Driving a national approach to fetal alcohol spectrum disorder

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”, says Professor Elliott, a professor of paediatrics and child health based at the Children's Hospital Westmead Clinical School.

The Lililwan study – the first of its kind – ran from 2009 to 2015 and 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.

It found that 1 in 5 children studied had FASD with severe impairment. The team treated the children for any conditions they came across throughout the study, and helped to establish an enduring model of clinical and educational services.

They also established national surveillance, a national register, an online hub, and clinical and research networks.

The University of Sydney team included Dr Jane Latimer, a professor in the Sydney School of Public Health, and two PhD students. They developed a strong partnership with Aboriginal communities, preceded by respectful, long-term consultation.

Local people were asked to articulate the FASD problem and suggest the best way to address it.

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. It also led to an Australian guide to diagnosis, support for families, and a national advisory committee for the federal government, chaired by Professor Elliott.

Professor Elliott 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.

They include:

• a register of FASD cases to support prevalence trend analysis
• national education of health professionals to disseminate and evaluate the diagnostic guide
• the FASD online hub
• the Australian Guide to the Diagnosis of FASD.

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 duration 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.