind myself to be present, but there was once a time I couldn’t see beyond the here and now. As a kid, I lacked emotional permanance. It was hard for me to imagine how other people felt when I wasn’t there, and how my feelings might change over time. I must’ve known at some basic level that feelings change, and that other people had their lives as I had mine, but I couldn’t form a convincing image that stuck. 

My mom looked at me. My diagnosis had given her a sense of relief, renewing her determination to keep advocating on my behalf, and for that, I’m thankful.

“Remember how Ms. Sandler said that she knew some kids who know what you’re going through?” 

Mrs. Sandler was one of the school counselors Ms. Nally introduced me to. Mrs. Sandler (Sonlew, I said, since I couldn’t pronounce my R’s) spent her working hours driving back and forth between multiple schools in our small town. She also saw what Ms. Nally saw in me, that I didn’t see at the time: I was a writer. And since the new school was under the same district, I could continue working with her.

I don’t know if my parents had succeeded in convincing me as much as I had given up on trying to convince them. Nonetheless, I promised them that I’d give it a try.

My first challenge at the new school was navigating the attention directed at my upbringing: Where are you from? When did you move from Japan? Oh, I didn’t know you went to the other school! Wait, you’re Japanese? Park is a Korean name, right?

It took everything in me not to crawl under a desk. Mrs. Sandler suggested that perhaps, I could give a presentation at homeroom to talk about my background. And I must’ve mentioned something about me being unique and sensitive because she said it would be very helpful if I could fill my classmates in on the whole autism thing.

I was impartial to the idea. Mrs. Sandler also thought it was a good idea to link a Brainpop video on autism, which baffled me, because the subject of the presentation was me, not autism as a concept. Why not, I thought. As long as I could talk about my upbringing, and get that out of the way, I was happy.

The new school wasn’t all that bad. My parents told me that if I was still suffering at my new school, we could talk about switching back. 

I never suffered in the ways I thought, though Miss Clements*, the special education teachers got on my nerve. It bothered me that she used a different Sharpie each time to annotate my assignments. It bothered me that she only let me talk about dogs and feelings in three out of ten of my sentence-writing exercises, because she said I had to learn to talk about things. It bothered me that she said “QUIET HANDS” every time she caught me scratching my would-be, never-became boobs.

My memory is selective, as most childhood memories are, but sometimes I wonder if any of it was about Sharpies or private activities or dogs—or if this was about something else.

The rage I felt in those moments was like the rage I felt when my parents reminded me to do my homework just as I was about to start it, but worse. Today, I mostly recognize this rage in the context of my disability: I feel it when someone underestimates my intelligence, and I also feel it when I explain something to someone, only for them to ask the exact same questions I just went above and beyond answering—even that’s not their fault.

It’s rage, but not quite anger, or at least the type of anger where I shake and sniffle and say this is not fair. It’s something more primal. Defeat. Humiliation, even.

When I told the teacher, “I feel anxious,” it was never “Are you okay?” It was “That’s inappropriate behavior. Strike one.” And “quiet hands,” really? What was I, a dog?

Admittedly, I didn’t see anything wrong with pulling down my shirt in public. To me, boobs were just another body part to put cute bras on, similar to how you wear nice rings on your fingers or cool shoes on your feet (I probably fall somewhere on the asexual spectrum, even though I find people hot in ways I cannot explain), though I wonder if that was a hill—or hills, I should say—I would’ve been willing to die on, if I didn’t have other beef with that class.

When I was in bigger classes, I never felt like arguing as much. I was too excited about the subjects I was learning. Some of the special education staff made things harder than it needed to be. But others have been nothing but wonderful, and ultimately, they were all trying to help. Despite everything, the thought of switching back never crossed my mind.

I first met Emily* at the Halloween Party the PTA had put together. I was waiting in line outside the school gymnasium to sign in. In front of me was a tall girl I’d never seen before. I was a snow fairy and she was a witch.

Emily said she’d moved over the winter but went to a private school for a couple of months. She reached into the goody bag they gave her, and snapped a vampire tooth in her mouth.

