Challenges continue for Australians with Tourette syndrome and tic disorders

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This article contains references to suicide and self-harm.

At the age of seven, Max was diagnosed with Tourette syndrome, a lifelong neurological condition characterised by repetitive, involuntary movements and sounds known as tics.

Max experienced bullying at school, leading them to drop out before the end of Year 10.

“Pretty much overnight, my tics went from, I was able to hide them, to not being able to hide them. It was full-blown swearing, punching out,” Max said.

Max said they have multiple self-injurious tics, including one where they repeatedly hit their eye. They dislocated and broke their elbow last year.

Now 18, Max wishes to work or volunteer at an animal shelter, but isn’t able to as employers believe their tics will frighten animals.

Measuring the hidden burden of Tourette and tic disorders on Australia image

Melissa Licari, a senior research fellow at The Kids Research Institute Australia, said such experiences have severely affected Max’s mental health.

“Tourette’s took more than just the control of Max’s body. It has profoundly impacted mental health,” Licari said. “Max’s mum has lost count of the number of suicide attempts.”

Vicky, Max’s mother, said Max’s mental health has deteriorated significantly over the last couple of years.

“I don’t believe that they want to die. They just don’t want to live like this,” she said, in a video posted by The Kids Research Institute Australia this week.

A person with blue and pink hair, sitting with their head resting on the shoulder of a woman with short hair.

Max (left) was diagnosed with Tourette syndrome when they were seven years old. Source: Supplied

In Australia, one in every 100 school-aged children lives with Tourette syndrome.

Licari said Max’s story reflects the ongoing challenges that young Australians living with the condition have been facing, including long waits for diagnosis, limited access to effective treatment, stigma and discrimination, and limited understanding and support in schools and workplaces.

“This sadly results in severe mental health issues. These challenges aren’t new and they’ve been ignored for far too long,” Licari said.

Licari is a co-author of Impact for Tourette, Australia’s first survey of its kind in Australia, looking at the mental health of people living with Tourette syndrome.

It interviewed more than 200 persons and caregivers, finding that almost half of the children with tics showed signs of depression, and nearly half of the caregivers said their child had expressed suicidal thoughts. One in 10 has attempted to take their own life.

More than 70 per cent of adults had thought about ending their lives. One in four adults had attempted suicide — five times higher than the national average.

A woman wearing a blue polo shirt that reads "The Kids Research Institute" is sitting in an office. There is a computer screen behind her.

Melissa Licari said Australians living with Tourette syndrome face ongoing challenges, including long waits for diagnosis, limited access to treatment, stigma and discrimination. Source: Supplied

The report includes seven key recommendations, including funding to develop a National Clinical Guideline for the diagnosis and treatment of tic disorders.

Amanda Maxwell is a clinical psychologist and clinical research manager at the UNSW Tic Clinic.

She said a lack of psychological services has pushed people to seek medication to treat tic-related disorders.

“Medication can be very helpful, but of the sample that we surveyed, 50 per cent said that it did not control their tics or minimally controlled their tics. And there are obvious side effects as well with some of the medications,” she said.

Vicky said she believed a diagnosis had limited impact.

“It’s like, ‘Well, your child’s got Tourette’s. We’ll try this medication’, and the medication doesn’t particularly work. And it’s like, what now? ‘Oh, well, there’s nothing else. That’s it’,” she said.

Maxwell said more than 80 per cent of those with Tourette syndrome who were surveyed said they experienced tics daily.

“About 50 per cent of the children reported that they didn’t have tic-free periods of more than five to 10 minutes in a day,” she said.

Significant financial toll

With those symptoms, many living with the condition are unlikely to be able to work.

But according to Maxwell, they’re also struggling to get NDIS applications approved.

“The financial burden is great. It’s not just because some adults are unable to work, but there is also a significant cost of accessing healthcare for these young people. One in 20 had NDIS funding. Three out of four had their applications denied,” she said.

Maxwell said in her experience, young people were denied NDIS support because tic disorders were not considered a ‘permanent’ disability.

“Yet even adults we work with — that clearly have tics that have persisted into adulthood and that experiencing significant functional impairment — are also being told that their disability is not a permanent disability and denied funding,” she said.

Professor Valsamma Eapen is scientia professor and chair of child psychiatry at UNSW Sydney.

She said while a comprehensive care plan is required to look after people living with tics, sometimes, even health professionals don’t have much awareness of what’s needed to support their patients.

“GPs are usually the first stop, but it could also be paediatrics in neurology, psychology, and some will go to the eye specialist if the fast tic is blinking or screwing of the eye, or ENT specialist when they have a vocal tic like grunting or throat-clearing and so on. But often it’s not picked up as tics or Tourette,” Eapen said.

“No-one believes me,” Max said. “No doctors, no nurses, no psychiatrists. No-one.”

The survey found one in four people waited more than two years for a diagnosis, and one-third were not offered any services or support after diagnosis. Only 40 per cent said their experience with treatment was positive.

The report also found there is a shortage of psychologists with the expertise to offer treatment for tic disorders.

A woman wearing a black turtleneck and red blazer speaking in a park, near trees.

Valsamma Eapen says it’s critical that a national guideline be established for tics and Tourette syndrome, so there can be a standardised approach to early identification, assessment, and appropriate support. Source: Supplied

Eapen said more understanding is critical, and there were several unhelpful views about tics and Tourette syndrome.

Those included the assumption that people would “grow out of” it. Another is the understanding of Tourette solely as “the swearing syndrome where people blurt out obscenities”, leading to some people not being believed about having the syndrome.

“Neither is a helpful approach because the majority would fall somewhere in between,” Eapen said.

‘Indeed a human rights issue’

Eapen said more training for professionals was needed, urging the government to launch a national guideline on Tourette syndrome.

“A national guideline will provide uniform minimum standards and a consistent approach that’s agreed upon by all consumer stakeholders and professionals as to the framework, to awareness, early identification, comprehensive assessment, and also matching supports.

“That should also include accommodations at school and for disability supports, where it is applicable. It is indeed a human rights issue for the 55,000 Australians who are living with Tourette’s.”

For now, Vicky said she has hope Max will “remember who they were and what brought them joy”.

Readers seeking crisis support can ring Lifeline on 13 11 14 or text 0477 13 11 14, the Suicide Call Back Service on 1300 659 467 and Kids Helpline on 1800 55 1800 (for young people aged up to 25). More information and support with mental health is available at beyondblue.org.au and on 1300 22 4636.