Sociological and cultural aspects of Tourette syndrome

There are sociological and cultural aspects of living with Tourette syndrome (also Tourette's syndrome, Tourette's or TS), including legal, advocacy and health insurance issues, awareness of notable individuals with Tourette syndrome, and treatment of TS in the media and popular culture.

Tourette syndrome is an inherited neurological disorder with onset in childhood, characterized by the presence of motor and phonic tics.^[1] Tourette's is a misunderstood and stigmatizing condition, often mentioned in the popular media. Tourette syndrome was once considered a rare and bizarre syndrome. It is no longer considered rare, but is often undetected because of the wide range of severity, with most cases classified as mild.^[2] Tourette's is defined as part of a spectrum of tic disorders, which includes transient and chronic tics.^[3][4] With the increased knowledge of the full range of severity of Tourette syndrome—including milder cases—it has shifted from a condition only recognized in its most severe and impairing forms, to being recognized as a condition which is often mild, and which may be associated with some advantages and disadvantages.

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Legal and insurance issues

There is no reason to suspect that persons with Tourette's have diminished capacity with respect to consent to treatment, participation in research, or making a will. However, support from experienced advocates can be helpful in pursuing legal rights under US federal legislation which protects some rights of individuals with TS: examples include the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA).^[3] Legal and other advocacy information regarding the challenges of living with TS can be found on the website of the Tourette Syndrome Association.^[5]

A review of all cases tried in state and federal courts between 1985 and 2003 (civil rights, criminal, education, family, labor, and social security) found that TS was implicated in a minuscule number of cases nationwide: only about 150 cases, 21 of which were criminal, over 18 years. The authors concluded that Tourette syndrome "rarely leads to criminal behavior, but patients with TS who have behavioral comorbidities are at risk of being involved with the legal system."^[6]

People diagnosed with Tourette syndrome may have difficulty obtaining new health insurance, or reimbursement for health care under their existing insurance plans,^[7] in spite of overall excellent health.^[8] The insurance "nightmare" that exists for thousands of people with TS^[9] is a factor to be considered in the diagnostic process because a TS diagnosis can result in future denial of medical coverage. If a diagnosis is not needed for school or medication processes, some families may choose to forego a formal, written diagnosis.

Latent advantages

  Discussions with adults who have Tourette syndrome reveal that not everyone wants treatment or a "cure", especially if that means they may "lose" something else in the process. Some believe that there may even be latent advantages associated with the genetic vulnerability.^[10] Research supports some advantages associated with Tourette syndrome.

A controlled study on a small (13) group of individuals with TS found that cognitive control may be enhanced in young people with Tourette's because the need to suppress tics results in more efficient control of inhibitions.^[11] A subsequent study confirmed and extended the paradoxical result that individuals with Tourette's exhibit greater levels of cognitive control than age-matched healthy peers.^[12] There is some evidence to support the clinical lore that children with "TS-only" (Tourette syndrome in the absence of other comorbid conditions) are unusually gifted: neuropsychological studies have identified advantages in children with TS-only. A study of full-scale intelligence quotient (IQ) testing showed that children with TS-only had higher IQ scores, relative to their parents, than predicted by statistical models.^[13][14] Another neurological examination of motor function found that 76% of children with TS-only were faster than average on timed motor coordination,^[15] although similar results were not found among children with TS who also had ADHD.^[13] In a study of eight children, ages 8–17, those with Tourette syndrome were found to be much quicker at processing certain mental grammar skills than children without the condition. The abnormalities that lead to tics may also lead to "other rapid behaviors, including the cognitive processing of rule-governed forms in language and other types of procedural knowledge".^[16] The investigator, Michael Ullman, PhD, said, "These children were particularly fast, as well as largely accurate, in certain language tasks. This tells us that their cognitive processing may be altered in ways we have only begun to explore, and moreover in a manner that may provide them with performance that is actually enhanced compared [to] that of typically-developing children".^[17]

Notable individuals

There are many individuals with Tourette's, living and deceased, recognized in their fields, or for whom obsessive-compulsive tendencies associated with Tourette's may have helped fuel their success. An example of a person who may have used obsessive-compulsive traits to advantage is Dr Samuel Johnson, lexicographer, who had Tourette syndrome as evidenced by the writings of James Boswell.^[18] Johnson wrote A Dictionary of the English Language in 1747, and was a prolific writer, poet, and critic. The "case of Dr Johnson accords well with current criteria for the Tourette syndrome; he also displayed many of the obsessional-compulsive traits and rituals which are associated with this syndrome".^[19]

André Malraux, the French author, adventurer and statesman, also had Tourette syndrome.^[20][21] Howard Ahmanson, Jr, an American millionaire philanthropist who funds Christian causes, has Tourette's.^[22] Brad Cohen is an award-winning teacher and author.^[23][24]

Recognized athletes and figures in the sports world diagnosed with Tourette syndrome include Mahmoud Abdul-Rauf (formerly Chris Jackson), a former NBA player;^[25] Eric Bernotas, a three-time U.S. skeleton champion who made his Olympics debut in 2006;^[26] Jim Eisenreich, a former major league baseball player;^[27] Tim Howard, a goalkeeper for Everton F.C.;^[28] Mike Johnston, a relief pitcher formerly on the roster for the Pittsburgh Pirates^[29] and NASCAR Busch Series driver Steve Wallace, son of racing legend Rusty Wallace.^[30]

