Clarke is speaking to Sonia Gray on the NZ Herald podcast No Such Thing As Normal. This week’s episode takes a close look at the reality of Tourette’s syndrome and explores what is currently known about this often misrepresented condition.
Tourette’s is commonly associated with compulsive swearing and obscene language, known as coprolalia, but only 10% of those with Tourette’s have this trait. Clarke does have coprolalia, so involuntary outbursts of coarse language are something he has to live with – and has to constantly apologise for.
A turning point for the 30-year-old came three years ago. After years of trying to suppress his tics, he decided to embrace them. And TikTok users have embraced them too. His account, Uncle Tics, has 4.6 million followers, making him one of the most popular NZ-based TikTok creators.
But life is still full of challenges. Anything involving movement is unpredictable, and he has to be constantly aware of his proximity to other people.
“You never know what your tics are going to do,” Clarke says. “I can’t sit behind anyone on a plane in case I hit them on the back of the head. I don’t want to hurt anyone.”
Psychologist Hilary Mack says Tourette’s syndrome is distinct from other tic disorders in that there must be a number of motor tics and a verbal tic present for at least six months. “Tics can wax and wane, they fluctuate, they come and go. They very much have their own trajectory.”
According to Mack, there is a strong connection between Tourette’s and other neurodivergent conditions. “For people with significant tics, there’s a 90% chance they’ll have some struggles with ADHD and or OCD. We think that’s because the parts of the brain that are involved in all those conditions ... have shared etiologies. They share the same underlying factors and pathways.”
There’s a common misconception tics can be caused by stress and anxiety but Mack says while they might exacerbate the tics they aren’t the cause of them.
Fyfe, 10, also has Tourette’s syndrome and two years ago, like Clarke, she developed coprolalia.
Fyfe’s mother Amanda says they were devastated when Fyfe’s “swearing tic” started. “It seemed so cruel because she just wasn’t a kid that swore,” she says. “All of a sudden, she just started saying f*** over and over and over. It was also quite loud, and it would come out with a force that almost made her sound like she was angry.”
The exact brain mechanism behind Tourette’s syndrome still isn’t clear. And scientists still aren’t sure why someone with coprolalia uses expletives and obscenities. But there is agreement that individuals with Tourette’s aren’t in control of their tics.
Fyfe remains a happy and loving kid, who is accepted and adored by her many friends. But mum Amanda wishes there was more understanding around Tourette’s syndrome.
“There’s this expectation on how we’re meant to behave, but we’re all unique … so if we can just all be a little bit more understanding. Then [Fyfe] can clap and jump and beep – and occasionally swear, and it’s totally fine.”
No Such Thing as Normal is a NZ Herald podcast, hosted by Sonia Gray, with new episodes available every Saturday.
Season one won Best History & Documentary Podcast at the 2024 NZ Radio and Podcast Awards, and was one of Apple Podcast’s Most Shared series in 2023.
The series was made with the support of NZ on Air.
You can listen to it on iHeartRadio, Apple Podcasts, Spotify or wherever you get your podcasts.
