Extract from ABC News
As a little boy, Jazpa Pinnell was so hyperactive he'd run up and down the balconies at school, was unable to concentrate in class, and his meltdowns were so bad friends and family would tell his mum he needed a "belting".
"I was thinking I was a bad parent," mum Sam Pinnell said.
But her fears were allayed, and the Queensland teenager's life changed for the better at age seven when he was diagnosed with foetal alcohol spectrum disorder (FASD).
These days, with help from psychologists, physiotherapy, occupational therapy – and an understanding of his diagnosis – the Year 11 student is described as well-mannered and respectful.
"He's the nicest kid," Ms Pinnell said.
Jazpa was one of the first children diagnosed with foetal alcohol spectrum disorder at the Gold Coast University Hospital's FASD clinic, Queensland's first dedicated clinic for the condition, which opened in 2014.
It remains one of the few clinics in Australia.
Ms Pinnell had never heard of FASD before she googled Jazpa's behaviours and "it popped up", prompting her to seek help from the Queensland Health clinic.
"When we got the diagnosis, it was good," she said.
"I could understand what was going on.
"We found that by doing things differently, without making him feel different, things kind of slotted into place a lot easier."
For example, when he came home from school, she avoided bombarding him with instructions.
"I learnt just to do one instruction at a time, to keep the sentences really short so he could process what you were telling him," she said.
'They're not naughty, they're struggling'
Ms Pinnell is Jazpa's biological aunt and the woman he calls mum, having cared for him since birth.
She said two teachers at the 16-year-old's high school had been particularly supportive, with a strong understanding of FASD, caused by exposure to alcohol in the womb.
But other adolescents with FASD have not been so fortunate.
"So many times they're put into the too-hard basket or they're expelled, they're suspended, because the teachers do not understand that they're not naughty, they're not playing up, they're just struggling to learn," said Ms Pinnell, who founded a FASD support group.
The group has a "no blame, no shame and no judging" motto.
"Just because your child has FASD doesn't mean you're a bad parent," Ms Pinnell said.
"You don't set out deliberately to hurt your child. So many people don't know that they're pregnant."
'It's a societal problem'
Gold Coast FASD clinic director Doug Shelton said the issue was one for society to address, not just individual women, particularly given Australia's drinking culture.
"It's a problem for partners," he said.
"Often, it's the male partner that initiates the drinking episode and so men definitely have a role to play, as do relatives, grandparents, society in general."
Dr Shelton, a paediatrician, said the recommendation was for women to drink no alcohol during pregnancy to avoid FASD, but acknowledged about half of pregnancies were not planned.
"If you had a precisely badly timed binge in the first few weeks of pregnancy, even if that was just one binge, and there was nothing else, that could be sufficient to cause lifelong problems with that baby," he said.
"That's why the recommendation is no alcohol because nobody knows the amount that's safe, the time when it might be safe, the type of alcohol, whether it's a binge or steady drinking.
"There are just too many risks there to make a recommendation about which level of alcohol is safe."
Issues such as the genetics of the mother and baby in terms of alcohol metabolism are also believed to play a role.
With no prevalence studies of FASD in Australia, the exact numbers of people with the disorder are unknown.
But based on US data suggesting between two and 5 per cent of the population may have FASD, Dr Shelton said more than 1.2 million Australians could be affected.
"This is potentially a big problem," he said.
"With the amount of alcohol consumption in Australia, the percentage of pregnancies that are unplanned, all those facts sort of line up.
"It wasn't that long ago that people had no clue about what FASD was, but I think there is greater slowly emerging community awareness.
"I would always hope that it would become better than it is now."
Dr Shelton, the Gold Coast University Hospital's clinical director for Women's, Newborns, and Children's Services, said FASD could affect intelligence, language skills, memory, attention, and mental health.
Some, but not all, FASD patients have distinct facial features, such as a thin upper lip, small eyes and an under-developed philtrum – the vertical groove that runs between the base of the nose and the top lip.
