Widespread myths about Tourette’s syndrome are preventing young people from spotting early signs of the disability and seeking help, experts and patients living with the condition have warned.
Studies show that roughly half of all cases of the neurological disorder – which causes involuntary behaviours – are undiagnosed, leaving thousands without vital support.
‘There is a lack of understanding of the condition from the general public,’ said Dr Melina Malli, a researcher in Tourette’s syndrome at Manchester Metropolitan University. ‘People refer to stereotypes of what people with Tourette’s should do – like swearing – so those with less well-known symptoms might not be diagnosed.’
Dr Wilson Tsai was diagnosed with Tourette’s when he was in medical school, despite that, he has become a heart and lung surgeon based in the United States (picture posed by model)
Studies show that roughly half of all cases of the neurological disorder – which causes involuntary behaviours – are undiagnosed, leaving thousands without vital support
The concern comes as an upcoming BBC radio documentary tries to dispel some of the most commonly held stereotypes about Tourette’s.
Presenter and campaigner Aidy Smith, who has Tourette’s, aims to guide listeners through the range of symptoms which span far beyond shouting obscenities – in fact, only ten per cent of people with Tourette’s exhibit such behaviour.
It is much more typical for sufferers to have vocal tics, such as coughs or grunts, and motor tics – involuntary movements – such as eye rolling, head nodding and jerking limbs.
One of the most fascinating people Smith meets is US-based heart and lung surgeon Dr Wilson Tsai, who has endured tics such as finger-clicking and repetitive blinking since he was seven. Remarkably, when he is operating – removing lung and oesophageal cancers – the tics completely disappear.
‘It gives me that moment in time when I am not in constant motion from the Tourette’s syndrome,’ he says.
Dr Tsai was finally diagnosed with Tourette’s while at medical school, which led a teacher to cruelly tell him he would never be able to perform an operation.
‘It actually motivated me to prove him wrong,’ he says. ‘I think that’s why I chose one of the hardest paths in surgery. We really can do anything.’
Dr Tsai’s mysteriously vanishing tics are not uncommon, and studies have found that those with Tourette’s often find their symptoms are suppressed when they’re engaged with a challenging mental task.
Smith, who was diagnosed with the condition when he was ten, mainly has motor tics, and doesn’t swear or make inappropriate gestures. But at the age of 15 he discovered that speaking to an audience could make his tics almost vanish.
He says: ‘The moment I was on stage my tics would reduce and the excess energy that would have gone into them became a catalyst to my success.’
In the programme Smith also speaks to others who believe their Tourette’s has granted them exceptional talents.
This phenomenon has been highlighted in several medical studies – particularly in regard to faster reflexes and boosts in creativity – and is thought to be caused by surges in the brain hormone dopamine that patients experience when they have a tic, although this link has yet to be proven.
Dr Tsai believes his Tourette’s helped him develop exceptional skills in martial arts from a young age, and he is now a black belt in jiu-jitsu.
About one per cent of the global population have Tourette’s, and symptoms usually appear in childhood. Often the condition improves, or disappears altogether, within a few years.
Emma McNally, chief executive of charity Tourettes Action, says getting a diagnosis in childhood is vital. She adds: ‘It enables the child to access support networks and services. If a child has no support within school, their education may suffer as well as their mental health.’
But Dr Jeremy Stern, a consultant neurologist at St George’s University Hospitals in South London, warns that getting a diagnosis is a challenge: ‘People can wait a year for specialist help. Some children will seek help from mental health services, but won’t qualify if experts suspect Tourette’s because they don’t specialise in the condition.’
Smith says his years without a diagnosis – between the ages seven and ten – were the ‘darkest of his life’. In an interview with his parents for his documentary, his father Richard says one of the most harrowing aspects was seeing his son ‘crying and saying “please make it stop” – which obviously we couldn’t’.
Richard adds: ‘The mimicking, the teasing… adults staring and tutting – thinking you were just a badly behaved child – even people moving elsewhere on trains to get away from you. All because you had tics that you couldn’t prevent.’
Treatment is available for Tourette’s, including cognitive behavioural therapy, which helps people identify what triggers their tics and manage them. There is also medication that affects dopamine levels.
But many people with Tourette’s also think their condition doesn’t need to be treated, and that others should simply accept their tics.
‘Seeing more people with Tourette’s on TV programmes would help,’ says psychologist and Tourette’s expert Dr Seonaid Anderson. ‘And the condition should not be the main focus of the storyline, but just another aspect of their character.’
- The Truth About Tourette’s is on BBC Radio 4 at 11am on May 31.