What My Adult Autism Diagnosis Finally Explained
Length: • 23 mins
Annotated by Mark Isero
Mark Isero: 1. How did Mary H.K. Choi's adult autism diagnosis change her perspective on her past interactions and relationships, especially with her father and husband? 2. In what ways did Mary H.K. Choi struggle with self-acceptance and impostor syndrome regarding her autism diagnosis, and how did this impact her sense of identity and belonging? 3. How did the diagnosis of autism influence Mary H.K. Choi's understanding of her behavior, emotions, and social interactions, and how did it shape her future outlook and relationships, particularly with her husband Sam? Background: How can I improve my ability to work effectively with students and peers? 🌟 Empathy and understanding are crucial in building strong relationships with students and peers. Take the time to listen actively and try to see things from their perspective. This can help create a more supportive and collaborative environment. ⭐ Communication is key in working with students and peers. Be clear, concise, and considerate in your interactions. Encourage open dialogue and provide opportunities for feedback to ensure mutual understanding and alignment. 🌟 Flexibility and adaptability are essential when working with students and peers. Recognize that everyone has different strengths, challenges, and needs. Be willing to adjust your approach and support strategies to accommodate individual differences and promote inclusivity. Q: What factors contribute to the increase in self-diagnosis of autism in adults? A: Factors contributing to the increase in self-diagnosis of autism in adults include the lack of data on autistic adults, limited access to experienced clinicians, delays in insurance approvals, and the behavioral nature of autism diagnosis without clear biological indicators. Additionally, societal trends like online platforms and heightened self-awareness may also be influencing this rise in self-diagnosis.
Six years ago, my now-husband, Sam, asked my father if he could marry me. They sat in my dad’s Volvo in my parents’ driveway in San Antonio, Texas. It was raining. With Sam, my father would offer wisdom that was far more demonstrative and thoughtful than any insights he had ever shared with me. And even as I understood that transitive properties were at work and that my father loved Sam for loving me, I felt there was a closeness between them that I would never know.
My father was a workaholic. Quick to anger. By the time my husband came along, he’d softened. He’d become gentle. He laughed easily. He’d started indulging in that old-man habit of incessantly humming. The first time he met Sam, he hugged him. I was appalled. This was a man who shook my hand in greeting even after months of separation as though I were a business associate whose presence he merely endured.
In the car, my father told Sam how happy he had made him. He said that Sam and I would build our lives brick by brick with intention and love and that we had all the time in the world because we were not beholden to anyone’s happiness but our own.
As they got out, my father stopped Sam before they returned to the house. He held out a business card in both hands to denote respect, honor, mutual care. “Just so you know,” he warned, “she has a difficult character. Please give me a call if there are any issues.”
“She who? Me?” I’d cackled later when Sam gave me the lowdown. “So, what, he’s giving you a manufacturer’s warranty? Who does he think he is, AppleCare?”
“Can you imagine if I actually called him?” my husband has since mused at various points in our marriage. “And how you would react?”
Sam and I have been together for nine years now. We are, by many measures, extremely compatible. Neither of us wants children. We are both sensitive, prone to anxiety, and firmly encamped on the side of those who arrive at the airport stupidly early. Once, on vacation in a popular beachside town, I turned to him on the third day and was thrilled to discover that he was also having a miserable time.
In other words, neither of us is particularly easy. There is a solemnity to how we view the world. He is a composer, and I am a writer. Our work is by nature solitary and time-consuming, governed by the caprices of our respective muses. During lockdown, we began working from adjacent rooms in our New York apartment. Anyone spying on us from the building across the street would have found us each equally absorbed at our desks. Seemingly content.
But according to Sam, there was a tone to our separateness that was disquieting. A year into the pandemic, he began to point out that, for several months straight, I’d refused every entreaty for a stroll or a lunch out on a sunny day, even when I wasn’t on deadline. He couldn’t pinpoint it exactly, he said, but it felt as though I were avoiding him.
I’d shrug. Call it bad timing. Workaholism on my part. His, too, if we were being frank. I confessed that most days I simply forgot he existed. It was understandable if unflattering to hear. What I didn’t admit was that I was lying. Often, I’d find myself listening through the wall for his movements, emerging for the bathroom or a snack only when I knew I wouldn’t run into him.
