Shocking findings about Tourette syndrome in Australia

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One in two children with a tic-related disorder have thought about ending their life, while one in 10 children and one in four affected adults have attempted suicide according to new research.

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

The Kids Research Institute Australia and the University of New South Wales Sydney led the research, which revealed the crushing daily challenges faced by Australians living with Tourette syndrome and other tic-related disorders.

Dr Melissa Licari and Professor Valsamma Eapen, both from UNSW Sydney, headed the national Impact for Tourette’s survey and captured the experiences of more than 200 individuals and caregivers across Australia.

The research found that bullying, discrimination, lack of understanding and the exhaustion of living with their condition were among the factors that drove many of those affected to despair.

Dr Licari said students had reported negative social interactions that were significantly impacting their mental well-being.

“Heartbreakingly, almost three-quarters of the adults and one in two of the children with tic-related disorders reported they had contemplated suicide, while one in four adults and one in 10 children had actually attempted suicide,” Dr Licari said.

“A third of the children and almost half the adults had engaged in self-harming behaviours.

“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.

“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 also highlighted difficulties obtaining a diagnosis, accessing treatments and obtaining disability funding. Three out of four respondents who had applied for National Disability Insurance Scheme funding had had their applications declined.

Professor Eapen said there are currently no national standards or clinical practice guidelines outlining recommended therapies or interventions following the diagnosis of a tic disorder.

“One in four respondents reported they had waited more than two years to receive a diagnosis, with some waiting up to four years, while a third of those who did receive a diagnosis received no recommendations for services or interventions,” she said.

“Families are facing a long and difficult path to diagnosis, then an even trickier path to find appropriate treatments. This places an enormous strain on families, leading to significant mental health impacts.”

The report included seven key recommendations, including funding to develop a National Clinical Guideline for the diagnosis and treatment of tic disorders, along with the resources to support the mental well-being of people with these conditions.

In October, Talking Disability reported Prime Minister Anthony Albanese faced backlash from advocates of Tourette syndrome after using the term ‘Tourette’s’ as an insult directed at Shadow Treasurer Angus Taylor.

The remark was made during question time on Tuesday, October 8, 2024, when discussing tax changes.

While participating in the scheduled question time, Prime Minister Albanese suggested that Shadow Treasurer Taylor’s disruption was related to a neurological condition.

Later, on the evening of October 8, 2024, Prime Minister Albanese apologised for his comment, in which he referenced Tourette syndrome as an insult, hours after the initial comment withdrawal was made.

Do these findings come as a shock to you and how do you feel about the new research? Let the team at Talking Disability know and subscribe to the newsletter for more information, news and industry updates.

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