The Tourette’s community is livid over the ‘TikTok tics’ media frenzy
By Jessica Lucas, Input
Last month, a Wall Street Journal article titled “Teen Girls Are Developing Tics. Doctors Say TikTok Could Be a Factor” went viral on social media.
The piece reported a rise in young women presenting with symptoms of Tourette syndrome, a widely misunderstood neurological disorder that impacts roughly 0.6 percent of children and causes people to experience tics — involuntary and repetitive movements or sounds.
The Journal cited “a spate of recent medical journal articles,” in which doctors claim many girls with unexplained tics “had been watching videos of TikTok influencers who said they had Tourette syndrome.” The piece, which featured two teenage girls who linked their tics to TikTok, said that pediatric movement-disorder centers across the U.S. had reported “an influx of teen girls with similar tics.”
“PEOPLE automatically think we’re doing things for ATTENTION, or that there’s NO WAY that Tourette syndrome can be REAL.”
The article acknowledged that the “TikTok tics” epidemic was anecdotal and even quoted an academic who cast doubt on TikTok being the root cause of this phenomenon. “There are some kids who watch social media and develop tics and some who don’t have any access to social media and develop tics,” Dr. Joseph McGuire of Johns Hopkins University Tourette’s Center told the paper. “I think there are a lot of contributing factors, including anxiety, depression, and stress.”
But the headline was damaging enough. And it was worsened by subsequent coverage: Buzzfeed, the New York Post, People, and Business Insider ran with the story — all without any input from the Tourette’s community itself, which has been horrified by the press frenzy.
Ben Brown, host of the Tourette’s Podcast, has been deeply perturbed, as have his listeners. “There’s a lot of frustration. Some people are just livid,” says Brown, who is 41 and based in North Carolina. He was diagnosed with Tourette syndrome at the age of five, but lived a “closeted” life with the condition while he worked as a photojournalist. Brown “came out” with Tourette’s when he launched his podcast in 2018.
“Now we have scientists who are saying things we know from experience are just not safe,” Brown says. He and many others living with Tourette syndrome fear the current rhetoric around TikTok tics could further stigmatize Tourette’s, especially for young women.
Britney Wolf is a 31-year-old Tourette’s campaigner from Ohio. “People automatically think we’re doing things for attention, or that there’s no way that Tourette syndrome can be real,” says Wolf, who was diagnosed with Tourette’s at the age of seven. She interviews people with the condition on her YouTube channel in a bid to challenge stereotypes. “There’s already so many of these people trying to tear us down,” she says, “and articles like this give them more fuel to start claiming that all advocates are faking it.”
Jaleesa Jenkins, a 24-year-old Tourette’s YouTuber from California, is most frustrated by the suggestion that Tourette-like symptoms can be “caught” through platforms like TikTok. “The idea is really oversimplified and really stigmatizing,” she says. “It’s just not true. It makes people afraid, suspicious, or scared to be around us.”
It seems that the recent press attention has undone years of campaigning. “People with Tourette syndrome have worked hard for a very long time to feel understood — particularly for people to understand that tics aren’t voluntary or done for attention,” says Dr. Christine Conelea. The clinical practitioner and researcher is an assistant professor of the Department of Psychiatry and Behavioral Sciences at the University of Minnesota and has worked with Tourette’s patients for 15 years. “I worry that those who are doing advocacy on social media spaces will be questioned and targeted.”
Wolf finds the situation heartbreaking. “So many people have told me how much they have learned about Tourette’s because of people online,” she says. “It felt like we were finally getting somewhere. Now it feels like we’re being pulled back.”
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