She motioned me to the center of the gymnasium. “Let’s dance!”

Cupid Shuffle. Macarena. Barbie Girl. It didn’t matter if I was a beat or two behind; I could follow her lead. Every once in a while, she’d take my hands and spin me — a welcome break from scrambling to keep up. At the end of the night, we gave each other a high-five.

“That was fun!” I exclaimed.

About a week later, I spotted Emily again on my back from school.

“Wait!” I whispered excitedly to my mom, handing her my lunchbox.

I made a beeline towards where Emily was, but her back was turned to mine. She was talking to another friend. I shifted from foot to foot, aiming for an angle to face her. The moment she said bye to her friend, I waved and mumbled hi, but she was now walking the other way. 

I turned back, tears welling up. I yanked my mom by her arm, stuck up my nose, and stomped away. 

Feelings are so weird. I didn’t actually think Emilia was purposely ignoring me. I wanted this to work out so so badly and I needed an excuse to hear that we were friends. Of course, that wasn’t a good excuse for making other people feel bad.

I asked Mr. Sandler if she could pull Emily out of the homeroom before classes started, so that I could speak to her. I had to apologize. I hope she still wanted to be my friend.

“Okay, we can do that. Do you want to do that today, or do you want to maybe give it—”

“Can we do it now?”

“Are you sure?”

“Yes.”

“Okay, let me—” she grabbed the phone, typing in the extension for 5C.

Emilia turned the knobs, flashing me a shy smile behind the door window. She asked the first question any kid would ask in a situation like this:

“Am I in trouble?”

“No, not at all,” replied Mrs. Sandler.

Emily blinked, trying to decipher what I was saying. Her wide hazel eyes never mirrored the fluoride stares I got from many of the other girls in 5C. Mrs. Sandler didn’t say much but she nodded a lot; the cautious, yet encouraging glimmer in her eyes indicated that she knew something I didn’t.

“Oh, that’s OK. Don’t worry!” Emily said at last.

“So, are we… friends?”

“Yeah!”

And damn right we were friends. We weren’t in the same class, but we looked for each other whenever classes weren’t in session. At recess, we met up next to the swing bench. We auditioned for the school play (a musical rendition of Flat Stanley, where a small underclassman clambered in a cardboard costume twice his size) together and sat next to each other. 

I just stayed by her side, occasionally interrupting with little remarks (”I like your outfit” or “Are you excited for the spring musical?”) and listening to her talk to her other friends, and later asking her to elaborate on something she shared with her other friends. 

That was how I learned that Emily also had a case manager and a therapist.

One day, I told her: “I also have mental problems.”

“I know. It starts with an A, right?”

“Who told you that?”

“My dad.”

My face flushed.

“I don’t mean to be offensive or anything.”

“It’s not your fault,” I said. My dad must have told your dad. It wasn’t his story to tell.

“Asaka, it’s OK. I still love you.”

When I look back at my fifth grade self, I see a kid dealing with all the same questions, fears, and doubts all the other kids my age must’ve been dealing with, but getting stuck in places where others didn’t.

Since I couldn’t hear my own thoughts, I defined my opinions by working backward, pulling cliches and platitudes from books that struck a resonant chord and letting the echoes speak for me. This resulted in an over-simplified, almost cartoonish view of how life works. 

I remember the day Emily showed up in glitter eyeshadow.

“Why are you wearing makeup?” I asked. I thought she was going to say that she had a dance recital or a wedding to go to.

“Just felt like it.”

I was shocked.

“Your mom lets you wear makeup!?”

“Yeah, it helps me feel more confident.”

My smile turned upside down, and it stayed that way as I spent the rest of the day battling between two emotions: envy, that she was allowed to do what my mom said was strictly for grown-ups, and pity, that she didn’t feel good enough without makeup.

I knew that Emily already wasn’t in the best headspace. I couldn’t help but wonder if she was going to start starving herself, hooking up with guys, and getting wasted, like some of the characters I’ve read about in YA novels (with Scars to Your Beautiful playing in the background, but that song wasn’t released back then). Latching onto these familiar tropes only strengthened my belief that I was always right.

