Support needed for people with Tourette syndrome

The crushing burden of Tourette syndrome has been revealed in new research.

The first national survey evaluating the unmet needs of people with Tourette syndrome and other tic disorders found that the mental health effects of Tourette syndrome are severe — finding that one in two children with a tic-related disorder have thought about ending their life, while one in ten affected children and one in four adults have attempted suicide.

It is estimated that 50 000 Australian children and adults have a lifelong tic-related condition, most commonly Tourette syndrome, yet many struggle to get an accurate diagnosis or appropriate support.

The national Impact for Tourette’s survey from The Kids Research Institute Australia captures the experiences of more than 200 people with the disorder and their caregivers around Australia.

Treatment is hindered by long wait times for a diagnosis, a lack of knowledge by GPs of tic-related disorders, and a lack of effective support or treatments.

Report co-author Professor Valsamma Eapen is the Chair of Child Psychiatry at UNSW. She said many professionals assume that Tourette syndrome is limited to uncontrolled swearing, or trivialise the effects of constant ticing on people’s lives.

“I call it the orphan condition as no one owns it,” Professor Eapen says.

On the one hand, it’s a physical condition with involuntary movements, but equally on the other hand, there are significant mental health comorbidities, which is absolutely integral to the experience, the cause, the impact and the outcomes.

“But neither camp owns it. Tourette has no home. Tics and mental health issues interact with one another but professionals have no confidence or skill sets to deal with it in an integrated way.

“Some treat the tics as a physical condition. Others may treat the mental health issues, but that’s often not helpful. And the lack of awareness is pervasive across families, communities, schools, work, and even among health professionals, they are often lost between the different disciplines.”

Stigma, discrimination and a lack of understanding

Co-author Dr Amanda Maxwell is a clinical psychologist and Chair of Child Psychiatry at UNSW Sydney. She says many people with Tourette syndrome are turned away by the National Disability Insurance Scheme, yet they face incredible stigma in society and discrimination because they are not believed.

The study found that there is limited understanding and support in schools and workplaces, which she says results in severe mental health issues.

“In terms of diagnosis, what was found was that one in four waited over two years for diagnosis with the longest waits in adolescence,” Dr Maxwell says.

“When they were diagnosed, the clinicians diagnosing them often didn’t have a great knowledge of tic disorders, and many were not referred onto a treatment pathway.

“So about 40% did not receive any therapy or medication. In fact, some of the people that were surveyed said they got things like Google printouts on tic disorders or were just referred to the national charity Tourette Syndrome Association of Australia (TSAA).

“For those that do receive intervention, one of the big issues in Australia is that what is offered tends to be based on service availability rather than clinical need.”

The impact of Tourette syndrome on education is also hampered by teachers’ lack of understanding of the condition and how to best support young people with a tic-related disorder.

“So 75% reported a moderate to extreme impact on the education, and three out of four children reported being bullied or ridiculed,” Dr Maxwell says.

“But I think something that I was very concerned about was that one in three reported being bullied or ridiculed by their teachers.

“There’s a similar pattern in the employment world with one in 10 of the adults living with tic disorders, unable to work because of the severity of their tics.”

The impact of tics

Dr Maxwell says the study found that while medication can be helpful, 50% of those surveyed said it did not control their tics or had unwanted side effects. A shortage of psychologists across Australia that have the skills or expertise regarding tics is also an issue.

“The impact on functioning was great. So 80% of our survey, those surveyed experienced tics daily and about 50% of the children reported that they didn’t have tic-free periods of more than five to 10 minutes in a day,” she says.

“So they’re ticing all through the day. The impact on daily functioning can be things such as impact on attention, concentration, sleep, but also the ability to go out and socialise, meet up with friends.

“At the more severe end, the impact on functioning can be things that we all take for granted, such as the ability to hold a cup and drink, to eat from a plate, to write.

“Of concern also was the number of people in our survey that reported pain and injury associated with their tics. Eighty-five per cent reported experiencing pain and two out of three sustained injuries. Some of these are things like pain from repetitive movements like neck tics, but at the more severe end it was things like dislocation, fractures and lacerations.”

A severely misunderstood condition

Dr Melissa Licari is a senior research fellow at the Kids Research Institute Australia and UNSW Sydney. She says the condition is severely misunderstood and under-recognised.

“Our report shows three out of four children had been ridiculed or bullied by other students, while a third had been ridiculed or bullied by teachers,” Dr Licari said.

“Two out of five affected adults reported they were unable to work due to the severity of their tics — leading to financial strain — while similar numbers had experienced discrimination in the workplace, including ridicule or bullying by co-workers.”

The report’s key recommendations include seeking funding to develop a national clinical guideline for diagnosis and treatment, better funding for resources and training programs for health professionals, educators and school staff, and targeted funding for enhanced support guidelines and clear standards for students with tic disorders.

TSAA president Mandy Maysey says that sadly the findings are not a surprise, as despite its prevalence, Tourette syndrome remains under-recognised, often overlooked or misdiagnosed.

She says that the study has provided valuable insights into the challenges, sacrifices and financial and emotional burdens experienced by people with tic disorders and their families.

“Many individuals with Tourette syndrome go through life without receiving an accurate diagnosis, leaving them without appropriate support,” she says. “They also often face discrimination due to a lack of awareness around their symptoms by everyone from teachers to health providers and employers.”

If you or anyone you know needs help:

• Suicide Call Back Service on 1300 659 467
• Lifeline on 13 11 14
• Aboriginal & Torres Strait Islander crisis support line 13YARN on 13 92 76
• Beyond Blue on 1300 224 636
• MensLine Australia on 1300 789 978

Resources for people with Tourette syndrome, their families, and medical professionals can be found at The Tourette Syndrome Association of Australia.

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