Research in one of Australia’s most remote regions has had an enormous influence on crystallising a national approach to diagnosis and prevention for fetal alcohol spectrum disorder, which has devastated families for generations.
When Professor Elizabeth Elliott began work on the landmark Lililwan study in 2009, fetal alcohol spectrum disorder (FASD) was a relatively hidden epidemic.
In many Australian communities drinking alcohol in pregnancy was a deeply taboo subject. Many women were unaware that drinking could expose their unborn children to lifelong effects of FASD, from brain injury to physical and behavioural impairment – all of them incurable.
FASD was not on the public health radar, and Australian health professionals were “insufficiently aware of the FASD diagnosis or how to make it”, Professor Elliott, a Professor of Paediatrics and Child Health based at the Children’s Hospital in Westmead, Sydney, says.
However, thanks largely to her research and leadership, FASD is no longer shrouded in mystery, taboos are broken and reducing its incidence is a key priority for Australian governments and health professionals nationwide.
Her pioneering work, unyielding advocacy and leadership have crystallised and founded national surveillance, a national register, an online hub that is believed to be unique internationally and clinical and research networks.
The Lililwan study focused on all children aged seven to nine years old and their mothers in 45 very remote Aboriginal communities in the Fitzroy Valley, Western Australia. The University of Sydney team – which included Dr Jane Latimer, a professor in the Sydney School of Public Health, and two PhD students – developed a strong partnership with Aboriginal communities, preceded by respectful, long-term consultation. Local people were asked to articulate the FASD problem and provide the best way to address it.
“The key to the success of the Lililwan Project is that it was initiated by Aboriginal communities. Aboriginal leaders identified that the University was already doing research in this area and invited us to partner with them.”
The Lililwan study – the first of its kind – ran from 2009 to 2015 and found that 1 in 5 children studied had FASD with severe impairment. During the study the research team treated the children for any conditions they came across and helped to establish an enduring model of clinical and educational services.
In the long term, the study’s impact has been astonishing. It led to a national inquiry into FASD, which resulted in almost $20 million funding nationally that was invested in service models; an Australian guide to diagnosis; a national advisory committee for the federal government, chaired by Professor Elliott, support for families and other initiatives.
She has rapidly become a world-renowned FASD leader – with hundreds of valued collaborators in Australia and other countries. Currently she is co-director of the NHMRC Centre of Research Excellence in FASD and heads the NSW Diagnostic Clinic at the Children’s Hospital, Westmead.
Professor Elliott has steered many of the national initiatives that will underpin Australia’s prevention efforts for years to come.
FASD prevalence in the general Australian population remains unknown, but given that about 60 percent of Australian women in both Aboriginal and non-Indigenous communities drink alcohol in pregnancy, eliminating the disorder is no easy task.
According to Professor Elliott, prevention is the key to unlocking future gains.While national awareness has risen steeply in the last decade, she is now supporting the implementation of labelling on alcoholic beverages to warn about the health effects of drinking alcohol in pregnancy, and educating women, their partners and children about alcohol harms.
“Labelling has been approved by government and we’re now in the process of determining what it will look like. Previously it has been a voluntary option for the alcohol industry to label alcohol.”
On 9 September we recognise International FASD Awareness Day, reminding people of the importance of being alcohol free for the nine months of a pregnancy.
FASD Australia Hub provides information on Fetal Alcohol Spectrum Disorder (FASD) for Australian health professionals, teachers, justice professionals, service providers, researchers or parents and carers.
1 in 5
Ratio of children studied severely impaired by FASD
Percentage of Australian women who drink alcohol in pregnancy