10. ROI (Release of Information)

The truth about my "special interests" (cont.)

Welcome to CHAPTER TEN of #TechnicallyAutistic: Lessons from the Periphery, where I talk about my struggle to control in high school.

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My schedule for junior year of high school was a study of extremes: special education for Geometry, and Advanced Placed Language and Composition (or AP Lang, in short). 

I was also happy to get into AP Lang because I knew that it would look good on my transcript. By then, I knew that I wanted to write professionally as a job. Writing, to me, was never a standalone subject; it was a means to an end. I could talk for hours about many topics — life, relationships, fashion — with many more people, but that wasn’t an option. 

So what do you do? You start a blog or something. I enjoyed reading personal essays on places like Vice and Buzzfeed and and I hoped that someday, I could write like that, too.

I still have the Quizlet from the first week of AP Lang.

Denotation, the simple meaning of a word. Connotation, the more complicated meaning of a word. “Weeping” and “sobbing” are both synonyms for crying, but "weeping" typically suggests deep grief or being profoundly moved, while "sobbing" might imply feeling overwhelmed or victimized. (That’s why we shouldn’t play Mad Libs with the thesaurus, said my teacher, Mrs. Krapels). 

Active voice, a sentence structure where the subject does something, like “Asaka disclosed her disability.” Passive voice, a sentence structure where something happens to the subject. Like “Asaka’s disability was disclosed.”

Synecdoche, a figure of speech where a part of something is used to represent the whole or vice versa. When we say, "all hands on deck," the hands represent the whole crew. And when we say Attention-Deficit Hyperactivity Disorder, the person’s struggle to sit still and focus represents weaknesses in a skill set that psychologists refer to as executive functioning (and society over-values, if I may add).

Antecedent, the person, thing, or idea that is named (Chadwick Bosman/the American Dream mall/the Varsity Blue scandal) and later replaced by a pronoun (she/it/this) or another substitute (the legendary actor/the popular destination/the high-profile case) later in a sentence or paragraph. 

Oh, and I just used parallelism.

Every day, we wrote about writing, asking an important question: why, out of all possible ways, did they say it like that? It sounds impossible at first, but it’s not. Under the energetic, whip-smart teacher and the groggy, but thoughtful eyes of my classmates, no word, sentence, or juxtaposition, went unnoticed. I started to understand what exactly gave each piece of text its kick, its oomph. 

As with most things in life, doing it was the hardest part. Well into the second semester, Mrs. Krapels had to still remind me to not end paragraphs with quotes. I knew that I had to elaborate but always hit a block. But overall, I did well. I was also taking a journalism elective with Mrs. Krapels, and she always commented that my writing was “very strong.” 

“Keep following your dreams. You’re going to do great things,” she told me.

Though I was more passionate about writing than ever, my blog was stalling. The more I understood the thing I was writing about, the harder it was. My rapid-fire thoughts outpaced my ability to produce. Even my keyboards were no match. Weekly goals turned into monthly struggles which turned into yearly yearnings that faded into the background as life brought new responsibilities.

I hadn’t posted in nearly a year when I changed the name of my blog from “Openly Autistic (Amongst Other Things)” to “Spectacular!” At that time, an alarming number of high schoolers used the word “sped,” a slang for special education, to mean “stupid” or “silly,” but you know how I deal with these sorts of things. I decided to identify broadly as disabled, without specifying a diagnosis.

When I tried to write an essay about the doctors’ (re)visit from freshman year, I thought that I was being very clear in my writing, because my therapists said it made sense. But when I decided to ask a friend of a friend for feedback, I realized that all this might not be that clear to a layperson:

Him: I admire your vulnerability and passion for educating people about disability. This helped me understand how autism, ADHD, and dyspraxia makes it harder for you to socialize. 

Me: Thank you so much! That means so much to me. Here I’m implying that what I used to think was autism, is probably ADHD and dyspraxia, but were you able to catch that?

Him: Hmm I see. The words ‘ADHD’ and ‘dyspraxia’ are mentioned so many times that I’m a little confused as to what they mean.

