Skip to content

FASD: The state of play in Australia - Professor Elizabeth Elliott

James Lush, MC, says:

…Professor Elizabeth Elliott, please make her welcome.

[audience applauds]

Professor Elizabeth Elliott, of the University of Sydney and Sydney Children’s Hospitals Network, says

Thanks very much, James. That introduction does make me feel rather old and tired.

I would like to begin by thanking Marie very much for her welcome and acknowledging the traditional owners of the land on which we meet today, the Noongar people. I pay my respects to their ancestors and I welcome any Aboriginal people present today.

I particularly want to thank Minister Hunt for his message, and David Laffan for delivering Ken Wyatt's message. We're absolutely delighted that you've been able to launch the next strategic plan at this meeting. And as you say, to commit money, which really indicates that right from the outset, you're committed to action coming out of that report.

As co-director of the Fetal Alcohol Spectrum Disorder Research Australia, our NHMRC Centre of Research Excellence, I'm delighted to be the joint host of this conference today. Its title, "Our Science Our Stories", is intended to convey the aim that this conference is inclusive of individuals and families living with fetal alcohol spectrum disorder who are at the core of our research.

It is an honour to make this presentation today on the state of play of FASD in Australia on behalf of Professor Carol Bower, the Centre's co-director, all members of our teams and our many collaborators. The Centre has hubs in both Perth and Sydney, but it includes a network of minds from around Australia and New Zealand. And we sincerely hope that at this conference will help us in extending that network.

In this talk I can't be comprehensive, but I'm just going to give a few examples to illustrate some of the work that we've achieved in the past 14 years or so to advance knowledge on fetal alcohol spectrum disorder in Australia, to improve clinical capacity and to advocate for families.

Now, I just want to start with a quote that I'm very fond of, by a colleague and friend, June Oscar, who's led the way in implementing alcohol restrictions and in promoting research into fetal alcohol spectrum disorder and support for parents. She's currently our Social Justice Commissioner for Aboriginal and Torres Strait Islanders.

So June said in address to parliament back in 2008, "Fetal alcohol spectrum disorder is a tragedy that somehow transcends other aspects of grief and trauma. Here is innocent young life. The future of our people, our culture, our language, knowledge about the magic creation and laws of our country who were born into this world with brains and nervous systems that are so impaired that life for that person from birth to death is cruelly diminished." And I think we need to keep this as the basis of all our work in FASD and our deliberations over the course of this conference. That fetal alcohol spectrum disorder is a preventable brain injury with lifelong consequences.

Now, 31 years after fetal alcohol syndrome was described by Ken Jones in the Lancet, Carol Bower and I wrote an article which was published in the "Journal of Paediatrics and Child Health" here, asking the question, "Fetal alcohol syndrome in Australia, is it fact or fiction?" Back then we had NOFASD, it had already been formed by Sue Miers who's here today, but there were only 12 publications from Australia on alcohol use in pregnancy or fetal alcohol spectrum disorder, which left us with many questions.

How frequent was alcohol use in pregnancy? How frequent was fetal alcohol syndrome as we called it back then? What were the high risk groups? Were there any services available? What was women's knowledge about the harms of alcohol? What was health professionals’ knowledge? And I hope I'll illustrate that we've really come a long way in the last 14 years.

So I'm just going to be covering briefly what's been achieved since 2004, what needs to be done, and what are our challenges.

And as I said, the focus is on Australia. Of course, we work very closely with our colleagues in New Zealand. And what I want to focus on today is really the national efforts. Although there are many people in this room who've made significant individual efforts.

But we do have some challenges.

And I showed this slide recently when I was speaking at the European Conference on Fetal Alcohol Spectrum Disorder in Germany. And you can see that Germany and many other countries fit easily within Australia. And also that Australia is very diverse. And I just wanted them to understand that there are over 450 Aboriginal languages within Australia. And we're a very small population scattered over a very large area. And we have to deal with this complexity of eight state and territory health services. So we really do need a national approach, but it is challenging.

Now, it's hard to believe that there is still alcohol use in pregnancy, but there is, it's alive and well. And we have established from our previous research that health professionals have been quite reluctant to ask about alcohol use in pregnancy. They're worried about frightening or stigmatising women. They don't know what to advise, and they don't know where to refer people. They often say they don't have time and they want a structured method to ask.

Furthermore, many health professionals are unaware of the guidelines which quite clearly state that the best advice is to avoid alcohol if you're planning a pregnancy or during pregnancy.

Conversely, we know that women want to know, they want to be asked about alcohol. They want to be advised, and furthermore a high proportion of them, over 90% wanted to be told not to drink alcohol during pregnancy. They want a clear message. And I think it's up to us as health professionals to give that clear message.

