Kat Biddle
Mr. Martinous
Composition II
28 November 2012 Life’s a Twitch: The Misconceptions and Personal Impact of Tourette Syndrome Georges Albert Edouard Brutus Gilles de la Tourette was a French physician who today would be known as a neurologist and the physician whose name is the eponym for Tourette syndrome. Tourette syndrome was discovered more than a hundred years ago, in 1885, by Gilles de la Tourette while he was a physician at the Salpetriere Hospital in Paris, France. Tourette syndrome (also called, Tourette's disorder, Gilles de la Tourette syndrome, GTS or, simply Tourette's or TS) is an inherited neuropsychiatric disorder with onset in childhood, characterized by multiple physical (motor) tics and at least one vocal (phonic) tic. These tics characteristically wax and wane, can be suppressed temporarily, and are preceded by a premonitory urge. Tourette's is defined as part of a spectrum of tic disorders, which includes transient and chronic tics. (Mashpedia.com) Tourette syndrome (TS) is easily misunderstood and as a society we scrutinize these people for having bad behaviors or parents for not being able to control their children. Tourette’s can impact a person/family’s life socially and emotionally because of the misconceptions of Tourette’s. With the first symptoms of TS appearing in early childhood, they become more apparent closer to adolescences and TS can be a chronic lifelong condition with no cure, with progressing symptoms appearing in their early teens. Tics show signs of improving by mid-teens to early adulthood for the majority of individuals with TS, and for the lucky few who can actually become symptom free. The risk factors and cause of TS is unknown, though genetic studies have shown that TS is an inherited dominant gene with a fifty percent chance of a parent passing the gene onto their child. TS can be triggered by the abnormal breakdown of a chemical in the brain called dopamine, which controls the flow of information from other areas of the brain. Research is being done to see if this disorder occurs as a result of multiple genes interacting with environmental factors such as a mother drinking alcohol while pregnant, complications during child birth, low birth weight, and infection. Research is being done into whether children effected with "strep "infection are more likely to develop tics. (CDC) The major symptom of TS is tics. Tics are involuntary muscle twitches and twitches are involuntary sudden movements of part of the body. There are three classifications of tics; motor, vocal, and complex. Motor tics can involve in any muscle of the body and are sudden, jerk-like contractions of any muscle. The most frequent motor tics occur in the head region with sixty percent of individuals with TS reporting the first tic appearing as rapid eye blinking. The following graph, Figure 1 shows the most common motor tics and their frequencies. Figure 1: “Most Common Motor Tics”

Figure 2: “Most Common Vocal Tics”
Vocal tics are any non-word noise that is involuntary and repetitive. Throat clearing is the most common vocal tic, and easily passed off as an allergy or nasal drip. Vocal tics, like barking, animal noises, or spitting can be difficult for parents, teachers, and spouses to deal with since its socially unacceptable and disgusting. The following graph, Figure 2 shows the most common vocal tics and their frequencies. Complex tics involve more than one muscle and have what are called stereotyped movements, which are complex movements such as picking at sores, foot stamping, or a combination of tics that can be so extensive that it borders on the edge of compulsive behavior. The symptoms and characteristics of tics can vary from person to person, symptoms usually start when a child is between the ages of five to ten years old, with the first of the tics starting in the head and neck area. The types of tics a person have and how often that a person has them will change over the course of time. Tics are not always obvious, symptoms can appear, disappear, and reappear, for no medical or physiological reason over a period of a few days to months. TS is a chronic condition that usually appears before the age of ten and decrease in adolescence and early adulthood, sometimes disappearing totally, there are the exceptions in everything and with TS there are the few individuals that tics can become worse during adulthood. The most common statement that TS individuals have is that they can feel a sensation before they have an urge to tic. They can feel this tension building in their body and then have an urge to release it thru a tic; this is known as a "premonitory urge." The major characteristic of tics is that they are suppressible, which means individuals can restrain themselves from ticking, but by doing so it just causes the tension to build and the longer time frame that the tics are suppressed, the longer that it will take to release the pent up tension. Another major problem with