This report presents findings from the 2024 Impact for Tourette’s Survey, containing key recommendations to help improve the lives of those impacted by Tourette Syndrome and other tic disorders. The findings are relevant to individuals with tic disorders, their caregivers, medical and allied health professionals who support diagnosis and treatment, and teachers and employers who play an integral role in supporting their needs in educational and professional settings.

The report identifies the unmet needs of children and adults with tic conditions across seven key impact areas: diagnosis, functioning, intervention, education, employment, finance and wellbeing. The survey identified three priority areas for change: 

1. improved recognition of tic conditions as a disability
2. increased access to funding for intervention and support
3. improved knowledge among professionals, such as general practitioners and educators.

Key findings

• Survey respondents report limited access to healthcare services and intervention.
• Two thirds of respondents report moderate to extreme impacts on day to day life.
• More than three quarters of respondents report moderate to extreme impacts on their education.
• Half of respondents report moderate to extreme impacts on employment.
• People with tic conditions and caregivers report significant impacts on wellbeing and mental health.

Key recommendations

• Government funding for the development of a National Clinical Guideline for diagnosing and treating tic disorders.
• Allocate National Disability Insurance Scheme (NDIS) capacity building funding to develop resources and training, raising awareness and building understanding.
• Adjust NDIS policy to ensure accurate assessment and appropriate support for individuals with tic disorders who have significantly reduced functional capacity.
• Include targeted funding in NDIS foundational supports and beyond for services supporting individuals with tic disorders and families.
• Set clear standards for supporting students with tic disorders.
• Invest in research for innovative treatments and care pathways, potentially through a National Centre of Excellence in this field.