We do have guidelines, and those guidelines were last revised in 2009. And they give this clear message that if you're planning a pregnancy or pregnant, the safest advice is not to drink.

One of the difficulties we have is adequately disseminating these and making sure that health professionals have the information that's contained in those. They are currently being revised. And I think it'll be very important for the NHMRC and the government to ensure that those messages get out to health professionals.

Now, I mentioned that this- it's hard to believe that women are unaware of the harms of alcohol in pregnancy. And yet we know that Australia is a heavy drinker.

We rank 13th in the world in alcohol consumption according to the WHO, 10.4 litres of pure alcohol per annum for people over the age of 15. We know from our recent studies that between 50 and 61% of women are still drinking in pregnancy.

Now these include studies that Jane Halliday's running in Victoria, the AQUA cohort study Delyse Hutchinson's running in New South Wales and WA, the Triple B Cohort. And we know that these are just normal women presenting to antenatal clinics in New South Wales and Victoria, 60% of them are drinking in pregnancy. And although many stop once they realise they're pregnant or reduce their consumption, many have drunk at high levels or binge levels before pregnancy recognition. And this really means that we've got to get back to our primary carers and make sure that they're aware of their patient population and really intervene early.

If you're drinking heavily as a young woman of childbearing age, there is an option of using contraception. If you're planning a pregnancy, then the option is to stop drinking.

Now we do know that there are pockets of very high alcohol use. We know that from the Lililwan Study in Fitzroy Crossing in Western Australia, 55% of women drank during pregnancy but they were drinking at very high levels. So the patterns do vary according to the setting.

And one of the projects that we're involved in at the moment is run out of Hunter New England where we're actually embedding the Audit-C, a structured questionnaire about alcohol use in pregnancy into the electronic maternity records. And we're documenting whether health professionals are asking, advising, and referring women appropriately.

But more importantly, we're phoning a random sample of women who've attended those services to understand from them what were they asked, what information did they receive, and how did this influence their behaviour? And you'll be able to hear more about this project from Melanie Kingsley over this conference.

Sadly we haven't published much in Australia about prevention. Martyn Symons from the CRE has recently published a systematic review of prevention interventions to reduce prenatal alcohol exposure and fetal alcohol spectrum disorder in Indigenous communities, and that will provide a good guideline for developing projects.

But I think we do need to make sure that when we're looking at strategies, we're using strategies that are evidence-based and have been successful elsewhere. And as David Laffan said, "That we're appropriately evaluating whatever we do."

So, what do we know about the epidemiology of fetal alcohol spectrum disorder in Australia? Well, these sort of population-based prevalence studies are very difficult to do, very expensive and time-consuming. And we really do still have limited data, but I think we have enough data to know that we don't need to do too many more prevalence studies.

We just need to get on and identify and manage the children who are affected with fetal alcohol spectrum disorder.

So one very important study done by Carol Bower, which is the largest population-based study done on fetal alcohol spectrum disorder was done in Western Australia with cases reported to the Western Australian Register of Developmental Anomalies. These were kids born between 1980 and 2010. And she found a prevalence of 0.26 per 1,000 births, but demonstrated a two-fold increase in the prevalence over the course of the study. And sadly 85% of these children were Aboriginal.

Now this is not to say that this is an Aboriginal problem, and we all know and suspect that there are many children living with fetal alcohol spectrum disorder amongst us throughout society. Many have maybe received a misdiagnosis, a wrong diagnosis, or not been diagnosed, or it's not been thought appropriate by the clinician to make that diagnosis.

Now we know from a survey that we've done of paediatricians that 60% said that they were worried about making this diagnosis because it might stigmatise children and families. And I'm sure we'll hear from Claire in a minute.

And we certainly heard yesterday that for parents having a diagnosis is often a relief and it really does help them adjust their expectations of the child and understand that their behaviour is not wilful but it's a manifestation of their brain injury.

You'll also hear at this conference of presentations about the current Australian Paediatric Surveillance Unit study. We're prospectively asking paediatricians to report every month any new case of fetal alcohol spectrum disorder that they've diagnosed. And over the last three years we've identified over a 100 new cases per year. 75% of these children are in child protection. 57% of them are Indigenous, half live in foster or adoptive care. And many are not being diagnosed till they struggle at school at the age of about eight. And of course, many of them are now being reported by the few specific FASD diagnostic services that we have in this country.

We do have some prevalence data in specific populations, which is of course not easily extrapolated to the general population, but we know that in the Lililwan Project in Western Australia, James Fitzpatrick's work, 19% of children had fetal alcohol spectrum disorder.