suppressing tics is it inhibits a diagnosis. If a Physician is not familiar with TS and a child can suppress his/her tics then the parent looks like they are manifesting symptoms or are a little crazy and the child goes undiagnosed. The second most noted characteristic of tics is the waxing and waning of symptoms. Waxing is the increasing and waning is the decreasing of intensity or strength of tics, also the changing of one tic to another. Stress is a big culprit when it comes to the frequency and intensity of tics. That's why there is an increase in the amount of tics in the beginning of the school year, around Christmas vacation, and especially at test time. The good thing to this is that tics improve during the summer months when there is no school and no stress. There is not an exact number of know cases of TS in the United States. According to the Centers for Disease Control and Prevention (CDC) through a study on TS they found that three out of every one thousand kids between the ages of six and seventeen living in the United States have been diagnosed with TS, this is equal to about 148,000 and other studies have estimated the rate as high as six children per thousand. TS is not picky when it comes to racial and ethnic groups, no studies have proven one to be more prone to the TS gene than another group. There is a significant difference in the amount of boys that get TS than there are in the number of females, three times as many. A diagnosis of TS is twice as high in non-Hispanic Whites than Hispanic and non-Hispanic Black people and in children ages twelve to seventeen than in ages six to eleven years of age. Among these children with TS twenty-seven percent have reported to moderate to severe forms of the condition. More people have heard about TS than actually know what it is; how a person really acts like who has it, or how it affects the person. There are four common misconceptions about TS that people seem to associate with this condition. The first one is TS is a swearing disease? Yes, “The compulsive swearing in Tourette syndrome is one of its most dramatic symptoms.” (Comings, 19), but swearing or the medical term to describe it called coprolalia, it comes from the root words copro meaning feces and lalia meaning lips. Or in modern layman terms talking shit. Coprolalia is one of the most publicized symptoms of TS, however in reality less than one-third of people diagnosed have this symptom.. Coprolalia is words and phrases that are culturally “taboo” or not suited or accepted in society. It is usually expressed out of emotional context or because of a social experience and may be in a tone that is above the volume of the conversation. It can be a single word or a complex phrase, the person with this may repeat the word mentally, rather than saying it our loud, which can be very disturbing to the person with TS. Another interesting fact is that the words are often not completed like they are trying to suppress it so only the "fu" or "sh" will come out. The three most common words for coprolalia are fuck, shit, and piss. The second is that people with TS only make odd noises or jerks and twitches? Although there is no "typical" case of TS, the condition follows a fairly reliable course in terms of the age of onset and the severity of the symptoms. But TS is not only about sudden jerks and twitches, seventy-nine percent have also been diagnosed with at least one additional mental health, behavioral, or developmental condition, that range from Attention Deficit Hyperactive Disorder (ADHD) which coexists in about sixty-six percent (Kadesjo, 2000) Behavioral or Conduct problems, forty-three percent; Anxiety problems, forty percent; Depression, thirty-six percent; and Developmental delay affecting the ability to learn, twenty-eight percent of the diagnosed cases. The most startling fact is that Obsessive Compulsive Disorder (OCD) coexists in about one-third of people with TS. But, there is no requirement that there has to be a comorbid condition present to get a diagnosis of TS. The third misconception is that TS is a rare disorder. (CDC) TS was once thought to be a rare and strange disorder, as it might no longer be considered a rare condition it may not be correctly diagnosed because most cases of TS are mild and there are no specific medical or screening tests that can be used to aid in the diagnosing. Diagnosis is made based on observation of the individual symptoms and the family history. The last misconception is that individuals with TS can control their tics? Yes, tics can be suppressed. In a clinical setting you would not be able to pick out the individuals who have TS, they can suppress them to some degree but it comes at a price. Voluntary suppression causes a growing discomfort and distraction, and can be more debilitating than the original tic was. Suppression can cause anxiety and the inability to focus on the tasks at hand. It can also cause what is referred to as the "rebound