But slowly, things changed.

My therapist, Dr. Mori, was incredible. Instead of telling me what I should and shouldn’t worry about, she saw my anxiety as a sign of what had yet to be processed.

Dr. Mori didn’t just say that she understood; she showed me she understood by rephrasing what I was feeling. After listening patiently, she’d ask me some questions and come up with analogies that, without fail, made me think differently by the end of our 45-minute session.

“No one else has been able to convince me to feel better,” I remember telling her one day.

“Soon, you’ll learn to convince yourself,” she told me.

Ms. Sandler encouraged me to continue what I had been doing: using the brainstorming techniques Ms. Nally had taught me to articulate my feelings. I made mind maps, numbered lists, and collages of quotes to explain how I felt, and drew speech bubbles to act out my internal conflict. Ms. Sandler made sure to always bring a pen and a paper to our weekly check-ins, and when the school district started getting iPads, she showed me how to use the Notes app. 

It was still hard to hear myself think, but I could at least see myself think.

Thank you for reading CHAPTER SIX 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.

Subscribe now

- 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.

Next chapter:

Previous chapter:

Previous chapter / Next chapter

Some of the older folks I’ve talked to will tell me aha, they know what the issue is. The issue, they say, is that I have Asperger’s and “they” have “actual autism.” 

“You’re comparing yourself to people who can’t even talk, write, or go to school!,” they’d say. “Of course you’re going to feel out of place.” 

It’s either that, or I have “actual autism” and “they” are diagnosing themselves because it’s trendy. “Don’t worry about what kids on TikTok are saying; they just want attention,” they’d say. “Keep listening to your parents and doctors.”

For those of you who are too young to remember, Asperger’s Syndrome was a diagnosis given to people who had more subtle signs of autism and had no language delay, before the medical community decided, never mind, that’s also autism. Anyone who was diagnosed with Asperger’s was diagnosed with autism. Kind of like how all Musical.ly users got moved to TikTok, but much more serious. Many people don’t know this, but the diagnosis got its name from Hans Asperger, who singled out a subset of autistic children who were “educable” enough to be spared from the Nazis. So not as much of a cancel culture thing if you ask me; it’s a “let’s not repeat history” thing. 

Another label that is considered outdated is “high-functioning” and “low-functioning.” These labels are used as an excuse to stigmatize people and say they’re “better” or “worse.” It reminds me of how in the book Flowers for Algernon, they separated everyone in the mental institution into 'tidy' or 'untidy,’ saying that the ‘untidy’ ones were lost causes. That was a speculative novel from the 60s, and this kind of thinking has no place in 2024.

And how about someone like Elizabeth Bonker, a valedictorian at Rollins College who couldn’t talk, and gave a graduation speech through a computer? Instead, we say “high support needs” “medium support needs” and “low support needs” to focus on what they need from society, rather than how they fall short.

Oh, and also: many people on the spectrum will say that they’re “an autistic person” rather than a “person with autism” because they view autism as an crucial part of their identity, as opposed to a disease entity (Though some people still prefer “person with autism.” As you can see, I’m more used to just saying "autistic,” but will use "person with autism" if it’s called for — or if it’s the less clunky option). We also don’t use terms like “normal” or “healthy”; instead, we use “neurotypical” for those without significant neurological differences and “allistic” for those who are not autistic.

If you didn’t, then now you know. While some people will see these sort of updates and see them as this scary banned words list, I see it as helpful information about our eras and the reckonings that define them.

Changing the way we speak can be a powerful act of repair, though it can also sometimes lead to the development of a euphemistic treadmill, where we get rid of hurtful words with nicer sounding ones, only for those new words to take on the same negative connotations. As cliche as it may be, you never know what anyone is going through or have gone through in life, so the best we can do is to treat people with the same respect we hope to receive.

