This summer, I watched Stop Making Sense, Jonathan Demme’s masterful concert film about Talking Heads. The band’s singer, David Byrne, is one of the few public figures who has openly suggested he has Asperger’s syndrome. As someone who was diagnosed with Asperger’s syndrome as a child, the thought of someone like Byrne sharing my experience was powerful. Seeing his performance in the middle of a tough year pushed me toward surmounting long-held fears and doubts about telling the people in my life that I’m on the autism spectrum.
I have never been open about my diagnosis. For years, I felt defined by my inability to look other people in the eye or understand sarcastic jokes. As a kid, I didn’t tell anyone about my condition, though the effects were obvious. I never understood the unwritten rules of the playground, so I drew cartoons and read books with friends who sacrificed their social status by giving me a seat at the lunch table.
However, I was given resources that taught me how to fit in. While other kids went to karate lessons and playdates, I was shuttled to speech and physical therapy programs by parents who wanted me to lead an independent life. My brother offered tips about socializing everywhere from the baseball dugout to the school dance.
By middle school, I was more outgoing. I’d learned social norms the way some people learn to play an instrument or speak a foreign language. I sometimes discussed life on the spectrum in high school, but only with my best friends or within the tight-knit community of a YMCA youth program. I just wanted to move on.
College presented the perfect chance to erase Asperger’s from my life. For once, it seemed possible to place painful moments I associated with Asperger’s firmly in the past—I was in the Ivy League, I’d made lasting friendships during NSOP, I was an independent young adult in the city, and I saw no reason to remain tied to a childhood identity.
Yet I often found myself feeling just as insecure as I had on the kickball court in elementary school. I experienced the loneliness and doubt that accompanies many students during their first year at Columbia. When these feelings hit, I tried convincing myself that Asperger’s had nothing to do with the isolation, the anxiety, and the awkwardness. More recently, I studied abroad in Madrid. I enjoyed the overall experience, but often shrank to dark corners of crowded cafés and bars, overwhelmed by my inexperience with new social standards. There were constant reminders of my inability to grasp subtle interpersonal cues, something I had previously believed was in the rearview mirror.
The current political climate has also forced me to reconsider the notion that Asperger’s is irrelevant to my adult life. I watched the man who publicly bullied a reporter with a congenital joint condition get rewarded with the presidency. I replayed his mocking behavior over and over in my head as I saw the election returns come in.
That image haunted me for months. It told younger versions of myself that the bullies always win, that kids who are a little different are nothing more than punch lines. It told my present-day self that I’d be laughed out of the room if I keep my career goals to campaign, organize, or govern after publicly admitting that I have Asperger’s.
For a while, I felt justified in refusing to make that admission. Maybe we live in too harsh of a world to needlessly go public about something that could lead to hurtful jokes, negative assumptions, or worse. I maintained my approach of going along to get along, internalizing the concept that acquiring “normal” behavior was worth celebrating while my status as someone with Asperger’s was worth camouflaging.
In recent months, however, fellow Columbia students made me remember who I am. They reminded me that as someone in the progressive movement, I am part of something far larger than myself. Brave people on this campus facing immediate threats in the current political climate have provided inspiration. Students here are standing up to racism, sexism, and bigotry. They are open about struggles with mental health and sexual assault so that others can access needed help. They are undocumented and unafraid.
If peers with their lives on the line can display such courageous honesty, I can overcome my fear of judgment. At a time when many people’s health care, education, and rights are in jeopardy, it would be wrong of me to not live my truth. I received quality care from remarkable health and child development professionals, as well as an amazing education from caring teachers. Unfortunately, people on the spectrum facing poverty and various forms of discrimination cannot say the same. I have a responsibility to speak up as someone benefiting from various forms of privilege while experiencing Asperger’s.
This marks a fundamental change in my lifestyle. I tried masking a key part of my identity for about two decades—it didn’t make me feel any better about who I am or how the world sees me. I abandoned this strategy of acting “normal” because I believe that deep down, most people ultimately want to build more accepting, inclusive, and unified communities. At least, that’s what I’ve seen in my years at Columbia.
Living hopefully and openly is easier said than done. There will be times when I want to obscure certain chapters of my story. But the next time I feel ashamed about Asperger’s, I will think about Stop Making Sense. I will recall David Byrne wearing an oversized suit, serenading a lamp, and dancing around the stage. Then I’ll think about Columbia, the place that has finally made me at home with the fact that in some ways, I’ll never feel quite at home. And that’s okay.
Ben LaZebnik is a Columbia College senior majoring in urban studies. He appreciates everyone who’s helped him along the way. There are too many people to list, but you know who you are. The Unwelcome Guest runs alternate Wednesdays.
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