Think of Tourette’s and you might think of involuntary swearing, gestures or noises, often portrayed in pop culture as something to be made fun of. In reality, only 10 per cent of people with Tourette’s have the ‘swearing tic’, coprolalia. In New Zealand, one in 100 young people live with the neurological disorder and the stigma that comes with it. Here an Auckland-based father and son both living with Tourette’s explain what it’s really like, and what needs to change about the way it’s perceived in New Zealand.  

When Chris Henderson was 9 years old, a GP prescribed him “harsh” antipsychotic medication and told him to stare into a mirror to see how “crazy” he looked.  

It was 1987 and Henderson had just been diagnosed with Tourette’s syndrome. He’d been experiencing some of the signs since he was as young as 3 or 4 years old, such as eye rolling and motor tics.  

“When you’re 9 and you’ve got a doctor telling you that, and you’ve got a mum and a dad and a sister that care and you don’t know what to do except stare in a mirror, you kind of have to figure it out yourself,” he tells the NZ Herald.  

Now 46, he’s the founder and CEO of Pita Pit New Zealand and a father of three. But ever since his diagnosis, Henderson says, “it’s still always felt like I couldn’t talk about it, because of those early years.”  

Growing up, his friends knew he wasn’t “weird or odd” for having Tourette’s, but during his intermediate and high school years, “the bullying became really hard”.  

His tics haven’t gone away or changed over time. “I’m probably able to manage them slightly better as an adult,” Henderson says.  

“The same triggers are nervousness and anxiety, pressure, tiredness. And so when I feel any of those symptoms, my tics flare up a little bit. When I’m relaxed and in a really pure place of happiness and contentment, they tend to subside.”  

After his own “horrific” experience being medicated with haloperidol - which is also used to treat symptoms of schizophrenia and bipolar disorder - he says, “There’s not a direct medical fix, in my opinion, for Tourette’s.”  

What does help is general wellbeing; a balanced diet, exercise, and support from family and friends.  

Two of Henderson’s three children, including son Ryder, 11, also have Tourette’s. Asked whether his own experience has helped him parent his sons living with the condition, he says it’s actually the other way around.  

“To tell the truth, my kids talk about it better than I do. They really do,” he shares. “But for me, I still feel uncomfortable about raising it with them, because of the traumas I had when I was Ryder’s age.  

“So the beautiful thing about it is we just chat about it. We just chat. ‘Oh, Dad, this is my tic today’. My other son will come home and go, ‘Dad, I had this tic today that was so weird or funny’.  

“It’s just a part of the brain that’s wired a bit differently. Ryder’s just a normal kid, I’m a normal father, business owner, husband, sportsman.”  

Henderson says it’s important that there’s more research into the disorder, which isn’t widely understood, as well as better awareness from the public and Government around just how many young people live with the symptoms today.  

“What needs to change for people living with Tourette’s is just the normalcy of it all, just to debunk the myth that it’s wrong or weird.  

“I want people to know it’s okay. When you see someone with it, try and understand what it is and just don’t raise it with them, just talk to them as a person.”  

‘Just the way our brains are’  

Like his dad, 11-year-old Ryder remembers having Tourette’s since before his preschool days. But for the intermediate school student, it’s “completely normal”.  

“When I get excited, nervous or anxious about something coming up or happening like a cross-country race or going on a trip somewhere new, my tics get bigger and some of them can give me pain, like in my neck,” he explains.  

Ryder takes medication for ADHD, which can make his tics worse and in turn, this can make it difficult for him to focus at school.  

“Going to this new school, I’ve had some people being mean about my Tourette’s and stuff,” he says.  

Dad Chris came to his school to do a presentation about Tourette’s for his classmates, and Ryder says the kids are “a lot nicer” to him now they understand it better.  

“Most people just ask me why I make funny movements and once I tell them I have Tourette’s, they are cool about it.”  

Having a family that understands Tourette’s makes all the difference. “It makes me feel way better not being alone. It makes me feel like I can tic in a safe space without trying to hide it.”  

He wants Kiwi kids his age to know that Tourette’s is “completely normal”, and that “if they ever see anyone with Tourette’s getting bullied, they have to stop it”.  

“I can’t help it. You can’t tell someone to stop because it is just the way our brains are.”  

What Kiwis need to know about Tourette’s  

It’s Tourette’s Awareness Month in New Zealand until June 15, and the Tourette’s Association of New Zealand (TANZ) is looking to raise awareness and funds through its Swear to Make a Difference campaign.  

The association’s general manager Emma Henderson explains that the campaign is not designed to make light of people’s tics, but rather to draw attention to the fact that 90 per cent of those with Tourette’s do not have coprolalia.  

She is also Chris Henderson’s sister, and knows all too well that the disorder is “misunderstood” by many.  

“We just want people to accept those that have Tourette’s in their community and talk to people with Tourette’s, find out what it’s like to live with and know that it is difficult, but we’re not your punchline,” she tells the NZ Herald.  

“It is a spectrum and while some tics are manageable for those living with it, it can range through to a debilitating syndrome that really has a direct impact on people’s lives.”  

TANZ is the only charity in the country that supports those living with the disorder, providing resources and advocacy and running Camp Twitch for young Kiwis with Tourette’s and their families, all without government funding.  

The cause of Tourette’s is uncertain, though research suggests genetics and environmental factors have a part to play, according to TANZ.  

To find out more about Tourette’s and the Swear to Make a Difference campaign, you can visit the TANZ website here. You can donate to TANZ here.  

If you think you or someone you know may have Tourette’s syndrome, the first step is to visit your GP, who can refer you to a specialist for diagnosis.  

Bethany Reitsma is an Auckland-based journalist covering lifestyle and entertainment stories who joined the Herald in 2019. She specialises in telling Kiwis’ real-life stories, money-saving hacks and anything even remotely related to coffee.