Still, we both reasoned that I had a propensity for withholding affection. Or we concluded that, possibly, I was punishing him for something. After all, there were plenty of other dynamics in our relationship that fell under the scope of my being self-absorbed, absent, or vindictive. Whenever Sam left for a trip, for example, by the fourth day I’d become taciturn in calls, elusive on text. After more than a week away, he would come home starving to an empty house despite loose plans to eat together and my purported excitement at his return. For days, I would remain in my office long after dark, and any time we’d convene in the kitchen, I’d speak to him in what he calls my “customer-service voice,” a distant, officious vocal register. He said the lack of recognition when he looked in my eyes was vast. Chilling. A blankness that was complete. As though in his short absence, any evidence of our shared life had vanished.
In loud, hissing fights, I’d dismiss his accusations, arguing that whatever pageantry he expected at his arrival was outsize entitlement. Categorically male. My life had continued while he was gone. So what? I claimed he would have been happy only if I’d remained stuck in some codependent, suspended sleep state only to reanimate when he came back with just enough time to make him a chicken. Sam called it gaslighting. I called Sam calling it gaslighting gaslighting.
It was only logical to believe that I was being passive-aggressive. That I privately resented his departures but wouldn’t admit such a weakness. Except it wasn’t animus I felt; it was confusion. In the days before Sam’s return, there was always anticipation. I had stories, gossip, and observations to share; treats bought especially for him; plans I wanted to make. But when finally faced with the material fact of him, I’d feel somehow duped. This Sam was clearly a decoy, and I couldn’t stop looking behind him for the real one, the Sam from before, the Sam I understood to still be away.
Then, always, I would come to know him again. After a few more days, Sam could see me flip, and he’d explain the immediacy in exactly this way — a light switch. The warmth would return to my eyes, the timbre of my voice lighten. We eventually learned to make a joke about it. “Oh, you’re back!” he’d say, happy and relieved. “There you are!” I’d counter, apologizing, genuinely chagrined. I would then launch into everything he’d missed, chatty and delighted, dreading his next trip, when I’d unfailingly do it again.
In couples therapy, Sam said it was the cycle of apologies that convinced him he was in an abusive relationship. I couldn’t disagree with him. I was wrung out too.
The common denominator had to be me. Because it wasn’t just my marriage; I was flummoxed by the vagaries of most human interaction. Each one confounded me in its own way. I had yet to successfully hold down a job that required “teams,” which is to say, most jobs. I was “bad at Christmas,” prone to meltdowns and manufactured crises whenever special occasions loomed. Terrible at gatherings, I was capable of making even the most low-stakes kick back spectacularly un-fun.
Early in our relationship, at a pasta dinner with Sam’s family, each of us was given a noodle to gauge doneness. It was a matter of personal preference. Sam and his mother inclined toward al dente, while his sister and nephew erred on the side of mush. I chewed urgently, overwhelmed by performance anxiety, praying for a knowing that never came. I abruptly announced that I hated pasta and ate the sauce with bread.
At another dinner, a friend’s housewarming, I was instructed to bring something sweet. I visited two bakeries and several specialty stores, waffling grievously, overspending, eventually loathing what I’d brought (middling berries, underripe persimmon, an intimidating cake) and wanting to pitch everything in the trash. I was distracted and prickly about it in conversation all evening. Another friend, tasked with the same request, had an assortment of Levain cookies delivered during our meal. It was perfect. Insouciant.
Intellectually, I had always known that this was my undoing: the sweaty, white-knuckled lack of chill. As with Sam on the other side of the office wall, everything felt confrontational and fraught, and I was sure it was my fault. For any request, I’d want to ask 20, 30 follow-up questions just to not feel set up, put on the spot, thwarted. I wouldn’t ask the questions, but they’d be there. Hanging.
I wanted to know how to be breezy. To meet someone for a drink but order food because I’d missed lunch. To free myself of this habit of rehearsing conversations in advance only to be disappointed when none of my prepared talking points naturally arose. To pee when I wanted to, not when the other person did. No matter where I was, it seemed I was doomed to always feel as though I were in the window seat on a flight, prodding apologetically, mincing and smiling for the person in the aisle to get up.
