Fetal alcohol spectrum disorder is tragic but not new. How should fresh funding tackle it in the NT?
- Written by Elizabeth Elliott, Professor of Paediatrics & Child Health and Director of the Australian Paediatric Surveillance Unit, University of Sydney
In recent weeks, the Australian and Northern Territory governments announced[1] new funding to address the longstanding, much-publicised challenges facing Central Australia.
The promised A$250 million adds to an earlier commitment of $48 million and aims to tackle problems faced by residents in Alice Springs and Central Australia from many angles, including strategies to reduce alcohol-related violence, harms and crime.
Included is a commitment[2] to “improve the response to fetal alcohol spectrum disorder (FASD) by the health and justice sectors”.
This is an important goal, but it is a big ask – the problems are complex and they are not new. FASD often goes undiagnosed and can cause severe and lifelong problems.
Read more: Alcohol warning labels need to inform women of the true harms of drinking during pregnancy[3]
The heart of many problems
Alcohol is behind or has been linked to many of the current problems in Central Australia, including the recent wave of crime and violence. Some believe this followed the relaxation[4] in July 2022 of the Stronger Futures[5] laws that limited access to alcohol in many NT communities for more than a decade.
In communities where alcohol use is high, a focus on FASD[6] is warranted. In Alice Springs, communities are calling for action[7].
Alcohol and pregnancy
FASD is a condition[8] that affects people exposed to alcohol before birth and causes problems with motor skills, behaviour or learning, or a mix of these.
FASD is a result of alcohol’s ability to cross the placenta, so maternal and fetal blood alcohol concentrations rapidly reach the same level. Prenatal exposure to alcohol may disrupt development of the brain (neurodevelopment) and other organs in the unborn child. People born with FASD can have[9] severe neurodevelopmental problems that may be accompanied by birth defects and have lifelong ramifications.
Worldwide, rates of FASD in the general population are estimated[10] at 1–5%, but we lack data in the general Australian population. Internationally, several identifiable groups are at high risk[11] of FASD – children in foster and adoptive care, in orphanages, mental health facilities, juvenile justice, and some Indigenous groups.
Consistent with these data, high rates[12] of FASD have been recorded in remote Australia (one in five) and in juvenile detention[13] (one in three).
But FASD is not selective. It occurs[14] across all socioeconomic levels and racial groups in society.
Read more: FactCheck Q&A: does Australia have some of the highest rates per capita of fetal alcohol syndrome in the world?[15]
Often underdiagnosed
Alcohol use in pregnancy is common throughout Australia. In cohort studies from our major cities, about 60%[16] of pregnant women report drinking alcohol – often before realising they are pregnant. A pattern of high-risk drinking[17] is reported in some remote communities. However, the Australian household survey suggests more educated, more affluent mothers are more likely to drink[18] throughout their pregnancy.
FASD has significant economic costs[19] – through its impact on health, education, out-of-home care and justice systems. However, its social impacts[20] are immeasurable.
Children born with FASD are often slow[21] to develop the social skills and language, motor skills and attention, academic skills and impulse control that would otherwise help them achieve at school and contribute in their community.
They may strive to keep up with their peers but are often easily led and may be unable to distinguish right from wrong. With good support[22] at home and school, children with FASD can thrive. Without it, children and young people may[23] drop out of school and some fall into a pattern of crime.
It is telling that many incarcerated children and youth have never had[24] a thorough medical and psychosocial assessment, and many have undiagnosed FASD. So, their strengths and needs have too long gone unrecognised and they have missed opportunities for vital early treatment.
The challenges of FASD are compounded[25] by early-life trauma. We must revert from a punitive to a therapeutic approach for these vulnerable children.
Every moment matters in your pregnancy.The focus so far
For more than a decade, the Australian government has partnered with clinicians, researchers and others and has made a major contribution to addressing FASD.
After two national[26] inquiries[27], we have a National Strategic Action Plan for FASD[28] and a national FASD Advisory Group[29] to monitor implementation of its recommendations. The Australian Guide to the Diagnosis of FASD[30] has bolstered clinicians’ skills, and the FASD Hub website[31] is a valuable resource.
Local resources for primary[32] and early childhood educators[33] and justice professionals[34], funded multidisciplinary clinics[35], the National Organisation for FASD[36] website and helpline, a FASD registry[37] to monitor trends, and a vibrant research network[38] have collectively raised awareness and improved diagnosis and support for people living with FASD and their families.
However, FASD is still inadequately managed within the health and justice sectors in remote regions, including the NT, which are overwhelmed by the needs.