Recognized musicians with Tourette syndrome include Tobias Picker, a composer;^[31] Nick Tatham, a singer/songwriter;^[32] and Michael Wolff, a jazz musician.^[33] Author and neurologist Oliver Sacks describes the case of a drummer with TS, who uses his tics to give him a certain 'flair' or 'special sound' to his drumming.^[34]

Oliver Sacks uses the pseudonym Carl Bennett to describe real-life Canadian Mort Doran, M.D., a pilot and surgeon with severe TS, whose tics remit almost completely while he is performing surgery.^[35][36] Australian astrophysicist Rodney Marks had Tourette syndrome.^[37]

Speculation about notable individuals

Some authors have speculated that Mozart may have had Tourette syndrome.^[38] Benjamin Simkin, a medical doctor, argues in his book Medical and Musical Byways of Mozartiana that Mozart had Tourette syndrome.^[39][40] Simkin is an endocrinologist^[39]—not a psychiatrist or a neurologist, the medical fields which specialize in the neurological disorder. His claim was picked up by newspapers worldwide, causing an international sensation, and internet websites have fueled the speculation.^[41] Letters Mozart wrote to his cousin Maria Anna Thekla ("Bäsle") between 1777 and 1781 contain scatological language; he wrote canons titled Leck mich im Arsch ("Lick my arse") or variations thereof (including the pseudo-Latin Difficile lectu mihi mars). While the term "Leck mich am Arsch", when literally translated, conjures up images of sexual practices, the more accurate English meaning of this phrase is simply "Kiss my ass". The additional phrase "... recht fein schön sauber", while colorful, is still only an emphasis: that is to say, "Kiss my ass real good!" [sic]. The use of this written language alone is not necessarily indicative of coprolalia, a rare symptom present in a minority of people with TS, and there are cultural explanations for Mozart's use of language. The German phrase was popularized by the Johann Wolfgang von Goethe (1749–1832) drama about the historical figure of Götz von Berlichingen. Coprolalia encompasses words and phrases that are culturally taboo or generally unsuitable for acceptable social use;^[42] it is usually expressed out of social or emotional context, and may be spoken in a louder tone or different cadence or pitch than normal conversation. The phrases uttered by a person with coprolalia do not necessarily reflect the thoughts or opinions of the person, and are embarrassing to the person uttering them.^[42] A German psychiatrist examined the question of Mozart's diagnoses and concluded that "Tourette’s syndrome is an inventive but implausible diagnosis in the medical history of Mozart". Evidence of motor tics was found lacking and the notion that involuntary vocal tics are transferred to the written form was labeled "problematic".^[43] The noted neurologist and author Oliver Sacks published an editorial disputing Simkin's claim,^[44] and the Tourette Syndrome Association pointed out the speculative nature of this information.^[41] No Tourette's syndrome expert or organization has voiced concurrence that there is credible evidence to conclude that Mozart had Tourette's.^[45] One TS specialist stated that, "although some web sites list Mozart as an individual who had Tourette's and/or OCD, it's not clear from the descriptions of his behavior that he actually had either."^[46]

Comedian Dan Aykroyd described himself (in a radio interview with Terry Gross^[47]) as having mild Tourette syndrome that was successfully treated with therapy when he was a preteen, as well as mild Asperger syndrome.^[48] The diagnosis of Asperger syndrome did not exist in the 1960s, when Aykroyd was a preteen. The term was coined in 1981, and became a recognized diagnosis in the 1994 DSM. Tics can be caused by other disorders, including autism spectrum disorders such as Asperger's.^[49] It is unclear if Aykroyd received the diagnoses of TS or AS from a medical source, whether he was speaking in his role as a comic, or whether the diagnoses were self-made. It was an audio interview, so the audience could not see Aykroyd's facial expressions, but the interviewer indicated uncertainty about whether Aykroyd was kidding.^[47]

References in the entertainment industry

By sensationalizing the symptoms of Tourette's, the video media—notably the Internet, movies and television—are overwhelmingly responsible for warped perceptions about people with Tourette's, according to the Cincinnati Enquirer.^[50]

A movie released on video, The Tic Code, stars Gregory Hines as a saxophone player with TS who befriends a 10-year-old boy with TS. It was written by Polly Draper, and produced with her husband, jazz musician Michael Wolff, who has Tourette's and on whose life the script was loosely based.^[51] The UK movie, Dirty Filthy Love, tells the story of Mark Furness (Michael Sheen) with Obsessive Compulsive Disorder (OCD) and Tourette's.^[52] A protagonist with Tourette's is presented in Jonathan Lethem's award-winning detective novel, Motherless Brooklyn.