And in the same way that I missed Sam but also didn’t want him around, I loved my friends but didn’t particularly want to spend time with them. I couldn’t stand the gnawing suspicion that everyone was humoring me. Or mad at me. Or shooting one another knowing looks because I was overstaying my welcome or not staying long enough. I reasoned that this was why I had friends but was never invited to their weddings. By my late 30s, I’d concluded I was simply bad at people. I was also indescribably lonely.
On May 24, 2023, at age 43, I was diagnosed with autism spectrum disorder. I sought assessment on the heels of an exasperated parting shot from Sam as he left the apartment mid-fight. Before he turned away, he said to me in a half-joke, “Jesus, I swear you’re autistic or have a personality disorder,” then shut the door.
I didn’t feel peevish triumph at how obviously mean he was being, which was very unlike me. What I remember most is the sinking sensation that accompanies unwelcome recognition. So in the weeks after the fight, I took to TikTok. Then Reddit. I binged on whatever the algorithm increasingly understood would privilege a confirmation bias to keep me engaged: autism memes (“POV: You’re Autistic and You’re Multitasking ...” Or “Autism in Adult Women May Look Like ...”).
Within the month, I’d made an appointment at the Sachs Center, a “full-service boutique psychotherapy practice.” I had found it deep within the bowels of Autism Reddit and was duly unsure of its reputation, but after 40-plus years, I was impatient. Ready to throw money at the problem. I elected to be tested for both ASD and ADHD despite having already been diagnosed with ADHD three years earlier by my psychiatrist (who, for the record, helped eliminate Sam’s other accusation of my having a personality disorder). Assessment was $695 for one and $795 for both, and I never could resist a bundle.
The ASD evaluation, conducted over Zoom, consisted of four psychometric tests — questionnaires that screened for both autistic traits and the propensity to hide them. That was followed by a 75-minute interview, a sprawling conversation covering everything from my childhood to my lifelong fixation on snacks. The whole thing took less than three hours. Later that day, a form letter arrived. A PDF. Made out to someone named Amanda.
I felt bamboozled. And wholly deserving. This is what you get when you buy shit off the internet, I thought. But the psychologist swiftly corrected the typo and assured me that I’d scored well within the range of a person with ASD across all the tests. My assessment placed me as ASD level one, or requiring the least amount of support, according to the DSM-5. (This is the designation that many but not all of those formerly diagnosed with Asperger’s now fall under.) I’d always been highly sensitive to certain sounds, lighting, smells, and textures, and it was concluded in my interview that these sensory issues were attributable to ASD as well.
I told Sam, but in the following weeks, I debated whether to tell anyone else. I’d long suspected something was “off,” but now that I had the paperwork to prove it, I didn’t think anyone would believe me. It would be hard to reconcile the optics of my life with Dustin Hoffman in Rain Man, Extraordinary Attorney Woo, prospective couples in Love on the Spectrum, nonverbal children, or most of the movie characters played by the marvelous Barry Keoghan. I didn’t have severe intellectual disabilities or a photographic memory. Never mind making eye contact, I’d had a previous career that entailed interviewing celebrities on-camera, sometimes for live events. I didn’t know how I would defend myself in cross-examination if anyone pointed to the jobs I’ve had: a culture correspondent for TV and magazines, then a New York Times best-selling author, a career that required extensive touring and public speaking.
And even if I was officially autistic, was I autistic enough for it to matter? And what did that mean? I’d grappled with impostor syndrome at various points in my life, and the nightmare scenario I kept returning to was that I might tell a colleague or acquaintance that I was autistic only to have them reveal that they had a severely autistic child. I found this prospect mortifying beyond redemption. I was convinced they would rightfully feel that my comparative claim to autism was so marginal as to be deceptive. Did I just, in some grotesque display of privilege, pay hundreds of dollars for a doctor’s note that would excuse me from the social mores by which humans in a functioning society were expected to abide? I refused to be an apex asshole of weaponized therapyspeak, a Coastal Elite victim of the self-care-industrial complex. And yet ... And yet.
Perhaps you’ve sensed autism Zeitgeisting, the way pants are getting bigger or how raw milk appears to be a thing. As of 2020, according to the CDC, one out of 36 8-year-old children has autism — a significant jump from one in 44 in 2018.