Now you can imagine the impact of this if you have one in five children in the classroom and in the community with disruptive behaviour, struggles with learning, perhaps physical problems. So this is a problem that's going to have an impact for generations.

We also know from the recent work led by Carol Bower in the Banksia Detention Centre in Perth that 36% of the children that they examined in juvenile justice had fetal alcohol spectrum disorder. Again, Carol is working very closely with the lawyers to increase the capacity to identify and manage those kids.

But more importantly, we need to take a step back and identify these children early in the communities and provide the sort of supports that will disrupt that pathway through the justice system into incarceration.

Now, after the Lililwan Project, this was a project, a small cohort study, but a very important impact, conducted in 54 remote communities in the Fitzroy Valley. And it caught the attention of the media and a lot of people around Australia. And as a result of this, Sharman Stone initiated a national inquiry into fetal alcohol spectrum disorder, and we were able to contribute a report to that inquiry. But this inquiry was accepted by both sides of government and action followed.

And a national action plan, the first plan, was developed and as David Laffan has said, "Approximately $20 million has followed." And it's this money and this plan that has really enabled us to have a significant impact nationally on FASD.

And I just want to run through some of those things which, in fact, David, you stole them from me. You've covered most of my talk.

But I do want to just reiterate that really it's the commitment of government following this inquiry that has enabled us to take this national coordinated approach.

So the first thing was, we'd funded a national technical advisory group which advise government on national strategy. And this was a multidisciplinary group including government representatives.

It funded a national fetal alcohol spectrum disorder surveillance through the Australian Paediatric Surveillance Unit which I've previously mentioned. And those cases will be incorporated into a National Fetal Alcohol Spectrum Disorder Register. This will enable us to track the trajectory of these kids but also to alert families when new treatments become available, when new diagnostic tests become available. And to put them in touch with each other through peer support.

It's funded the development of a national FASD website, a sort of one-stop-shop, predominantly intended for health professionals, but with information that's relevant to teachers and lawyers and a whole range of professionals. And of course, to parents and caregivers. And it really has a comprehensive list of all the research that's being done in Australia and those outcomes. And you'll be hearing about that also in the conference from Pete O'Malley and Heather Jones.

As Dave mentioned, this funded the development of an "Australian Guide to the diagnosis of FASD." We knew from our surveys that health professionals didn't know how to make this diagnosis. They didn't know what the diagnostic criteria were and they wanted some guidelines.

And yesterday we ran a very successful diagnostic workshop. And over the next 12 months we'll be running these workshops throughout the country, really aiming to build capacity in the health professional workshop, just not only in paediatrics, but in allied health, in psychology, and in a whole range of specialties.

The funding also assisted Lucy Burns and her colleagues at the National Drug and Alcohol Research Centre to develop guidelines for supporting women using alcohol in pregnancy. And this is a very specialised area, particularly women who are alcohol dependent. The alcohol cannot be stopped abruptly, or that might have adverse impacts on the pregnancy and on the fetus.

And it's also funded the very important role performed by the National Organisation for Fetal Alcohol Spectrum Disorder, including as David mentioned, sort of a telephone line helpline which parents and carers find extremely useful.

It funded the development of some prevention and health promotion resources which have been distributed all over Australia through the New Direction Services for mothers and babies.

And it also funded a national resource, which is available freely online to assist health professionals in how to ask about alcohol use in pregnancy. And again, the basis for these 'Women want to know' resources which is led by the Foundation of Alcohol Research and Education, were the studies by Liz Peyton that suggested that women wanted to be asked, wanted to be advised, and wanted to be advised not to use alcohol during pregnancy.

There's also been some development in services over the last few years, but child development services in Australia are really grossly inadequate. Across the board we're increasingly seeing children with chronic complex problems due to the survival of children with rare diseases and the survival of very preterm babies. And so these child development units are really stretched and stressed.

So what has been very helpful is to have some funding for FASD-specific assessment services, which have both a service and a training role. And these are just some of the places where these services are available.

In fact, FARE, the Foundation for Alcohol Research and Education, funded the first FASD assessment clinic in Sydney, but subsequently there's been funding in New South Wales and Queensland for state services and from the Australian Government for a range of services.

As was mentioned, there is now an Australasian clinical network, incorporating clinicians who are seeing and managing children with fetal alcohol spectrum disorder across Australia and New Zealand. And this is being led by Doug Shelton and Andi Crawford who also participated yesterday in our diagnostic training workshop.

