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No blame and no shame: Focus on foetal alcohol syndrome

Indigenous health experts are eager to shine a light on an "invisible disability" impacting Aboriginal and Torres Strait Islander people.

A new campaign called Strong Born aims to raise awareness of Foetal Alcohol Spectrum Disorder and the dangers of drinking while pregnant or breastfeeding.

The program is being run by the National Aboriginal Community Controlled Health Organisation.

It builds on the research done for the Lililwan (little ones in Kimberley Kriol) Project, led by the Aboriginal community of Fitzroy Crossing in Western Australian, in partnership with Sydney University and George Institute for Global Health.

Chief executive of the Marninwarntikura Women's Resource Centre Emily Carter, a Gooniyandi and Kija woman who was part of the Lililwan Project, said from the beginning of the study in 2010, community had been at the centre.

"For a long, long time there, this was seen as an Aboriginal problem," she said.

"But it was Aboriginal people, Aboriginal women as strong women, that brought it out to the wider consciousness of Australian society.

"It was because of our grandmothers at that time were saying to us that their grandchildren's behaviours were so different to their children growing up and they didn't know why."

Malarndirri McCarthy, the assistant minister for Indigenous health, said foetal alcohol spectrum disorder was not confined to any one community.

"FASD is often referred to as the invisible disability but as far as many families and communities are concerned, it's a very visible part of daily life," she said.

"It is a disorder that crosses socio-economic, racial and educational boundaries."

Pat Turner, chief executive of the National Aboriginal Community Controlled Health Organisation, said conversations about the disorder could be challenging.

"Unless we're having them and having them in an intelligent way, we're never going to make a dent in this issue," she said.

"We need to break down the barriers that stop our people from discussing FASD and FASD prevention measures - the shame, blame and stigma.

Ms Turner said in many cases kids went undiagnosed until they were school age.

"Even then testing and treatment can often fall short," she said.

Robyn Williams, a Nyoongar woman and researcher at Curtin University, said early intervention in a culturally appropriate manner was key to effective support.

"FASD is different for us as a community due to the impacts of colonisation, intergenerational trauma, poverty, and racism," she said.

"There's the evidence that a lot of our people get engaged poorly with mainstream services and a lot of that is to do with not feeling culturally safe enough or not having enough Aboriginal people in those organisations."

The WA government this week announced more than $800,000 for Marninwarntikura to support local young people in the Fitzroy Valley.

"Our young people that have been born with this disease that's 100 per cent preventable, we have to support them because it is from birth to grave," Ms Carter said.

"We've got to be looking at how do we support them, what sort of programs and remembering that we do it in a way that is compassionate, and that they're not being blamed or their mothers are being blamed."