National Report Exposes Urgent Gaps in Support for Australians with Tourette Syndrome

A landmark national survey has unveiled the deep systemic barriers faced by Australians living with Tourette Syndrome and other tic disorders, sparking calls for urgent government reform and mental health investment.

Released today, the "Impact for Tourette’s" report — the first of its kind in Australia — reveals a distressing portrait of delayed diagnoses, daily struggles with physical and emotional pain, educational discrimination, and exclusion from employment and disability supports.

The report, authored by leading researchers in partnership with the Tourette Syndrome Association of Australia, draws on responses from over 200 individuals and caregivers and delivers seven evidence-based recommendations for reform. It paints a picture of a misunderstood condition hidden behind stereotypes and bureaucratic indifference.

“People don’t understand how much [tic disorders] impact daily life,” said one caregiver. “Being recognised as a disability would help with this and accessing support.”

Key Findings:

Delayed Diagnosis: One in four waited more than two years for a diagnosis. Adolescents faced the longest delays, often up to three years.

Mental Health Crisis: 71% of adults with tics have experienced suicidal ideation; 25% have attempted suicide. Among children, 47% expressed suicidal thoughts, with 10% having attempted suicide.

Educational Disadvantage: 75% of students faced bullying from peers; nearly one-third experienced ridicule from teachers. Caregivers say educators lack knowledge, and school accommodations are often inadequate.

Workplace Discrimination: Two-thirds of working-age adults felt unsupported by their employers, and 42% experienced discrimination on the job. One in ten are unable to work due to the severity of their tics.

Inadequate Health Interventions: Only 40% of respondents had positive experiences with treatment. Most psychological therapies were found ineffective for tics, focusing instead on anxiety or depression.

NDIS Access Barriers: Fewer than 5% of participants received NDIS support. Three in four applications were rejected, even when tics severely limited daily functioning.

High Physical Toll: Two-thirds of people with tics have sustained injuries, with common issues including pulled muscles, whiplash, and chronic pain from repeated movements.

Recommendations for Change

The report calls for:

A National Clinical Guideline for diagnosis and treatment of tic disorders.

Expanded NDIS eligibility and tailored funding, including within the Foundational Supports program.

Nationally consistent educational accommodations for students with tic disorders.

Workplace training to combat stigma and increase inclusion.

Targeted mental health investment for individuals and caregivers.

A National Centre of Excellence to coordinate research and innovation.

Capacity-building resources for educators, healthcare workers, and employers.

Voices from the Community

“I was told my tics were anxiety and handed a two-page Google printout,” said an adult participant. “It took over a year for anyone to offer treatment.”

“Pain stops my daughter from doing most things she enjoys,” another caregiver shared. “Her body is deconditioned from lack of movement.”

Despite the challenges, respondents praised the Tourette Syndrome Association of Australia (TSAA) as a vital lifeline. Nearly half cited TSAA as their only reliable source of support following diagnosis.

A National Wake-Up Call

Tourette Syndrome affects approximately 1 in 100 Australians, yet remains overlooked by many health and disability systems. This report provides not just data but a collective plea for recognition, investment, and dignity.

“TS is still such a misunderstood condition,” said one adult with tics. “Medical treatment breakthroughs would be life changing.”

As the federal government prepares its mid-year policy review, advocates hope this report becomes a catalyst for long overdue reform.

For more information or to access the full report, visit the Tourette Syndrome Association of Australia’s website.