The entertainment industry often depicts those with TS as being social misfits whose only tic is coprolalia, which has furthered stigmatization and the general public's misunderstanding of persons with Tourette's. The symptoms of Tourette syndrome are fodder for radio and television talk shows. Some talk shows (for example, Oprah) have focused on accurate portrayals of people with Tourette's, while others (for example; Dr. Phil) have furthered stigmatization, focusing on rare and sensational aspects of the condition.^[53] An incident of disinformation about coprolalia and Tourette's involved Dr. Laura Schlessinger; according to the Tourette Syndrome Association, she berated a caller inquiring whether a child with Tourette's should attend a family wedding, declaring that a majority of those with the condition exhibited coprolalia and should be excluded from many social situations, provoking an avalanche of angry calls about the misinformation.^[54] Garrison Keillor, radio show host of NPR's A Prairie Home Companion, produced a segment in 2006, titled "Broadway Tourette's", about segregating people with stereotypical Tourette's from other passengers on a cruise ship, prompting a press release from the Tourette Syndrome Association.^[55]

Many television shows have addressed the topic of Tourette's, but few have advanced understanding of Tourette's. A 1981 episode of the television show, Quincy, M.E., "Seldom Silent, Never Heard", was a seminal moment in the history of Tourette's. It was perhaps the first television representation of Tourette's syndrome, and its portrayal led to many undiagnosed people with tics recognizing their symptoms and getting a correct diagnosis.^[56] Other television shows which helped advance accurate information about Tourette's include L.A. Law, The Practice and 7th Heaven.

However, even more television and film productions are not accurate representations of persons with Tourette's, and many of them have used misconceptions about coprolalia as a plot device, or portrayed people with Tourette's as being dangerously out of control. For example, in an episode of Ally McBeal, Anne Heche portrays a woman with Tourette's who gets a sudden leg tic that causes her to run over and kill her boyfriend. An episode of Touched by an Angel, "An Angel on my Tree", was about a father who committed manslaughter in an angry "rage" reaction to an event that involved his son, both with Tourette's. In an episode of The Simpsons, Mrs. Krabappel is recounting all the diseases and illnesses Bart has claimed to have to excuse himself from a test. She says, "and that unfortunate case of Tourette's Syndrome", and Bart tries to pretend he still might have it by cursing and rambling. (Due to viewer complaints, subsequent airings omitted Bart's cursing or replaced the Tourette's mention with rabies.) A South Park episode, "Le Petit Tourette", also used Tourette's as fodder for comedy; character Eric Cartman fakes the condition in order to justify his foul mouth. The episode received a mixed reaction from the Tourette Syndrome Association, which commented that it provided useful information while at the same time perpetuating outright myths about coprolalia and Tourette syndrome.^[57][58] The British comedic drama Shameless features Marty Fisher, a character with Tourette's syndrome who is also an arsonist.^[59] Other examples are The Big White, The Boondock Saints, Deuce Bigalow: Male Gigolo, Niagara, Niagara,^[60] Not Another Teen Movie, Wedding Crashers, The Wedding Singer, The West Wing and What About Bob. In Matchstick Men, the protagonist (Nicolas Cage) is a neurotic con artist with Tourette's and OCD.^[61]

Several documentaries have attempted^[62] to portray Tourette's syndrome accurately and to advocate for greater understanding of persons with Tourette's, while others focus on sensationalizing coprolalia. The Emmy Award-winning television documentary film I Have Tourette's But Tourette's Doesn't Have Me was produced by HBO in conjunction with the Tourette Syndrome Association, featuring children between the ages of six and 13;^[63] it was described by the Cincinnati Enquirer as "the best simple overview yet of Tourette's".^[50] John's Not Mad (1989) and The Boy Can't Help It (2000) are documentaries about a boy from Scotland, who has severe Tourette's and coprolalia.^[64][62] Twitch and Shout examines a society that is quick to judge a person who strays outside the limits of conventional behavior and was nominated for an Emmy.^[65] A 2007 British documentary, Tourette De France, followed a group of teenagers with Tourette's on a trip to Paris;^[66] many of the teenagers featured in the program had coprolalia;^[67] Movements and Madness:Part 1-Gusti Ayu is a documentary about the struggles of a young women with severe Tourette's in a small village in Indonesia.^[68]

Singer Pete Bennett, the winner of the 2006 edition of British TV reality show, Big Brother 7, has Tourette syndrome.^[69] The show has been accused of exploiting Pete's Tourette's syndrome;^[62] the TSA UK "claimed the broadcaster had deliberately cast someone with relatively strong symptoms in order to make him a 'figure of fun',"^[70] and the British Psychological Society (BPS) expressed concern and the possibility that BPS members involved in the series could face censure.^[71] His condition was reported to have been aggravated by drug use.^[72] Some viewers expressed concern that the show had exploited Tourette's, while others felt it was educational.^[73]

References in the music industry

The Manic Street Preachers recorded a song on the Gold Against The Soul album titled "Symphony Of Tourette". Nirvana recorded a song on the In Utero album titled "tourette's" (uncapitalized). After disbanding Jokke & Valentinerne, Norwegian rock-musician Joachim Nielsen played with a backing-band called The Tourettes. A musical about Tourette's, In My Life, opened on Broadway in October, 2005 and closed quickly to poor reviews.^[74][75]

Notes