Every year, children and teens aged 8 to 17 from all over the United States travel to Camp Twitch and Shout in Winder, Georgia. This week long camp hosts a variety of activities one will usually see at a typical summer camp including canoeing, archery, and rock climbing, but there is one thing that sets it apart from just about every other camp out there, and it can be seen as soon as one walks through the front doors. Kids and teens fill the room, not one of them entirely still nor quiet. A nine year old boy jerks his head toward his chest and grunts. An older girl blinks sporadically, a grimace cutting through the excited smile on her face. A volunteer suddenly shouts out and shoots his arm into the air. All of these people, and everyone else at Camp Twitch and Shout, have Tourette’s Syndrome, a disorder characterized by tics, which are described in the Brown University Child and Adolescent Behavior Letter as “sudden, rapid, recurrent, nonrhythmic, stereotypical, purposeless movements, or vocalizations.” While everyone at Camp Twitch and Shout is accepting of each others’ Tourette’s, the outside world isn’t as forgiving. Both within and outside the media, including YouTube and television, have a false understanding of this neurological disorder. Whether it be through jokes and comics or the distribution of incorrect information, most people seem to have a skewed perception of Tourette’s Syndrome. The stigmas and stereotypes attached to Tourette’s are present both on and offline, affecting those who are diagnosed with the condition in many ways, but these incorrect perceptions can be corrected through educating those who are misinformed or who simply do not know about the condition.
Tourette’s Syndrome is most commonly stereotyped in the media, most notably through the popular video uploading site, YouTube, and television programs. Upon entering the keyword “Tourette’s” into YouTube’s search bar, suggestions like “tourette’s funny,” “tourette’s guy,” and “tourette’s swearing,” are some of the first to show up. The videos that are available under these keywords are primarily jokes poking fun at this legitimate disorder. There are movies like Joel Gallen’s “Not Another Teen Movie” and Mike Mitchell’s “Deuce Bigalow: Male Gigolo” that portray Tourette’s Syndrome as nothing more than loud outbursts of obscene language. According to Estelle Winters’s article Ticced Off! An investigation into the societal perceptions and stigma that surround Tourette Syndrome and the effect this has on those who live with the disorder, “Eighty six percent of surveyed people with Tourette’s agreed that it is often portrayed as being comedic or greatly exaggerated in the film industry” (14). Winters goes on to explain that while many of the people who completed that survey often attempt to ignore the incorrect comedic portrayals of Tourette’s in the media, they often feel sad, angry, and misunderstood because of them. When Winters surveyed parents of children with Tourette’s, she found that while some acknowledged that their children were too young to understand the incorrect and often offensive portrayals of their disorder, they still found it troubling because the media’s representation of Tourette’s affects society’s view of it, and they didn’t want their children to be exploited because of their conditions. Winters also found that the media, when creating documentaries and news stories on people with Tourette’s, tends to focus on the most extreme cases of the disorder. When she interviewed the manager of Tourette’s Action in the UK, he said:
“The most interesting thing for media companies is that they want to find people with themost extreme forms of TS (Tourette Syndrome) as it makes a more interesting story for TV or film. I think sometimes that people with milder TS may get a little frustrated that this receives such focus” (15).
Winters concludes this portion of her study with the results of another survey. She reveals that a total of eighty seven percent of the individuals she surveyed without Tourette’s had learned about it through exaggerated media perceptions. This method of informing the public of a legitimate disorder is seriously damaging to the individuals with the condition. For instance, the most well known symptom of Tourette’s Syndrome is coprolalia, or swearing tics. Coprolalia is most often portrayed in the media as a comedic device, when, in reality, only 10 to 30% of people with Tourette’s have coprolalia (Malli).
There are also many stereotypes and stigmas thrust upon Tourette’s and those diagnosed with the disorder by their peers. In Melina Aikaterini Malli and Rachel Forrester-Jones’s study, ‘I’m not being rude, I’d want somebody normal:’ Adolescents’ Perception of their Peers with Tourette’s Syndrome: an Exploratory Study, adolescents with little background knowledge on Tourette’s Syndrome were questioned. It was discovered that they had similar perceptions of the condition. Nearly all of the participants assumed that Tourette’s patients were unable to carry out tasks like completing homework and getting a job. They were also reluctant to form relationships with their peers with Tourette’s. One participant said: “When I’m seen [sic] person that has Tourette’s syndrome I feel very scared. I know they will not going to do anything but how they is acting scares me [sic]” (292). There were many other responses from other participants that were similar. However, it is to be noted that the majority of participants understood that the tics Tourette’s Syndrome results in are involuntary, and they refrained from using any rude or hateful language towards Tourette’s patients. Milla and Forrester concluded at the end of their study that the reasoning behind the young participants' perceptions towards Tourette’s was a lack in accurate education about the disorder, and suggested that, in order to change these perceptions, more accurate, less joke-filled sources be provided (301).