What the new funds could achieve
We need a systematic approach to identify all children with developmental and learning vulnerability and offer them treatment at the earliest possible opportunity. In any such child, we need to consider FASD and explore whether there might be a history of prenatal alcohol exposure.
We must increase our screening and diagnostic capacity – not only in specialised services, but in the places of first contact with health services: primary care, midwifery and community paediatric practices, in remote regions.
We also need trained professionals, available locally, to assist families to join the National Disability Insurance Scheme. But there is also a need for accessible services[39], including where remote families live[40], so they can spend the support funds they are allocated.
The need for culturally appropriate and trauma-informed services to support people with FASD and their families goes without saying. Training of more Aboriginal and Torres Strait Islander health workers is essential.
Prioritise prevention
Prevention efforts must be at the fore[41] in the effort to address FASD. We must understand[42] that disadvantage and historic trauma, addiction, and partner drinking and violence are among the most common drivers[43] of alcohol use in pregnancy, and shift the blame away from women. In turn, the drivers of disadvantage – inadequate housing, education and vocational opportunities, transport and access to good-quality education and health care – must be addressed. Australians must also relinquish their tolerant attitudes to binge drinking.
From July 2023, pregnancy warning labels[44] will feature on all Australian alcohol products. Importantly, Australia’s first public awareness campaign – Every Moment Matters[45] – is currently being rolled out nationally. It includes resources for the public, women at risk, and health professionals. And the Strong Born[46] resources will be launched next week for Aboriginal and Torres Strait families and service providers.
All these efforts must be underpinned by legislation and strategies proven to reduce alcohol harms. Although unpopular, we must continue to push for restrictions on advertising and promotion of alcohol, appropriate taxation and pricing, and limit-setting on the number and opening hours of liquor outlets, especially in our most vulnerable communities.
References
- ^ announced (theconversation.com)
- ^ commitment (cmc.nt.gov.au)
- ^ Alcohol warning labels need to inform women of the true harms of drinking during pregnancy (theconversation.com)
- ^ followed the relaxation (www.sbs.com.au)
- ^ Stronger Futures (www.dss.gov.au)
- ^ FASD (www.cdc.gov)
- ^ calling for action (www.abc.net.au)
- ^ condition (www.fasdhub.org.au)
- ^ have (pubmed.ncbi.nlm.nih.gov)
- ^ estimated (jamanetwork.com)
- ^ high risk (pubmed.ncbi.nlm.nih.gov)
- ^ high rates (pubmed.ncbi.nlm.nih.gov)
- ^ juvenile detention (bmjopen.bmj.com)
- ^ occurs (jamanetwork.com)
- ^ FactCheck Q&A: does Australia have some of the highest rates per capita of fetal alcohol syndrome in the world? (theconversation.com)
- ^ about 60% (bmcpublichealth.biomedcentral.com)
- ^ high-risk drinking (onlinelibrary.wiley.com)
- ^ more likely to drink (ada.edu.au)
- ^ economic costs (pubmed.ncbi.nlm.nih.gov)
- ^ social impacts (doi.org)
- ^ often slow (pubmed.ncbi.nlm.nih.gov)
- ^ good support (learningwithfasd.org.au)
- ^ may (bmjopen.bmj.com)
- ^ never had (bmjopen.bmj.com)
- ^ compounded (edmontonfetalalcoholnetwork.files.wordpress.com)
- ^ national (www.aph.gov.au)
- ^ inquiries (parlinfo.aph.gov.au)
- ^ National Strategic Action Plan for FASD (aodknowledgecentre.ecu.edu.au)
- ^ FASD Advisory Group (www.fasdhub.org.au)
- ^ Australian Guide to the Diagnosis of FASD (www.fasdhub.org.au)
- ^ FASD Hub website (www.fasdhub.org.au)
- ^ primary (learningwithfasd.org.au)
- ^ early childhood educators (www.nofasd.org.au)
- ^ justice professionals (www.tandfonline.com)
- ^ multidisciplinary clinics (www.health.gov.au)
- ^ National Organisation for FASD (www.nofasd.org.au)
- ^ registry (fasdregistry.org.au)
- ^ research network (onlinelibrary.wiley.com)
- ^ accessible services (theconversation.com)
- ^ where remote families live (cdn.shopify.com)
- ^ at the fore (www.phrp.com.au)
- ^ understand (bmcpublichealth.biomedcentral.com)
- ^ common drivers (onlinelibrary.wiley.com)
- ^ pregnancy warning labels (www.foodstandards.gov.au)
- ^ Every Moment Matters (everymomentmatters.org.au)
- ^ Strong Born (twitter.com)
