Tourette syndrome affects more than 300 000 adults and children across the UK, yet remains a widely misunderstood neurological condition.
Dr Lisa Davies, Priory Consultant Child and Adolescent Psychiatrist, says misinformation, stereotypes and unhelpful portrayals continue to fuel stigma – leaving many families feeling isolated, judged or reluctant to seek help.
Dr Davies, who supports patients at Priory Hospital Roehampton in London, has shared ten things everyone should know about Tourette’s syndrome (TS).
1. Tourette syndrome is a misunderstood, neurological condition
“Tourette syndrome is a widely misunderstood, genetically determined neurological condition, diagnosed based on the presence of motor and vocal tics,” said Dr Davies.
“Motor tics are involuntary movements of the body — for example blinking, facial grimacing, shoulder shrugging, head jerking or other sudden, repetitive physical actions. Vocal tics (also called phonic tics) are involuntary sounds — such as sniffing, throat clearing, coughing, grunting, humming, or, less commonly, words or short phrases.”
2. Tics are involuntary
“Tics are uncontrollable sounds or movements. Some people experience a premonitory urge or sensation, which ‘signals’ a tic may be coming and allow them to suppress the tic. This can be a bit like the feeling you get before a sneeze or a tickling sensation,” notes Davies.
“Being able to suppress a tic does not mean the individual can help or control it. The ability to suppress a tic is variable and is also dependant on stress, anxiety, excitement and tiredness. Some people are not able to suppress their tics, some people can surpress certain tics and not others, it’s different for everyone.
“Some individuals can suppress their tics for a period of time, but holding tics in can feel increasingly uncomfortable-like a pressure cooker. People may experience a ‘rebound’-when tics come out in a more explosive and severe way after suppression. This may explain why some children may have more severe and frequent tics when they get home after a day at school.
“Some people feel a sense of discomfort or tension before a tic and a sense of relief after ticcing. Some people with tics can find it helpful to ‘let their tics out’ in a safe place at school or work, such as the bathroom or a quiet room.”
3. Tourette syndrome is more common than many people realise
“Tourette syndrome affects one in 100 children. Transient temporary tics are event more common with prevalence believed to be as high as one in five,” she said. “Boys are more likely to be diagnosed with Tourette syndrome than girls, but new evidence is continuously emerging as in other neurodevelopmental disorders.”
4. Tics can change over time
“The location, type, frequency and intensity of tics can all change. Symptoms may temporarily worsen when someone experiences heightened emotions including feeling anxious, excited, tired or angry,” Dr Davies noted.
5. Swearing tics are not typical
“Coprolalia – the involuntary use of swear words or socially inappropriate language – affects only 10 - 30 per cent of people with Tourette’s. It is not required for diagnosis and is far less common than many assume,” she added: “This symptom is, however, one of the most challenging aspects of the condition.”
6. Inappropriate sounding tics are not intentional
“When coprolalia does occur, the words expressed do not reflect the person’s beliefs, values or intentions. Sadly, these tics are often misunderstood, leading to isolation, distress, anxiety and depression. Some people may not feel safe at school, work or in their community,” said Dr Davies.
7. Tourette’s exists on a spectrum
“Media portrayals tend to focus on the most severe cases-often with coprolalia, but Tourette’s actually exists on a spectrum. Tics can range from mild and infrequent to complex and intense. Such portrayals can reinforce stigma and be unhelpful for families, which is why clinicians often refer to the broader ‘tic spectrum’,” she explained.
“Even if a tic appears to be mild in nature, it can still have a significant effect on those with Tourette’s. For example an eye roll tic can seem quite mild to the onlooker, but for those with Tourette’s they can experience severe headaches and it can interfere with sleep if they continually need to open their eyes to do this.”
8. Every person’s experience is unique
Dr Davies explained that every person with Tourette syndrome has a unique experience of living with their tics: “Some people with mild tics experience significant impairment. The severity and or complexity of tics is not necessarily proportional to impairment. It is therefore essential to evaluate and understand how the individual’s tics affect their levels of distress, self-esteem, family life, social acceptance and functioning and how they interfere with behaviour-including speech and communication.”
9. Co occurring conditions are common
“Up to 85 per cent of people with Tourette’s may have co-occurring symptoms of obsessive compulsive disorder (OCD), anxiety, attention deficit hyperactivity disorder (ADHD) and autistic spectrum condition (ASC). It is essential that all these areas are assessed to ensure appropriate care and support,” Dr Davies said.
10. There is a nationwide lack of specialist services
“There remains a shortage of dedicated services across the UK to assess and treat people with Tourette’s, meaning many families face long waits or struggle to access help at all. Many find they are diagnosed and then discharged with no ongoing support or treatment,” she said.
Take home message:
Dr Davies highlighted that increased awareness is essential to reducing stigma. The understanding and attitude of individuals, organisations, the media and society can influence the life experiences of people with Tourette syndrome - for better or for worse.
“Facing each day with tics can require enormous courage and resilience. We must continue to educate others to reduce misconceptions and stigma around Tourette’s,” she said: “When interacting with someone with tics – or any disability – take time to understand, and be kind.”
Tourette’s Action are the UK’s leading Tourette syndrome charity group. Emma McNally CEO of Tourette’s Action, said: “Dr Davies’ insights highlight just how widely misunderstood this neurological condition remains. Every day we hear from people who feel isolated, dismissed or left without appropriate care, and nowhere to turn, there are significant gaps in Tourette’s services across the UK.”
“We continue to campaign for better access to assessment and treatment, earlier identification, and a more informed public conversation about the realities of living with Tourette’s. Greater awareness is an important step toward change, and we hope this piece encourages more people to seek help, seek understanding and seek community. We are here to support those with Tourette’s and their wider network, so please reach out to us for support.”
For more information and resources available via www.tourettes-action.org.uk
For information on treatment and support available at Priory, visit www.priorygroup.com/mental-health/tourettes-syndrome-ts-treatment