There’s a dark side of the debilitating disorder called Tourette Syndrome – it’s a personal prison, and there’s no cure. Rage attacks and vivid hallucinations are a side of Tourette’s most people never see, or knew existed.
Diane Schubert is all too familiar with these symptoms. Her 13-year-old son, Cameron, experiences them regularly. “You sort of see a change come over the face and then anything can happen,” she tells Sunday Night’s Alex Cullen. “He can be wanting to hit us, destroy things.”
For those who don’t know him, Cameron’s Tourette’s creates an awkward and embarrassing series of tics and outbursts.
“When I have a hypomanic episode, I’m not myself,” Cameron explains. “I turn into a different person and I go like full on rage, [I] try and hurt people and I throw stuff.”
When Cameron’s rage attacks strike, the Jekyll and Hyde nature of the condition appears.
“It’s not a build-up, it’s a sudden switch from calmness to uncontrollable rage,” Cameron’s father Bruce reveals. “There’s nothing he can do, nothing we can do, you can’t reason, they have to come back down themselves. It’s very, very difficult.”
Cameron describes the experience. “I go to the back of my head. The person comes from the back of my head, and then I know what’s happening. I can see it because I am in the back, but I can’t take over control. It’s like they are basically driving the car, I can’t stop the car.”
Cameron is not alone. At her family home on the Gold Coast, 12-year-old Maddy Rayward’s bedroom resembles a battleground. In her enraged state, she’s left holes in her wall.
“Maddy says and does things that I just have to look and say, ‘That’s not Maddy saying that,’” her mother Karen reveals. “We’ve had police help, we’ve had ambulance help, we’ve had to restrain Maddy.”
When it all becomes too much, kids like Maddy and Cameron come to the Kooky Clinic run by Gold Coast psychiatrist Dr Shannon Morton.
“Rage symptoms can happen in up to 70 per cent of kids with Tourette’s syndrome,” Dr Morton explains. “I have seen kids who have demolished their houses, where their houses look like warzones. I’ve had kids where they have unfortunately broken bones or physically really hurt themselves or other people.”
But there is something that seems to quell the awkward and often embarrassing symptoms of the disorder. It isn’t rocket science – it’s as simple as playing high-energy sports, or anything that requires intense concentration.
Cameron’s mother Diane describes the change in her son. “He’s very focused on what he’s doing. He’s relaxed, he’s having fun. I mean, I can see a couple of little tics there, but probably most people might not notice he’s chewing his shirt a little bit and making a bit of a face with his mouth – but essentially, yeah, pretty well gone.”
And for Maddy, it’s gymnastics where her mind is occupied and at peace.
“There are a lot of kids where, if they just have understanding and support of those around them, won’t need to be on medication,” Dr Morton explains. “So we save them having side effects by educating everyone around them.”
Acceptance and education is what Cameron and his mum Diane are out to do. Visiting a Brisbane school to explain what Tourette’s is all about, they’re teaching kids not to judge and especially not to bully. This is particularly important because there’s a student at this school who, like Cameron, has Tourette’s. His name is Matthew and he’s 11.
“It’s okay if you laugh with them, but don’t laugh at him and don’t bully,” Cameron tells the school. “It’s not good to bully, and I just think you shouldn’t bully because it makes it a lot worse.”
Reporter: Alex Cullen
Producer: Simon Heath