12. It Depends
Welcome to CHAPTER TWELVE of #TechnicallyAutistic: Lessons from the Periphery, where I talk about my experience with medication.
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When Dr. Roberts* bumped up my dose of Zealon* during my sophomore year of college, I had low expectations. But it made a huge difference.
Up until then, most of my formal education happened outside the classroom—when I reviewed my notes at home, Googled missing details, and made Quizlets. There were a lot of missing details that I didn’t even realize. And though I’d always enjoyed participating in classroom discussions, my input consisted of philosophical or ethical questions, or loosely related headlines I’d skimmed on Instagram. With more Zealon in my system, something shifted. I started to understand things the first time they were explained, and if I didn’t, it eventually clicked as I continued to take notes.
I knew that meds weren’t going to fix everything. Reading, for example, still required tremendous effort — I used a text-to-speech software while following along with my eyes, and hitting “pause” every other sentence to make sure I understood.
But I had more stamina. I would read a book, get tired, take a break, and then dive back in. I also had the energy to socialize for longer. I had the energy to socialize (I was now able to make small talk with fewer long pauses, though a lot of that was due to gaining more experience). For me, this was a big change. I even wrote a blog post about it.
But then came the side effects.
Zealon switched on my mind, but didn’t allow me to switch off my mind. It was helpful when I had a lot of schoolwork and not much else going on. But once I started having arguments with my friends, I became panicky. I couldn’t stop seeking reassurance, wasting time arguing with myself, and being annoying.
On the highest dose, I felt sick. Imagine being in a hot car, parched with your morning coffee still on your breath, cramming your homework while someone drives you. That was how I felt on a regular basis. My vision was unsteady, making it difficult to read from a board, and I felt a dull, but constant pressure in my head. I didn’t even realize that these were side effects, even though I felt it hit when I took the pills. I couldn’t let myself think about it, because I couldn’t afford to fall behind in class or miss out on social interactions.
The summer before my junior year, I started to see a new cardiologist. My dad switched me, and I don’t remember the reason. But I remember asking him if it was okay to continue taking Zealon, worried that he might say no, and being surprised by his response.
“My ADHD is completely debilitating,” I told him.
"Zealon… Isn’t that an antidepressant?” he asked.
“Well, I know that I shouldn’t be on stimulants—”
“You can be on stimulants if your psychiatrist thinks you need it. As long as your heart rate and blood pressure stays within range, I’m not worried.”
I did my research. Stimulants considered by many experts to be the most effective way to treat ADHD. Adderall and Ritalin are examples of a stimulant. A quick Google search showed that stimulants can raise blood pressure and heart rate (anywhere between 1-6 points), but the scariest tales had to do with people misusing it—taking more than they were prescribed or using it to stay up all night. Zealon had already increased my heart rate and blood pressure and to boot, it was making me anxious. Just like caffeine.
The bureaucracy of obtaining Cognisync*, the stimulant medication that irrefutably changed my life was a hassle. I showed Dr. Roberts the letter from my cardiologist saying that I could be on a stimulant so long as my blood pressure didn’t exceed 120/80 (my average blood pressure at the time 100 and 60 something), but she said she wasn’t comfortable. I had to stop seeing her due to an insurance change anyway, so I got in with an online clinic.
“So you’re saying that you have trouble focusing on your work, getting your work done,” said the nurse practitioner, Stacy,* in an empathetic tone.
Looking at my chart, she furrowed her brows. “Zealon isn’t for ADHD. You’ll do much better on stimulants.”
She said it with a slightly dismissive but warm Brooklyn accent, reminding me of my third-grade classmate’s mom who chaperoned a field trip. (“That’s garbage,” she said, looking at the flimsy bracelet I picked up. “Do you like this one?” she asked, pointing to a sturdier bracelet I was holding. She knew I did. “Don’t worry, I’ll buy it for you.”)
“But it can increase anxiety, so we have to be careful.”
I nodded vigorously. “Which one has the least cardiovascular effects?”
“They’re all the same, but I definitely need an EKG from you first.”
