CBIT Therapy is a leader in the management of a Functional Neurological Disorder (FND) called TikTok Tics. This condition includes a very sudden onset of alarming and unusual tic-like behaviors in response to anxiety, depression, isolation, and misleading social media related to Tourette Syndrome.
Functional Neurological Disorder (FND) is a mental health related disability thought to be caused by extreme emotional stress, rather than a documented neurological or physical disorder. FND can present in drastic ways such as blindness, falls, catatonic states, numbness, paralysis, seizures, hearing loss, limb injuries, migraines, or tic-like behaviors.
FND symptoms are typically distressing to the patient and often impact overall quality of life for their entire family. CBIT Therapy provides support for tic-like behaviors related to FND with occupational therapy strategies and training in Comprehensive Behavioral Intervention for Tics, also known as CBIT. Patients learn to shift attention away from their disabling symptoms to reduce the frequency and intensity through their own actions and abilities while also addressing daily stressors. FND can improve following a proper diagnosis of the disorder, reassurance that symptoms are not caused by an underlying medical problem, and validation that the symptoms are real. It is also important to recognize situations in which symptoms become more intense and to have a means to express emotional concerns openly. Daily exercise is also essential for physical and mental wellbeing.
TikTok Tics is a highly complex and unusual form of FND considered to be a mass sociogenic illness. That means that the disorder is spread from one person to another through close observation. In the past, this has occurred in person among community and friend groups. TikTok Tics is spread more widely and more rapidly via platforms such as TikTok and YouTube. Rather than having just one symptom ( such as a hand tremor) which is common in typical FND, TikTok Tics patients take on a multitude of vocalizations and physical behaviors within just hours or days. Most of these sounds and actions are very exaggerated and highly noticeable. The tic-like behaviors are also often identical to those seen in social media as well as in others who follow and post videos with tic content. Interestingly, most people with TikTok Tics are not alarmed by their behaviors or motivated to take the necessary therapeutic steps to stop them.
People with TikTok tics DO NOT have Tourette Syndrome.
Social media influencers with erroneous content related to tics and Tourette Syndrome have been linked to thousands of young people becoming overcome with what they think is Tourette Syndrome, even though they actually have a Functional Neurological Disorder (FND).
TikTok Tics / FND has been documented across the globe, with symptoms almost identical to the videos that have been viewed. Common actions include swearing, hitting their own heads, throwing objects, whistling, clicking with their tongues, poking or pushing their mothers, head jerks, giving the middle finger, and saying words such as "whoa," "uh oh." and "beans" repeatedly.
Racial slurs appear to not be said, although this sometimes occurs in people who have Tourette Syndrome, due to a condition called Coprolalia. Similarly, people with Tourette's tend to feel remorseful when they make a vocalization or say something that others may find offensive. People with TikTok Tics tend to respond with laughter or anger.
ln the United States. medical professionals are finding that this disorder occurs almost exclusively in middle to upper-class white girls and non-binary youth ages 10 to 22. Many patients with TikTok Tics have a significant history of social anxiety, ADHD, and OCD. Many also appear to have high functioning Autism and are immature in relation to their peers. It is also common for patients to have insufficient daily exercise and limited responsibilities at home. At this time, it is unclear if sleep disturbance related to being on screens late at night is related to this disorder.
They also have difficulty communicating emotional concerns such fears related to becoming ill from COVID and feeling isolated during the pandemic. The loss of school, extracurricular activities, and opportunities to just hang out with friends is replaced with social media.
It is believed that people with TikTok Tics view a massive number of "tic" videos prior to having vocal and motor behaviors of their own. Associating with others who have TikTok Tics quickly exacerbates the symptoms.
Social media use is frequently kept hidden from parents and medical providers, even after symptoms have spiraled out of control. It seems that this secrecy is in part out of fear of losing phone privileges and concern of no longer belonging to the online and in-person community of others with TikTok tics.
The patients believe content they have viewed on platforms such as TikTok and YouTube is directly related to Tourette Syndrome because the influencers state they have this medical condition although no proof is given. Most TIkTok patients do not know anyone who actually has Tourette's.
When symptoms occur, patients frequently reach out to other youth online and form a bond related to common behaviors including head jerks, Iip popping, tongue clicking, whistles, hitting or slapping their head or chest, saying words that are out of context, dropping items, throwing objects, touching others inappropriately, excessive blinking and more. Additional tic-like behaviors are also picked up within these support groups and passed on to others as a sort of psychogenic contagion.
Since TikTok Tics are a Functional Motor Disorder, which is a form of a Functional Neurological Disorder, the symptoms are real but tend to be much more closely related to a mental health concern than a neurological cause. So, even though the videos may not accurately portray what tics are, those with TikTok Tics believe they are ill. These behaviors become more prevalent when parents and peers pay extensive attention to them and during times of heightened stress. Patients benefit from finding ways to decrease anxiety, build in-person community, and address overuse of social media. It is especially important to unsubscribe from anything with tic-related content.
Healing also centers around addressing concerns related to the pandemic and the many stresses and losses it has caused.