As one may imagine, being stereotyped in such a way because of this neurological disorder can be rather taxing, mentally. In another one of Malli and Forrester-Jones’s studies on Tourette’s Syndrome, Stigma in youth with Tourette’s Syndrome: a systematic review and synthesis, the effects of people without Tourette’s negative perceptions of the disorder are described. It was reported that the majority of adolescents with Tourette’s had a higher risk of aggression. One individual interviewed described his experience with bullying because of his Tourette’s:
“‘They like to call me Tourettehead and stuff, I just end up kicking them or something, as I just get really angry and start kicking them and they start punching me, doing it back. And I end up falling out with them’” (136).
This testimonial of bullying is just one of many presented throughout the study, and an elevated sense of aggression is also mentioned by these individuals. All of these adolescents are burdened by the judgments made by their peers, and it causes them to act out in violence. People with Tourette’s are also known to have a higher risk of developing depression. According to David C. Houghton and his colleagues from the Journal of Developmental and Physical Disabilities, “Symptoms of depression, anxiety, and stress are higher in TDs than in the general population [because of peer victimization]” (353). Houghton et al. continue on to explain that, because of the judgments brought on by their peers, children and teens with Tourette’s Syndrome have higher rates of suicidal thoughts and tendencies than their neurotypical peers.
The emotional health of an individual diagnosed with Tourette’s can also be affected by the stereotypes affiliated with the condition. As found in Milla and Forrester-Jones’s study, Stigma in youth with Tourette’s syndrome: a systematic review and synthesis, many of the children and teens interviewed had a negative view towards themselves, and would in hand make self-degrading comments, like John, a young adult with Tourette’s. When asked why he thought he wasn’t able to find a job, he told the interviewer that he was too stupid because of his Tourette’s. There were several other responses like John’s, all of which contained comments that showed little to no self-confidence in the interviewee. Coupled with self-degradation, many Tourette’s patients were noted to have a fear of forming close relationships with neurotypical people. One individual said:
“‘If I do noises they’re like ‘oh that’s Tourettes isn’t it’ and I think [few words inaudiable] and I’m scared they’ll start thinking I’m weird and my relationships will go. I’m scared of that’” (136).
However, these imputations can be resolved through the education of those who spread misinformation about Tourette’s Syndrome, whether they are aware they are doing so or not. In Houghton’s study, it is concluded that “(a) providing psychoeducation in order to promote awareness of TDs as medical conditions, (b) dispelling common myths about tics, and (c) fostering empathy for individuals with tics” (354) are the first steps that must be taken to improve the quality of life and other’s understanding’s of those with Tourette’s. A plethora of other researchers agreed, including Malli, Forrester-Jones, and Glynis Murphy. Their study on neurotypical youth’s perceptions of their peers with Tourette’s noted at the end of their study that what they called “anti-stigma interventions” needed to be taken to help improve the general population's view of the condition. Also, in a study composed by Deidre Aileen O’Hare titled, The Impact of Tourette’s Syndrome on the functioning of young Australians: the roles of tic severity, comorbid diagnoses, and attachment to peers, O’Hare concludes that there is extremely little information that portrays Tourette’s in an accurate light, saying:
“The expansion of the TS research agenda and the education of professionals has, therefore, been a major goal of organizations such as the Tourette’s Association of America (TSA) and their Australian counterpart, the Tourette’s Association of Australia (TSAA)” (9).
Educating individuals who do not know accurate information about Tourette’s Syndrome is something that could substantially improve the lives of so many people living with this condition.In summary, the stereotypes presented both on and offline about Tourette’s Syndrome are affecting people with the condition in many ways, but, by educating those who spread misinformation or who simply don’t know much about Tourette’s, these stereotypes can be erased. Tourette’s patients can be seen as people with meaningful lives that aren’t defined by their condition. Instead of making jokes about Tourette’s, people could raise awareness instead. Then, everywhere could be like Camp Twitch and Shout: accepting, caring, and a place where people with Tourette’s can be seen as more than their tics and the stigma surrounding them: they can be seen as themselves.