phenomenon" meaning when they are at a safe place to release their suppressed tics they happen at a more intense and frequent occurrence. The ability to suppress tics is one of the diagnostic criteria of TS and not a reason to reject it. (Comings, ) Despite the likelihood Tourette symptoms will disappear in late adolescence to early adulthood it’s presence during a developmental period for a person's identity will impact that individual for the rest of their life. When TS symptoms first appear, they come in at a point in their lives where they are trying to learn or understand who ones "self" is. Having intent to behave in a certain way helps a child to learn about their desires, values, and discover their personality in a sense, which is critical to the development of personal identity. These sudden invading tics are beyond the control of the child undermines what their intentions where directly impacting their personal identity. Children that have TS at the age of six and seven when symptoms set in; can attribute their tics to being possessed by "other beings" and leaving them feeling powerless. The child will spend increasing effort to control the muscles as to not feel like they are being controlled by their "other beings" so they don't have to admit defeat. This is the time that children are learning about themselves through caregivers and interaction with peers. When TS symptoms start to appear to the outside world of these children it is often, met with rejection and unfavorable reactions. Tics for TS children become a subject of ridicule and bullying which cause emotional damage to decimating their view of themselves. The tics that they suffer may seem odd to kids of their own age or frighten them resulting in isolations or social rejection. Studies have shown that children with TS see themselves as less attractive, less popular, more withdrawn, and more aggressive. (Markova). TS especially becomes a problem when the child reaches their adolescences, this is a point in their life that they have a peeked interest and awareness into their bodies. Studies show that TS adolescences can have an impaired academic and social functioning, lack of self-esteem, and decreased wellbeing. (Raz et al.). The way that TS affects a person's identity varies from person to person. It doesn't always have to be something negative. One gentleman that has severe TS to the point that he was incapacitated every few seconds by multiple tics of extreme violence stayed positive and creative. He was highly intelligent and used the strength of his character to help him complete college along with developing loving relationships with family and friends. When you think of TS you think of someone probably yelling or screaming obscenities, which goes to show you how much the media has of an influence over our thoughts without us really thinking about it. The media wants to focus on swearing of TS because; in honesty random out of the blue swearing is funny-unless you are the person that cannot stop swearing. That is when it is not something to joke about anymore. It is hard enough for a person with TS to function in today's society and walk down our streets without groups of people commenting on them to stop "ticing" or "swearing" in public, but when we introduce people like ‘Tourettes Guy’ pretending to have Tourettes when is obviously does not have and needs to have his head examined , going into stores and public places with a video camera and purposely verbally assaulting everyone he sees, he uses correct sentence structure for the most part, and his sudden swearing his timed pretty good. This guy has become popular on sites like YouTube and Google Video streaming his demeaning videos, the media has aided in giving TS a stereotypical outlook of swearing outbursts and bad behavior. Some good movies that are examples of stereotyping TS in movies are “Matchstick Men”, "What about Bob" , “The Big White”, “The Boondock Saints”, “Wedding Crashers”, “The Wedding Singer”, “The West Wing”, “Shameless”, and "Deuce Bigalow, Male Gigalow", they depict coprolalia, despite the fact that it only shows up in one of ten cases of TS diagnosed, it is firmly planted that it is associated with every case of TS in the media. There have been several documentaries that have attempted to portray TS accurately and to help advocate the understanding of individuals with Tourette’s, some of these include “I Have Tourrette’s but Tourette’s Doesn’t Have me”, which received an Emmy for its portrail of children between the ages of six and thirteen that have TS and it gave a simple overview of the disorder. Another one is “Twitch and Shout”, it examines how society is quick to judge an individual who does not fit into what society calls “normal”, and it was also nominated for an Emmy. There have been some very good examples of depicting the reality of TS, but the negativity of using it as a plot device has not done much to aide in getting the truth out there to society