I put this slide up just to remind us that we really need to address this issue across the lifespan. And I work in the CICADA Centre in New South Wales where we've actually incorporated into the one service the FASD assessment clinic, a clinic for assessing adolescents who have a problem with alcohol use and a clinic for assessing children who are living in families where there's drug and alcohol use.

In individual communities, such as in the Fitzroy Valley, interventions have been put in place to try and address the manifestations of fetal alcohol spectrum disorder. So in this situation, the Jandu Yani U program is a positive parenting program, which has been introduced by Triple P International to support families and carers of children who are struggling with severe behavioural issues.

And this slide is up to remind me that really we must take a trauma-informed approach that many children with fetal alcohol spectrum disorders in addition are living in situations where there's been significant early life trauma, whether that be overcrowding, family violence, drug and alcohol use, or other disadvantage. The Marulu unit, which was formed after the Lililwan Project in the Fitzroy Valley is providing that source of wraparound service.

Now we're hosting the conference, the FASD Research Australia Centre of Research Excellence. And this slide is just put up to remind you that we not only do research, but we're involved in training the next generation of clinicians and researchers promoting collaboration.

And as I said, we would love all of you to join our network after this conference.

But particularly looking at the translation of research into policy, into clinical services, into advocacy. We have had some very innovative research and I've mentioned already the Banksia study led by Carol Bower, which has shown such a high prevalence of fetal alcohol spectrum disorder in juvenile justice.

We've been looking at the facial features associated with fetal alcohol spectrum disorder in Aboriginal populations because we don't have good standard data there. And I put this up to commend Jane Halliday and the group from the AQUA cohort in Victoria. Some very innovative work using three-dimensional imaging of faces of children, which indicated that children who were exposed to alcohol, even low to moderate amounts of alcohol in the first trimester had a significantly different facial feature, facial profile to children who were not exposed to alcohol. And it's this sort of imaging and other new biological markers that will help us significantly in the future to make more accurate and earlier diagnosis.

We also have a remit for education, training and advocacy, and there are a number of videos and other educational resources for communities and professionals which have been developed over the last 14 years, including these two films. And hopefully we'll be hearing from Tristan's parents, Marmingee and Jeff later in this conference.

There's also been an effort by other states, for example New South Wales who's developed a series of very accessible and interesting resources for people working in Aboriginal communities. Again, these are freely available through New South Wales Health and consist of a series of videos and pamphlets targeting not only women and communities and health professionals, but men and youth.

At this conference, Sue Thomas and Jane Weston will be launching their new resource, the second edition of their book about fetal alcohol spectrum disorder for teachers. And importantly, this includes how to address and understand the complex trauma that's often associated with fetal alcohol spectrum disorder.

There's been innovation in advocacy. And when I presented this slide recently at a conference in Europe, there was a lot of interest. We know that one of the major drivers for women drinking in pregnancy is their partner's drinking in pregnancy. And the FARE campaign is suggesting that men take a pregnant pause, or partners take a pregnant pause and support their partners while they're planning to get pregnant and during pregnancy, by going without alcohol.

There's also been a lot of interest in this area from the legal profession, and Carol Bower yesterday ran a very successful seminar for I think about 90 justice professionals. Increasingly justice professionals are realising that the children they're seeing in detention centres, the children they're seeing in the courts, children the police are picking up may have an underlying cognitive impairment or other functional problems associated with fetal alcohol spectrum disorder.

And recently, Anne Cregan put out a review article suggesting that we look again at the criteria by which children are judged to have impairment so that it's not just based on a single IQ, but it's based on their functional impairment and that this be incorporated into new laws and policies.

We're here at this conference. That's one of our roles, education and promoting collaboration. And we really hope that you get a lot out of the next few days.

I just want to briefly highlight, and I won't go through all of these, that Australian researchers and clinicians have had a huge role in advocating for fetal alcohol spectrum disorder, whether it's contributing to inquiries, national inquiries, Northern Territory inquiries, inquiries into alcohol advertising, inquiries into accessibility to mental health services.

The Royal Commission into Detention of Children in Northern Territory which highlighted this issue of the strong association between fetal alcohol spectrum disorder and incarceration.

We've had a lot of input into guidelines: the National Pregnancy Guidelines, AMA and College of Physicians statements, NHMRC guidelines, the WHO guidelines, the international charter for prevention of FASD, and labelling of alcoholic beverages.

And collectively we've been involved in a lot of committees. At the WHO global summit, we were invited to be the people who spoke about fetal alcohol spectrum disorder.

David Laffan mentioned the federal health round table on the fetal alcohol spectrum disorder strategy, the national FASD strategy, the national alcohol strategy.

