TikTok videos portraying symptoms of Tourette syndrome may be misleading to viewers, according to a study published in the journal Pediatric Neurology. A team of neurologists examined popular TikTok videos shared under #tourettes and found that the behavior in the videos was more consistent with functional tic-like behavior.
During the COVID-19 pandemic, TikTok videos portraying symptoms of Tourette syndrome have become exceedingly popular, with some videos amassing millions of views. At the same time, neurologists have noted an increase in the number of youth presenting to movement disorder clinics with functional tic-like behaviors. These circumstances led study authors Alonso Zea Vera and his team to conduct an examination of the portrayal of tics and tic-like behavior on TikTok.
Tourette syndrome (TS) is a neurological disorder that involves sudden, non-rhythmic movements or vocalizations called tics. Functional tic-like disorder (FTLD) is also characterized by movements or vocalizations that resemble tics but with some important differences. Unlike TS, the tic-like behaviors that characterize FTLD tend to be more suggestible, more difficult to suppress, and tend to involve the rest of the body rather than the face.
To investigate how tics are being portrayed on TikTok, Zea Vera and his team first searched for the 100 most-viewed TikToks shared under #tourettes as of March 27, 2021. The sample of videos averaged 2,060,379 “likes” and 47,922 comments each. A small team of reviewers, who were all pediatric neurologists specializing in movement disorders, examined each of the videos. The reviewers noted any features of common, atypical, and severe tics seen in the videos. They also rated the extent that “the movements or sounds portrayed are typical of a primary tic disorder such as Tourette syndrome” on a Likert scale from 1 to 5.
Overall, the reviewers noted that the videos displayed movements, vocalizations, and behaviors more consistent with functional tic-like behaviors rather than tics. They also indicated that the majority of the videos displayed symptoms that were not typical of a primary tic disorder like Tourette syndrome.
For example, coprophenomena — the unwanted expression of inappropriate words or gestures — was overrepresented in the videos, despite being relatively rare among TS patients. Additionally, long phrases that were often context-dependent, complex behaviors, and behaviors involving parts of the body aside from the neck and face were also overrepresented. Many of the videos displayed aggression toward other people or objects, or self-injurious behavior that was accompanied by atypical features.
The study authors note that the neurologists’ examination of the videos did not serve as a clinical evaluation of the video subjects, which would require a lengthier in-person evaluation. The findings do suggest, however, that the videos were not representative of Tourette syndrome and could be misleading to viewers.
“While many individuals in these videos express an interest in increasing TS awareness,” the authors write, “the present analysis suggests a risk of creating a highly inaccurate perception of TS.” The researchers theorize that the overrepresentation of severe and atypical symptoms in the videos may have resulted from the contributors’ desire for high engagement since negative depictions of TS perform better on social media.
Although outside the scope of the current study, the authors point out that some scholars have speculated that the increased popularity of TikTok videos on Tourette syndrome may be causally related to the rise in FTLD among adolescents. “One hypothesis is that the rise in FTLD is caused by “social contagion” or modeling,” Zea Vera and his team say. “While to date we do not have strong evidence to support this hypothesis, disease modeling is seen in functional neurologic disorders, and modeling of tics portrayed in social media has been reported in a previous case of mass functional (psychogenic) illness.”
The treatment of tics and tic-like behaviors typically involves minimizing the attention paid to these behaviors, since increased attention can perpetuate symptoms, particularly with FTLD. Accordingly, the study authors suggest that patients with FTLD avoid watching TikTok videos on Tourette Syndrome.
The study, “The phenomenology of tics and tic-like behavior in TikTok”, was authored by Alonso Zea Vera, Adrienne Bruce, Jordan Garris, Laura Tochen, Poonam Bhatia, Rebecca K Lehman, Wendi Lopez, Steve W. Wu, and Donald L. Gilbert.
