Prologue
Welcome to the PROLOGUE of #TechnicallyAutistic: Lessons from the Periphery, a digital memoir about words, meanings, and feeling like an outsider amongst outsiders.
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The day has come.
On a dreary February day, my dad picked me up from sixth period for a doctor’s appointment. I was in ninth grade, and I’d convinced my care team to refer me for a reassessment. A few weeks ago, I’d taken two paper tests in the guidance office, an IQ test and an ‘academic achievement’ test, and at last, I was in the waiting room at the St. Joseph’s Child Development Center. I wasn’t here to ask if I was autistic or not. No — I was here to dispute my autism diagnosis.
Everyone knew that autistic people struggled to understand social cues and social rules. I could understand perfectly fine, and I was sick of being told that I didn’t.
“You know, it’s interesting…” my therapist, Judy, had said one day after I gave her the biweekly tea about my classmates: The two “really good friends” who are definitely kissing, and maybe more. The professor who thinks his jokes are funny when we’re all laughing at him, not with him. The kid in class who didn’t do anything wrong but isn’t super helpful, and how I wish she’d leave me alone so that I don’t have to be the bad guy…
“Because you get it, lock, stock, and barrel,” she said.
But it seems like I don’t.
Autism literature often portrayed small talk as being a foreign ritual, but I never saw it that way. In fact, I felt energized by seemingly shallow interactions, and I’d do anything for that rush. My primary way of interacting with people was to invade their personal space. I’d swerve across the hallway to ask my “friends” (acquaintances, really, but wishful thinking is a hell of a drug) questions in an urgent tone. I’d interrupt a group conversation with an unfunny excuse of a one-liner, or tell them that I’m bored. I’d raise my hand during Socratic seminars to share a loosely related anecdote that I should’ve taken to group therapy and not English class.
When I made the whole room go quiet, it wasn’t because I didn’t get it; it was because I felt like I was going to explode if I didn’t speak right then. Knowing that a lackadaisical “Yeah” doesn’t indicate agreement or approval didn’t stop me from rambling on to uninterested ears. It was a compulsive urge that decayed into this gross feeling, only when the rush wore off — nothing more, nothing less. I’d apologize profusely, just to find myself in the same situation over and over again because I didn’t know how else to connect with people.
I didn’t find small talk pointless or confusing, but I found it hard, for reasons that weren’t specifically “social” in nature, if I really thought about it. Maybe I’d group it under “executive functioning,” which is the word my Study Skills teacher used to also describe my difficulty paying attention in lectures and remembering to do my homework.
I don’t know, I felt slow. Everyone loved to talk about Netflix shows, but I didn’t have the time, or the attention span, to sit through a TV episode. I knew that there were opportunities to talk about other things, but they never seemed to generate even a fraction of the enthusiasm that Stranger Things did. Many times, I missed these chances altogether, because it took me ages to recall information. In every conversation I had, I'd always find myself blanking out on at least one of the following details:
What someone told me in previous conversations (i.e*.* They said they were going to Hoboken)
How that pertains to me (i.e. Oh, that pizza place I went to last month was also in Hoboken!)
Names of everyday objects (i.e. That… thingy. The wall. The hall. THE DOOR!)
Conversational phrases (i.e. Mumbling “Uh huh” instead of “Of course” as someone thanks me for opening the door, not because I missed the stark difference in connotation, but because it’s slipped my mind for a second that “Of course” was a phrase in the English language)
Talking, even in the most basic sense, felt like a battle between my mind and body. The muscles in my face felt heavy as if they were tied in a knot, unable to move freely. My syllables refused to exist as separate entities and my decibel barely exceeded a whisper, despite enunciating so forcefully that I would shudder.
I wanted nothing more than for someone to talk to me, but when the precious moment came, I became tired right away because I was scrambling to find the words for something that could’ve been conveyed by a single glance. Ultimately, I found myself recycling the responses I was used to getting from my classmates: one-word replies, condescending nods, and uncomfortable laughter.
But I could finish Judy’s sentence with a sigh.
I slouched on her corduroy couch. The forces driving the behaviors I couldn’t control were not as recognizable as their Doppelgangers, but tangibly felt in my head and body:
Inattention to detail.
Impulsivity.
Poor motor control.
And weren’t these things only tangentially related to autism?
I straightened my back.
The moment I shook hands with the diagnostician — a man in his late sixties with a drab voice and wire-rimmed glasses — I knew that this was shot in the dark. All that was left to do was to hope for the best.
His desk was sprawled with copies of my previous psychological evaluations, report cards, and the like. His confusion was evident as he looked at me and my dad and asked us the sixth-four-dollar question:
“What brings you here?”
My dad looked at me:
“Well…”
Just play it cool.