A familiar surge of anger rose in my body. I wasn’t mad at him; I was mad at the situation. The essay was twenty-five pages, and I couldn’t identify the antecedent.

“When all is said and done, labels don’t matter,” I said to my mom. 

“I told you,” she smiled playfully. 

But I could only shrug. “Yeah.” 

All was not said and done until I had gone to the doctor. At least now I had a story. A story that showed how diligently I researched and how strongly I felt about all this and how much faith I’d put in the system before I stopped putting stock in it. I just couldn’t be the “Who’s gonna tell her” girl.

I don’t remember what I wrote in the twenty-five-pager, but I vividly remember using the word compact. I stated that replacing my autism diagnosis with other diagnoses would’ve given me a “more compact” way to convey my circumstances to the world.

I yearned for containment. I wondered what it was like to take up less space, not for other people’s comfort, but for my mobility. I wanted to live in the moment, be myself, and roll with the punches, wherever I was.

Instead, I was tethered. Chained to private locations and rehearsed meetings where no one could leave until I went over all the ifs ands or buts—or got a helplessly confused look, whichever came first. Glued to a computer, a portal to the Everything You Need to Know About Interacting with. 

Without a doubt, social media was one of the things that made me feel more compact. When Mrs. Krapels had the entire journalism class enter the New York Times Student Editorial Contest, I decided to write an essay called I’m a Disabled Teenager, and Social Media is My Lifeline:

I’m keenly attuned to the unwritten rules of social interaction. I can identify the subtle variations in people’s facial expressions, and I’m quick to read between the lines. And my discernment is not just on an intellectual level, but also at an intuitive level: I’m intimately familiar with the dance of social interaction.

The information that I just provided sounds like a mundanity, until I tell you I was diagnosed with autism. 

Then, I went on to talk about what everyday social interactions were like for me, and how it often seemed like I didn’t understand or relate to certain things, even though I did.

“On social media, though, I’m a completely different person,” I wrote. “I’m dynamic. I’m assertive. I’m people-oriented.”

I won.

Many months later, I told Kayla that I felt like an imposter. That essay, I admitted to her, wasn’t about what social media did for me, but what I wish social media did for me. And I didn’t even know it.

My blog was stalling, and by the time my editorial was published, I hadn’t posted anything for a solid year. Instead, I resigned myself to sharing every single passing thought on my Instagram stories, from trivial complaints like getting sunscreen in my eye to my opinions on political tweets. My frantic, verbose tone made me sound like a celebrity who Googled conspiracy theories during a ketamine bender and was convinced they were the second coming of Christ if not a satirical Tumblr girl made up by a 4chan troll. And yes, I talked about my disability, but in bits and pieces. Anything bigger than that felt unmanageable.

This weekend will be the week I’ll publish a blog post, I’d tell myself every week. But I could barely keep my eyes open. Every morning was a battle between me and my mom to get me out of bed—a challenge we accepted as a part of our routine, much like a rock, paper, scissor for the last piece of cookie—but at least twice a month, she'd lose, resulting in a critical level of “Absent” on my transcript.

Weekdays were spent reading the same sentences over and over in a textbook, missing details like painting over a gapped surface. Every few minutes, I paced around my room, skipping one song from another on my headphones. Music was always there for me. It never asked me to pay attention (except when I broke my earbuds, which happened every couple of months since I never remembered to untangle the cords until they were unusable); I could tune out the lyrics and groove to the bassline, or replay the bridge as many times as I wanted to.

On weekends, I regularly spent 5 to 6 hours going from my bed to the shower I should’ve taken four days ago, struggling to piece together the steps needed to shower.

Every time I found the time to actually write, it was a purge. I hounded poor Kayla, begging her to help edit my twenty-plus pagers. I told her to tear apart my writing and rephrase all the sentences I’ve colored red, and she obliged. There was nothing I wouldn’t do to become a better writer. But one time, I cried because she was so much better at writing than I was.

“Well, she’s in Northeastern,” said my mom. 

“Is she studying creative writing? Or journalism? Because the last time I checked—” I sobbed.

“I feel like I have to be a fucking prodigy,” I remember telling Judy.