Now, as far as my little dilemma goes: I’d still have all the same questions if I replaced the word “autism” with “Asperger’s,” if I could assure people that I’m “high-functioning,” if I looked in the mirror and reminded myself that I had autism but autism didn’t have me. I know because that was where I started.

The vastness of “the spectrum” has long fascinated the public. How can a Silicon Valley exec have the same condition as someone who cannot shower on their own and communicates through grunts? For decades, TV, news, and magazines have reduced this topic to sensationalism fodder, shrouding the real question in a veil of mystique.

We know that approximately 80 million people worldwide are diagnosed with autism. We also know that, say, Takiwātanga in Maori and 自閉症 in Japanese, both translate to autism in English. But how do we know that we’re talking about the same things?

Enter the International Classification of Diseases (ICD), an official document maintained by the World Health Organization. This document (which is available online) is seen as the constitution for the medical world and is used for insurance billing in the United States, among other purposes.

The ICD-11 criteria for Autism Spectrum Disorder (6A02) are as follows:

• Persistent deficits in initiating and sustaining social communication and reciprocal social interactions that are outside the expected range of typical functioning given the individual’s age and level of intellectual development. Specific manifestations of these deficits vary according to chronological age, verbal and intellectual ability, and disorder severity. Manifestations may include limitations in the following:

  • Understanding of, interest in, or inappropriate responses to the verbal or non-verbal social communications of others.

  • Integration of spoken language with typical complimentary non-verbal cues, such as eye contact, gestures, facial expressions and body language. These non-verbal behaviours may also be reduced in frequency or intensity.

  • Understanding and use of language in social contexts and ability to initiate and sustain reciprocal social conversations.

  • Social awareness, leading to behaviour that is not appropriately modulated according to the social context.

  • Ability to imagine and respond to the feelings, emotional states, and attitudes of others.

  • Mutual sharing of interests.

  • Ability to make and sustain typical peer relationships.

• Persistent restricted, repetitive, and inflexible patterns of behaviour, interests, or activities that are clearly atypical or excessive for the individual’s age and sociocultural context. These may include:

  • Lack of adaptability to new experiences and circumstances, with associated distress, that can be evoked by trivial changes to a familiar environment or in response to unanticipated events.

  • Inflexible adherence to particular routines; for example, these may be geographic such as following familiar routes, or may require precise timing such as mealtimes or transport.

  • Excessive adherence to rules (e.g., when playing games).

  • Excessive and persistent ritualized patterns of behaviour (e.g., preoccupation with lining up or sorting objects in a particular way) that serve no apparent external purpose.

  • Repetitive and stereotyped motor movements, such as whole body movements (e.g., rocking), atypical gait (e.g., walking on tiptoes), unusual hand or finger movements and posturing. These behaviours are particularly common during early childhood.

  • Persistent preoccupation with one or more special interests, parts of objects, or specific types of stimuli (including media) or an unusually strong attachment to particular objects (excluding typical comforters).

  • Lifelong excessive and persistent hypersensitivity or hyposensitivity to sensory stimuli or unusual interest in a sensory stimulus, which may include actual or anticipated sounds, light, textures (especially clothing and food), odors and tastes, heat, cold, or pain.

The ICD also notes: “Some individuals with Autism Spectrum Disorder are able to function adequately in many contexts through exceptional effort, such that their deficits may not be apparent to others. A diagnosis of Autism Spectrum Disorder is still appropriate in such cases.”

Just like the ICD, the DSM defines autism in two core features: “persistent deficits” in social communication, and “restricted, repetitive behavior.” (American Psychiatric Association, which owns the DSM, states on its website that the DSM is “compatible” with ICD1, and lists corresponding codes for insurance billing2) DSM-5-TR is the current edition of the DSM, and it came out in 2022.

Almost everyone who fits ICD-11’s criteria for autism will fit DSM-5-TR’s criteria, except a minority of people with intellectual disabilities who may fit ICD-11’s descriptions but may not make the cut for the DSM’s criteria, which states that “social communication should be below that expected for general developmental level. Overall, the DSM uses a more standerized approach.

