New Perth research reveals one in two children with a tic disorder have thought about ending their life

Anzac McLeod was only 10 when he told his parents he “didn’t want to be here anymore” due to his constant tics from Tourette’s and the bullying he faced at school. He’s not alone. A first-of-its-kind report has revealed one in two children with a tic-related disorder had thought about ending their life, while one in ten children and one in four adults had attempted suicide. Experts say bullying, discrimination, lack of understanding and sheer exhaustion at living with the condition are driving people to despair. The national Impact for Tourette’s survey, led by Perth’s The Kids Research Institute and the University of New South Wales, revealed the crushing daily challenges faced by Australians living with Tourette syndrome and other tic-related disorders. Four in five people had tics that caused physical pain, with two-thirds reporting the tics had injured them. Three in four children had been bullied by other students and one-third had been ridiculed or bullied by teachers. Two in five affected adults reported they were unable to work due to the severity of their tics — leading to financial strain — while similar numbers had experienced workplace discrimination. “We’re seeing a huge impact functionally on these people’s day to day lives so it’s the everyday things that you or I take for granted —getting dressed, being able to drink or even make your lunch,” senior research fellow Melissa Licari said. “It’s the pain that they experience as well. These repeated movements over and over again take a toll on the body and the report certainly revealed high rates of injuries as well. “Living with that for years on end and dealing with discrimination, bullying, and not being able to live that life that you envisioned you would have, it does take its mental health toll.” A painful jaw from mouth tics, struggling to hold a pen due to motor tics, and saying inappropriate comments when he doesn’t want to are just some of the things Anzac has to deal with on a daily basis. “It’s really painful. I’m rude to a bunch of people for how they look or what their family is like and it makes people think my personality is different,” the 11-year-old year six student said. “It’s hard to feel safe and it’s hard to learn sometimes. “I feel like when I go to high school I might be left out or get in a lot of trouble. It’s like a curse and it’s a severe condition that isn’t fixable.” After bullying at his former school became so severe, Anzac told his parents and teacher he didn’t want to be here anymore and just wanted the tics to stop Mum Junita Ryan felt helpless. “A 10-year-old should never have to feel that, a 10-year-old shouldn’t know what that (suicide) is,” she said. “I find his disability isn’t seen as a disability and a lot of people think that it’s put on and it’s just bad behaviour but he can’t help it. “He loves school, he loves learning, he loves other children and to have him not accepted is really difficult.” On top of the mental health load, Anzac was unable to get National Disability Insurance Scheme funding as his Tourette’s was not deemed a life-long disability. Three in four people studied met a similar fate. A lack of NDIS funding means Anzac can’t get one-on-one support at school and his parents have to fork out thousands of dollars for appointments and medication. “He was able to get NDIS funding for his autism diagnosis but not for Tourette’s,” Ms Ryan said. “Tourette’s falls through the cracks and nobody realises how actually severe it is. “As much as he is autistic it’s very easily managed, it’s his Tourette’s we struggle with — the pain and the social isolation is just ridiculous.” Dr Licari added: “Tourette’s is missing that advocacy and so that’s something that we really hope will come out of this work is that we can raise awareness and we can start to make those changes that are needed.” The report included seven key recommendations including funding to develop a National Clinical Guideline for diagnosis and treatment; resources and training programs funding for health professionals, educators, employers and policymakers; funding for enhanced support for individuals and their families including mental health services; and clear standards for the way students with tic disorders should be supported in school settings.