8. Rearranging the Pieces

How I came to question my diagnosis

Welcome to CHAPTER EIGHT of #TechnicallyAutistic: Lessons from the Periphery, where I talk about how I started to question my diagnosis when I was fifteen.

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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.

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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.

- 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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1. At that time, I read a lot of Web articles likening executive functioning to the "CEO of the brain,” but now I hear more people compare it to the secretary, which makes more sense. This reframe acknowledges that ADHD doesn't make someone less credible, and recognizes the added challenges faced by women and other minority groups, who are often expected to clean up after everyone else.