DSM-5-TR defines “persistent deficits” social communication (section A) by the following parameters: “social-emotional reciprocity,” which means that a person means that a person has difficulty taking turns and sharing (section A1); “nonverbal communicative behavior” which means stuff like facial expression, tone, and body language (section A2); and last but not least, “developing, maintaining, and understanding relationships” (section A3). In order to receive a diagnosis of autism, a person must experience challenges in all three areas.

When it comes to “restricted, repetitive behaviors” (section B), you only need two of four: this could be “stereotyped or repetitive motor movements” which means that a person does the same things over and over, like rocking back and forth (B1); “Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior” which means a person feels compelled to do things in a very specific way (B2); “Highly restricted, fixated interests that are abnormal in intensity or focus” which refers to having very focused interests, commonly referred to as "special interests” (B3); and/or “hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment” which means someone will seek out or avoid smells, sounds, sights, and touch that other people might not notice (B4).

Virtually everyone I know who’s been diagnosed with autism has a lot to say about the diagnostic process.

More often than not, I see the piece of paper diagnosing me as a loose thread connecting me to a bunch of discussions that often do not pertain to me. And I don’t mean to sound ungrateful because I realize that this piece of paper allows me to essential accommodation and healthcare, things people have fought for, and continue to fight for. It’s just that the diagnosis doesn’t feel very meaningful as an overarching concept. But for many others, it is meaningful.

And super personal.

At best, I have heard, it’s a long overdue confirmation of something they already know; at worst, a dehumanizing caricature of their mind. The language used in the criteria can be so othering precisely because the descriptions feel so familiar to the individual or their loved ones.

I’ve read countless Web articles about people who struggled to come to terms with their autism diagnoses. The crux of those stories isn’t “Huh? Is this referring to me? Maybe it’s a mistake.”

Rather, it’s “This is insulting.” ‘Deficit’ according to who? ‘Failure’ by whose standards? ‘Excessive’ for what reasons?

It’s “The whole thing is a scam because if I was a little white boy, I would have been diagnosed.” But they weren’t, so I was called lazy or dramatic or hysterical.

And each one of them resolve with reclamation, aka Owning It.

(Video by @alasiabeautyy)

I don’t wait for resolutions anymore. I thought that my summer reading Pathological: The True Story of Six Misdiagnoses by Sarah Fay would give me a different perspective. The author never “came to terms” with any of her diagnoses, and that excited me. But when I came across an interview about Fay’s new book, Cured where the reporter asks if a diagnosis could ever be helpful, her response mirrored what I’d already heard before:

Definitely, and I always use the example of the autism community, because they’ve done something so important and miraculous, given our mental health system. They’ve embraced that diagnosis. They have championed each other with it, they have created the neurodiversity movement, which has said that it’s really the world’s job to not just accept but appreciate the way they see the world, hear the world, and interact with the world.

When I saw that, I couldn’t help but wonder: What’s stopping her from just saying “Hey, so it turns out I’m autistic”? If I wanted to, I could easily cherry-pick details from Pathological to suggest Fay fits the DSM criteria for autism. Just to be clear, I’m not saying that we should actually do that to people (let’s not!). I’m sure Sarah Fay is a wonderful person, diagnosis or not.

My point is that if my only qualm with the diagnosis was that it was “too pathologizing”, I wouldn’t be having this conversation. There are plenty of other reasons that might make a person decide that a label isn’t right for them, or sit on the fence.

I was born at the cusp of the “different, not less” generation. My TikTok keeps showing me “neurospicy” content. Most of my therapists put air quotes on subjective words like “excessive” and replace the words failure and deficit with differences and needs when we review medical literature. And guess what? I still have questions.

When I first started brainstorming this project over a year ago, I conceptualized the competing definitions of autism into a Venn diagram, where one circle represented “people who act autistic,” meaning individuals who exhibit the behaviors described by the DSM or the ICD, and the other, slightly larger circle represented “people who think autistic” meaning individuals who identify with the underlying internal processes shared by a good majority of the first group.

