#TechnicallyAutistic: Dispatches from the Periphery

Introducing my multi-part series on words, meanings, and the dilemma of diagnosis

The day has come.

On a dreary February day, my dad picked me up from sixth period for a doctor’s appointment. I was fifteen, 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.

My social life at school was a dumpster fire. 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.

Everyone knew that autistic people struggled to understand social cues and social rules. I could understand perfectly fine. The thing was, I could always tell that people didn’t want to talk. I knew, for example, that yeah didn’t necessarily indicate agreement or approval, but I couldn’t stop rambling on to uninterested ears. I felt restless and I couldn’t stay quiet for too long.

Autism literature often portrayed small talk as being a foreign ritual, but I never saw it that way. I mostly struggled to relate, because the kids at school were always talking about Netflix. I could barely keep up with my responsibilities; I never had enough time or the brainpower to keep up with any of the episodes.

I liked casual conversations, though the tension in my voice marked me as someone who didn’t do casual: I was always out of air after a consonant or two. My syllables refused to exist as separate entities and my decibel barely exceeded a whisper, despite enunciating so forcefully that I would shudder. I wondered if that was why people tensed up when I approached them when all I said was something that was impossible to mess up, like “How are you?” Many kids at school made sure to speak with no pauses and look at their phones whenever I was within a two-yard radius so that the only way I could stop being a loner was to make a fool out of myself. Being clueless became a self-fulfilling prophecy.

There were times where I felt like I was being discriminated against; as someone who often presents as visibly disabled, I sometimes feel like everyone’s just WAITING on me to mess up. But I also think there were times where people geniunely did not know how to respond something I said or did. What bothered me the most was that I felt like I wasn’t living up to my potential.

“You know, it’s interesting…” said my therapist Judy one day, after I gave her the biweekly tea about my high school classmates.

“Because you get it, lock, stock and barrel,” she said.

But it seems like I don’t.

My sigh finished her sentence. The driving forces behind my social missteps were not as recogbizable as their Doppelgangers, but tangibly felt in my head and body: Impulsivity. Inattention to detail. Poor motor control.

And weren’t these things only tangentially related to autism?

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The moment I shook hands with the doctor — 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 the he turned around to face me, I told him that I was having problems due to my impulsivity. I couldn’t summon every single one of my concerns, 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, but I think he thought I was seeking reassurance that I hadn’t lied about being autistic. He would read a line that was meant to be a concession, and say something along the lines of very well, that is correct.

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 thought. 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.

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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.

Over the course of the next few weeks, I’ll be sharing some parts of my story that I’ve managed to put into words so far. I’m incredibly excited and relieved to put my story out there. I’m using this post as a “table of contents,” so I’ll post the links below (remember to subscribe for live updates!)

Anyone who is close to me knows how much this means to me. I didn’t know what ambition was until I decided to reclaim my fate from the linguistic boundaries that have shaped the course of my life. The winding path of self-determination is tortuous. 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 transparent about my thought processes, let curiosity prevail when in doubt, and remember that it’s the journey, not the destination, that counts.

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