Three Aboriginal women from central Queensland fought for years to have foetal alcohol spectrum disorder recognised in their community.
After being ignored for 20 years, something is finally happening.
Priscilla Iles, Elaine Williams and Judy Tatow worked with Queensland Health and at the time noticed that a number of children they visited were “not quite right”.
“They were sort of disconnected,” said Aunty Priscilla.
It wasn’t until she attended a First Nations health conference in New Mexico that the penny dropped – it was foetal alcohol spectrum disorder (FASD).
This was an issue many First Nations people had identified years ago and had been grappling with since.
“I couldn’t believe where we were, as Aboriginal and Islander people,” Aunty Priscilla said.
“We were right behind the ball.”
On her return, the three women were determined to raise awareness and began running workshops throughout the state, inviting experts from both Australia and overseas to speak.
But they ran into problems.
“We applied for funding. We couldn’t get it. We got nothing,” Aunty Priscilla said.
“We were knocking on doors, but no one was answering.”
In the end, it proved too much.
“Trying to get funding to carry on the program was very hard for us and we were very sad we had to let it go, but we did try to run the programs and bring education into the community for our work and for our mothers who looked after foster-care kids.”
It has taken 20 years, but FASD is back on the agenda with community groups in central Queensland joining to form an FASD Alliance.
Julie Irwin, National Disability Coordination Officer, is one of the people behind the FASD Alliance, which plans to eventually have an assessment unit in the region.
“We have no facility in central Queensland, in this region, at all,” Ms Irwin said.
The idea grew out of years heading out to the Indigenous community of Woorabinda and hearing the various school principals raise concerns.
“The current principal says he believes 80 per cent of the students could be affected in his school.”
“That’s extremely high,” Ms Irwin said.
The implications of undiagnosed and untreated FASD is significant, particularly for these children.
“Coming from Woorabinda and coming to Rockhampton and seeking employment here, seeking further education when they have memory problems, learning difficulties, attention span problems, language and speech.
“They are already at a massive disadvantage before they even leave school.”
Pathway gaps still missing
Currently, there are only two clinics in Queensland where children are screened and diagnosed — both are in the state’s south-east corner — and five in Australia.
Paediatrician Dr Heidi Webster runs the Sunshine Coast FASD clinic and there are plans to have outreach clinics to regional and remote parts of Queensland.
“We’re seeing a very, very small proportion of kids who are affected by FASD so it’s really going invisible in our communities, largely undiagnosed and not understood well,” Dr Webster said.
Between 450,000 and 1.2 million Australians are thought to have FASD, which affects multiple areas of brain development and in turn impacts every aspect of that person’s life.
As well as the personal cost, it also costs the community billions of dollars, Dr Webster said.
“So there are high rates of education failure, drop out from school and, following that, unemployment, crime and involvement in juvenile justice or incarceration as well as mental health outcomes that are very negative.”
“That includes anxiety, depression, ADHD, self-harm and suicide.”
Dr Webster said the issue was hitting the political landscape and welcomed recent federal funding into support services, education and prevention.
“But some people have been working tirelessly for decades to get to this point,” she said.
Asked why some women still continued to drink during pregnancy, Dr Webster said it was Australia’s drinking culture.
“We’re seeing more and more women, with women’s equal rights, tyring to keep up with the boys.
“Young women are engaging in binge drinking more and more over the last two generations than ever before.”
Better late than never
Lorgay Monaghan, who fostered three children with FASD, welcomed the proposed Alliance and said this would have made a significant difference to her when her now-adult children were little.
“I slept with one eye open for 24 years,” Ms Monaghan said.
There were no referral pathways when her children were little, and people dismissed them as having behavioural issues.
“I was a concerned mum and I just went out and banged on doors.”
Ms Monaghan also took on a teacher’s aide job at her children’s school to ensure they had the support they needed.
“I’m really happy that they’re starting to acknowledge and make referral pathways so much easier and people do have access to this stuff far earlier.”
“I think the intervention happened way too late, but at the end of the day I have beautiful, successful children and I’m quite proud of that,” Ms Monaghan said.
Veteran journalist Jeff McMullen, known for his years on Foreign Correspondent and Four Corners, is director of the Australian Indigenous Mentoring Experience.
He has seen first-hand FASD in many communities across Australia.
He threw his support behind the central Queensland push for an FASD Alliance after a call from old friend Menessia Nagie.
Mr Nagie is with the National Disability Coordination Officer Program and alerted Mr McMullen to the central Queensland push.
“Rockhampton is doing something wonderful here because this has grown up from the community – it’s come from the grassroots,” Mr McMullen said.
This piece was first seen on ‘ABC News’ 31 October, 2017.