NDIA Accountability Project

Submission 155 — FASD Research Australia NHMRC Centre of Research Excellence — Inquiry into the Thriving Kids initiative

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THE UNIVERSITY OF SYDNEY

FASD Research Australia, the NHMRC Centre of Research Excellence

Submission to the House Standing Committee on Health, Aged Care and Disability

Prepared on behalf of the FASD Research Australia NHMRC Centre of Research Excellence

By Distinguished Professor Elizabeth Elliott & Associate Professor Sharon Medlow

3 October 2025

Background

Fetal alcohol spectrum disorder (FASD) is a devastating disorder of Australian and global significance that results from prenatal alcohol exposure (PAE). FASD is characterised by neurodevelopmental disability, intellectual impairment, birth defects and low birth weight.^1 These early manifestations lead to myriad chronic health and mental health issues and premature death (life expectancy is just 34 years).^2 FASD burdens individuals, families and society, with repercussions for health, education, justice, disability, out-of-home care and community systems and the economy.^3

Using mathematical modelling, we recently estimated that the prevalence of FASD in Australia is 3.64% (~10,000 births/year or one child per classroom), making it more common than the well-recognised neurodevelopmental disorders of autism and cerebral palsy combined.^4 Alarmingly, in Western Australia the prevalence of FASD in some remote Indigenous communities (19%) and in the juvenile justice detention (36%) is amongst the highest in the world.^5, ^6

Early, accurate diagnosis of FASD allows for effective treatments to improve health outcomes and prevent antisocial behaviours, substance use and mental ill-health that may lead to educational failure, contact with the law, and diminished life expectancy. However, FASD diagnosis is often delayed, resulting in unnecessary investigations, inappropriate management, and adverse impacts.^7

TOR 1. Assisting parents to identify FASD and provide support to their children: it starts with a thorough assessment towards formal diagnosis

Parents and educators may first become aware of the need for a neurodevelopmental assessment in the early school years when they notice delays in development, including motor skills, learning, sensory processing, language and attention, which lead to behavioural problems and poor academic progress.^8

  • Given the high prevalence of FASD in Australia, developmental delays should trigger assessment to confirm or exclude a diagnosis of FASD and consider other neurodevelopmental disorders.
  • Diagnosis of FASD requires the input of a multidisciplinary team including, but not limited to, a paediatrician, psychologist, speech and language pathologist and an occupational therapist.^9 Accordingly, parents must be supported to access these specialist services with guidance and advice from primary care clinicians including GPs and other referring health professionals.

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^1, ^2, ^3, ^4, ^5, ^6, ^7, ^8, ^9 [Footnote text omitted from view or implied]

  • The FASD NSW Assessment Service is based at the Children’s Hospital at Westmead in Sydney, with outreach clinics conducted in rural locations in NSW. While this service is the ‘gold standard’ of assessment, it has long waitlists (2 years), a part-time multidisciplinary team, and insecure funding.
  • Most Australian states and territories do not have a publicly funded FASD assessment service, resulting in inequities of access to health care and missed chances for early diagnosis and intervention.

Recommendations

  • Ongoing support for government-funded websites and organisations that inform and support families and educate communities, such as: the FASD Hub Australia (fasdhub.org.au), NOFASD Australia (nofasd.org.au), Through Different Eyes, Learning with FASD (learningwithfasd.org.au), Every Moment Matters (everymomentmatters.org.au) and Strong Born. These resources will:
    • Assist parents to identify developmental delays
    • Assist early childhood educators to identify difficulties consistent with FASD
    • Inform educators about challenges with teaching and learning in FASD
    • Educate the Australian community, health professionals, women at high risk of alcohol use in pregnancy and Aboriginal communities and services
  • Promote ongoing use of the Australian Early Development Census (AEDC) – a tool used nationally to assess childhood development

TOR 2. Programs to support children with FASD in the community and educational settings

The Australian Guidelines for the Assessment and Diagnosis of FASD were developed in 2016 and updated in 2024.^9 These provide education and guidance for health professionals and ensure a consistent approach to the assessment of children with PAE and neurodevelopmental challenges and the diagnosis of FASD.

Once a diagnosis of FASD has been confirmed, each individual child’s strengths and areas of difficulty can be mapped with appropriate referrals made for intervention. This may also include access to NDIS support.

  • Although early intervention is key to optimising healthy life trajectories in the context of neurodevelopmental delay generally, programs to provide support and management specifically for the treatment of individuals and families living with FASD remain under-investigated. Promising initiatives include ‘social prescribing’ and models of ‘wraparound care’.
  • The ‘Learning with FASD’ website provides training and resources for primary and secondary educators who are likely to have children with FASD (suspected or confirmed) in their classrooms. The focus is strengths-based and collaborative, with families and educators working together to modify approaches to teaching by identifying developmental concerns and implementing effective responses to these.

Recommendations

  • Ongoing support for education of all health professionals regarding PAE and FASD and use of the Australian Guidelines.

  • Clarity on eligibility of children with FASD for NDIS support.