The obvious question is whether there are more people with ASD or if we’re counting differently. Honestly, clinicians don’t know, but it’s clear that better detection is a factor. It used to be that children were diagnosed when they were around 8 years old; now, a child can be reliably diagnosed at 2 or 3. Traditionally, autism was also the domain of white kids, specifically boys, who were thought to be more visibly disruptive and easier to diagnose. But the CDC’s recent count indicates a rise in Black, Hispanic, and Asian or Pacific Islander children with ASD too.
Because autism has historically been categorized as a developmental disorder, with research and awareness focused on children, there isn’t much data around autistic adults. In 2017, the CDC published a study citing nearly 5.4 million adults in the U.S. with ASD, but this number is an estimate. The lack of data and the dearth of experienced clinicians, as well as protracted lead times for insurance approvals for those unable to pay out of pocket, may explain why self-diagnosis seems to be exploding online. In a 2023 study, researchers at Drexel University reported that on TikTok, “videos associated with the ‘#Autism’ hashtag accrued 11.5 billion views collectively.” The study classified only 27 percent of the top 133 videos as “accurate.” Many fear that as more individuals self-diagnose, some inaccurately, the diagnosis will lose credibility. Or that if everyone is neurodivergent, it would follow that no one is neurodivergent — which might make it more difficult for those who desperately need accommodations to obtain them.
Even with fears of false positives, experts and advocates believe that many adults with ASD are going undiagnosed. Autism hinges on a behavioral diagnosis: There is no stick to pee on, no blood test, no single biological indicator that quickly and irrefutably unifies everyone who has ASD and also separates them from the people who don’t. It’s a fallible assessment that’s susceptible to social and environmental factors like time or money or even biases on the part of the clinician conducting the tests. Adults with ASD are more likely to skirt detection through a lifetime of deliberately or subconsciously suppressing autistic traits, and women especially are believed to better mask or camouflage behavior owing to heightened sensitivity and the ability to mirror social cues. Studies have found that women are more likely to be misdiagnosed with anxiety or mood disorders before arriving at ASD. When it comes to autism diagnoses, red herrings abound.
The ASD diagnosis didn’t not make sense, but by that point in my life, I’d already landed on a tidy narrative that explained my perpetual strangeness with others, my constant beleaguerment in social situations. After all, mine is a classic tale of immigration and assimilation with a few asterisks for variety.
I was born in Korea and, at age 1, moved to Hong Kong, then a British colony. At home with my parents, or at church among the Korean Catholic community that has always been the nexus of their social structure, I spoke Korean but mostly stayed silent. (The adults were talking. Mostly to dissect my body, my hair, my grades, my face with great enthusiasm and concern.) At my British school, where I wore a uniform and tie embroidered with (no joke) griffins and spoke English, I clung to walls and befriended other misfits. Mostly short boys. If you picture us in our uniforms, I am the husky Asian girl with greasy hair standing a foot taller than her cronies.
Third-culture kids watch, and I watched, cataloguing rules and how they morphed by circumstance. In the world of my parents and church, we adhered to the tenets of noonchi, an awareness based on your proximal social standing, gained through reading the room and knowing your place. It encourages observation. Playing your position. It prizes deference if you’re lower in the pecking order. In Korean culture, when being scolded or rebuked or even addressed by a superior, direct eye contact is a sign of impertinence. But at school, a premium was placed on “Look at me when I’m talking to you.” It didn’t matter what the rule was or whether it made sense; it all had to be recorded and practiced faithfully in the correct circumstance. Even if it meant feeling like I was on fire while staring into some British teacher’s eyes as she upbraided me for lacking “common sense.”
The whiplash was constant, the code-switching dizzying. I was besieged by a conviction that I was always in trouble, a pervasive dread that I would never instinctively know how anything worked, so I would have to memorize it. Except with Korean church folk, my parents were private, mistrustful, and didn’t like drawing attention to themselves. They didn’t speak English, so I became adept at forging my mother’s signature on dispatches from school and never told them about parent-teacher conferences. I couldn’t bear exposing them to potentially patronizing situations that I would then have to translate. To save their faces as well as mine, I had to learn the rules and learn them well.
