Australians with Tourette syndrome face widespread neglect, new report reveals

Australians living with Tourette Syndrome and other tic disorders are grappling with daily pain, mental distress, and serious health risks—often without adequate support or access to care, according to a new national report.

The Impact for Tourette’s Survey, conducted by the Tourette Syndrome Association of Australia (TSAA) in collaboration with the Kids Research Institute Australia and the University of New South Wales (UNSW), sheds light on what it describes as an “invisible crisis.” The survey is the first of its kind in Australia and captures the lived experiences of 206 individuals and families across the country.

The findings paint a bleak picture: long waits for diagnosis, little to no post-diagnosis support, and daily tics that result in exhaustion, injury, and chronic discomfort. Both children and adults face alarmingly high rates of depression, with many reporting suicidal thoughts or past suicide attempts. Families, the report states, are stretched to breaking point in a system that fails to understand or respond to the full impact of tic disorders.

While Tourette Syndrome affects more than 50,000 Australians, the condition remains largely overlooked across the health, mental health, and disability sectors. The psychological toll, especially for children, is described as relentless. The report notes that emotional harm often stems not from a single event but from years of exclusion, mockery, and stigma—what it calls a “death by a thousand cuts.”

The survey was co-designed with individuals living with tic disorders, who shaped the research questions, helped determine priorities, and contributed to the final report. Their voices, TSAA says, are central to the findings and recommendations.

The 94-page report, along with a four-page summary, aims to provide a clear, evidence-based roadmap for action and urges health and government systems to address the urgent needs of this often overlooked community.

Learn more about Tourette syndrome at www.tourette.org.au

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If you or someone you know needs support, please contact:

• Lifeline: 13 11 14 or lifeline.org.au
• Kids Helpline: 1800 55 1800 or kidshelpline.com.au
• Parent Line NSW: 1300 130 052 or parentline.org.au
• Headspace: 1800 650 890 or headspace.org.au

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