  • Support for research on the most effective interventions to optimise neurodevelopment and health outcomes and assist individuals with FASD to engage with education.

  • Support for peer support programs, parenting training and the NO FASD helpline.

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TOR 3. Children from priority populations are disproportionately affected by FASD

Although FASD is a condition that affects all sectors of society, we know that in NSW children with a diagnosis of FASD are likely to experience intersectional disadvantage and marginalisation. For example, data from our FASD NSW Assessment Service show the complexity of the circumstances faced by children with FASD:

  • 87% have had an experience of out-of-home care
  • 80% have one or more congenital anomalies
  • 73% have co-morbid ADHD
  • 70% have a language disorder
  • 60% have experiences of early life trauma
  • 49% identify as First Nations
  • 36% have a diagnosis of anxiety
  • 24% have a diagnosis of autism spectrum disorder
  • 24% have a genetic abnormality (rare copy number variant)
  • 19% have an intellectual disability
  • 14% live in remote or regional areas with very limited access to services

Recommendations

  • Improve access to health and allied health professionals who have training and skills in cultural competence and managing complex children living with FASD and early life trauma
  • Increase funding for mental health professionals to enable early diagnosis and management of co-morbid mental illness in children with FASD to improve adult outcomes
  • Ensure equitable access to services regardless or geography, race or care placement
  • Equip teachers to better understand and provide appropriate education for children with multiple learning needs that result from FASD

TOR 4. FASD is everybody’s business: Australia needs a workforce with the skills to screen, diagnose & treat FASD

With an estimated prevalence of just under 4% in the general Australian population, FASD is so common that all professionals working in health, education, social services and law are likely to encounter individuals and families living with this condition.

  • When this occurs, it is essential that professionals are equipped with the knowledge and resources to: (a) consider the possibility of FASD and confirm prenatal alcohol exposure (b) instigate referral pathways. For example, referrals to the FASD NSW Assessment Service may come from GPs, paediatricians, maternal health services, Substance Use in Pregnancy and Parenting Services (SUPPS), the Children’s Court Clinic, Elva out-of-home care service and the Koori Court.
  • Once a referral is made, it becomes the responsibility of the FASD Assessment Service to undertake a suite of diagnostic assessments across nine neurodevelopmental domains and conduct genetic and other laboratory testing to exclude alternative diagnoses.
  • Upon confirmation of a FASD diagnosis, referrals and recommendations for management are fed back to families, clinicians, educators and law-makers (in the context of youth justice). Acting upon these recommendations requires a high level of knowledge and skills.

Despite the need for a well-equipped workforce at all stages of the FASD journey, general awareness of FASD remains low, even among healthcare professionals. Resources to support easy referral pathways, provide timely and accurate diagnosis and deliver high quality treatment and support are sadly lacking.

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Recommendations

  • Ensure every Australian state and territory has a fully-funded FASD Assessment Service with a fulltime, highly trained multidisciplinary staff who are FASD-, trauma- and culturally aware.
  • Minimise stigma for children and families by providing a compassionate ‘no blame’ service that understands the many reasons why women use alcohol in pregnancy
  • Fund established FASD assessment services to provide outreach services to regional and remote towns for efficient, timely and less costly service provision.
  • Improve the evidence base for FASD-specific treatment through high quality clinical trials, research and evaluation and implementation trials.
  • Provide education and training to upskill a wider range of professionals in health, justice, child protection, disability, police and education
  • Develop and evaluate novel referral and service models e.g. to respond to need in the out-of-home care and justice sectors
  • Conduct economic evaluation of the impact of FASD and the cost of diagnosis and treatment.

TOR 5. Relevant existing policy and guidelines must be identified, disseminated and implemented for diagnosis, clinical care and prevention

Recommendations

  • Ensure that the Australian Government’s National FASD Strategic Action Plan 2018-28 is fully implemented
  • Support the National FASD Advisory Group in its remit to evaluate the implementation and impact of the National FASD Strategic Action Plan 2018-28
  • Promote dissemination and evaluation of the 2024 Australian Guidelines for the Assessment and Diagnosis of FASD
  • Raise awareness of the 2020 NHMRC Australian Guidelines to Reduce Health Risks from drinking alcohol
  • Promote the 2016 WHO Guidelines for Identification and Management of Substance Use and Substance Use Disorders in Pregnancy
  • Monitor uptake of mandatory labels warning on the harms of alcohol use in pregnancy, including on products acquired online
  • Support sustainable Every Moment Matters campaign and Strong Born campaigns
  • Legislate policy known to be evidence-based and effective in preventing alcohol harms including minimum pricing and taxation, restricting advertising and promotion, upholding Aboriginal community-initiated alcohol restrictions and limiting liquor outlets and opening hours. This will require commitment from government and exclusion of the alcohol industry from decisions regarding public health policy.

