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Tic-Talk: A discussion on the stigma and stereotypes behind Tourettes Syndrome

by AtlasW

 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.

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119 Reviews

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Wed Jan 08, 2020 4:58 am
Clairia says...

This is so late, but shane; thank you so much.

My brother was diagnosed with tourettes last year and reading this helped me learn more about what he struggles with. I can't imagine how frustrating it must be for him; his fight has been very lengthy and filled with ridicule from those around him. His tics have improved with the help of medication, but it's still something he has to battle on a daily basis. I'm so proud of my brother and also very greatful that you wrote on this topic. It is overlooked by very many, (as fraey stated in the previous review) and to have created such a detailed description of the syndrome to help educate those unbeknownst to the harm it brings to its victims is so important.
I appreciate this so much. My love to you!


AtlasW says...

thank you so much! i was diagnosed with tourettes about a year ago, so this issue is one i hold very close to me, and i'm sure you do as well, having a sibling with ts. if you ever want to talk about ts or have any questions, don't be afraid to shoot me a pm! and thank you again for the kind words. they mean a lot to me, and i'm glad i was able to shine some light on this issue.
(also, i go by atlas now :mrgreen:)

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359 Reviews

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Mon Feb 11, 2019 7:05 am
EditorAndPerks wrote a review...

Hi there. I've read this a couple of times, but I wanted to pop by and give a review on this to boot it out of the Green Room.

First off, I do enjoy spending some time over Tourette's because this is an important topic, and a lot of people do seem to dismiss this or are ignorant of what the syndrome really consists of. I've read at least one book with a "cliche" side character that couldn't stop "cursing" and it was kind of frustrating to read (it was actually from An Abundance of Katherines by John Green) because that's not the typical symptom really of Tourette's overall. I think there are many interesting pieces in this essay, especially some of the citations, which is a good thing. The thesis is a little-muddled covering the macro-version idea of "wanting to educate the public of how Tourette's really functions as" which is at least understandable, but it is a wide breach. The inclusion of specific examples really helps form this essay together, and I think it works well overall.

I like that alongside the information that so many media types portray Tourette's incorrectly, from movies, and that the feeling is even prominent in regular people's interactions, there is hope in a place like Camp Twitch and Shout. That's a very inspiring organization and I'm happy that that exists, to not only be there for the sake of younger people in getting a sense of belonging and family to a population that deserves the same opportunities as those without the syndrome. That's just a very frustrating fact that so many people will walk away from a portrayal of someone with Tourette's only to believe that's how it really is, which is horrid, really. Especially as that "not knowing" can be prominent amongst younger people as well since they're not able to be exposed to actual information about the syndrome.

I'm hopeful that with the internet at most of the population's fingertips, people can learn more about Tourette's and educate themselves with correct information. It's really telling that in just normal conversations people could learn the truth. I enjoyed this essay a lot, with all of the citations (I'm pretty bad at structure/formatting) and the rather sad examples from ordinary people. I think you did a good job on this - it was very informative and did leave a nice little positive ending to hope that more camps like Twitch and Shout can exist across the country and help more children/adults with Tourette's. Here's to hoping. Overall, nicely done! Hope you got/get a nice grade on this essay from your teacher.

Until next time.

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26 Reviews

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Tue Jan 08, 2019 4:38 pm
Siddharth says...

Great work Shane. There is also an amazing Bollywood movie "Hichki" based on a teacher who has tourette and how she overcomes her hardships. You must definitely watch it...

Really loved your work and it literally gave me goosebumps.

Great work & keep writing

Sid 😁

AtlasW says...

Thank you! I've watched Hitchki, it's a wonderful film. :)

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59 Reviews

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Mon Jan 07, 2019 9:32 am
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SirenCymbaline says...

I'mma start by disclosing that I am not knowledgeable about Tourette's. As your essay is aimed at people who aren't already knowledgeable, I hope my impressions will be helpful.
I'm familiar with some of the experiences of alienation, as they relate to autism, but I'm not quite as familiar with tics, and I'm aware that as a whole, it's a very different disorder.

I'm mainly sorry that this contains no criticism. ShadowVyper's reivew is pretty good for that. I hope that's enough.

The example of Camp Twist and Shout makes a good starting picture. I've never really pictured what it would look like for these individuals to all be together, feeling safe around each other, and it means that when you talk later about the discrimination they face, I can more easily picture the people it affects, and why they need programs like that.
Using it at the end as a bookend is a nice touch, too.

Before reading this, Tourette's felt like a word, a word that does apply to people, but only a word. I knew that the stereotypes I'd heard of from media were most likely exaggerated, and untrustworthy, and as an autistic person I tend to avoid depictions of any mental disorder in media so I can't be let down, but I never actually sook out real information on Tourette's, either.