I relayed this to my dad. I needed him to drive me to my cardiologist’s office.
“I know you’re desperate right now. Let’s talk when you finish your schoolwork,” he said, referring to the leftover assignments from winter break. He didn’t know that this was the third semester I’d had an incomplete.
The EKG came back fine, so I sent it to the psychiatry clinic. I didn’t get a prescription, I called the front office and was told I needed to see my provider, so I scheduled another appointment with Stacey.
“You need to come in. I need to see you in-person because it’s your first time,” she said.
“Oh my God, I had no idea. I’m so sorry. I’m four hours away, I don’t think I can.“
"Here’s what we can do: Do you have a primary care doctor? I can send her a memo saying I’m good with you taking Cognisync, and then she can write the prescription."
When I saw my primary care doctor, she handed me a paper prescription, explaining that since she wasn’t a psychiatrist, she couldn’t call in a digital prescription. I brought the prescription to CVS, and three hours later, they called me. I was excited. But they told me insurance didn’t cover it, and that I had to pay over $300 out-of-pocket unless I got prior authorization.
I helf my brrathe as I texted my primary care doctor, hoping she’ll say all the right things to convince insurance that I needed this medication. Cognisync was the one my cardiologist mentioned in passing, and the only one my dad reluctantly agreed to have me on. After two excruciating weeks, we won.
The first day I took Cognisync, I was surprised at how mind-bloggingly easy it was to read. It was mental agility I’d experienced occasionally on Zealon, but without all the awful side effects. Soon, I noticed that I was absorbing much more than just words on a screen.
For the first time, I experienced the world in a continuous flow. When I went to the cafeteria, I didn’t hear people chatting in line, hear Taylor Swift’s Anti-Hero, and found myself smiling awkwardly as I realized they didn’t have the candied yams I wanted.
Instead, I overheard someone say they were running out of candied yams “soon-ish”, heard the lines “Sometimes it feels like everybody is a sexy baby/And I'm a monster on the hill/Too big to hang out, slowly lurching toward your favorite city/Pierced through the heart, but never killed,” saw the worker take the steel box at the corner of my eye, and decided to leave because I didn’t want anything else from there.
For once, I experienced the world in a continuous flow.
When I went back to my dorm and wiped the bathroom counter, I glanced at the toiletries’ packaging and felt a familiar “click”—the same click that used to only come after I’d read a sentence over and over. I got bored so I challenged myself to remember the exact string of words: Softsoap Soothing Clean Aloe Vera Fresh Scent, Glade Exotic Tropical Blossoms, Fabuloso Bleach Alternative. How could reading be so… easy? I used to find it hard to believe that people read packaging out of boredom, let alone while using the bathroom, but now I understood.
Over the next few months, I noticed that I was becoming more verbal in my thinking. When I read news articles for class, I would spontaneously start talking myself in my head, like "That article uses interviews as an anecdotal device, while this one uses interviews to relay data from a specific source," whereas before, I just felt that the articles were different, and then typed up a bunch of incomplete sentences that required constant rearrangement.
When I analyzed other people, my thoughts often remained wordless—a sort of a “just felt like it”—while I became increasingly verbal in recalling the actual content of the conversation (i.e., weekend plans). I found myself texting less, and when I did, I wasn’t as annoying about it. It was threefold: I stopped feeling antsy, I felt more confident in my ability to articulate myself in real-time, and when I started to read for more than five minutes at a stretch, I quickly discovered that “I was so busy and forgot to reply” was a realistic scenario and not just a polite way to say “Get lost.”
Something interesting I noticed was that for how much I was talking, I wasn’t talking over other people that much. It wasn’t like I’d suddenly noticed new social cues that I didn’t see before. It all came down to the fact that I was speaking more clearly.
Until then, talking felt like trying to read a teleprompter that was still being edited, my jaws tensing as the words shifted around unpredictably. I was barely audible as I breathed deeply enough to carry a consonant but not a full vowel and pursed my lips after each word. Now, I was louder and faster—but not startlingly so—since I could also relax my face and inhale before I spoke. After twenty-one years, they also gave me a turn signal, so that I can let everyone know that I was about to speak.
