Monday Article #17: Teens developing tic-like behaviors (Tourette syndrome) due to TikTok?
TikTok, a well-known social media platform where users create and share videos. During the COVID-19 pandemic, the use of this site greatly expanded. However, Tic and Tourette syndrome content also increased dramatically along with the number of patients with tics in neurology clinics. Although initially it has been co-related with the symptoms that represent “tic attacks” in patient with Tourette syndrome, soon it became clear that these acute-onset tic-like symptoms are functional in nature. The emergence of this new functional neurological disorder (FND) has been linked to social media use and presentation of tic like behavior of popular YouTube and TikTok influencers.
What is tic and Tourette syndrome?
Tourette syndrome (TS) is a condition of the nervous system which causes people to have “tics”. Tics are characterized by sudden twitches, rapid and unwanted movements, or vocal sounds that people do repeatedly. Having tics is a little bit like having hiccups. Even though you might not want to hiccup, your body does it anyway. Sometimes people can stop themselves from doing a certain tic for a while, but most of the time it’s inevitable. There are two types of tics, motor and vocal. Motor tics are movements of the body and vocal tics are sounds that a person makes with his or her voice.
Symptoms usually begin when a child is 5 to 10 years old of age. Tics tend to get worse during times that are stressful and exciting, however it eventually improves when a person is calm or focused on an activity. In most cases, tics decrease during adolescence and early adulthood, and sometimes disappear entirely. On the other hand, some may still experience tics into adulthood and could become worse.
How TikTok links with Tourette syndrome
Ongoing debates on teens experiencing tic-like symptoms due to TikTok have raised many doubts and concerns. Two articles in this issue of Movement Disorders address this important and emerging phenomenon of acute-onset-tic-like behaviors and seek to understand its causes and treatment.
The author Pringsheim et al carried out a study by comparing a cohort of young people in the Calgary Tic Disorders Registry gathered between 2012 and 2021. They compared patients from the registry who had rapid onset of tic-like behaviors from March 2020 onwards (during the pandemic) with the remainder of the cohort. Those with tic-like behaviors were older, more likely to be female, and had higher severity as rated by the Yale Global Tic Severity Scale. Based on the comparison, there was a significant relationship between a diagnosis of functional tic-like behaviors and anxiety and depressive disorders. All those with such behaviors reported accessing content on social media, mainly TikTok relating to people claiming to suffer from tics or Tourette syndrome.
Another author, Paulus et al have also linked a cohort of patients with rapid-onset tic-like behaviors to exposure to social media, particularly the YouTube Channel “Thunderstorm in the head”, where a young man presents with symptoms atypical for Tourette syndrome. However, in this group of patients, several clinical features were very much similar to those with Tourette syndrome, including premonitory sensations, ability to suppress movements and vocalizations and obsessive-compulsive disorder. This author did not formally assess or linked with anxiety and depression.
What do these studies tell us when added together with previously published work on sudden onset of tic-like symptoms more generally?
These studies have clearly point out that this is a FND with “Tourette-like” symptoms. Although, there are some similarities with clinical presentation of Tourette syndrome, a closer look however, reveals that several obvious differences, including age, course of symptoms, and kind of movement and vocalization. Because most of these patients had been misdiagnosed with Tourette syndrome before being seen at the specialist center, it is of utmost importance not to automatically make the diagnosis of Tourette syndrome in all those patients with otherwise unexplained jerks, vocalizations, and copro-phenomena, but also to consider the diagnosis of a functional disorder. The typical onset of tics is discrete with simple motor tics between the age of 5 and 7 years. In other words, rapid onset of tic-like symptoms with complex vocal movements and swear words well after the age of 10 years with constant symptom excludes the diagnosis of Tourette syndrome.
Although patients with functional tic-like behaviors were generally experiencing symptoms of a higher severity than patients with Tourette syndrome, in many cases an incongruity between reported severity and function is obvious. For example, patients and their families often report that because of the symptoms, unwanted obligations can no longer be performed, while favorite activities can be conducted without any restrictions. Some of the patients even started to present their own symptoms on social media.
There is an interesting association between development of functional tic-like behaviors and depressive symptoms and anxiety, suggesting that these symptoms may be an additional risk factor for the development of functional “Tourette-like” behaviors.
Early diagnosis is key, and these will help in the recognition of the phenotype and early diagnostic explanation. Accelerating the diagnostic and diagnostic explanation process is likely to lead to better outcomes going by previous evidence in people with FND. Some clinicians have reported that symptoms may even stop immediately after exclusion of the diagnosis of Tourette syndrome.
Lastly, there is the issue of social drivers to illness and the expression of illness. This is not a new phenomenon, as seen in mass sociogenic illnesses, some of which have involved tic-like behaviors. Recently, the term mass social media-induced illness has been suggested for this new type of mass sociogenic illness spread solely via social media. Indeed, authors have noted the presence of rapid-onset tic-like behaviors in the context of social media viewing before the pandemic. The pervasive, international nature of social media massively increases the potential reach of (mis)information and the generation of illness expectations and beliefs that are incorrect and that may trigger and escalate symptoms, particularly in those who are vulnerable
So, what happens next?
The difference between true tic disorders, which typically emerge in childhood, and tic-like behaviors, which are what these TikTok users seem to be experiencing, doesn’t matter much for treatment. Both groups will likely undergo something called comprehensive behavioral intervention for tics, or Comprehensive Behavioral Intervention for Tics (CBIT), to manage their symptoms. However, if there are other underlying mental health issues, those need to be treated, too. The author from two reports have mentioned that this effect could eventually be treated especially if they are getting treatment for the underlying anxiety or depression.
Perhaps, at least in part, the patients reported in these two reports represent a move toward the norm of functional movement disorders on social media.
Bitsko, RH, Holbrook, JR, Visser, SN, Mink, JW, Zinner, SH, Ghandour, RM, Blumberg, SJ (2014). A National Profile of Tourette Syndrome, 2011-2012. J Dev Behav Pediatr 35(5), 317-322.
Olvera, C., Stebbins, G. T., Goetz, C. G., & Kompoliti, K. (2021). TikTok tics: a pandemic within a pandemic. Movement Disorders Clinical Practice, 8(8), 1200-1205.
Paulus, T., Bäumer, T., Verrel, J., Weissbach, A., Roessner, V., Beste, C., & Münchau, A. (2021). Pandemic Tic‐like Behaviors Following Social Media Consumption. Movement Disorders, 36(12), 2932-2935.
Pringsheim, T., Ganos, C., McGuire, J. F., Hedderly, T., Woods, D., Gilbert, D. L., ... & Martino, D. (2021). Rapid onset functional tic‐like behaviors in young females during the COVID‐19 pandemic. Movement Disorders.
This article is prepared by: Tanessri Muni Peragas