I felt that my disability made me so incomprehensible and unknowable that I needed a large audience and some newsworthy (read: click-baity) content in order to have an active social life. I knew that as soon as I left for college, I wanted to write another article for a mainstream media outlet—the first step towards my increasingly grandiose aspirations, like getting 10K followers and being on reality TV.

Once I asked Judy if I had Narcissistic Personality Disorder because I didn’t feel empathy for other people. I cared about other people and always strived to do the right thing, but I seemed to lack the deep emotional response that other people had. Now that I think about it, my generation is the first generation to grow up after “the autism as a lack of empathy” myth; we were taught that if someone with autism doesn’t display the expected emotions, it's usually because there was some sort of miscommunication. The problem was that I had trouble feeling.

What did that mean?

“But you haven’t got a lot of empathy for yourself,” said Judy.

She was right. Being alone didn’t make me sad, just bored. Being criticized made me scared, but not guilty. Being excluded made me feel frustrated, not hurt.

Judy said that this is what prolonged isolation can do to you. It changes you.

After over a year of weekly group discussions and several bake sales, Access-Ability received an invitation from the Principal to present to the middle school health class.

“Guys, I know what to do,” I spluttered. These kids were probably taught at some point that disability meant that something is “wrong” with a person’s body or mind, but now, all the teachers were gushing about “celebrating differences” in the context of disability. If we didn’t show them how these statements fit together, it could make the whole topic feel like a scary, controversial mess that people gloss over.

My thoughts might be all over the place, but that doesn’t make them wrong, I explained to the twelve-year old. This mind was the only mind I had, and I had ideas that only I could come up with, I told them. And when people let me focus on big ideas instead of small details, I can thrive.

Accommodations were crucial, but who said it had to come from a place of “She’s sick; she can’t help it”? They could just as easily come from a place of wholehearted, enthusiastic acceptance that we all have strengths and weaknesses, many times you can’t have one without the other, and some of us just have very interesting package deals.

But when my difficulty concentrating and organizing interfered with my ability to become a better writer, acceptance didn’t feel good enough. Writing was the one thing that I could control, a force that made me so invincible that for the longest time, I never moped about not being able to fit in.

I felt defeated. But I didn’t cry or come close to crying. Just numb. The dreamlike haze that landed me in the hospital was still there; it just stopped being frightening. Even outside of school, I hardly ever experienced life directly through my own eyes or ears, instead relying on my mom to point things out to me later. No wonder why I over-intellectualized. I’d get excited about going out, but as soon I finished eating, my thoughts began to race with what I’d do when I got home. Despite my best efforts, keeping my head still felt like a battle against gravity.

I knew that people took medication for ADHD. I wondered if that could help. My psychiatrist, Dr. Roberts*, shook her head. She told me that most ADHD medication would be off the table for me due to the potential cardiac side effects, but that we could discuss other options. 

“Maybe later,” said my dad.

“You did say you were also having Existential Thoughts, which as you know needs to be monitored. Should we go up on the Lomelix*?” she said, offering to increase my SSRI.

My dad hesitated for a moment, then nodded. “Yeah.”

They both turned to me. “Does that sound good?”

I nodded.

When I asked about ADHD medication at my next cardiology appointment, the cardiologist pressed her lips together.

“Stimulants increase your blood pressure and heart rate and we don’t want that.”

College would be easier, I told myself. The classes would be fun enough to grab my attention, and with my friends—instead of with family, whose familiar voices had long faded into background noise—by my side, I’d feel more present.

“Is it OK to have caffeine?” I asked. I’d been drinking black tea every day after coming home from school because otherwise, I would sleep for hours. My parents weren’t worried about it, but I wanted to make sure.

“Oh, that’s fine,” the cardiologist replied.

I spent a lot of time thinking about the future because the only way to make life tolerable was to define every moment relative to its inevitable end. Math class, 7 hours until I can go home and write. Mondays, 5 days left until the weekend. April? 70 days before summer break! My life hasn’t begun yet. I never let myself get too attached to anyone or anything. I started to stay up later and later, absorbed in making mood boards, shopping lists, and apartments for Seattle. 