Before I started Cognisync, it felt like my body was trying to close itself off. Changing my tone or my expressions felt like dragging a clogged pen across paper, and when I wasn’t doing anything, considerable effort went into holding my posture and gaze steady. (One day in sixth grade, my mom told me I should act more “natural,” when she noticed that I was sticking up my nose and flipping my hair while waiting for her to pick me up. Looking back, I was battling an overwhelming urge to glance at anyone who moved behind me. My nonchalant demeanor was my way of keeping myself occupied)
The newfound continuity in my movements mirrored the continuity of my external world. When I spotted someone I knew on my way to class, I no longer felt the need to hide behind my phone or jumpscare them by intruding on their friends’ personal spaces; calling out “Hi” from a distance felt automatic, instead of a multi-step process of unlocking my muscle.
I no longer had flat facial expressions, something I’d been told was a feature of my autism and an intrinsic, fundamental part of how I interacted with the world. I knew I didn’t have to look “typical” and wasn’t going to, but it was a relief to see my emotions and outward appearance align more closely.
In conversations, my face morphed automatically like a mood ring, which probably had a hand in making my head quieter, freeing up the energy that was used to say something, damnit. I felt more present as I no longer had to see the startled faces of my classmates when I erupted in a strained voice after seemingly showing no interest in their group conversation or hear the shame in my friend’s voice as they were telling me a personal story and I alternated between vigorous nodding and uh huh.
The day after I started Cognisync, I cried because someone reached out to me after not speaking to me in ages. Three days later, I cried because I was proud of my friend for getting on the Dean’s List after an incredibly rough semester. What was happening to me?
I was never a stoic—the last two times I cried, I did so in public, in the Arts building, once in the stairwell, and once in the middle of my journalism class. But there were countless moments before when I felt like I should cry but couldn’t. And I had no idea what it meant to be moved to tears until that week.
There are many things in my book where I don't know if it's the chicken or the egg, and this is one of these things. All I know is that I felt less anxious, and as my anxiety grew smaller, and my other feelings grew bigger.
It was the calmest I’ve felt, my whole life. I was still having anxiety attacks pretty regularly, though; at least once a week. I spoke with a psychiatrist and decided to add another medication, a non-stimulant used to treat ADHD, and taper down on Lomelix* since it hadn’t helped that much. The panic attacks dwindled, and I felt my emotional range expand.
Before taking medication for ADHD, my emotional skin was perpetually raw; hyper-sensitive, scalding, with my nerve endings exposed. And yet, these nerves seemed shallow and ever so distant from the heart.
The startle response I got when I heard another person’s disapproving tone told me that I would get hurt if they kept talking. The scorching, want-to-crawl-into-a-hole embarrassment from seeing my old, unhinged texts told me that I did something I shouldn’t have, that I was guilty. The sinking feeling I had when I braced for a dreaded outcome told me that I had something to lose. And yet, despite these intense sensations, firsthand experiences of hurt, guilt, or loss were fleeting and rare.
Many emotions were like distant acquaintances you hear about constantly from your best friend; you think of them more as characters in a story than actual people in your life, even though they are actual people, and they are in your life.
You could say anxiety was my toxic, possessive BFF because she made sure I never saw my other emotions or tried to pit them against me. Whether I tried to face my fears or escape them, a brutal showdown was always waiting. If I knew I needed to cry to get release, the only way to get there was to seek reassurance and work myself into a panic attack, or try to explain my predicament to someone slow to understand. Even then, I sometimes felt like I cried of exasperation more than I cried of hurt or guilt or loss.
Crying for myself was hard, and crying for other people was even harder. Though I always knew right from wrong and strived to treat others the way I wanted to be treated, I felt like I lacked emotional depth. I needed intense stimulation, like music videos with dramatically orchestrated flashbacks and movies with sappy dialogue (think: the ending of Titanic)—to experience the same degree of sympathy that other people seemed to naturally feel when their loved ones were having a hard time. As far as real-life situations went, the closest I came was the fierce protectiveness I sometimes felt for a friend with a similar disability or someone I had a crush on.
