Prologue
Hi friends! This is the PROLOGUE of #TechnicallyAutistic: Dispatches from the Periphery, a micro-memoir about words, meanings, and the dilemma of diagnosis. If you’re new, start HERE.
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 don’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 that 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 boring or confusing, but I found it hard, for reasons that weren’t specifically social in nature. Everyone was talking about Netflix, but I didn’t have the time, or the attention span, to sit through a TV episode. Of course, there were opportunities to bring up other topics, but they didn’t garner the same enthusiasm, and I often missed these chances altogether because of my recall troubles. In a course of a single conversation, I’d 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. Saying “Uh huh” instead of “Of course,” when someone thanks me for opening the door, not because I didn’t hear the stark difference in connotation, but because I’d forgotten for a second that “Of course” existed)
I also struggled to control my movements. My face felt stiff, as though my muscles were frozen. Talking, in the most literal sense, felt like a battle between my mind and body. My syllables refused to exist as separate entities and my decibel barely exceeded a whisper, despite enunciating so forcefully that I would shudder. Not being able to fully express myself physically left me feeling even more antsy, and I grew visibly tired as I grasped for words, attempting to verbalize something that could’ve been conveyed by a single glance. In these moments, I found myself defaulting to the responses my classmates had normalized in their interactions with me: one-word replies, condescending nods, and uncomfortable laughter.
But I could finish Judy’s sentence with a sigh.
I slouched in her corduroy couch. The driving forces behind my social missteps were not as recognizable as their Doppelganger’s, 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.
To many people, letting me walk out without my autism diagnosis was like letting the emperor march without his clothes on. To me, the diagnosis was the charade.
The adults weren’t arguing over whether I needed to go to smaller classes, get extra time for tests, or go to therapy every week. It was glaringly obvious in my case. But none of that mattered until they had a specific diagnosis on paper. My realities were not real until they were misconstrued, manipulated, mangled to fit into neatly defined categories. My parents insisted that these were just technicalities, that I should stop splitting hairs and touch grass, pretty much. Most kids my age won’t be interested in a lecture about the taxonomy of diagnoses, they’d remind me.
But I didn’t have to share my medical history in order for people to guess that I’m autistic. Sometimes you can tell. I owned it and tried to make it work, and for a while I felt good about it, but now, I just couldn’t. So here I was at fifteen, a shell of everything l'd ever managed to flip on its head and worn as an armor. The lines I recited with my whole chest was now a lump in my throat. I wanted out.
The doctor skimmed through my records, asking my dad questions about my childhood. When the 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—”
“That can happen in autism,” he said.
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 conflict I experienced in regard to my diagnosis.
He looked at the parts where I said I know that…, said very well, that is correct, and skipped over what came after the but…; I don’t think he could tell apart my main points from my side points from my counter-points — a recurring issue with my writing that would hinder my confidence for years to come. He probably thought that I was seeking reassurance that my autism is valid, that I’m not exaggerating for attention like some others from his generation might accuse me of. And that was easy.
The confidence in his voice was evident as he told me at the end of the appointment: “You have autism.”
I nodded.
I stared out the window on the car ride home. It was drizzling. What now? 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.
AUTISM SPECTRUM DISORDER.
Etched in my medical records and written on my forehead, these three words mean everything and nothing at the same time. I was nine when I first received my diagnosis. I’m twenty-two now, which means that I spent more years with it than without. Hopefully, most of you by now know that my relationship with my diagnosis is ambivalent to say the least.
Before I go into our messy history and explain our “it’s complicated” status, I want to be clear in saying that diagnosis and disability are not interchangeable for me. Disability can refer to all flavors of mental or physical states that affect a person’s life; the rest is up to interpretation. Diagnoses, on the other hand, are the names we attach to the said state to further classify them.
This is important. If someone says that they’re struggling with their autism, you could take that as them saying they’re struggling with the parts of themselves that are known as autism. That is not what I mean when I say that I’m struggling with my autism diagnosis. What I mean is that I’m struggling with the word we use to further classify these parts, as opposed to the parts themselves (that definitely happens, but that’s not the point). I wish everyone understood that someone's diagnosis doesn’t have to define their disability, the same way they can understand that someone's disability doesn’t have to define them as a person.
That day, 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 New York Post article written about me (“It’s not the same,” says 15-year 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. My story doesn’t exist to persuade anyone that my autism diagnosis was correct or incorrect. It might, perhaps, convince you that labels can be super confusing, semantics is one gnarly bastard, and it’s perfectly okay to not have it all figured out.
Time and again, I’ve come full circle, with no solid ground to be found. I can’t write my way around this, and I also can’t write my way out of this. The best I can do is to write my way through; to be honest about what I know so far and what I believe is true, let curiosity prevail when in doubt, and remember that it’s the journey, not the destination, that counts.