Madison Eastmond, Murray Pioneer

Two Riverlanders have presented a first-of-its-kind survey to SA Parliament, with research findings revealing the challenges that many face while living with Tourette’s.

Contingent member, and Riverland Youth Theatre (RYT) artistic director Sam Wannan, and RYT youth intern Rowen Hurrell, joined the Tourette Syndrome Association of Australia (TSAA) to share the Tourette’s Impact Report at State Parliament last week, with the inaugural national survey communicating the difficulties faced by individuals living with tic disorders in Australia.

“It was all put together by the TSAA, which I am a part of, and they have worked together with a range of organisations and universities to research the reality of Tourette’s, the mental health impacts it has on people, and the lack of education, National Disability Insurance Scheme (NDIS) access, and services,” Mr Wannan said.

“It’s the first of its kind, and it was a chance to present this big body of work to state politicians — it was very special to be there alongside other people with Tourette’s to share this, and feel listened to.”

Based on 206 individuals living with Tourette’s, the survey discussed diagnostic journey, the daily functional challenges of living with tics, and the varied experiences with available treatments and therapies, with statistic including:

• One-in-four people waited more than two years for a diagnosis.
• One third were not offered any services or support after diagnosis, with only 40 per cent saying their experience with treatment was positive.
• More than 80 per cent of people experience tics every day, with many saying their tics cause pain and emotional distress.
• Two-out-of-three people had been injured by their tics.

The survey also sought to understand obstacles faced in education and employment, as well as accompanying financial strains, with statistics including:

• Three-in-four respondents had been bullied at school.
• Almost one in three were bullied by teachers, with most caregivers saying that teachers had little understanding of tic conditions.
• Two-out-of-five adults said their tics made it impossible to maintain employment, with many families under financial pressure and feeling shut out of the workforce.

Finally, the survey examined the emotional and social struggles experienced by individuals, and how these factors influence overall quality of life, with statistics including:

• Almost half of children with tics showed signs of depression.
• Nearly half of caregivers said their child had expressed suicidal thoughts.
• One-in-10 children had attempted suicide.
• More than 70 per cent of adults had thought about ending their life.
• One-in-four adults had attempted suicide – five-times higher than the national average.
• Most adults said their tics had a serious impact on their mental health.
• More than half of caregivers said their own mental health had been badly affected by the demands of caring.

“These findings illustrate the significant clinical, psychological, educational, and socioeconomic impacts of tic disorders,” the report read.

“The data reveal critical gaps in diagnosis, treatment, and support systems.

“Without targeted policy and healthcare responses, individuals with tic disorders will continue to face unnecessary suffering, impaired quality of life, and remain in the midst of a mental health crisis.

“Urgent, evidence-based action is required to address these unmet needs.”

Key recommendations included:

• That government funding be provided to develop a National Clinical Guideline for the diagnosis and treatment of tic disorders, designed for use by clinical and allied health professionals and to provide awareness and guidance to consumers and the community.
• As part of the capacity building component of the NDIS, funding should be allocated to develop a suite of resources and training programs aimed at raising awareness and improving understanding of tic disorders among key stakeholders.
• Adjust the NDIS policy settings within the National Disability Insurance Agency (NDIA) to ensure that individuals with tic disorders are appropriately assessed, with those experiencing substantially reduced functional capacity receiving appropriate funding and support.
• Include targeted funding in the NDIS Foundational Supports program for services that enhance support for individuals with tic disorders and their families.
• Targeted funding be provided, beyond the NDIS’ Foundational Supports Program, for mental health and emotional wellbeing services for individuals with tic disorders and their families.
• That State and Territory Departments of Education develop clear standards for accommodations and supports for students with tic disorders, ensuring equitable access to education and provide support at the local school level for these to be implemented.
• That major medical and research funding bodies, including the National Health and Medical Research Council and Medical Research Futures Fund, invest in research dedicated to innovative treatments and care pathways for tic disorders. This could be facilitated through a National Centre of Excellence in this field.

Living with Tourette’s for the past three-to-four years, Rowen said they were “not surprised” by the research findings.

“For me, I felt like I was written off (by medical staff) immediately,” they said.

“I also felt like I had never had access to information about Tourette’s — I had no idea what I was experiencing.

“However, because of the people I surround myself with, I don’t face as much hostility as I could.

Mr Wannan hoped that the report would help more people understand Tourette’s “is not just tics”.

“It has so much to do with executive functioning — it’s a whole neurological condition,” he said.

“People have a very narrow understanding of Tourette’s, they think it’s just saying swear words — it’s not the whole picture at all.

“I think when that understanding is created, (more tolerance) and services will hopefully begin to become more accessible.”

While advocacy was their top priority, both Rowen and Mr Wannan said it was amazing to have the chance to be surrounded by others living with Tourette’s.

“I’ve only ever meet two other people with Tourette’s,” Rowen said.

“It was just fantastic, and such a good time — I heard so many amazing tics.

This article appeared in Murray Pioneer, 27 August 2025.