especially when we poke of these people by using cartoons such as “The Simpsons”, where Bart uses TS to get out of doing a test, or “South Park”, where one of the characters pretends to have it so he can go around saying offensive things. We are sending our children the wrong message and aiming it directly at them through these lame cartoons. In the movie industry they depict people with TS as people who spend their day dropping the F-bomb and nothing more. The kinds of things that people who have TS say on movies and TV varies on the culture and the medium, American TV leans toward avoiding the f-bomb and real nasty words, though cable stations can be a little more liberal in this area. One of the most common words on TV is “Ass”, along with a few other inappropriate words of the body. Media tends to lean away from using obscene words for women, mainly so they do not get accused of being sexist. Ethnic and racial slurs are also avoided to being called racist. Slurs that were once fair game demeaning the personal sexual choice of an individual have been shied away from to avoid homophobia. Insults like retard, moron and idiot are usually not used due to the offense being by means of the person insulted and not by the words themselves. There is no cure for TS, and no medication is helpful to everyone. But medication has been developed to help control the occurrences of tics. Haloperidol is currently the most common type prescribed to patients of TS, with seventy – eighty percent of the patients receiving the drug. Even though it is good at precluding the symptoms of TS, it comes with some very strong side effects that may keep people from trialing the drug. One of the biggest side effects of the drug is that it was slowing the patients down so much that studies proved that it was slowing the children who were taking the medication their IQ scores were a full score lower than compared to children their own age. (Markova) Side effects like these keep researchers looking for alternative treatments and support positive personal identity development. Rather than having a child to fight this syndrome, the child learns to utilize the symptoms into a positive manner which is both tolerable and in a positive manner. There are ways to manage some of the symptoms of TS without all the heavy drugs and music is one of these methods, either by playing an instrument or by listening to music. Doing either is absorbing or evolves a lot of concentration which have been found to decrease the symptoms of tics. Learning to play an instrument can help a child to feel like they are given an opportunity to gain some control back over their life while developing a love for the arts and giving themselves a release for problematic symptoms. Music also envelopes a calming environment and can help the child feel that they can be accepted easier and they can identify with their peers around them. Music community can help erase the bullying and social rejection that children might experience in school by promoting school bonds with others and putting their creativeness forward. Prognosis for TS, although there is no cure for TS, this condition in most individuals does seem to improve as they approach their late teens and adulthood years. Some may even suppress their tics totally and or no longer require the medication for controlling their tics. TS is described as a lifelong and chronic condition, however, it is not a degenerative condition. People who have TS have a normal life span compared to non-TS suffers, it has no affect on their intelligence, tics do seem to decrease with age, studies have suggested that it is possible that the neurobehavioral disorders such as ADHD, OCD, depression, generalized anxiety, panic attacks, and mood swings can persist and cause impairment in adult life. Living with two boys that both have varying degrees of TS, mild to depilating, you see the common and cruel use of misconceptions. They're not a laughing matter. It's not funny, it is not like they portray in the movies, the sudden laugh it off sudden jerky movement, I watched my middle boy who was just diagnosed in September of this year go from a normal happy, social, athletic starter on the freshman football team to a child that hides in offices and hallways to do his class work to avoid kids watching him while he is ticing, he is forced in half almost to a fetal position sometimes by the muscle jerks. They are painful, not funny, and he will go hours sometimes not being able to talk due to the tics being so bad that he has his muscles pulled up into a joker grin. He's been benched from the football team and that was what he lived for, how do you explain to a thirteen year old that his life isn't over when he begs to quit school and stay home because the humiliation and bullying is more than he knows how to deal with that he actually talks suicide? I have been able to prove to him that not all cases are alike, and thank God that they are no set