Tourette syndrome is a neuropsychiatric disorder that not many people fully understand, including not just the classification and characteristics, but also the causes, diagnosis, and possible management. There are many misconceptions when it comes to Tourette’s. Many studies have been done, but there are still large gaps referring to information about the disorder. Most of the population seems to follow the entertainment industry’s perception of the disorder, which is not only inaccurate, but extremely disparaging as well.
The Beginning
Tourette’s, also known as TS, affects between 100,000 to 200,000 people in the United States, most of them only having mild symptoms. A person suffering from TS makes involuntary and repeated movements or noises, called tics. In 1885, neuropsychiatrist Georges Albert E. Brutus Gilles de la Tourette wrote a detailed account of several patients with tics. This was the first record of Tourette’s. Before him, in 1825, a French neurologist Jean-Marc Itard was caring for a young noblewoman, who developed vocal tics, also known as phonic tics, at the age of seven. Not knowing what it was, he sent her to live in seclusion. This cannot be reported as the first recording, but it is noted in many studies as a possible case of Tourette syndrome. It usually becomes apparent that an individual has Tourette syndrome at a very young age, but this is not always the case.
There are phonic tics, called coprolalia, but there are also motor tics as well, which are more common in mild cases. Tics are sudden, repetitive, non-rhythmic movements and utterances that involve discrete muscle movements. The first symptoms of the aforementioned disorder are usually facial tics, including blinking and clearing of the throat.
Tics associated with Tourette’s are temporarily suppressible, and often preceded by an unwanted premonitory urge. Meaning, immediately before the onset of a tic, the individual with Tourette syndrome is aware of an urge, similar to the need to scratch an itch or sneeze. Many people have stated that the need to tic is as if there is a buildup of tension, pressure, or energy. Like said before, some can suppress the urge to tic, but doing so often leads to an outburst more severe than normal. Young children however, are not as aware of tics as older people, and don’t understand the process of suppressing. It can be done without their knowledge, but it is generally not done at all.
Tourette syndrome is one of several tic disorders, which are classified by the Diagnostic and Statistical Manual of Mental Disorders. It is classified according to type, whether it’s motor, phonic, or both. Tourette’s is also classified by the duration of tics, whether they are chronic or transient. According to the revised fourth edition of the Diagnostic Manual of Mental Disorders, DSM-IV-TR, Tourette syndrome may be diagnosed when a person exhibits not only motor tics, but at least one or more phonic tics over the period of a year. The phonic tics do not need to be concurrent, but there can be no more than three consecutive months without tics. The onset for Tourette’s must have occurred before the age of 18, and cannot be attributed to the direct physiological effects of a substance or medical condition. Meaning, other medical conditions involving tics must be ruled out before conferring a diagnosis of Tourette’s.
Diagnosis is Difficult
Many medical professionals make the diagnosis based on observation of the individual’s symptoms and family history. Afterwards, a basic physical and neurological examination is usually sufficient. The tics associated with TS change in number, frequency, severity and anatomical location. The ongoing increase and decrease in severity and frequency is known as waxing and waning, and is different for each individual. Motor tics can be classified into two separate groups; simple and complex. Simple tics, such as eye twitches, shoulder shrugs, or jerking of the head, are abrupt, brief movements that occur in a single and isolated fashion. Complex tics however, are a series of movements that can appear purposeful, but are still involuntary. A few examples of complex tics are repeatedly sniffing things, mimicking movements made by others, repeated kicking motions, and head shaking with shoulder shrugging.
The exact cause of Tourette syndrome is still to this day, unknown. There has been many studies done, and it is now well established that both genetic and environmental factors are involved. Genetics have shown that the majority of cases are inherited, but once again, the exact path of the inheritance is unknown. In some cases, after much evaluation, studying and tests, there have been cases of sporadic onsets of Tourette’s, with no inheritance whatsoever. Brain structures have implicated in TS patients that there is a 50% chance of passing the gene or genes to one of his or her children, but it is a condition of variable expression as well as incomplete penetrance. Meaning, not everyone who inherits the gene(s) will show symptoms. Another factor that has been recently acknowledged is that gender plays a role. Males are more likely than females to express tics.
Tics in general are believed to be the result of dysfunction in cortical and sub-cortical regions, the thalamus, basal ganglia and frontal cortex. Neuroanatomic models implicate failures in circuits connecting these, but it is still a work in progress. Typically, medication is not used when it comes to attempting to manage TS. Some forms of medication, such as Clonidine and Prolixin, are used, but mainly for more severe cases. Psycho-behavioral therapy, education, and reassurance are usually sufficient forms of treatment. Cognitive behavioral therapy is also recommended, to help with depression and social isolation, as well as to improve family support. Educating a patient, parents, and the community is a key strategy in treatment. Medication is available mainly to help when the symptoms of TS interfere with everyday functioning.
As said before, the entertainment industry has made life harder for those living with Tourette syndrome. Hollywood perceives people with Tourette syndrome to have an extremely difficult time holding jobs and leading full lives. The actuality is that they can do both of these things completely, without much difficulty. Tourette’s was once considered a rare and bizarre syndrome, most often associated with the exclamation of obscene words or socially inappropriate and derogatory remarks. This symptom is only present in only a small minority of people with TS. This has caused stress and frustration in many people suffering with the disorder. Also, television and movies have depicted people with Tourette’s to be in one or two specific categories, including low-income families and families with verbal and/or physical abuse. This is one again, a myth made by entertainers. Tourette syndrome is found among all social, racial and ethnic groups.
Personal Insight
“My brother is the worst; he enjoys making fun of me for it [TS]. My dad is almost as bad – he has a short temper and yells and screams at me to stop. But I can’t.” This was written by a writer under the name of DeeJay on a teen website for kids with issues such as TS. People with Tourette’s have often been depicted as social misfits and “losers” in the entertainment industry. Thus, many of the people with TS have been made fun of and increases in depression, sometimes suicide, have skyrocketed. Families have become less understanding, and classmates have been brutal in their bullying. Another young teen, who remains anonymous, states "nearly all of my friends accept my TS, but recently a friend asked, “Can’t you just stop?” It hurt me more than words can say. I had expected him to understand. I would love to stop if I could."
If the entertainment industry was more understanding and wanted to educate, people with Tourette’s would be able to have better support from more than just a few people, and life would be a little easier.
There are many misconceptions when it comes to understanding Tourette syndrome. There are some things that professionals are still trying to understand, but it is not a life-threatening problem, or a social deformity, the way Hollywood perceives it to be. This neuropsychiatric disorder may not be a common disorder, but it has caused quite a stir, seeing as the causes are almost completely unknown and the diagnosis is a difficult task. Tourette’s is, however, a disorder that needs to be highlighted more often and in a positive way.
Sources:
PubMedHealth.com, "Gilles de la Tourette Syndrome" (19 Sept 2010)
NationalInstituteofNeurologicalDisordersandStroke.com, "Tourette Syndrome Fact Sheet" (21 Sept 2010)
TeenInk.com, "Life With TS" (23 Sept 2010)
Aubrey Santangelo - If you don't get out of the box you've been raised in, you won't understand how much bigger the world is.
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