AbstractIn 2004, when we asked FAS in Australia: Fact or Fiction? we lacked sufficient data on fetal alcohol syndrome (FAS) to answer that question. Despite coming relatively late to the issue in Australia, research has shifted FAS from the realm of fiction to fact in two decades. We now have good Australian data on patterns of prenatal alcohol exposure (PAE) and women’s and health professionals’ knowledge, attitudes, and practice regarding alcohol use in pregnancy and fetal alcohol spectrum disorder (FASD). Indigenous-led research provides population-based data on FASD prevalence in high-risk remote communities and its impacts at home and school; and prevalence data are available for FASD in a juvenile detention center. Data linkage studies estimate the frequency of PAE effects in infancy and in the long-term, while pregnancy cohorts allow exploration of biological markers, including epigenetics and three-dimensional (3D) facial imaging, to inform pathological understanding, screening, and early diagnosis of FASD. Importantly, using a model that could be adopted elsewhere, we have taken a systematic approach to FASD, established collaborative national research and clinical networks, consulted with caregivers, engaged and supported health professionals, and worked closely with governments and non-government organizations, advocates, politicians, and policymakers to ensure that research is translated into clinical and public health practice and policy. Challenges remain but we look to a future that includes early diagnosis, effective treatment, and prevention of FASD, underpinned by a sound, current, and contextual evidence base.Key wordsFetal alcohol spectrum disorderFetal alcohol syndromeAustraliaAlcohol during pregnancy 

Fetal Alcohol Spectrum Disorder in Australia: From Fiction to Fact and to the Future

Introduction The Lililwan Project was the first Australian population-based prevalence study of fetal alcohol spectrum disorder (FASD) using active case ascertainment. Conducted in 2010–2011, the study included 95% of all eligible children aged 7–9 years living in the very remote Aboriginal communities of the Fitzroy Valley, Western Australia. Women from Marninwarntikura Women’s Resource Centre, a local Aboriginal-led organisation, are concerned that some participants from the study are struggling in adolescence so partnered with researchers from the University of Sydney to follow up the Lililwan cohort in 2020–2022 at age 17–19 years. The overarching aim of the Bigiswun Kid Project is to identify adolescents’ needs and build knowledge to inform services to improve the health and well-being of adolescents in remote Aboriginal communities. The specific aims are to: (1) provide a voice to adolescents and their families to understand the health and well-being status of the Lililwan cohort at 17–19 years. (2) Examine relationships between exposures during pregnancy, birth characteristics, and health and neurodevelopment at 7–9 years, and positive/adverse adolescent outcomes at 17–19 years. This information will identify prenatal and early life factors that predict good health and well-being in adolescence. (3) Determine whether management plans provided in the Lililwan Project were followed, and identify past and present service gaps, support needs and barriers to service use. (4) Determine if key physical characteristics of FASD change between childhood and adolescence in this Aboriginal population. Ethics and dissemination Approved by the Kimberley Aboriginal Health Planning Forum and relevant ethics committees.

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Bigiswun Kid Project: a longitudinal study of adolescents living with high rates of prenatal alcohol exposure, fetal alcohol spectrum disorder and early life trauma in remote Australian Aboriginal communities

Aboriginal Participatory Action Research: Learnings from The Bigiswun Kid (adolescent) Project

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Bigiswun Kid Project: a longitudinal study of adolescents living with high rates of prenatal alcohol exposure, fetal alcohol spectrum disorder and early life trauma in remote Australian Aboriginal communities

Aboriginal Participatory Action Research: Learnings from The Bigiswun Kid (adolescent) Project