Social Media Fads Are Taking the Conversation About Tourette’s in the Wrong Direction

Illustrated by Lucy Zuo

TikTok videos labeled “#tourettes” have amassed billions of views. These videos follow certain patterns; many feature TikTokers filming their tics while attempting specific tasks or “challenges,” like cooking a particular dish or singing karaoke. 

In recent months, several articles have explored the possibility that videos on TikTok are causing Tourette’s-like symptoms, largely in young girls. These symptoms, doctors say, are not indicative of actual Tourette’s. Rather, they suggest a stress-induced movement disorder.

This concern about the effects of tic-related content, while warranted, is overblown. Characterizations of the uptick in Tourette’s-like symptoms as “a pandemic within a pandemic” veer toward the melodramatic, and risk prejudicing worried parents against kids who struggle with tics. 

Rather than sensationalizing these videos’ effects, we should interrogate their content. These are videos that commodify tics. TikTokers who film themselves being overcome by sudden outbursts of tics while trying to bake are turning Tourette’s into clickbait. The view counts on these social media challenges speak for themselves: tic-related videos on TikTok mostly serve to entertain people who don’t tic at the expense of those who do. It’s Tourette’s as slapstick comedy, Tourette’s as performance art.

There’s nothing wrong with making tic-related videos for people who don’t experience tics. But such videos should be educational; they should inform, not entertain. Likewise, there’s nothing wrong with having a sense of humor about one’s own tics. But distilling Tourette’s into skits or fads goes beyond that: it reduces a neurological condition to a quick joke for users to chuckle at.

For the most part, my quarrel is not with the content creators who film these videos. Rather, it is with the trends themselves — and with the social media culture that has helped to create them. I reject the suggestion that cooking or singing “challenge” videos constitute “positive representations of Tourette’s,” as one WIRED article put it. In these videos, the condition plays second fiddle to coarse situational humor. TikTok fads don’t normalize tics; they turn tics into cheap punchlines. And delivering cheap punchlines under the guise of “normalizing” a condition or “informing” viewers is a dangerous game. 

It’s also worth noting that these trends attach value to the quirkiness, funniness, or shock value of tics. I have yet to see a viral video featuring someone with tics as unglamorous as mine: blinking, sniffing, humming, grimacing. The videos that TikTokers view and like in the greatest numbers feature people with complex tics. For instance, verbal tics that respond to context cues; violent, full-body tics; and coprolalia — the involuntary utterance of swear words. 

In other words, apps like TikTok end up centering the most extreme tics and sidelining the most common. I have no reason to believe that these “extreme” tics are less real than mine; I’m always wary of the suggestion that TikTokers are faking their tics, given my experience with similar accusations. Still, it’s cause for concern that social media provides overwhelmingly young viewers with an incomplete and (literally) two-dimensional picture of a condition that is already deeply misunderstood.

I’m aware that some people might accept my criticisms of the commodification and misrepresentation of tics on TikTok while maintaining that this imperfect representation is better than nothing. To some extent, I agree. At the same time, I don’t see why we should settle for imperfect representation. I don’t see why our point of comparison should be no representation at all. My point of comparison is real, nuanced conversation about tic disorders. And by that standard, apps like TikTok are failing miserably.

It’s easy to say that visibility is a good thing. But there are plenty of instances — from In the Heights to Love, Simon — where representation feels bittersweet, or just plain bitter. I’m glad that a generation of TikTokers is growing up with some exposure to tics. I’m not glad that this exposure comes in the form of bite-sized “challenge” videos, videos that are reductive at their best and degrading at their worst. 

“Visibility” is a tricky word to use in the context of a trend that has left me feeling no more seen than before.

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