CINCINNATI, OH
During the 2020 pandemic, TikTok was our primary source of escape and entertainment for many people, including teenagers like me. Since the TikTok algorithm for the "For you Page" feature provides videos based on your likes and interests, I could watch videos about people living with tourettes.
TikTok has brought Tourette's into the spotlight, allowing users to share their experiences and educate others about the realities of living with this disorder. I was able to learn about this condition through a first-person account. This article will explore Tourette's syndrome, its symptoms, the science behind it, and some statistics about Tourettes.
Tourette (too-Ret) syndrome or Tourette's syndrome is a common neurodevelopment disorder that begins in childhood or adolescence. It is a disorder that involves repetitive movements (motor tics) or unwanted sounds (phonic tics) that cannot be easily controlled.
Tourette's is defined as a part of a spectrum of tic disorders, including provisional and chronic tics. French neurologist Jean-Martin Charcot named Tourette syndrome for his intern, Georges Gilles de la Tourette, who published 1885 an account of nine patients with a "convulsive tic disorder."
Tourette's is a misunderstood and stigmatized condition often mentioned in the popular media. The tics often go unnoticed by the casual observer. Tourette's was once regarded as a rare and bizarre syndrome and has popularly been associated with coprolalia (the utterance of obscene words or socially inappropriate and derogatory remarks). It is no longer considered rare, but it is often undetected due to the wide range of severity, with most cases classified as mild. You can think of tourettes as continuous and uncontrollable sneezes. You might think of tricks like pushing your tongue to the roof of your tongue to stop the sneeze, but the sneeze pushes through whether you like it or not. Sometimes people can stop themselves from doing a specific tic for a while, but it's hard. Eventually, the person has to do the tic. Depending on the type of tics a person has and how long the tics last, a person might be diagnosed with Tourette syndrome or another kind of tic disorder. Extreme Tourette's in adulthood though sensationalized in the media, is rare, but for a small minority, severely debilitating tics can persist into adulthood.
SYMPTOMS AND DIAGNOSING
Symptoms of tics usually begin when a child is 5 to 10 years of age. The first symptoms often are motor tics in the head and neck area. You might be able to recognize physical symptoms like repeatedly blinking, shrugging, and yelling out unusual sounds or offensive words. These common symptoms are typically preceded by an unwanted urge or sensation in the affected muscles known as a premonitory urge, which can sometimes be suppressed temporarily and characteristically change in location, strength, and frequency. Tourette's does not affect intelligence or life expectancy.
Although the media often portrays people with TS as involuntarily shouting out swear words (Coprolalia) or constantly repeating other people's comments (echolalia), these symptoms are rare and are not required for a diagnosis of Tics. There are no specific tests for diagnosing Tourette's. It is not always correctly identified because most cases are mild, and the severity of tics decreases for most children as they pass through adolescence.
According to the Diagnostic and Statistical Manual of Mental Disorders, Tourettes may be diagnosed when a person exhibits multiple motor tics and one or more vocal tics over a year. There is no cure for Tourette's and no single most effective medication. In most cases, medication for tics is not necessary, and behavioral therapists are the first-line treatment. Discussions with adults who have Tourettes syndrome reveal that not everyone wants treatments or a cure, especially if that means they may lose something in the process.
SCIENCE BEHIND TOURETTE'S
In the 2010s, neuroimaging and postmortem brain studies and animal and genetic studies made progress toward better understanding the neurobiological mechanisms leasing to Tourette's. These studies support the basal ganglia model in which neurons in the striatum are activated and inhibit outputs from the basal ganglia. Tics are believed to result from dysfunction in cortical and subcortical brain regions: the thalamus, basal ganglia, and frontal cortex. Neuroanatomic models suggest failures in circuits connecting the brain's cortex and subcortex; imaging techniques implicate the frontal complex. Genetic epidemiology studies have shown that Tourette's is high and 10 to 100 times more likely to be found among close family members than in the general population.
STATISTICS
Tourette's is no longer considered rare; about 1% of school-age children and adolescents are estimated to have Tourette's, and coprolalia occurs only in the minority. The amount of children that have TS is unknown. Studies that included children with diagnosed and undiagnosed TS have estimated that 1 out of every 162 children (0.6%) have TS. A CDC study using parent-reported data found that 1 out of every 333 (0.3%) children 3-17 years of age in the US have received a diagnosis of TS; this is about 174,00 children in 2016-2019. This suggests that about half of children with TS may not be diagnosed.
44% have been reported as having moderate or severe TS
Boys were about three times more likely to have TS than girls
Children from all racial and ethnic groups or socio-economic backgrounds had similar estimates for diagnosis of TS
Children 12-17 years of age were more than twice as likely to have a diagnosis of TS than children 6-11.
Tourette Syndrome is a complex neurological disorder that affects individuals in various ways. It is essential to continue research and education about Tourette Syndrome to reduce stigma and support those affected. It is also necessary to increase awareness and understanding of Tourette Syndrome to reduce stigma and promote acceptance and inclusion. To learn more about Tourette's visit: https://tourette.org/.
References:
Tourette syndrome - Wikipedia. https://en.wikipedia.org/wiki/Tourette_syndrome
Societal and cultural aspects of Tourette syndrome - Wikipedia. https://en.wikipedia.org/wiki/Societal_and_cultural_aspects_of_Tourettesyndrome
What is Tourette Syndrome? | CDC. https://www.cdc.gov/ncbddd/tourette/facts.html
Data and Statistics on Tourette Syndrome | CDC. https://www.cdc.gov/ncbddd/tourette/data.html
What is Tourette Syndrome? | MCSN. https://mcsn.mindinstitutes.com/what-is-tourette-syndrome/
Tourette Syndrome and Tic Disorder: An ADHD Clinician’s Guide. https://www.additudemag.com/tourette-syndrome-tic-disorder-children-symptoms-treatment/