By the time I was 17, I found myself contemplating life at 60.

I wasn’t thrilled. When I saw old people, I judged their appearance — Ew, the hair! — which reflected my own lack of purpose — But it was cool in the 80s. They must’ve worn it in the 80s because it was cool, and now they do it even though it’s not the cool thing to do. So… they stopped caring? How? When?

How do I know what to live for, when everything is changing?

I set out on another mission impossible: crafting the ultimate, trend-defying brand identity that would last me from 17 through 70. 

I changed my writing voice to sound more timeless. If I wasn’t using the smartest-sounding words on Thesarus.com (I was completely reliant on the thesaurus; I used it for every other sentence and got significantly lower scores on paper exams where I couldn’t), then I was cursing like a sailor. “Yeet” was temporary. “Fuck” was forever. Just like the pursuit of diagnosis, the pursuit of timelessness was one of bargaining. I thought that I was upgrading, but looking back, these changes were superficial. Shallow, like everything else did. 

I judged older people even more harshly. Every time I was out in public, I laid my eyes on older women, doing a series of mental calculations: How old do I think she is? Why do I think that? How many years can I take off if she did her makeup differently? Would she get away with wearing something edgier? 

Nostalgia was a private affair. After years of diving into the “related artists” rabbit holes, I had 6000+ songs on Spotify from obscure 2000s and 2010s artists that many people my age had never heard of, in a variety of genres spanning from neon pop-punk to darkwave. 

To add a little bit of fun, I decided to make an anonymous Reddit account to help people find lost songs. On the subreddit r/TipOfMyTongue, there was no shortage of people asking about that one band that was on The Hills and had a slot on Warped Tour once, and just fell off the face of the earth. 

Some people described the lyrics and uploaded humming melodies, but many of them couldn’t remember that much so they’d type a paragraph describing the song through comparisons—Their music sounded like a mix of this and that. The lead singer looked like a goth version of this famous actor. Close, but the song I’m looking for is heavier. And these were my favorite challenges.

Over the spring of my junior year, I got a stacked bob, more commonly known as the Karen haircut. I stopped wearing ripped jeggings and started wearing boxy dresses handed down from my mom. I looked at my Mayday Parade shirt, reeking of sweat and perfume because I’d been avoiding washing it to preserve the print. I threw it in the trash.

And I started picturing all the Terrible Things that could happen to me—No, silly, your life has begun, and don’t you know, it’s headed to the end. You could die in a plane crash! You could get run over by a car! Oh, and don’t forget; you’re medically high-risk! 

I don’t know why I thought I could scare myself into being present. Maybe it was good that I wasn’t allowed to install Dumb Ways to Die in sixth grade.

“The way they treated you made me so fucking angry,” Kayla said. It was the first time I’d heard her curse, and most definitely not the last.

Three years into university, Kayla had a fair share of amusing stories, but I think the underwear run took the cake. It’s an unofficial tradition in Northeastern (and apparant, UCLA) where, every year, hundreds of students run across campus in nothing but their underwear.

I, too, was one step closer. After what seemed like forever, I finished taking my SAT, relieving me of hours of math tutoring and Khan Academy. Now, it was time for me to write my college essay.

I didn’t have anything particularly interesting to write about, so once again, I went for the aspirational. I ended up translating what I had on my Instagram bio at the time. If I remember correctly, it had “WRITER” in all caps, followed by some cocky alliterations, “disabled dynamo,” “weird woman” and “eclectic” something. Whatever.

I was elated because that was the second time I managed to write about something so personal within the limits of a word count and a deadline. The college essay had to be under 650 words, and that New York Times essay was 459 words— less than a tenth of what I usually wrote.

Maybe I could be compact.

Shortly after submitting my college essays, I deleted the hundreds of notes on my Notes App and scrapped the backlog of 20+ manuscripts that had accumulated on Google Docs. I wanted to see if I could convey my disability in a single Instagram highlight. I opened Canva.

I felt a calm wash over me.

“Remember,” said Kristen. “Those labels are an argument. So when I put autism on your paper, I am making a case to justify why you need resources from the government. It doesn’t have to mean anything else.”

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