People with the disorder can also experience problems in school, getting a job, with relationships and some come into contact with the justice system.
'We are locking up children with brain injuries'
A 2018 West Australian study of 99 children in the state's only youth detention centre, Banksia Hill, found 36 per cent had FASD.
Canadian studies have also identified FASD in 11 per cent to 23 per cent of young people in corrective services.
Census data shows that in 2022, about 12 per cent of children and adolescents in Queensland youth detention centres had a FASD diagnosis.
"Every young person who is admitted to a youth detention centre receives a medical assessment to address any immediate health-related concerns and establish diagnosed, or potentially undiagnosed, disability, including FASD," a Youth Justice Department statement said.
"An individualised and tailored FASD management plan is developed to support a young person while in custody, with relevant information provided to the young person's family on their departure from detention."
Dr Shelton said the data "tells us that we are locking up children with brain injuries".
"How much is FASD contributing to youth crime? The answer is that I'm not sure," he said.
"But I think the big problem is understanding that neurodevelopmental impairment leads to poor decision making and sometimes poor decision making leads you into contact with the justice system."
'Diagnosis is the beginning of hope'
Dr Shelton said the earlier FASD was diagnosed the better so that children and adolescents could access therapies.
"Diagnosis is the beginning of hope," he said.
But the waiting list for children to be assessed by the Gold Coast clinic for the first time is "at least" a year long.
"There's almost 100 on the waiting list here," Dr Shelton said. "Because the assessments are complex, we can only get through a few every month.
"We accept referrals from all over Queensland. In the past, we've accepted referrals from all over Australia.
"When we first started, we were one of the only services in the country and it was unethical to limit our catchment to the local area.
"We've seen kids from every state except Western Australia and Tasmania."
Important to diagnose early
Dr Shelton said a Griffith University project, dubbed the Tracking Cube, had cut down the detailed process paediatricians go through to diagnose FASD into six easy steps so that assessments could be done by general practitioners, nurses, and indigenous health workers rather than specialist doctors.
The aim is to make the process quicker, cheaper, and more accessible so that children can access interventions as soon as possible.
It's been piloted in Mount Isa, in Queensland's north-west, and is being tested against specialist assessments on the Gold Coast before being rolled out further.
"We already think that the Tracking Cube will be equivalent and maybe even be better than business as usual," Dr Shelton said.
Griffith University researcher Dianne Shanley said the team behind the Tracking Cube was applying for government funding — both federal and state — to work towards scaling the model up to roll out nationally.
"We're looking at funding that is about rapidly translating research into practice," Professor Shanley said.
"What we think is that we have a skeleton structure that's going to work really well. We've certainly got a wonderful proof of concept in north-west Queensland.
"We've actually been approached across the country to think about how we could use the Tracking Cube in new contexts and new primary healthcare settings."
Dr Shelton said the most important issue for health professionals to help children was to ask the question of mothers about alcohol use in pregnancy.
"We'll do it in a very non-judgemental, non-blaming way," Dr Shelton said.
"But it's important that we find out that information because identifying FASD early in the child's life and then providing some interventions at home, at school and through the National Disability Insurance Scheme can massively change their trajectory … where they'll be a functioning, contributing member of the community."
'You can follow your dreams'
Sam Pinnell would like to see more awareness and training about FASD among health professionals, police, and teachers.
"There's so many people who are older who don't have the diagnosis who live their life with drugs and alcohol, crime, whatever, and they don't understand why they do it," she said.
But thanks to a FASD diagnosis and interventions, Jazpa is looking towards the future positively.
He's hopeful of obtaining an apprenticeship in woodwork, metalwork, or horticulture once he finishes school.
"You can do whatever you want to do. You can follow your dreams. You can do anything. It doesn't matter if you have FASD or not," he said.
"You just need a bit of help along the way."
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