My young nieces barrel into the room and jump on the bed, imploring me to wake up so we can play. Groggily, I follow the 3-year-old and her almost 7-year-old sister downstairs to see what this morning’s version of play will be. With them, play is one improvisation exercise after another, everything based on a chain of “yes and.”
We’re playing doctor; the older one is the doctor, the younger one is the nurse, and I am the patient. In 10 minutes, we will revamp this game so that I, too, am a doctor. I make the brief mistake of blocking — the term used in improv when a person denies or rejects what another person has already declared as a truth of the scene — when I tell them I cannot be a doctor because I haven’t gone to medical school.
Realizing I have just broken a core tenet of improv, and therefore am jeopardizing my credibility in front of our (nonexistent) audience, I tell them I will go to medical school. I do this in hopes of realigning the world on its axis and, ultimately, saving the performance.
I leave the room and return less than a minute later as a board-certified physician. Despite my newly acquired expertise, my nieces ask me to take on the role of the patient “just one time” for a dislocated elbow, and then again for a neurosurgery that I must endure without anesthesia. Within seconds of my own surgery ending, I re-assume the role of physician as I lead our team of three on a pediatric orthopedic surgery on an infant baby doll’s knee. We continue to “yes and” ourselves from one wildly unrealistic scenario to another.
I have yet to tell my nieces I’m autistic. I’m uncharacteristically confident that the admission wouldn’t change much, if anything. I’d still be their same quirky and loving Uncle Eli who wants to make them smile and laugh, reminding them, above all, to be kind. And yet, I worry — selfishly, perhaps — about what them growing up will mean for how they perceive me. I wonder: Do they detect my awkwardness and unease now? As they grow older, will they only become more aware of how different I am? I feel like I’m just trying on the clothes of being an adult and am on the verge of being “found out.” Until then, I try to keep hiding the fact that I am just as (un)qualified to appear neurotypical as I am to perform surgery.
My first performance, now only memorialized in my mom’s photo albums and the trove that is my long-term memory, was when I was cast as the letter “F” in my preschool class’s production of Chicka Chicka Boom Boom. Since then, my performances have become more frequent, but less obvious. Society favors those who keep their differences to themselves and so, as an autistic person, I’ve learned performing “normalcy” is integral for me to gain acceptance and understanding. I’ve been tasked with making my existence look easy—to perform an un-burdensome experience of disability, or better yet, to have no disability at all.
Secretly, I do all this because I want to know what belonging feels like. It is a clumsy process, one that reminds me of a cartoon image of a seal, slapping its flippers at water’s edge as it attempts to balance an inflated beach ball on its nose. I, too, am tasked with a juggling act: Be myself, but not too much.
Winter 2017. I’m in my mid-20s and am in the emergency room because of post-concussion symptoms — intractable migraines — persisting more than a year after the initial injury. As I wait in a tiny exam room with its fluorescent lights and scratchy plastic chairs, I nervously swing my legs in the air. When the ER technician walks in and sees me stimming, her body language shifts, as does her tone. Stimming, which refers to self-stimulatory behavior, is repetitive and something many autistic people engage in; it can be used to express one’s self and/or regulate one’s emotions.
She uses simple words and short sentences; as her words become smaller, I seem to, as well. The appearance of me stimming invokes a kind of miscalculation — if not a blatant disregard — for my actual age, and assumes I lack a grasp on reality. “Pretend this—” she says, her arm making a sweeping motion as she acknowledges the tiny room around us “is the beach. You’re just here to swim.” Her eyes twinkle; she seems proud of herself for the “helpfulness” she’s just displayed.
I do not tell her that I know this is not the beach; we are in a temperature-regulated ER room in Pittsburgh on a cold January night. My silence incorrectly translates into agreement — transforming me from adult to child, human to cartoon seal — and my coping gets mistaken for flailing.
January 2019. I decide to crack myself in half, wide open for anyone to see, when I write my first essay about being autistic and it gets published. It feels terrifying, though necessary, to share the voice it had taken me so long to find. I share the link with a then-friend, eager to hear his thoughts. I’m taken aback by his tepid, barely congratulatory remarks, remarks that not-so-quietly express judgment, maybe even condescension. When I ask him about it, he says he would never write about his autism and wonders why I feel the need to write about mine.