Then, when I was 14, my family moved to a suburb of San Antonio. Completely different rules. In Hong Kong, we’d been expats cloistered amid other émigrés living in a provisional territory; in the American South, where our foreignness was felt more acutely, we were reduced to being simply Asian. My mother, who ran a Korean restaurant in Hong Kong, eventually opened a sushi restaurant because that was more legible to our town. During this time, my father traveled back and forth between Texas and Hong Kong for work, and there were times when he’d return home after months away only to close the door to his office. He was moody. Shouty. Seemingly dislocated and disinterested in us. We mostly left each other alone.
On the first day of sophomore year, when I was one in a handful of Asian kids in a school of 4,000, I wore vintage velvet trousers and a thin blouse with clogs. It’s what I would have worn in Hong Kong. On day two, I ditched them for a logo tee and nondescript jeans. I’d also gotten rid of my British accent: In those 48 hours, I’d learned to draw out my diphthongs until the vowels were untraceable, my elocution expunged of metadata. My brother, one year older, wasn’t as deft a sellout. I kept my eyes down at school when my classmates asked why the other new Asian kid spoke like such a snob.
I moved to New York at 22. As an adult, I began reading personal essays by Asian Americans who’d been singled out for toting smelly lunches to cafeterias peopled by milk-slugging tweens who subsisted on bologna. Or articles about tiger moms and han, a particularly Korean cultural phenomenon that centers on ineffable anguish and rage resulting from repeated hostile occupation and invasion.
Minimally, I thought I had become genre aware — that I knew the story I was in. It was identifiable, comforting to subscribe to. I belonged to a definitive other, and my issues must have been grounded in code-switching glitches from a lifetime of toggling among the appropriate roles. I developed a jokey litmus test for my pathological people-pleasing, my instincts to use other people as mirrors and to weaponize their perceptions to keep myself in line: Collectivism or mental illness?
But even in New York, the place where I believed I would forge my own identity and begin my real life, I couldn’t shake this compulsion to keep preparing. Practicing. Stockpiling information about other people’s behavior like cookies on a browser. In time, I developed systems to make it through any scenario. Mental folders filled with scripts, permutations of outcomes, things I’d observed friends and colleagues and strangers do. These were for absolutely every occasion and person in my life.
At an event with passed hors d’oeuvre, if I observed a friend ask another guest only two questions in conversation, I would explicitly do the same, whether or not personal curiosity or genuine rapport called for a third. If another friend and I took a bathroom break at the same time (horror) and they gave their hands a desultory little shake upon washing, I’d mimic them. The importance of remaining in lockstep outweighed how badly I loathed the sensation of wet hands. For anyone who’d ever been to my house for dinner, I’d devote great mental resources to remembering what they ate, how much, and what part of the salad they left on their plate. The next time they’d come over, I’d be preoccupied all evening with identifying the exact right moment to mention their dislike of tomatoes. (Meanwhile, I wouldn’t find out until the next day that I’d neglected to remember my own dentist appointment before that dinner.)
It wasn’t just with people I knew. I’d memorize the habits and reactions of even virtual strangers the way I once memorized vocabulary for standardized tests. I’d do this obsessively, hoarding a broad-enough dataset on which to model my behaviors in the hopes that one day, with enough muscle memory, it would feel natural to me. And the refrain that most haunted my thoughts while spying on others, studying them for the secrets to their nonchalant interactions, was Good God, how do I stop living like this? And how do other people just know what’s allowed?
For years, I sought out booze, weed, sugar, binge eating, caffeine, other people (especially of the unavailable, intense variety) — anything to distract me from the purgatorial torment of my efforts. It was reassuring, even thrilling, to be directly responsible for the pain and shame, even as the substances heightened the sense of peril, the mania, the self-centered paranoia. But by my 40s, I’d found 12-step, meditation, medication, several modalities of therapy, and heroic doses of psilocybin under the care of trauma therapists. I learned more about the nature of addiction as well as how to navigate a whole array of other issues I was tackling — CPTSD, ADHD, ED (eating disorder, not the other one), workaholism, dissociative tendencies, rage, a history of sexual assault, and racial trauma.
Still, I was mystified by this niggling, needling conviction that, in all this self-interrogation, I’d missed something. That one day someone would publicly point out some glaring defect of mine that had been obvious to everyone all along. And that I was the one in the dark.