Comprehensive Behavioral Intervention for Tics (CBIT) has been found to be the most effective therapeutic treatment for TikTok Tics. CBIT Therapy is an occupational therapy practice that utilizes video calls to treat patients in their homes, where most of the social media is consumed and stressors and supports can be identified. We train patients how to stop disruptive motor and vocal activity by doing a blocking technique called a Competing Response, which is also successful with traditional forms of tics. Daily exercise is another important component.
Teenager using a CBIT strategy called a competing response to prevent an arm tic.
Patients with sudden onset tic-like behaviors related to social media often believe they have Tourette Syndrome. This is because their movements and vocalizations are extremely similar to misleading social media influencers on TikTok, YouTube, and other platforms. These influencers push out multitudes of videos and claim the behaviors are due toTourette's and other disorders. Algorithms then feed these videos over and over to vulnerable people with similar profiles. Without personally knowing anyone who actually has Tourette's, the influencers' bizarre motor and vocal tic-like actions are believed to be legit. Empathy for the creators develops and they are seen as heroic for how they handle a once unimaginative diability. People with TikTok Tics tend to become highly attached to the influencers and feel that they have a strong connection, and sense of belonging with the other followers. Although the relationship is completely one-sided, the influencer brings both comfort and a sense of awe. Upon the realization that the videos are mostly inaccurate and insincere, instead of a mission to advocate for the disability community, some people with TikTok Tics feel duped. They wonder how they have been misled so easily and become angry that they were hurt in the process.
If you or your child seems to have TikTok Tics, know that there is help and this condition is treatable. A good place to begin is a pediatrician, neurologist, mental health specialist, nurse, social worker, educator, or occupational therapist specializing in CBIT.
Please do not turn to social media for answers, since much information on this topic is incorrect and is just click bait.
One place to learn more is this broadcast by WBUR called Can you really get tics from Tik Tok?
Below are articles guiding the way to understand and treat this disorder.
On 10/17/21 The Wall Street Journal published an article on sudden onset tics related to social media.
The Verge followed up with an important article called TikTokTics Are A Symptom of A much Bigger Problem.
Also of interest is The Guardian's article 'The unknown is scary': why young women on social media are developing Tourette's - like tics.
Another important read is How TikTok has become a dangerous breeding ground for mental disorders.
Sudden onset tic-like behaviors related to social media has also been explored by the Tourette Association of America in the article Rising Incidence of Functional Tic-Like Behaviors. What's happening? Why now?
Please also view the research articles below and be on the lookout for our upcoming report in collaboration with specialists from Boston Children's Hospital
According to Statista Digital Economy Compass, the 2021 global average daily time spent on social media per internet user is 142 minutes. Algorithms control much of what is being seen and causes users to be flooded with messages that normalize serious health concerns. Take charge by deleting social media accounts, cancelling alerts, setting screen time limits, and finding something more hands on and productive to do with your time. Social media has some benefits, but over use and misuse is associated with greater isolation, depression, jealousy, anger, anxiety, and other emotional and physical concerns.
In 2020 the Calgary Tic Disorders Clinical Registry referred to TikTok Tics as Functional Tic-Like Behaviors (FTLBs) and is tracking the trend closely. The condition, which is related to both extreme anxiety and exposure to erroneous tic content is extremely disabling and even life threatening. Misdiagnosis leads to further complications related to medications and recovery.
TikTok Tics is possibly associated with a psychological condition called a parasocial relationship
Binge-watching videos created by an engaging social media influencer can lead to a false sense of knowing them and the belief that they are your friend. This fascination with the influencer may be due to social isolation and loneliness. The bond occurs even though the relationship is entirely one-sided and will always be that way. The influencer does not watch videos made by you or know anything at all about you, even though she may share intimate and sometimes embarrassing details about her life. You may also feel like part of the influencer's family or friendship group if they are also introduced in some of the videos.
Some people in parasocial relationships may adopt their influencers fashion, hairstyle, beliefs, room decorations, and even what seems like a disabling condition. Others may be tempted to support their influencer financially by donating money to help them continue turning out more videos.
Learn more about parasocial relationships here.
TikTok Tics are an outward expression of inward distress. Patients with this disorder benefit from a neurological evaluation, mental health support, and Comprehensive Behavioral Intervention for Tics.
On 10/03/07, South Park released Le Petit Tourette, shaming those who fake tics and Tourette Syndrome. You can watch the full episode here. The writers touched on many important (and sometime adult-oriented) topics related to Tourette Syndrome. People with TikTok Tics are thought to be not faking it, even though they may be following people on social media who are. It is important for parents to take the responsibility to help their children discontinue watching all videos related to tics. It is also important to understand that TikTok tics is a serious disorder that involves tic-like behaviors (such as a neck jerk) but also much more dramatic behaviors such as throwing things, tremors, feelings of numbness, paralysis, and fainting. These conditions are often also viewed in popular TikTok and YouTube videos related to tics.
CBIT Therapy is a telehealth occupational therapy practice that collaborates with clinicians at UMass, MGB, Boston Children's Hospital, and many practices throughout NY, MA, NH, ME, and VT. A HIPPA compliant Google Suite platform is used for video calls. Parents are required to participate in all therapy sessions along with their child.