Tourette syndrome, a neurological condition marked by involuntary movements and vocalizations known as tics, remains widely misunderstood despite its genetic roots. Recent stories from people living with Tourette syndrome shed light on the intense emotional and physical suffering experienced by those impacted by TS. Advocates such as Jazmin Edson and Sam Wannan are taking action to increase awareness. They urge society to practice understanding and compassion towards people who live with this condition.
Jazmin Edson, diagnosed with Tourette syndrome at a young age, recalls her first tic attack in February 2021 during a year 12 English class. This episode was a four-and-a-half-hour long ride. It resulted in her fighting not just the physical impacts of her condition, but the social stigma that frequently accompanies it. Her peers were convinced she was faking her tics for attention, a misunderstanding that added to her alienation.
The Impact for Tourette’s report has revealed alarming statistics: over 80% of individuals with Tourette syndrome experience daily tics, which can lead to serious emotional distress. The report states that one in four adults and one in ten children with Tourette syndrome have attempted suicide, highlighting the urgent need for societal reform and support.
The Struggles of Living with Tourette Syndrome
Through all of the years she spent in school, Edson encountered countless hurdles, and she wished for a better, more inclusive space. “I would love for people to give those with Tourette’s the same compassion and consideration they give people with other disabilities,” she stated. This feeling is shared by so many advocates who are equally dedicated to changing the narrative about Tourette syndrome.
Sam Wannan, who has coprolalia, a form of Tourette’s marked by involuntary swearing, voiced the same notion. Looking back on his school years as a student having received the award, Martinez felt thankful. He was just grateful he had skirted the challenges of having to live with Tourette syndrome in such a culture. Yet in doing so, he opens his heart to the pain experienced by others who suffer stigma and misunderstanding.
“Those statistics aren’t symptoms of Tourette’s; they are symptoms of society treating Tourette’s wrongly,” said Wannan. This perspective emphasizes the pressing need for awareness and education regarding the condition, as many individuals are left feeling invisible in their struggles.
Advocacy Efforts and Government Response
South Australian government officials who recently sat down with TSAA, the Tourette Syndrome Association of Australia. This meeting was a historic leap forward in addressing these key issues head on. According to TSAA Executive Officer Conor Maysey, South Australia is the first state or territory government to engage with the association. This other engagement happened after the release of our Impact for Tourette’s report in June. Maysey highlighted the critical need for reform in the National Disability Insurance Scheme (NDIS), stating, “We had a family that literally sold their house in order to go to court to get their child NDIS funding for Tourette’s.”
For the past year, the TSAA has been working to raise awareness about the hardships experienced by people with Tourette syndrome. They are calling on other disability stakeholders and government ministers to listen to the lived experiences of those affected. The National Disability Insurance Agency (NDIA) recently acknowledged that people with debilitating Tourette syndrome are eligible for support. Even within conditions that generally qualify, their eligibility can hinge on the extent to which the condition impacts their day-to-day functioning.
Definitely, we have a few moments where we’re all laughing collectively. At this moment, everybody’s laughing at us, and that’s just unacceptable. Maysey added, underscoring the importance of creating an environment that recognizes the humanity and value of people with disabilities.
A Call for Greater Understanding
Advocates such as Edson and Wannan are still pushing to educate society so that we can learn to get past stereotypes of Tourette syndrome. As recently as last year the Prime Minister made Tourette’s the subject of autocompletism in parliament, alluded to by Wannan. It mustn’t be seen as a caricaturish ailment, and we must illustrate it extra truthfully in public discourse.
Edson’s experience serves as a powerful reminder of the real impact that societal attitudes can have on individuals living with Tourette syndrome. That’s why the one in four adults statistic doesn’t surprise Troupe, she said. She wants more people to hear this truth, because she knows that education is the first step in building empathy and connection.
