New research shows bullying a main factor behind self-harm thoughts for people with Tourette syndrome
When Nita Ryan's son Anzac was just 10 years old, she heard him say the words every parent dreads — and a nation-first study has found the experience is alarmingly common.
"Anzac came to his teacher and us and told us at one point that he did not want to be here anymore," Ms Ryan said.
"He just wanted his tics to stop."
Anzac, 11, lives with Tourette syndrome, a neurological condition which causes involuntary movements and vocalisations, known as tics.
A new report by the Kids Research Institute Australia and the University of New South Wales found one in two children with a tic-related disorder have thought about ending their life.
The rates of attempted suicide in children and adults with the condition are five times the national average.
The Impact for Tourette's research project found bullying, discrimination and a lack of understanding were some of the main contributing factors to emotional distress.
Anzac lives with at least 20 different tics and recently had to move schools after "severe" bullying led him to an overwhelming sense of helplessness.
"[It was] horrific. A 10-year-old should never have to feel that. A 10-year-old shouldn't know what that is," his mum Ms Ryan said.
"We had a few incidents where he was actually followed to our car to get picked up and he was pushed and hit."
The move was the best decision the family made, but now in grade six, Anzac is worried about the future.
"I don't feel teased at my school right now … I feel like when I go to high school I might be left out or in a lot of trouble," Anzac said.
"Staying with my family makes me feel safe and nothing can happen to me.
"[At school] it's hard to feel safe and it's hard to learn sometimes.
"It's like a curse and it's a severe condition that isn't fixable."
About 1 per cent of children live with Tourette syndrome in Australia and along with the social stigma, the healthcare sector is also lagging.
The report evaluated systemic issues across the healthcare, education, employment and mental health sectors and found challenges across the board.
It made seven recommendations to the industries to improve the treatment and management of Tourette syndrome.
Senior research fellow and report co-author, Dr Melissa Licari , said one of the key recommendations was to establish a national clinical guideline for diagnosis and treatment.
"After they're diagnosed, there's no services available in terms of providing the therapies and treatments that they need and also the support that they might need in the community as well," Dr Licari said.
"There also needs to be training and resources available for healthcare professions, for educators and also employees."
Despite being severe and common, Tourette syndrome has not garnered the same attention as other disorders.
Ms Ryan said Anzac also has an autism spectrum disorder and said the difference in response to the diagnosis was astounding.
"When he was diagnosed with autism, we were given all of this information … here is all of the specialists that can help you, here's all of the therapies that can help you," she said.
The research also found only one in 20 people have access to NDIS funding and on his third attempt of medication, Anzac's medical bills have added up.
"Everything we do, we have to do privately and pay," Ms Ryan said.
"It's extremely hard, especially if he's crying in pain. You can't do anything. There's nothing anyone can do."
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