I don’t answer his question; instead, I fold into myself. I look inward, trying to take stock of what I have done “wrong” in writing — and willingly sharing — such an essay. I am knowingly ridding myself of the ability to keep my autism a secret. With just a simple internet connection, anyone can find my diagnosis. I’m not sure if I am failing or refusing to hide my autism. Either way, I have ruined the performance. The illusion of me as a person whose autism can remain hidden shatters into a million pieces.
Late January 2024. I’m having lunch with a friend and about two-thirds of the way through the meal, he tells me about a Pride fundraising fashion show the Three Rivers Business Alliance will be holding in June and asks if I’d like to take part. When I ask him how I’d be involved, he says, “You’d be one of the models … if you’re picked.” He pauses, then adds, “I actually think you’d be perfect for this.” Despite my shock and disbelief, I — strangely — say yes. I relegate this to the back of my mind rather easily; of course I won’t be picked.
I’m not sure if I am failing or refusing to hide my autism. Either way, I have ruined the performance. The illusion of me as a person whose autism can remain hidden shatters into a million pieces.
Eli Kurs-Lasky
Two months later, while out hiking, I get a call from one of the organizers of the fashion show, asking if I’m still interested in being one of the models, “because if so, we think you’d be a great addition.” I do my best to hide my initial fear that I’ve been included out of pity.
She mentions that she’s read at least one of my published essays. So, I think to myself, at least she knows I’m autistic. I’m equally relieved to know I don’t have to hide from her and to learn that my inclusion as a model is not an offer born of pity. And yet, I’m dumbfounded that she actually believes I can do this. She says she will provide any additional accommodations I need to participate fully. I thank her and, while I find her offer gracious, convince myself that the path to acceptance is to pretend I need as few accommodations as possible. In my head, I envision myself a magician and tell the audience: “For my next trick, I will pull off a crowd-favorite disappearing act: I will make my autism vanish from existence!”
In the months of preparation leading up to the show, I barely tell friends. I have the nagging thought that People at the show will realize I’m not “one of them” and request I leave. This thought haunts me from that very first phone call all the way up to my actual walk down the runway. I’m torn between wanting to prove I can do it and wanting to hide the fact that I’m actually not sure I can.
Don’t tell anyone about Pittsburgh
The day of the show, I arrive three hours before the event starts, as is requested for the models. We gather on the second floor of the venue. Other people cluster in small groups to talk, though I’m not sure if everyone knows each other or if they’re just that comfortable socializing with people they’ve never met before. I stand off to the side.
The rush of adrenaline from being so far outside of my comfort zone causes me to become restless, so I stim by pacing the length of the second floor over and over again. When one of the makeup artists walks away from her area to take a break, I step underneath the giant softbox light near her workstation and watch as the warmth of the light bathes my skin in an amber glow. I keep trying to find ways to take it all in, as though that will help this moment feel real.
I try to fit a few words into others’ conversations to do what I can to keep up the appearance that I belong, though I remain convinced that everyone knows I most surely do not.
It isn’t until the show is over and I’m leaving the venue carrying a large bouquet of flowers in a glass vase — a leftover centerpiece from one of the tables — that I can exhale. Even then, I feel like I’ve just pulled off a giant heist.
Days later, I watch the video my friend recorded of my fashion show performance. The video makes me smile. I play it again and again, studying myself, watching to see if my discomfort is obvious, watching for any falter in my performance, wondering if people could suspend their disbelief long enough for my two-minute appearance to look like it fit with the others. I do not see myself moving in fluid motion, but rather bumbling through 1,000 discrete tasks. I can only hope my performance looks effortless and natural.
Sometimes, it feels like all I do is rehearse for my next performance because while everyone else gets to remain largely clueless about my world, I live in theirs, where I am constantly tested to see how well I can pass off as one of them. I go from one unpaid acting gig to the next. The only intermission is a good night’s sleep. Tomorrow, I’ll start my day saying “yes and.”
Eli Kurs-Lasky is a Pittsburgh native who interacts with the city through writing and photography (self-taught). He can be reached at eli.kurslasky@gmail.com.
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