What do you know about Tourette’s syndrome? That it causes involuntary swearing? While this is true in some cases, there is so much more to the neurological condition than most people realize.
In fact, uncontrollable swearing or yelling of socially unacceptable phrases – known as coprolalia – only occurs in around 10-15 percent of individuals with Tourette’s syndrome (TS).
Despite affecting relatively few people with TS, however, coprolalia is perceived as one of the main symptoms of the condition.
It is this misconception, among a number of others, that has fueled a stereotype of people with TS.
“The reality is that Tourette’s is a complex condition that can be both physically and socially disabling,” wrote Jessica Thom, co-founder of Touretteshero – a blog that aims to “celebrate the humor and creativity of Tourette’s” – in an article for The Guardian in 2012.
“The assumption that it’s only about swearing makes it even harder for the 90 percent of people who have it but who haven’t ever ticced an offensive word.”
First described by French neurologist Dr. Georges Gilles de la Tourette in 1885, TS is a neurological disorder characterized by “tics,” which are sudden, involuntary, and repetitive twitches, movements, or sounds.
There are two types of tics that occur with TS: motor and vocal. Motor tics are involuntary body movements, such as blinking, shrugging, or arm-jerking, while vocal tics are involuntary sounds, such as humming, clearing the throat, or shouting a word or phrase.
- Around 200,000 people in the U.S. have the most severe form of TS
- The worst symptoms of TS normally occur in early teens
- A person must have both motor and vocal tics for at least 1 year before receiving a TS diagnosis.
The majority of people with TS have what are called “simple tics.” In the motor form, these are defined as brief, repetitive movements that involve fewer muscle groups. Examples of simple motor tics include eye blinking, facial grimacing, and head or shoulder jerking.
Simple vocal tics may include repetitive sniffing, grunting, or throat clearing.
“Complex tics” are those that affect a wider range of muscle groups. Complex motor tics may involve a combination of facial grimacing, a head twist, and a shoulder shrug, for example, while complex vocal tics include words or phrases.
Symptoms of TS most commonly arise in childhood, between the ages of 5-10 years. In the United States, it is estimated that 1 in every 360 children aged 6-17 years have received a TS diagnosis, and the condition is three to five times more common among boys than girls.
It is unclear exactly what causes TS, though studies have suggested the condition arises from abnormalities in the basal ganglia of the brain – a region involved in movement coordination.
Researchers have also indicated that TS may have a genetic cause; studies have found that certain gene mutations – such as those in the SLITRK1 gene – are more common in people with TS.
Another common misconception is that people with TS can control their tics if they try hard enough; this is not the case.
The National Institute of Neurological Disorders and Stroke (NINDS) – part of the National Institutes of Health (NIH) – note that while some individuals with the disorder may be able to temporarily suppress their tics, many often report experiencing a severe tension build-up when doing so, which can cause involuntary tics to strike.
For the majority of patients with TS, tics do not interfere with day-to-day functioning, so no treatment is required.
However, for others, tics may impair functioning, cause stress, or interfere with school, work, or social life. In these cases, there are medications and behavioral therapies that might help.
Medications for TS include neuroleptics, such as haloperidol and pimozide. These drugs will not completely eliminate tics – there is no cure for tics – but they may help patients manage them.
Behavioral therapies for TS include cognitive behavioral intervention for tics (CBIT), which involves using “competing responses” to control tics, as well as learning to resist the urge to tic. Studies have shown that such therapy is effective for tic management.
As mentioned previously, uncontrollable swearing and yelling of rude phrases only affects 10-15 percent of people with TS, so why is it perceived as a primary symptom?
Dr. Mark Hallett, senior investigator at NINDS, told Medical News Today that it is because this symptom is “so dramatic.”
Imagine you are sitting on a train. The person opposite you begins to swear or make socially unacceptable remarks. Such actions are difficult to ignore, and because they are perceived as being “out of the ordinary,” they grab people’s attention.
Unfortunately, relative to the more common motor tics that occur among people with TS, it is the swearing tics that people are most likely to remember, and that is partly why they are considered a key symptom.
Of course, the media industry has not helped break this misconception – some would say it has done quite the opposite.
The vast majority of media portrayals of TS illustrate a person with uncontrollable swearing, and often, this will be depicted in a comedic form.
For example, an episode of the animated American sitcom South Park involves a character called Cartman faking having TS so he can get away with swearing.
While such portrayals are seen by many as “harmless fun,” for people with TS, these representations add fuel to the stigma fire.
“When my son was first diagnosed with Tourette’s, the first thing I said was, ‘But he doesn’t swear,'” Susan Breakie, a chapter leader for the Tourette Syndrome Association of Delaware, told The Huffington Post last year. “That’s the way I had stigmatized it because of things that I had seen in movies or TV shows.”
Sadly, such a misconception is common. But how can it be broken?
Dr. Hallett told MNT that in order to reduce the stigma associated with TS, the public needs to be better educated about the condition.
This is a view held by health professionals and patients alike, which is why Tourette’s Awareness Month – which takes place May 15th to June 15th each year – was launched.
The campaign – led by the Tourette Association of America – aims to raise awareness of TS, increase education about the condition, and reduce stigma.
An online survey conducted last year by the Tourette’s Action, King’s College Hospital, and Great Ormond Street Hospital – all in the United Kingdom – assessing people’s views about education surrounding TS and other tic disorders, revealed that 61 percent of respondents felt they had not received sufficient information on TS from health professionals in the past.
Respondents also highlighted the need to increase the knowledge and understanding of TS among educational professionals, as well as the need to correct misconceptions about the condition among the general public.
While it is clear that much more work is required to achieve a better understanding of a commonly misunderstood condition, Dr. Hallett told MNT he believes progress is being made.
“At least when I started neurology practice, it was an unknown disorder. Now, it is pretty well known, and patients (or patient’s parents) often make their own diagnosis. On the other hand, persons may not understand the nature of the disorder, but there is certainly more to learn, even by the experts.”
Dr. Mark Hallett