The reality, of course, is much more complicated.

DSM-5-TR states that a person may exhibit symptoms of autism “currently, or by history.” In other words, both observations from the past and the present may be counted towards this diagnosis. Based on this alone, I assumed that the DSM’s definition of autism had everything to do with how you act, and nothing to do with how you think. After all, many people have life milestones delayed by other factors and undergo seasons of life catching up, building armors, and questioning other people’s expectations; if the DSM allows you to cherry-pick potentially unrelated behaviors and call them autism, that tells me that autism is a quantitative phenomenon and not a qualitative one.

Upon a closer examination, I found statements in the criteria that suggest otherwise. For example, it says that “Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life).” Again, it’s saying that if you exhibit symptoms of autism at one point, you can still get a diagnosis even if those symptoms later disappear. But it’s also saying that there has to be a reason. So which capacities are considered to be “limited,” and what exactly is being masked?

Comimg from someone who’s not neccesarily learning about this from a scientific and medical standpoint, I don’t know how people can even begin to pinpoint autism. I mean, the variables are pretty wild. Every autistic operson I’ve spoken to has “other stuff” going on—studies show that at least 70% of autistic people have at least 1 other mental disorder3. And according to the CDC, 37.9% of children diagnosed with autism also meet the criteria for an intellectual disability4.

I do know, however, that when doctors evaluate school-aged children for autism, they’ll usually administer an IQ test along with some math, reading, and writing problems, even though none of those tests directly assess the symptoms outlined in the diagnostic criterias. This gives them a better idea of how the child operates, compared to other kids who are similar to them. These diagnoses can be arbitrary because they’re based on social constructs and may involve flawed methodology, but that’s not the same as it being random. It’s not something that is given with zero thought.

Some people may not realize this, but much of what we’ve come to understand as progressive views on autism were spearheaded by individuals who had already been formally diagnosed. This includes Temple Grandin, diagnosed at age 3 in 19505, Donna Williams, diagnosed in her 30s in the 19916, and Kassiane Sibley, diagnosed at age 3 in 1985 (and later determined to be an “autistic savant”).7

All of these voices had the remarkable ability to fill the vacuum. Though Grandin has been guilty of spreading some very harmful ideas8, her advocacy was considered groundbreaking in the 90s; when her book, Thinking in Pictures, came out in 1995, that was the first time people saw a firsthand account of how the autistic mind does work, as opposed to how it doesn’t work. She explained, for example, that it takes her longer to decipher what people are saying, or learn how to use words correctly, because she thinks in such a visual way.

Unlike those of most people, my thoughts move from video like, specific images to generalization and concepts. For example, my concept of dogs is inextricably linked to every dog I've ever known. It's as if I have a card catalog of dogs I have seen, complete with pictures, which continually grows as I add more examples to my video library. If I think about Great Danes, the first memory that pops into my head is Dansk, the Great Dane owned by the headmaster at my high school. The next Great Dane I visualize is Helga, who was Dansk's replacement. The next is my aunt's dog in Arizona, and my final image comes from an advertisement for Fitwell seat covers that featured that kind of dog.

With her writing, Grandin pioneered the market for autism memoirs, inspiring generations of people to open up and share their journeys. Today, a record number of adults are seeking diagnoses for themselves.

(Graphic by The Neurocuriosity Club/@theneurocuriosityclub)

​​But who knew that there might not actually be an “official checklist” for autism? The ICD says that autism “may include” the behaviors they list out, and even the DSM notes that their examples are “illustrative, not exhaustive.” Both texts use the word “manifest.”

According to the Oxford Learner’s Dictionary, manifestation is “to show something clearly, especially a feeling, an attitude or a quality.”9 So basically: when every time the ICD or the DSM mentions a symptom of autism, it’s up to us (particularly, the people who do the diagnosing) to add “—or something along those lines.”

Of course, that begs the question: Where are those lines pointing to?

Thank you for reading CHAPTER THREE 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.

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- 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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