“I know that I was diagnosed with autism but I don’t know— Isn’t there other stuff that could cause something like this? Like, ADHD?”
Just give me something to work with. I wanted to say. Something other than the same old label that’s been in place for the past eight years.
The doctor skimmed through my records, asking my dad questions about my childhood. When he turned around to face me, I told him that I was having problems due to my impulsivity. I was already starting to feel my thoughts slip away, and if nothing else, I wanted to make sure he knew that there was more than meets the eye:
“I know what’s socially appropriate, but I can’t stop. That doesn’t mean I don’t understand, because I do—”
He didn’t bat an eye. “That can happen in autism.”
Since I knew this was going to happen, I came prepared with a blog post. The gray-haired man looked ever so slightly amused as I asked him if I could show him something I wrote.
The blog post detailed the internal debates I had about my diagnosis. He looked at the parts that began with “I know that…,” replied very well, that is correct, and skipped all the parts where I went, “But…” He couldn’t tell apart my main points from my side points from my counter-points (Something about my writing does that to people, which is something I still feel insecure about).
He probably thought that I was seeking reassurance that my autism was valid, that I wasn’t exaggerating for attention like some other people his age could say I was. And that was easy.
The confidence in his voice was evident as he told me at the end of the appointment: “You have autism.”
On the car ride home, I stared out the window. It was drizzling. What now? At fifteen, I was a shell of everything I'd ever managed to flip on its head and wear as armor. I’d waited months and months for my turn to find the clarity and vindication my autism diagnosis failed to give me.
And all I got was a nail in the coffin.
Do you remember "The Emperor's New Clothes"? And not that Panic! at the Disco song, but the fable by Hans Christian Anderson. If you don’t, here’s a refresher:
There's this emperor who loves wearing fancy clothes. One day, two con men knock on his door, telling him they can make him the most epic outfit ever. But here's the catch: only cool people can see it [Insert generic “only the real ones get it” meme. Or, alternately, a clip of that orange man saying, “Only the best, very best”]. So if anyone says they can't see it, pay them no mind. They’re a fool.
The emperor, thinking he's about to put on some awesome clothes, strips down and puts on these invisible clothes. “Clothes” his (bare) ass.
Wait a minute, he thinks, I’m not wearing anything.
No, but wait. Only the best people can see it. But I thought I was—
The emperor takes a deep breath and decides to fake it till he makes it.
Of course, that’s a trap. Everyone else can see he's wearing nothing, too. But they're all too chicken to say anything because they don’t want to be on his bad side. Even his long-suffering advisor stays quiet.
This is how he ends up parading around the street naked. Still, nothing. Everyone goes along with it. That is until a little kid shouts out: “Look! He’s NAKED.” All hell breaks loose.
I’m bringing this up because that doctor I saw in 9th grade must’ve felt like the advisor, tasked with telling me the truth. To him, letting me out the door without my autism diagnosis was like letting the emperor march without his clothes on. In order to avoid the same fate, he confirmed my diagnosis: Autism Spectrum Disorder.
If for some reason I didn’t realize I appeared autistic, the big, purple book on his table made it clear. How could I argue against psychology, a field that existed long before I did? He had a PhD and I was barely passing biology. And sure, I was complex, multi-dimensional, and intelligent, but so were other autistic people. I wasn’t special. At least not like that.
My flavor of “different” — the way I shuffled about with my head jutting forward, and spoke in short sentences, slurring my words and sheepishly giggling after each breath — was common in autism programs and elicited double takes elsewhere. For a brief moment, they might’ve mistaken me for a timid foreigner learning to speak English, but my greasy, haphazardly bleached hair and the way I quickly rattled off phrases like "questioning my diagnosis" and "socially appropriate" set me apart.
To him, entertaining the idea that I wasn’t even autistic meant playing pretend. And I was too old for make-believes.
But to me, the diagnosis was the make-believe.
My mom always said she knew I was “different” since I was 4. By the time I was 10, everyone knew I had "mental problems." But getting into special education classes required more than an inkling; it needed a formal diagnosis, made by a licensed professional.
Same deal in college. If my professors hadn’t seen me hobble into my seat and constantly adjust my posture on the first day, they would’ve heard me ask a question in a roundabout way, resulting in an awkward back-and-forth when they ask, “Did that help?” But to request accommodations, I had to provide paperwork confirming that I was registered with the College’s Accessibility Resources Center.
And guess what was needed for that? A diagnosis, that’s right.
And well… The condition that I’ve been diagnosed with. That’s also obvious, isn’t it?
But is it really?
Thank you for reading the PROLOGUE of my digital memoir, #TechnicallyAutistic: Lessons from the Periphery. 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, if you can help it.
- 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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