Max, a very young Australian man, was diagnosed with Tourette syndrome at the age of only seven. This diagnosis has caused such debilitating challenges that profoundly impact his life every day. TS is a neurological condition characterized by repetitive and involuntary motor and vocal tics. It affects almost one in 100 school-aged children in Australia. Max’s story takes us inside the urgent mental health crisis and social predicament affecting so many people with this disease and underscores the importance of addressing both.
Since being diagnosed, Max has had multiple tics every day, including self-injurious behaviors like hitting their eye continuously. The severity of these tics were compounded over the years, resulting in a marked decline in Max’s mental state. Though more than 80% of people with Tourette syndrome have tics daily, Max’s case is extreme even for this disorder.
In recent years, Max has made several attempts on his life. Their mother, Vicky, has lost count of how many times she’s thrown in the towel. This underscores the extent to which Tourette syndrome can impact mental health. Vicky expresses her concerns with the lack of support. She explains, “They just go, ‘Oh, your kid has Tourette’s. We’ll try this medication,’ but that medication usually doesn’t work. It’s like, what now? ‘Oh, well, there’s nothing else. That’s it.’
This bullying that Max experienced was extremely traumatic for him. In the end, he chose to leave school prior to completing Year 10. The increased social isolation and mounting mental health issues as a result of our current climate threw Max into a tailspin.
Though all of these challenges are daunting, Max has dreams of one day working or volunteering at an animal shelter. But then, potential employers become worried that Max’s tics will scare off animals. This rejection underscores a prevalent misconception about Tourette syndrome, often mistaken for “the swearing syndrome where people blurt out obscenities,” as described by Valsamma Eapen, a leading expert in the field.
Melissa Licari, senior research fellow, paints an alarming picture. She notes that Max’s journey to this point highlights the ongoing fight young Australians with Tourette syndrome face. She states, “Tourette’s took more than just the control of Max’s body. It has profoundly impacted mental health.” The facts are pretty scary y’all! More than one in four adults with Tourette syndrome have made a suicide attempt, a rate that is five times the national average. Even more alarming, nearly one in ten people with Tourette syndrome have attempted suicide. Furthermore, more than 70% of the adults who are living with this condition have considered suicide.
The societal response to Tourette syndrome has been hopelessly inadequate. Eapen says it’s essential to provide appropriate accommodations within schools and disability support, in general. He frames this concern as a human right for the 55,000 Australians born with Tourette’s.
In terms of medical treatment, there are options to help manage tics and provide relief, but the effectiveness varies greatly among individuals. Eapen pointed to a surprising result from a new national survey. Half of study participants reported that their medication did not adequately help their tics or only helped a little. She said there are sometimes harmful side effects that come with these treatments as well.
For parents such as Vicky, finding their way through this confusing landscape is no easy task. She urges others to “remember who they were and what brought them joy” when grappling with the effects of Tourette syndrome on their loved ones.
Max’s story illustrates just how complex and intermingled mental health issues can be with neurological disorders like Tourette syndrome. They have articulated the drastic change in their tics: “Pretty much overnight, my tics went from, I was able to hide them, to not being able to hide them. It was full-blown swearing, punching out.” This quote captures both the often visible effects of the condition as well as the emotional burden that comes with it.