This made me reconsider that. They're a part of the same world as me, and I don't have to bother to learn about them, but they do have to live in this world. I'll never learn about every disorder in the world, but that's no reason not to at least read the wiki page for this one.

I suppose I should file this under 'comment' rather than 'review.' But I think 'this made me think about people with Tourette's as people as opposed to just a word' was something close to what you were looking for.

I think you did say you were going to include two more paragraphs later, what were they about, roughly? I'm curious.

I've never really seen someone take on the feeling of wanting to keep your disorder to yourself, because you don't like it interfering with the way people see you. The way it at the very least makes things awkward. Even if you're proud of who you are, and wouldn't change your disorder for anything, you can still want to hide it, still hate the way it influences the way people can see you. I haven't told anyone who doesn't already know in a long time, so I don't know what people think, but I'm hesitant to tell anyone who doesn't know because it always makes things awkward, and it makes me feel like a child.

It's nice to know that there are people who notice this feeling, that notice the Tourette's jokes in movies and cringe along with the people it's exploiting.

I was particularly feeling the bit about how it bothers them that even non-humourous media about them still chooses to focus on only the most extreme, dramatic instances of the disorder. How even when it's not a joke, it still has to be entertaining, in some way or another. They don't have the right to be boring. I don't know if that made sense.

I don't know. I'm just happy that you noticed. And I think it's about time I did some actual reading up on this condition that I say I sympathize with.

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Mon Jan 07, 2019 2:32 am
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ShadowVyper wrote a review...

Hey Shane,

Shady here with a review for your essay, as I promised. My style tends to be to comment on anything that stands out to me as I'm reading, and then give a general summary of my thoughts about the piece at the end. Let's get started...

Brown University Child and Adolescent Behavior Letter as “sudden, rapid, recurrent, nonrhythmic, stereotypical, purposeless movements, or vocalizations.”

I'm not sure how citations work for the form of essay you're turning in, but for like APA you're also supposed to have the year after the quote. Like:

According to ______ as "______" (2004).

Or even like:

It is "____, ____, ___." (Source, 2004).

You get what I'm trying to say? Just make sure that you are citing your sources appropriately. And I don't see a bibliography here but I assume you have one?

Both within and outside the media, including YouTube and television, have a false understanding of this neurological disorder.

This sentence isn't quite grammatically correct. Either that "have" after the second comma needs to become a "there is" or a "people" needs to be inserted in front of that have. But how it reads now isn't quite right.

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,

Okay so is this entire bit after "article" that I quoted the title? Or is the title just "Ticced Off!"? It's not super clear with how you have it written. I would look up, based on which ever citation format you have to use, how you should have the title of an article written. I /think/ general practice would be to italicize the title, but I'm not 100% sure that that's correct so you should definitely look that up -- but I am pretty sure that this is not how it's supposed to be.

“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).

So if this was a normal review I wouldn't even point this out -- but since this is (presumably) for your grade I will. You need a space between "the" and "most" in the bit I quoted above. Also, is the (Tourette Syndrome) part of the interview or is it something that you added so that we would understand what he's talking about with his TS abbreviation?

Because if he wrote it like that and you are doing an exact quote then you are fine -- but if /you/ added the explanation then it should be in brackets [] not parentheses () because brackets indicate the author of an article added something to a quote for clarification where parentheses are just an aside that can be used by the person who first came up with what the second author is quoting.

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,

I'm not sure what's up with your punctuation here with the '' and : but I'm really not sure what the title is and what you are trying to convey here. I'd definitely edit to make it clearer what this is supposed to mean.

and would in hand make self-degrading comments

I'm not sure I understand the expression "would in hand" here. Like... it almost vaguely seems like an expression I've heard before? But it doesn't seem like something that would be smiled upon in academic writing.

~ ~ ~

Okay! I really liked this essay! I actually learned a lot from it, haha. I am guilty of being one of those people who is informed about Tourette's completely from media alone. And obviously I'm not a jerk who attacks people for a neurological disorder and mocks them like a lot of people do, I still didn't really know much about the condition and I literally don't think I've ever thought about how hurtful all that mockery must be to people who suffer with Tourette's in real life. That's a really sad thought :(

Let me know if you have any questions about my comments or need any more help! I was intentionally harsh with this because I figured that just being like "Good essay!" isn't actually going to help you at all, but I did think it was good, and I hope you do well with it!

And, you probably know this already, but you probably should delete it from YWS before you turn it in to your teacher. I know some teachers have like a web-wide plagiarism checker and you don't want to take a chance of having yours coming back 100% plagiarized because the checker had a hit from where you posted it here lol.

Good luck!

~Shady 8)

It's unsettling to know how little separates each of us from another life altogether.
— Wes Moore, The Other Wes Moore