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Fetal Alcohol Spectrum Disorders: Where are we at in Australia in 2011?



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26 May 2011

In response to increasing scientific interest and lack of Australian data, the Australian Paediatric Surveillance Unit (APSU) approved a national study on Fetal Alcohol Syndrome in 2000. In a 4-year period we identified 92 newly diagnosed (incident) cases. Children had multiple health, developmental and behavioural problems: >60% were in foster care; >60% were Aboriginal; and nearly half had an affected sibling, suggesting missed opportunities for prevention. This study raised many questions and acted as an impetus for health professional education, informed new policy and catalyzed research. A national Alcohol in Pregnancy research group was formed and further research conducted included studies on: Health Professionals’ attitudes and knowledge regarding alcohol use in pregnancy; Womens’ knowledge about Fetal Alcohol Spectrum Disorders (FASD); the reasons Aboriginal women drink; how to ask questions about alcohol in pregnancy; the effects of maternal substance abuse on infant development; and communication of public health messages about alcohol and pregnancy. On the policy front, members of the APSU study group were involved in an Intergovernmental Committee on Drugs Working Party on FASD; in writing a monograph on FASD in Australia commissioned by DoHA; and in convening a national conference on FASD. Data from the APSU study were considered by the NHMRC when developing Guidelines for alcohol use in pregnancy (2009). Recently, the Federal government funded The Lililwan Project (determining FASD prevalence in the Fitzroy Valley, Kimberley, WA); the Development of a Screening and Diagnostic tool for FASD for Australia; and a working party to develop standardized data on alcohol use in pregnancy for inclusion in midwives’ data collections. NHMRC is currently funding two cohort studies to evaluate the impact of alcohol use in pregnancy on child outcomes. In summary, the APSU study raised awareness about FAS in Australia and provided a springboard for further research, policy and advocacy.  

Co-Authors and their affiliations
Ms Maureen Carter, CEO Nindilingarri Cultural Health Services, Fitzroy Crossing, WA.
Ms June Oscar, CEO Marntiwarntikura Womens’ Resource Centre, Fitzroy Crossing, WA.
A/Prof Jane Latimer, The George Institute for Global Health and the Sydney Medical School (University of Sydney).
Dr James Fitzpatrick, Discipline of Paediatrics and Child Health, Sydney Medical School (University of Sydney) and The George Institute for Global Health.
Mr Harry Yungabun, Community Navigator, Nindilingarri Cultural Health Services, Fitzroy Crossing, WA.
Ms Rhonda Shandley, Community Navigator, Nindilingarri Cultural Health Services, Fitzroy Crossing, WA.
Ms Meredith Kefford, Indigenous Community Volunteers. 

Elizabeth Elliott AM is Professor of Paediatrics and Child Health at the University of Sydney; Consultant Paediatrician at the Children’s Hospital at Westmead; Director of the Australian Paediatric Surveillance Unit and a NHMRC Practitioner Fellow. She has a research and clinical interest in alcohol use during pregnancy and Fetal Alcohol Spectrum Disorders (FASD). She was a member of the NHMRC committee to revise the Australian Alcohol Guidelines in 2009; Deputy Chair of the Intergovernmental Committee on Drugs Working Party on FASD; and Editor of and contributor to a government-commissioned Monograph on FASD in Australia. She is a Chief Investigator for a community initiated and community led project – The Liliwan Project, a prevalence study of FASD and early life trauma in the remote, predominantly Indigenous communities in the Fitzroy Valley in the Kimberly region of north Western Australia. She is also a Chief Investigator on a study to develop a screening-diagnostic tool for FASD for use in Australia; a birth cohort study of children exposed to alcohol in utero; a national study to understand Australian women’s knowledge, attitudes and practice regarding alcohol in pregnancy an FASD; a WA study examining Aboriginal Women’s knowledge about alcohol use in pregnancy and FASD; and surveys to identify education and referral needs of health professionals managing women who use alcohol during pregnancy. 
Professor Elizabeth Elliott AM
Sydney University Discipline Paediatrics & Child Health
The Children's Hospital at Westmead