Conclusion

In summary, FASD is a common but potentially preventable disorder that presents with developmental delays and has lifelong impacts. Assessment and diagnosis of FASD should be instigated at the earliest possible time to allow for early clarification of strengths and developmental challenges, and for early intervention to improve life trajectories and minimise the risk of out-of-home care placement, educational failure, and contact with the juvenile justice system. This requires highly trained and skilled multidisciplinary clinical teams and capacity-building in the primary healthcare workforce. Early recognition in the education and justice sectors also requires professional development.

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Efforts must be made to implement evidence-based policies that are known to be effective to reduce harms from alcohol. These should complement community awareness campaigns and professional education and training.

Who are we?

FASD Research Australia is the National Health and Medical Research Council of Australia (NHMRC) Centre of Research Excellence (CRE) in Fetal Alcohol Spectrum Disorder (FASD). Funded in August 2025 for five years, the CRE brings together researchers nationally with clinicians, epidemiologists, health economists, leaders in health implementation and - most importantly - people living with FASD. The National Organisation for FASD, Australia, which supports and advocates for people with lived experience of alcohol use in pregnancy and FASD is a key partner. The CRE is led by the University of Sydney and is a collaboration with Deakin University Melbourne, Menzies School of Health Research Darwin, the Burnet Institute Melbourne, and the University of Newcastle. Investigators also come from Toronto and Ottawa in Canada and Aboriginal Community Controlled organisations. The team is committed to raising awareness of FASD and improving child health through innovations in diagnosis and treatment, understanding the burden of disease and preventing FASD.

Elizabeth Elliott (Director FASD Research Australia NHMRC CRE) is a Distinguished Professor of Paediatrics and Child Health at the University of Sydney and a Paediatrician and lead of the FASD NSW Assessment service. She holds an NHMRC Leadership Fellowship. She Chairs the Australian Government’s FASD Advisory Group, leads the FASD Hub Australia and the FASD Australian Registry and is a member of the committee that developed the Australian Guidelines for the Assessment and Diagnosis of FASD. She is on the Advisory Group for the Every Moment Matters Campaign and a Board Director for NOFASD. She is a member of the WHO committee on the Burden of Birth Defects and the National Institute on Alcohol Abuse and Alcoholism.

Sharon Medlow (Manager FASD Research Australia NHMRC CRE) is an Associate Professor in the Specialty of Child & Adolescent Health at the University of Sydney. She has a special interest in the development and implementation of health services for marginalised populations, is on the Advisory Group for FASD Hub Australia and is Secretary, Australian Association for Adolescent Health.

References

  1. Elliott EJ, Bower C. Fetal Alcohol Spectrum Disorder in Australia: From Fiction to Fact and to the Future. In: Chudley AE, Hicks GG, editors. Fetal Alcohol Spectrum Disorder: Advances in Research and Practice. New York, NY: Springer US; 2022. p. 263-310.
  2. Thanh NX, Jonsson E. Life Expectancy of People with Fetal Alcohol Syndrome. J Popul Ther Clin Pharmacol. 2016;23(1):e53-9.
  3. Popova S, Charness ME, Burd L, Crawford A, Hoyme HE, Mukherjee RAS, Riley EP, Elliott EJ. Fetal alcohol spectrum disorders. Nat Rev Dis Prim. 2023;9(1):11.
  4. Tsang TW, Rosenblatt DH, Parta I, Elliott EJ. Estimating the prevalence of fetal alcohol spectrum disorder in Australia. Drug and Alcohol Review. 2025;44(5):1522-5.
  5. Bower C, Watkins RE, Mutch RC, Marriott R, Freeman J, Kippin NR, Safe B, Pestell C, Cheung CSC, Shield H, Tarratt L, Springall A, Taylor J, Walker N, Argiro E, Leitão S, Hamilton S, Condon C, Passmore HM, Giglia R. Fetal alcohol spectrum disorder and youth justice: a prevalence study. BMJ Open. 2018;8(2):e019605.
  6. Fitzpatrick JP, Latimer J, Olson HC, Carter M, Oscar J, Lucas BR, Doney R, Salter C, Try J, Hawkes G, Fitzpatrick E, Hand M, Watkins RE, Tsang TW, Bower C, Ferreira ML, Boulton J, Elliott EJ. Prevalence and profile of Neurodevelopment and FASD amongst Australian Aboriginal children living in remote communities. Res Dev Disabil. 2017;65:114-26.
  7. Phillips NL, Zimmet MD, Phu A, Rattan M, Zurynski Y, Elliott EJ. Impact of fetal alcohol spectrum disorder on families. Arch Dis Child. 2022;107(8):755-7.
  8. Hanlon-Dearman AC. How FASD presents across the lifespan. In: Mukherjee RAS, Aiton N, editors. Prevention, Recognition and Management of Fetal Alcohol Spectrum Disorders. Cham: Springer; 2021. p. 85-102.
  9. Australian Guidelines Development Group. Australian clinical practice guidelines for the assessment and diagnosis of fetal alcohol spectrum disorder. Available at: https://fasdhub.org.au/fasd-information/australian-guidelines-for-assessment-and-diagnosis-of-fasd/. 2024.