It’s time to break down these common misconceptions about Tourette’s syndrome, for good
“My first encounter with Tourette’s syndrome (TS) was through a movie featuring severe swearing, leaving a lasting impression,” Marina Sabolova, a psychotherapeutic counsellor, shares. “A few years ago, when my four-year-old son began blinking excessively, I initially attributed it to a foreign object in his eye. Concerned, I sought an optician’s evaluation, only to find his eyes in perfect condition. Alarmed, I turned to Google and, upon discovering the possibility of TS, was devastated, fearing he might develop coprolalia – the involuntary and repetitive use of obscene language.
“Professional training allowed me to work with children with TS, altering my perspective,” she continues. “Open conversations at home have brought acceptance and calmness, emphasising the importance of education and awareness.”
According to the charity Tourettes Action, TS affects more than 300,000 children and adults in the UK, and yet it’s often shrouded in misconceptions and stigma. A neurological condition that is characterised by repetitive, involuntary movements and vocalisations, known as ‘tics’, precisely how TS may affect an individual varies from person to person – but a study published in the journal Adolescent Health, Medicine and Therapeutics found that TS was associated with “significant stigmatisation and poor self-perception in a significant number of cases”.
“Debunking myths is crucial to combating stigma and fostering understanding,” Marina adds. “Sharing experiences with local families and learning from others have transformed my outlook, making me a more composed parent. Understanding that individuals with TS can lead successful lives emphasises the need to challenge misconceptions and promote empathy.”
Here, we’re breaking down seven common myths about TS.
MYTH: Only boys and men are affected
“Historically, it has been suggested that Tourette’s syndrome is three to four times more common in males than females,” says Marina. “However, more recent research has indicated that the gender gap may not be as large as previously thought.”
A 2008 study from the University at Buffalo, New York, found that while TS tends to be more severe in boys than girls, in adulthood it appears to be more severe in women than men, and this link was later also observed in a 2015 study published in European Psychiatry, which found that the severity of tics improved with age in boys and men, but worsened in girls and women. So, while childhood TS does appear to be more common in boys than in girls, it’s important to recognise that the condition can affect people regardless of their gender.
MYTH: TS causes you to swear
“Myths such as that all individuals with the condition engage in inappropriate language (coprolalia) still persist,” says Marina. “The truth is that coprolalia is rare, with most TS individuals exhibiting different types of tics.”
According to the NHS, swearing only affects about one in 10 people with TS. Other examples of vocal tics include grunting, throat clearing, whistling, coughing, tongue clicking, saying random words and phrases, and repeating a sound, word, or phrase. Some people may also experience physical tics, which can include blinking, eye-rolling, grimacing, shrugging, jerking of the limbs, jumping, or touching objects.
MYTH: Tics are intentional
Marina highlights the misconception that tics are intentional and controllable. “In reality, tics are involuntary, and attempts to suppress them can lead to increased tension, exacerbating their manifestation,” she explains.
People with TS are likely to experience ‘premonitory sensations’, which are strong urges that happen before a tic – sometimes compared to the feeling you get before you sneeze. The sensation is only relieved after the tic has been carried out – and so, while some people may be able to control their tics for a short period of time, this can become very tiring and result in a worse manifestation the longer they hold out.
MYTH: Tics are disruptive
“Not all tics are conspicuous or disruptive, challenging the belief that TS always manifests prominently,” Marina explains. “The varying intensity of tics allows some individuals with TS to effectively manage their symptoms.”
There are many tics that may go unnoticed by the majority of observers. Additionally, tics may become less noticeable when the individual is working on an activity that involves a high level of concentration – such as reading a good book, or taking part in sports and exercise.
MYTH: TS is a result of bad parenting
Perhaps related to the misconception that TS always involves swearing is the myth that the condition is linked to bad parenting – but that isn’t the case.
“Blame often accompanies a lack of understanding, with the false notion that TS results from psychological factors or poor parenting,” Marina says. “In truth, TS is a genetic neurological disorder, not linked to parenting or psychological causes.”
The exact cause of TS isn’t fully understood, though because of the genetic element, a family history of TS can be a risk factor in a child developing the condition.
MYTH: All people grow out of TS
“Tourette’s syndrome is not limited to children; it can affect individuals of all ages,” Marina says. “While symptoms often appear in childhood (typically between the ages of two and 15), they can persist into adulthood. In some cases, symptoms may become milder or less frequent in adulthood, while in others, they may persist.”
There is currently no cure for TS, and the majority of children do not need treatment. However, in the cases where they do, or when it persists into adulthood, a combination of therapy and medication can be used.
MYTH: TS is linked to learning disabilities
A learning disability is a condition that can limit cognitive ability. While some children may find that TS can have an impact on their education, it is not true that TS is itself an intellectual disability.
“Dispelling the myth that people with TS have learning disabilities is crucial,” Marina explains. “While some may have associated conditions, TS itself doesn’t necessarily impact cognitive abilities.”
Instead, TS is linked to other mood and behavioural conditions such as ADHD and OCD. Anxiety and depression can also be common and, sadly, a 2021 study published in Child Psychiatry & Human Development found that children with TS report experiencing being treated differently by teachers and other adults, and bullying is common among peers. For this reason, and more, dispelling myths and promoting understanding of the condition is vital.