When Chloe Williamson was four she was sent to her room - but she just climbed to the top of the wardrobe, found the scissors in the craft box and cut her way out through the flyscreen.
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At preschool she was known as "that naughty kid" mum Amy Williamson said, but it wasn't until Kindergarten that she was given another label - ADHD.
For her parents Amy and Bill that diagnosis was a relief. It enabled them to explore treatment options and get support, yet with Chloe now 16 they fear for her future.
The Dapto couple agree with the results of a landmark new study which highlights the gaps in support for those living with ADHD, especially as they move from childhood to teenage to adult services.
The ADHD Australia study found that stigma still abounds for the nearly one million Australians with the condition, while many are simply "flying under the radar".
Professor Michael Kohn, ADHD Australia board chair, said it's a common belief that the condition is only seen in childhood - and mostly in boys. In reality, it affects both genders equally and often remains undiagnosed well into adulthood.
"The plight of those living with ADHD, which remains one of the most misunderstood mental health conditions, is not an easy one," he said.
"Regardless of diagnosis status ADHD sufferers have an increased risk of debt, addiction, suicide, self-harm and premature death.
Regardless of diagnosis status ADHD sufferers have an increased risk of debt, addiction, suicide, self-harm and premature death.
- Professor Michael Kohn, ADHD Australia board chair
"And it is worse for females with ADHD with the risk for self-harm two to three times higher and suicide attempts three to four times higher than their male counterparts."
The Under the Radar Survey, released on Thursday, aims to debunk misconceptions and showcase gaps in services, education, diagnosis and support into adulthood.
For the Williamsons, it's been a challenge to meet the needs of their daughter.
"When Chloe's Kindergarten teacher told us she thought she had ADHD, we said 'Great, where do we start', which wasn't the reaction she'd perhaps expected," Mrs Williamson said.
"But Chloe had always been impulsive, always been different to all the other kids, and we'd long been looking for something to explain why.
"Once she got the right treatment and support, she just blossomed. And she continues to do well with support at Dapto High School.
"Not that it hasn't been a struggle - especially to afford all the different specialists she's needed over the years.
"And now she's turned 16 we have concerns that there is little support for her to deal with the transition to adulthood."
Ms Williamson is a facilitator for Citylife Community Initiatives ADHD Support Group Illawarra, which provides families with education, support and encouragement.
The group was set up by Wollongong mum Jill Whalan, after her son Thomas - now 29 - was diagnosed with ADHD.
"We knew there were issues when he was quite young but the doctor we took him to didn't believe in ADHD," she said. "It wasn't until he was eight that we got a diagnosis.
"We know that many families find it difficult to get a diagnosis and so there needs to be more education and awareness of the condition, even among health professionals.
"Another area of concern for families is funding for services like speech or occupational therapy - there's little government assistance and some families have to sacrifice other things to pay for these.
"And that early intervention is vital because studies show that if children don't get the support they need when younger, they may start to self-medicate - through drugs or alcohol - when they are older."
More than 1600 people responded to the ADHD Australia survey, including young people and adults with the condition, parents and health professionals.
Among the findings was that half of the young adults surveyed had a major challenge finding the right medications and therapies.
Nearly six in 10 reported an impact on employment as a result of their ADHD, and around 55 per cent admitted to difficulty in managing social and relationship matters.
Meanwhile nearly seven in 10 parents felt overwhelmed in COVID-19 lockdown; while half the children with ADHD had increased anxiety in lockdown.
The survey is available at adhdaustralia.org.au
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