CHICAGO — Cases of unexplained tics developing in young girls after watching TikTok videos has some alarmed. Researchers say it could be triggered by watching others with Tourette syndrome or other movement disorders.
Johns Hopkins University’s Tourette’s Center says 10 to 20% of pediatric patients are presenting with tic-like behavior, which is up from 2 to 3% the year before the pandemic. Meanwhile, the hashtag #Tourettes on TikTok is nearing 5 billion views.
Just before the onset of the pandemic, 14-year-old Iris Keane began having sudden uncontrollable movements.
“It's been tough to wake up one day and not be able to control everything. It's a little scary,” she said. “But other than that, it's been mostly just a thing.”
After seeing a neurologist, Iris was diagnosed with Tourette syndrome.
“She had been dealing with some depression, anxiety-type things as well, but nothing so severe,” said Iris’ mother, Alison Keane. “And then, this, the ticking, was not in our family history anywhere that I know of.”
Around the same time, doctors around the world and here in the U.S. began seeing a surge in teenage girls developing Tourette syndrome-like twitches. The common thread: all of them watched videos of people with tics on TikTok.
“Those TikTok tic patients, they have the most explosive tics right in the office, which is kind of unusual,” said Dr. Katie Kompoliti, a professor of neurology and movement disorders specialist at Rush University Medical Center.
Between March and June of this year, Rush University Medical Center in Chicago saw 20 patients with these tics, more than double from the previous year.
Dr. Katie Kompoliti and her colleagues at Rush studied the TikTok phenomenon and found that while some may have started mimicking what they saw, it was spreading “spontaneously through the group” without the patients being able to control it. They concluded it was an example of “mass sociogenic illness” that can spread consciously or subconsciously.
“The patients I saw in clinic had real disease. I can't account for everybody out there on TikTok and what their intentions were and what their disease was,” said Dr. Kompoliti.
In 2011, 20 teenage girls at one high school in upstate New York developed motor and verbal tics. It was chalked up to mass hysteria with media attention worsening the symptoms. They eventually subsided.
“Now, the mass media give it the ability to become a pandemic. It's not confined by locality anymore,” said Dr. Kompoliti.
Dr. Michael Rich, the director of the Digital Wellness Lab at Boston Children's Hospital, says that an inherent nature of tics is that they are suggestible and the fact that this is happening on TikTok is incidental.
“It could be on YouTube. It could be anywhere. What I think is important to recognize is it only affects a subset of people, predominantly female adolescents,” said Dr. Rich. “Is TikTok responsible for this? It makes me wonder a little bit. I mean, are we shooting the messenger rather than looking at the message?”
Since the news broke, it appears some videos featuring displays of tics and uncontrolled physical movements may be getting flagged, though TikTok has not acknowledged that.
Still, the platform appears to remain somewhat skeptical acknowledging that while there may be a correlation, a definitive causal relationship has yet to be established.
“The safety and well-being of our community is our priority, and we're consulting with industry experts to better understand this specific experience," wrote a TikTok spokesperson in a statement.
Experts say it’s important to note other factors like depression and stress pre-existed among those affected.
“It reminded me of Iris a little bit, but it was pretty extreme,” said Alison Keane. “And so, I'd asked her, ‘Iris, did you see all those?’ And she's like, ‘I can't really watch them because they make me tic more.’”
While Iris didn’t watch the videos and doesn’t think her condition is related, she avoids them and doesn’t post clips of her own tics.
“Some kids want that, and they want the attention that comes from that,” said Iris. “And so, I try not to post too much on at least on TikTok.”
Doctors say it’s important to monitor any unusual changes.
“I think you have to be smart and be vigilant and monitor what your kids do and what they see there,” said Dr. Kompoliti.
And understanding that what they see could be triggering tics in a subset of young people.