Students with Tourette Syndrome and their families are calling for greater understanding of the condition, as Australia marks Tourette Syndrome Awareness Week.
Tourette Syndrome is a neurological disorder currently affecting one in 100 children nationally, often diagnosed in childhood and characterised by rapid, repetitive, involuntary muscle movements and vocalisations called “tics”.
Tourette Syndrome Association of Australia says tics are often misinterpreted as a sign of behavioural abnormality and typically increase as a result of tension or stress, although can decrease with relaxation or fixation on a task.
Association president Mandy Maysey has three children with Tourette’s, including Tryxx, 11, and first took her role in the association when they were diagnosed.
“As a parent I want to do as much as I can for my kids and everyone with Tourette Syndrome. Taking on these roles helps me feel I’m doing something,” she says.
An interview with Mandy and Tryxx this week on the TV program Studio 10, showed viewers how students with Tourette’s and their families are impacted by the condition and characteristics of more severe tics.
A 2020 research report released by the TSAA, revealed the COVID-19 pandemic had the potential to impact those with the childhood-onset Gilles de la Tourette Syndrome, inducing anxiety, causing stress through quarantine practices and altering tics.
For university student Darcie Bowden, the start of the COVID-19 outbreak in Western Australia caused a great amount of stress that worsened what she now understands were tics, making it apparent she may have Tourette syndrome.
“I guess it kind of put a name to some of the experiences that had been happening since I was a kid, but in saying that I didn’t really know a lot about it so it was a little bit scary and daunting,” she says.
Ms Bowden says it took time to adjust to her diagnosis late in 2020 and manage its impacts on everyday tasks like studying or eating dinner.
“I’m quite lucky that my Tourette’s Syndrome is quite mild in comparison to a lot of other people.
“I get verbal and motor tics as well as coprolalia, which is the use of obscene language, swearing as you normally see in the movies,” she says.
Ms Bowden says her diagnosis was a learning experience for her family, in adapting to tics that involved her throwing a knife across the table at dinner or swearing in front of her younger siblings.
“It did take a little bit for that kind of adjustment to be made, but I really couldn’t have asked for any more support from my family,” she says.
Ms Bowden is in her third year of studying teaching at university and says the curriculum in her studies doesn’t offer extensive education on the condition, in comparison to ADHD or dyslexia.
She says her peers have benefitted from her knowledge of the disorder and its characteristics and is glad she can bring awareness into the classroom for her tutors.
“It [Tourette’s diagnosis] really made me understand a lot more about inclusive education and how important it is to understand everyone’s learning needs in the classroom,” she says.
She believes having conversations about Tourette’s this week will help inform more Australians about the condition that is often misunderstood.
“I think it’s really, really important to talk about Tourette’s syndrome, as it is a condition we don’t really know much about,” she says.
Mandy Maysey says Australians need to be reminded not all disabilities are visible and people should be cautious about judging others.
“Rather than assuming that kids are bad or adults are on drugs, consider whether it could be a medical condition,” she says.
“See the person, not the disability and just knowing that Tourette Syndrome is involuntary goes a long way to increase empathy and understanding.”
Darcie Bowden talks about the impacts of Tourette Syndrome and what Awareness Week means to her. Video: Mya Kordic.