The Hidden Struggles of Tourette Syndrome in Australia

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The Hidden Struggles of Tourette Syndrome in Australia

Max, an 18-year-old Australian diagnosed with Tourette Syndrome at age seven. This lifelong neurological condition is characterized by rapid, involuntary movements and sounds called tics. At present, one in every 100 primary and secondary aged Australian children is living with Tourette Syndrome—that’s around 55,000 people across the country. Max’s story sheds light on what it’s really like to live with this debilitating condition. He faces long delays to receive his diagnosis, lack of access to proper treatment, and must deal with deep-rooted social stigma.

The daily challenges of living with Tourette Syndrome are innumerable. As anyone who suffers from these conditions knows, millions endure long wait times to get an accurate diagnosis. After diagnosis, too many are thwarted in their ability to access effective treatment. In fact, half of those surveyed report that their medication is not effective enough to control their tics. Max himself has experienced severe bullying at school, which eventually pushed him to drop out of school before finishing Year 10. Tragically, Max’s mom has long since stopped counting the number of times he has tried to commit suicide. This illustrates the extreme mental health impact that can result from a lifetime spent with his condition.

The most recent research shows that 1 in 10 children with Tourette’s have attempted suicide. Furthermore, 80% of individuals surveyed experience tics daily, while half of the children report not having tic-free periods longer than five to ten minutes throughout the day. Even with these alarming statistics, the support systems offered to those with Tourette Syndrome is lacking.

Now, Max’s story reflects the harsh reality based by meaning living with Tourette’s and other tic conditions in this country: long waits for diagnosis, limited access to effective treatment, turned away by the NDIS, stigma, discrimination, not being believed, limited understanding and support in schools and workplaces, and this sadly results in severe mental health issues. These challenges are not new and they’ve been neglected for way too long. – Anonymous

The National Disability Insurance Scheme (NDIS) is designed to deliver support to Australians with disabilities. The statistics reveal a stark reality: three out of four individuals with Tourette’s have their applications denied. Only 1 in 20 receive NDIS funding. The economic impact is enormous — millions of families are dealing with high healthcare bills as they struggle with these issues.

The financial burden is great. The inability for some adults to work only compounds this issue. Furthermore, when they do seek healthcare, young people are imposed with high barriers to care. One in 20 had NDIS funding. Three-quarters of them had their applications rejected,” said Dr. Maxwell. My experience and the experience of other clinicians on the front lines is that they are denied because tic disorders are not recognized as a permanent disability.

Dr. Amanda Maxwell notes additional complications: “Now medication can be very helpful, but of the sample that we surveyed, 50% said that it did not control their tics or minimally controlled their tics. And there’s clear adverse drug events too with some of the medicines. And the effect on function is nothing short of dramatic. Approximately 80% of respondents live with daily tics, severely impacting their quality of life.”

This year’s Tourette Syndrome Awareness Week theme is “Understand the Impact.” Most importantly, it serves to shed light on this frequently mischaracterized condition and raise awareness amongst the general public. Professor Valsamma Eapen emphasizes the importance of better understanding and awareness among healthcare providers: “GPs are usually the first stop… often it’s not picked up as tics or Tourette. A better understanding is crucial as currently stuck in between two major paradigms.

Even with increasing awareness campaigns, there are still many Tourette Syndrome myths and misperceptions out there. These myths foster discord in our schools and societies. In short, they exponentially compound the damage on those impacted.

Max’s story is a compelling reminder that TS is more than just a neurological condition. It assumes a hugely damaging role in mental health and well-being. His mother reflects on his struggles: “Tourette’s took more than just the control of Max’s body. It has profoundly impacted mental health.”

Megan Ortiz Avatar
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