1. My Roman Empire

Because you don't need ME to tell you that autism is a huge spectrum and that there's nothing wrong with being autistic.

Welcome to CHAPTER ONE of #TechnicallyAutistic: Lessons from the Periphery, where I talk about the diagnosis that never quite fit and how it changed my life.

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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. 

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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.

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Thank you for reading CHAPTER ONE of #TechnicallyAutistic: Lessons from the Periphery. Just a friendly reminder that this blog series is a work of MEMOIR. All pertinent disclaimers apply, such as: 

- My narratives reflect the cultural context of the present year (2024? No way!) and my experience of growing up in the 2010s. If the world doesn’t change and I don’t change, then I’d be damned—we’d all be. Stay curious.

- I’ve made minimal changes to some names* and identifying details for the sake of privacy. I’d rather you not stay curious about that.

- I also used fictional names* for medications because different things work for different folks and I don’t want to interfere with anyone else’s path to wellness. (Do I have to tell you that I’m not a doctor?)

- But yes, this series contains depictions of mental illness that some readers may find triggering. Please take care of yourselves.

Now that I got that out of the way, a special shout-out to the best accountability buddies in the world: Dr. Harriet Hustis, for allowing me to start this project in a life-changing summer program, Nora Neus/The Longform Lab for supporting me through completion, and the journalism faculty of TCNJ for setting me up for success.

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