guidelines or stereotypical course that it follows. His tics almost completely disappeared one day, the major ones did anyway. He still has the little ones several times an hour all day long. The good that came out of it was by his symptoms coming into the spotlight other kids symptoms were noticed as well and there are several kids at the High School that are getting help with social anxiety and stressors that are causing their tics to trigger. So, as my two boys are approaching college age do I worry how they'll be treated? Will they be victims of the media? I think that through continuing advocacy that they are going to be okay. But it is going to have to start now to make a difference in a child’s or even my grandchild’s future. By showing the facts from fiction on the misconceptions of Tourette’s, and educating the general public, schools, daycares, or any program that has deal with early child development to help them understand that people who have TS are like everyone else in the world and our actions can have an impact on their lives. The onset of TS is at a time of identity development that forms who they are for the rest of their lives. Through education and acceptance starting at a young age we are helping these children to hopefully have better peer relationships, less emotional scarring and less peer rejection due to understanding. Stress and anxiety are key factors when it comes to people with TS and stress causes their tics to increase and become more bothersome, making them feel like bigger social outcasts during a time in their lives when social acceptance is at its highest priority. By having these misconceptions and negative stereotypes floating out in the media we are setting our younger generations up for failure. By changing the public's perception of TS we can reduce the victimization of those who have yet to suffer, and may not be able to ever reach their full potential because of the limitations that we as a society are putting on them. The first step is for the media to represent TS in a true, accurate, and compassionate way. They need to show true people living with the disorder on a productively daily basis. When people can help each other understand this behavior as something that the person cannot control and these are involuntary tics and how we react to these outbursts as a society, then we can help these individuals with their syndrome. If as a society we can show them that we understand what is happening to them and can accept that without fear, disquiet, or judgment on any level, it will go a long way in helping to reduce the levels of stress and anxiety in how the TS sufferers feels. The misunderstanding of TS has endured, through all the advancement made in medical technology we are still stuck in the Stone Age when it comes to common sense. You could argue that knowledge is power? Yet, due to the Medias misrepresentation of TS the myths and misconceptions about this disorder still prevail.

Works Cited Books Cummings, E. David. Tourette syndrome and the Human Behavior. Duarte., CA; Hope Press, 1990. Print Journal Kadesjo, B. & Gillberg, C. Tourette's disorder: Epidemiology and comorbidity in primary school children. Journal of the American Academy of Child and Adolescent Psychiatry, 39.5, (2000): 548-555. Print Markova, Diana. Tourette's syndrome: How the syndrome impacts identity development and mode of action. Inkblot: The Undergraduate Journal of Psychology, 1.September (2012): 62-67. Print Raz, A., Keller, S., Norman, K., & Senehal, D. Elucidating Tourette's Syndrome: Perspectives from hypnosis, attention, and self regulation. American Journal of Clinical Hypnosis, 49.4, (2007): 289-309. Print Media The Big White. Dir Mark Mylod. Perf. Robin Williams, Holly Hunter, Giovanni Ribisi. 2005. Momentum Pictures. 2006. The Boondock Saints. Dir. Troy Duffy. Perf. Sean Patrick Flanery, Norman Reedus, Willem Dafoe. 2000. Fried Films. 2001. Centers for Disease Control. Tourette syndrome. April 10, 2012. Web. 08 Nov 2012. Deuce Bigalow: Male Gigolo. Dir. Mike Mitchell. Perf. Rob Schneider, T J Hicks, Arija Bareikis. 1999. Walt Disney Studios Distribution. 2001. I Have Tourette’s but Tourette’s Doesn’t Have Me. Dir Ellen Goosenberg Kent. Perf. Amanda, Augeni, Colin. 2005. Mashpedia.com. Tourette syndrome. 2012. Web. 06 Nov 2012. Matchstick Men. Dir. Ridley Scott. Perf. Nicolas Cage, Sam Rockwell, Alison Lohman. 2002. ImageMovers. 2003.
The Simpsons. FOX. KTTV FOX, Los Angeles. 17 March 2002.

Twitch and Shout. Dir. Laurel Chiten. Perf. Evan Handler, Lowell Handler. 1993. Blind Dog Films. Wedding Crashers. Dir. David Dobkin. Perf. Owen Wilson, Vince Vaughn, Christopher Walken. 2005. Tapestry Films. 2006. The Wedding Singer. Dir. Frank Coraci. Perf. Adam Sandler, Drew Barrymore, Christine Taylor. 1998. Juno Pix. 1999. The West Wing. NBC. WWBT, Richmond, VA. 3 Apr. 2002. What About Bob. Dir. Frank Oz. Perf. Bill Murray, Richard Dreyfuss, Julie Hagerty. 1991. Touchstone Pictures. 1992.