There’s a saying in the rooms of Alcoholics Anonymous — “Let go and let God.” But I rather prefer a different version: “Let go or get dragged.” My autism diagnosis offered a salvation; if I could surrender, I would be delivered. I could finally get some peace.
ASD is a spectrum, but there is often a presumption that the spectrum is a linear gradient from mild to severe. In fact, the disorder is not a spectrum but spectra, a solar system of sprawling constellations in 3-D that differs from one person to the next. Within autistic communities, they say, “If you’ve met one person with ASD, you’ve met one person with ASD.”
There is, in other words, no way to autism correctly. No gold-standard autistic against whom I could compare myself and be certain. And no matter how obviously autistic I was or wasn’t, I could never have forensic proof that anything I did or didn’t do could be attributed solely to ASD over any of the other acronyms and issues I possessed. I would never find a clear demarcation between where the autism ended and where the rest of me began. Ultimately, it was a jury of one.
There were things about me that I’d always known but, after the diagnosis, began to see in a different light. If I had an important lunch meeting, I would worry about being on time, impressing new people while chewing, all the usual foibles. And if the restaurant was open-format, the background music loud, and someone at my table was wearing perfume, I’d be able to get through the meal but would be leveled with flu-like symptoms when I got home. The outlay on my nervous system would be disproportionate. I would feel hung-over for days: snapping at my husband, unable to focus on my work. I grew to understand that things I didn’t like were actually debilitating.
Many people with ASD struggle with sensory processing, and it was knowing I was autistic that allowed me to buy earplugs for when there would be background noise. And to actually use them. It was shocking how much that helped. Overhead lights are as obstructive to my ability to focus as a persistent but irregular clanging sound, so I let myself go full Scandi and bought table lamps, changed all the bulbs to lambent lumens, and put them on the floor.
Some fixes revealed themselves quickly. Others required more trial and error. For most of my adult life, I dressed with great, highly strung care. But even when I put an outfit together, I’d sometimes leave whatever occasion early to take it off or not go to the event altogether because I knew I’d be uncomfortable. People with autism are known to have issues with textures, tags, and seams, and I began wearing a tissue-thin, very soft turtleneck or an undershirt as a barrier to textiles that I found objectionable. Turns out there are also silhouettes I adore aesthetically that I cannot abide proprioceptively. Any trench-coat-length garment that tugs when I sit. Poplin. Too-full skirts that create a sense of vagueness behind me. Brocade. Stiff jeans. Leg-of-mutton sleeves that bunch at my armpits. Accepting this took more self-persuasion, but once I did, I ransacked my style archive and parted ways with half of my wardrobe.
I then considered eye contact. Looking away from Korean elders. Looking directly at white teachers. If it weren’t for the effort spent in memorizing the rules, I wonder if I would have known how much I disliked the entire enterprise. Eye contact has always felt invasive to me, akin to sticking my fingers in another person’s mouth and having them put theirs in mine as a form of greeting. Just because I could do it didn’t mean I always had to.
ASD and ADHD often co-occur, and while I discovered that they affect me in different ways, sometimes individually or sometimes in concert, I stopped trying to parse what’s what. Put on the spot, my mind goes blank when pressed to make a choice based on my own preferences. This tendency could be an ADHD thing: the issues with working memory and prioritization. Or it might come with the territory of mimicking the likes and dislikes of those around me. The attribution doesn’t matter. I bought a big whiteboard and wrote down my dislikes. This took longer than you’d think. Over the next few months, data was gathered in the field. One night, I might bite into a shrimp, shrimp that sounded terrific on the menu, and then go home and add SHRIMP to the list. Another day, a friend might gift me a scented candle, and not until I put it in the drawer filled with other scented candles I’d been given and not used did I add SCENTED CANDLES. Without the list, I won’t remember.
I started outsourcing decisions to this list, and it was the not waffling that was the most freeing. Instead of tabulating the preferences and habits of others, I diverted that energy toward creating a kind of machine-learned discernment about my own tastes. (I am sorry to anyone who has ever bought me a smelly candle. They make my teeth feel tight.)
