By Michele Turk
Since the spring of 2020, teenagers worldwide have developed intense, complex tics, often after watching TikTok videos of people who say they have Tourette syndrome.
As the parent of a child with Tourette syndrome, when I first read about the phenomenon, I was curious—and skeptical—because you can’t “catch” Tourette syndrome from watching other people tic on social media.
Experts I spoke with were quick to point out that most of these teens don’t have Tourette syndrome. What these TikTok ticcers appear to be experiencing are functional tic-like behaviors—a type of functional neurological disorder (FND, formerly known as conversion disorder) with mass psychogenic illness, where members of a group suddenly develop tic-like movements. In this instance, the group with FND includes teens worldwide who watch Tourette syndrome videos on TikTok.
“All of a sudden you are doing something you have never done before and it’s scary,” says Dr. Graham Hartke, a psychologist and former director of the Rutgers University Tourette Clinic. “It’s very disruptive and potentially traumatizing.”
The Rise of Tic Disorders
FNDs were relatively rare until the pandemic. The surge of unexplained tic-like movements accounted for up to 35 percent of teens with tic disorders in August 2021, compared with just one percent before the pandemic, according to one study of nearly 300 patients published in Movement Disorder, the official journal of the International Parkinson and Movement Disorder Society. The Rutgers clinic witnessed a 97% increase in the number of referrals for teenage girls with tics since March 2020, most of whom have FND, says Hartke.
Hartke points out that the teens with functional tic disorders are part of a wider mental health crisis affecting teenagers: Most of the affected teens have a history of anxiety and depression, and the stress of the pandemic combined with the increased use of social media created the perfect storm for anxiety tics.
The Tourette Association of America (TAA) issued a report titled “Rising Incidence of Functional Tic-Like Behaviors” which runs through the differences between FND and other tic disorders. Keith Coffman, M.D., Director of the Movement Disorders Program at Children’s Mercy Hospital in Kansas City and Co-chair of the TAA’s Medical Advisory Board offers this explanation: “Patients with Tourette know their body is moving uncontrollably and they would like it to stop, whereas in FND, they feel that it’s happening to them, not something they are doing.”
Tourette Syndrome vs Other Types of Tic Disorders
Dr. Hartke points out that Tourette syndrome is more common in boys and typically begins with simple, subtle movements like eye blinking, and slowly becomes more severe, peaking before the teen years; whereas the vast majority of TikTok users with new tics are females between 12 and 16—and they typically involve dramatic movements like hitting, whistling, and whooping.
As the mother of a 23-year-old son with Tourette syndrome, I know how unsettling it can be to develop a bizarre, seemingly inexplicable illness. My son has had mild tics since he was 7 years old, repeatedly blinking his eyes and grimacing involuntarily. I consulted several doctors before he was diagnosed with Tourette when he was 11. Many kids with Tourette tame their tics as my son did in high school with the help of medicine, the right educational environment, and by finding a hidden talent—in his case, music, which boosted his self-esteem.
If a teenager suddenly starts ticcing out of the blue, according to Coffman, most patients ask Google for guidance instead of asking a medical professional, and they may panic because they think it’s the onset of severe Tourette. He urges parents to seek proper medical advice (preferably from a neurologist), which can expedite a proper diagnosis and find the right treatments sooner.
Dr. Hartke says that, unlike Tourette, FND is treatable. Dr. Coffman goes further by stating people with FND may be cured. He says, “If delivered the right way, the patient and parents are told that this is your mind making your body do things subconsciously. Once the patient sees that, symptoms will often start to improve, sometimes while the family is in the room with you.”
There can be pushback from parents who accuse their child of faking it or who assume that there might be a physiological cause, as I did years ago. But once parents and teens understand the diagnosis, the next step for all teens is to limit exposure to ticcing videos. That is easier said than done given that videos tagged #tourettes now have more than 5 billion views—up from 1.25 billion in January.
Another treatment for functional tics is addressing anxiety and depression, which typically includes cognitive behavioral training. “Sometimes stress management interventions can be the first strategy, and you can bring the volume down on everything,” says Hartke. “Even activities like yoga, sports, and music are helpful ways to reduce stress and improve the quality of life for individuals.”
One last thing to keep in mind is that while teens diagnosed with FND should have an individualized treatment plan, it’s also important for parents to minimize attention to functional tics. Stay calm in front of your child, advises Hartke, and assure them that you are going to figure this out together.