Once I got on medication for ADHD, my emotions started to balance out. It was like a second puberty: my moods were volatile at first, but gave way to acceptance, as I got to sit with everthing instead of always running.
People have their opinions and some very understandable concerns about fucking around with synthetic chemicals, but for me, these changes told me that I was finally on an actual treatment plan, tailored to my needs—not just a way to numb me into oblivion.
Low empathy isn’t a default for most people with unmedicated ADHD, nor is it a common symptom (And if you’re thinking about taking anything you’re not prescribed for just so that you can “feel something,” please, please don’t do that. This can go wrong in so many different ways). I was also on too much SSRI, which can dull emotions for anyone and make ADHD symptoms worse if you have that.
Humans, regardless of disability, are remarkably diverse in how they cope with big feelings. Take grief, for example; some people cry, and other people become numb. For me, the constant head chatter was so overwhelming that despite years of therapy, I couldn’t properly process emotions.
People have their opinions and some very understandable concerns about fucking around with synthetic chemicals, but for me, these changes told me that I was finally on an actual treatment plan—not just a way to numb me into oblivion.
Every time I get my eyeglasses updated, I have a mini-crisis, because I realize what humans can see and wonder if the kid sitting behind me has read my embarrassing texts on my laptop and if the professor noticed the weird faces I was making at the back of the classroom. Getting my meds adjusted also gave me a similar sense of perturbing clarity.
As I became more familiar with my own emotional range and more immersed with other people’s, their words registering more vividly in my mind, the concept of emotional labor moved to the fore. I realized, for example, that my excessive complaining wasn’t just inconveniences; my guilt trips—though never calculated—could make someone feel bad about themselves, and my pessimism could be genuinely triggering.
I didn’t realize it then, but I was starting to feel depressed myself. For the first time in my life, I had the attention span to finish what I started, but getting started still felt impossible. I fell into the habit of spending hours on my phone in my bed when I woke up, and skipping meals to catch up on homework.
I still haven’t told many people how horrifying my eating habits were at one point. I was cold all the time, and my joints would sometimes crack. One day, I took an exam where I had to write a mock article about a school shooting. After the exam, I went up to the professor and mentioned that I didn’t realize there was an actual shooting, which was completely out of character for me. Not even three days later, I ended up in the ER from the most excruciating period cramps I’d ever experienced in my whole life.
I wasn’t on the brink of death, but who knows? The under-eating was taking a serious toll on me. It was scary. That was when I knew I needed to change my habits: not tomorrow, not next week, not next month, but now. And I did (though I had several near slips along the way).
My medication helped me be compact, and I liked it, though not in a physical sense—I never cared about making myself small in that way. I was more efficient at expressing myself, at explaining myself, and most importantly, I had less to explain. I could roll with the punches.
For the first time, everything felt manageable. I was ready to advertise myself as someone whose disability-related challenges were merely superfical: “Just give me a chance, and I’ll do things just like everyone else.”
In one of the many interactions that confirmed to me my long-standing social struggles weren’t because of a “hidden curriculum” (as one therapist put it) that I wasn’t privy to—but rather, practical skills—I made small talk with a cashier at Target for the first time. When she mentioned that her daughter loves the apple cinnamon body spray I was checking it out, I didn’t just nod and smile. I told her that it was my first time using it, that I was buying it to use as a room spray (because let’s be real, Febreze is expensive aerosol), and that now I had a surprise to kick-start my self-care weekend. I couldn’t believe how quickly my mind was able to recall these details.
For the first time, everything felt manageable. I was ready to advertise myself as someone whose disability-related challenges were merely superficial: “Just give me a chance, and I’ll do things just like everyone else.” I was a pillar of stability and a ray of sunshine under my addled movement. I wasn’t, but what’s a little faking it until I make it? I’d already done that with school, all these years.
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