Perhaps I’d deluded myself in thinking my diagnosis wasn’t believable.
Maybe nothing about my life could actually be offered up as counterevidence. Of course I’d been effective at interviewing celebrities! A 75-minute lunch at Chateau Marmont with a subject who recited talking points about their latest project, while revealing a pre-audited pound of transactional flesh about their personal life, proved nothing about my convincingness as a neurotypical person. All of it was pretend, which I was supremely comfortable with.
When I received the diagnosis, I was writing my fourth book and struggling. I’d mostly written in first person, but with this one, I was writing in third in alternating points of view. My characters have rich interior lives, what with all that nervous faffing. In third person, watching these people move through space, I questioned whether I even knew enough about genuine human motivation. But I laughed when I realized that my first novel, the one that changed the course of my career, was about two people who fall in love over text because neither of them can bear to sustain eye contact with the other.
For Sam, the diagnosis altered everything. Provided a sense of relief that was oceanic. The framing of our relationship changed. I learned about pathological demand avoidance, a pattern of behavior that is still up for debate in the ASD world but that for me represented a seismic OS update. It explained why I would unfailingly refuse to do something when asked, and why a demand or request would trigger an overwhelming sense of panic and certitude that I would only disappoint the person asking. This was me when Sam knocked on my door.
Three months into the diagnosis, I put a Post-it note on my wall. It says, GO SAY HELLO:) When I see the Post-it, I heed it.
I feel shy in these moments — like I’m really going out on a limb — but Sam is kind and receptive. He pushes off from his desk to wheel around, putting his headphones down to offer me the favored seat by the window. When I see his delight, I am delighted. And relieved.
When I am the one to go over there, something else happens. We find each other.
It is small.
I swear it’s a portal to another dimension.
It’s mostly an apocryphal joke that I got diagnosed with autism because Sam made a crack about it. In truth, it was because of my father.
During the pandemic, he was diagnosed with ALS. Once, when he fell in the middle of the night, my parents remained on the living-room floor for six hours waiting for a decent time to call and wake my brother, who lives half an hour away.
The year he got sick, I flew to them repeatedly, quarantining in Airbnbs and advocating for his care. Then my brain broke. The metronome tick of functioning cognition stalled. I stopped being able to work. Write. This is when I was diagnosed with ADHD and was medicated.
My father died on the night of Lunar New Year in 2022, a year before I was diagnosed as autistic. At his funeral, I didn’t cry at the service. In the presence of my mother, who deserved to be sadder than me, and my brother, who was next in line in order of sadness as the male child and a father, it felt profane to cry. Instead, standing in church, I was struck by a self-consciousness so forceful that I wondered if it were medically possible to die from it. I could not stop obsessing over the calculus of propriety. What was the numerical attribution of the intensity to which I, my father’s daughter, could cry? Did I deserve to feel less pain because of how he rarely hugged me? Because he’d referred to me by my first and last name? Was it he who’d kept me at arm’s length, or was it me? Did it count that I’d taken the first flight out, even though I hadn’t reached him in time to say good-bye?
I’d never thought to question how any of this felt before. The didactic urgency with which I had conducted my life. But standing at my dad’s casket, all these jury-rigged systems, these collected facsimiles of how a person ought to be, suddenly felt grotesque. I could see my own thinking for the first time, and the brutality of it, the self-loathing judgment in the face of the tidal grief I wouldn’t even allow myself to feel, was the most inhuman thing about me.
The last time I saw my father’s face, I was driving. My mother had figured out FaceTime, and they’d called me. I’d pulled over. He was always in a good mood even after months in critical care. He couldn’t clear his lungs or speak, but he smiled.
The Post-it note is a blessing, but there is cruelty in it too. There are days when the smiley face goads me. The Post-it may have saved my marriage, but for me and my father, it came too late.
I wish I had knocked on his closed door when I could have. I was in my 40s and still hadn’t accounted for the fact that people could die before I was ready to present myself to them. My father could have refused me. He could have laughed bashfully and shied away from conversation. We could have both quaked with embarrassment attempting a hug. He could have called me Mary Choi and shook my hand instead. I wish I’d gathered all these moments. It would have been more of him than I have. Some days, I can’t forgive myself for not trying. And that is okay too because this is how I will have loved him.