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Telethon Kids Institute project unites parents to tackle 'debilitating' anxiety in children with autism

Kally Mack has seen her five-year-old son Harvey's life transformed since they started taking part in a trial to help young children living with autism and high levels of anxiety.

"It's been life-changing for us. Not to feel so alone. To feel there's other families going through what we're going through," Ms Mack said. 

The Telethon Kids Institute CUES study brings small groups of parents and primary caregivers together with psychologists to better understand how their child copes with different uncertainties in day-to-day life and to find ways to ease their anxieties.

Gail Alvares, a senior research fellow at the Institute, said it was about helping parents "support their children early in their stage of development, to give them some tools and strategies to use with their children as they get older and deal with more difficulties".

"And also give those parents and families the capacity for resilience as their kids get older."

Long-term benefits evaluated

The project is evaluating whether this kind of early mental health intervention had long-term benefits in building resilience and improving lives and whether it should become part of everyday clinical practice.

It involves parents with children, like Harvey, between the ages of four and seven.

Ms Mack said in the group meetings, which were attended only by the parents, she and the other families talked about what challenges their children were experiencing and exchanged ideas, tips and techniques that had worked for them previously.

The Telethon Kids Institute psychologists also provide the parents with individualised tools and strategies to help their children tolerate and manage their anxiety.

Ms Mack said in her case, Harvey's anxiety could be completely debilitating. 

"You never know what his triggers are going to be, how he's going to handle them," she said.

"He doesn't particularly like getting up and getting ready for school. And that alone can be enough to cause a meltdown, and that will be so severe we can't even attend school that day."

Parents unite to tackle 'debilitating' anxiety

Ms Mack raised the problem in one of the workshops and it was suggested she and Harvey pick the clothes he will wear and what food will be in his lunch box the night before.

She said by planning ahead and avoiding well-known triggers, it had made a big difference.

"When we get up in the morning, that anxiety of having to choose what to wear is gone," she said.

"Little things like with his lunch box, with his clothes, it sounds simple but all of that makes such a big difference in the morning so we have such a smooth transition in the morning times and we're minimising those anxieties, so when we're actually at school, he's running at [his] best.

"We'd had a whole term of meltdowns over clothing. One little strategy and we then went on and had two full terms and we've not had a single meltdown over clothing at all, just from one tiny little suggestion." 

Building resilience in the face of uncertainty

The research trial also aimed to help children better self-regulate when they encountered a stressful situation.

"Building that capacity for resilience in the face of uncertainty and change is what we're really trying to achieve with this program," Dr Alvares said.

Lauren Taylor, a senior clinical psychologist at the Autism Association WA, said it was not known yet how useful or effective this form of early intervention might be. 

"What we do know is the more supports and scaffolds that we can implement as early as possible do help autistic children navigate the social world as they grow older," Dr Taylor said.

"So anything that we can do early on is likely to be helpful for later mental health and wellbeing." 

The Telethon Kids Institute project is trying address a gap in mental health treatment for people with autism. 

"What we know is that many of the mental health supports that already exist for autistic young people are actually not necessarily designed for autistic people, and are not necessarily tested to be effective or safe," Dr Alvares said.

"So this program was specifically designed for autistic people in their families. 

"We really focus on a lot of developmental outcomes. 

"But really what we're trying to say is, maybe we should also be focusing on unmet emotional needs or mental health needs early in life as well. And we should really be putting in funding and support into those early years."

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