We're involved in looking at reviewing the MBS items for which doctors used to charge for consultations for assessing children with complex developmental problems, including fetal alcohol spectrum disorder. Reviews of the NDIS. And membership of ANACAD, the Australian National Advisory Council on Alcohol and Other Drugs.

But we also collaborate quite widely internationally. At this conference we're going to be signing a memorandum of understanding with a Canadian research group. And we hope that we might, Christine Rogan, if you're here somewhere, develop a similar memorandum of understanding with New Zealand.

I've mentioned the involvement in various international guidelines and the expert advisory committees for international conferences.

Quite recently we had some good news that after decades the fight for warning labels on alcoholic beverages will really improve the wellbeing of future generations of Kiwi and Australian children and has been put ahead of alcohol industry profits. So the labelling of alcoholic beverages, if you go to Canada, all our Australian wine has a warning label about alcohol use in pregnancy. In Australia that was not mandated. And we know from work done by the Foundation for Alcohol Research and Education that the labels were poorly legible. They were small, they were often inaccessible and they often just referred people to a website. So this is really a big advance that this has now been mandated.

What we do need to guard against is the challenge that the industry will be given control of those labels. We do have a challenge with the alcohol industry, we can't deny that. There was an example recently where a poster was sent to many health professional offices with the slogan, "It's safest not to drink while pregnant." Now this is entirely consistent with NHMRC guidelines.

However, the subtext said in that small print, "It's not known if alcohol is safe to drink while you're pregnant." So this was really a very mixed message, leading Michael Thorn to make the comment that "The alcohol industry has no role in the public health information space." And I think that's something we do need to keep at the top of our mind.

Now I've mentioned these labels on alcoholic beverages. And again, I think the government should take control of the type of label, the size of label, where it appears and what the message is, rather than leaving that to the industry.

And most recently at the round table to review the draft National Alcohol Strategy, Terry Slevin, the CEO of the Public Health Association said, "Australia does not support any ongoing role for the alcohol industry or its representatives in setting or developing national alcohol policy." And this is because of course the conflict of interest that the role of industry is to maximise sales and profits. Whereas the role of public health professionals and all of us is to minimise the harms of alcohol by minimising alcohol consumption.

Now, I'm often asked, "How much can I drink in pregnancy?" This is still a challenge that people are not getting a clear message. The media is a challenge. We have things in the media such as "Rules about how to behave in pregnancy diminish women's freedom." "Advice to pregnant women on drinking is patronising and sexist." And I think, again, it's up to all of us to stand up to the media and say, "This is not correct." We have alcohol restrictions instituted by many Aboriginal communities and they are constantly being challenged.

It's our role to provide the evidence to support the continuation of these restrictions. We do need training and capacity building in services across the lifespan. And this is just an article about one of the children in our Lililwan cohort who stole a car and it crashed. Unfortunately it was full of seven other children, one of whom was killed. And so that little boy ended up in jail. And we really need to be able to provide the services once we've made the diagnosis across the lifespan.

So we've had lots of successes, national this and national that. We've mentioned them all and they're all listed here. And I think it's important to realise just how much we have achieved.

There are a couple of things I haven't talked about.

One is that the Australian Institute of Health and Welfare has now mandated that alcohol consumption data will be collected during pregnancies. And we're well on the way to working out how that might be achieved.

Also, I want to just reiterate the importance of consumers in guiding what we do in research and in clinical care. You'll be hearing later in this conference from Narelle Mullan about a national consumer network that we've established and consulted about what they see as the priorities.

So, finally, what have we achieved? Well, there's been a huge amount of research and developments in FASD in Australia. We now have 150 publications in the 14-year period from Australian researchers. And there've been significant impacts on services, policy, advocacy, education, and parent support.

Sue Miers, who established the National Organisation for Fetal Alcohol Disorder was recently awarded an Unsung Hero Award.

And I just wanna say that there are many unsung heroes. Now, I couldn't fit all of you onto this slide, but you're all out there in the audience. And I think we need to acknowledge that many people in Australia and many of their supporters have made a significant contribution.

We are absolutely delighted, David, about the national Fetal Alcohol Spectrum Disorders Strategic Action Plan.

Our journey in addressing FASD has been a long one. And although we have a long way to go I think we have made significant gains.

This has only been possible through collaborating through a national approach, by forming strong partnerships between parents and families living with FASD, Aboriginal leaders and communities, researchers, clinicians, advocacy groups and policymakers, governments and NGOs, educators and justice professionals.

We really welcome the announcement today of the strategy and the funding that follows. As the minister said in his address, "Many of the people in this room," I said women because a lot of us are women, "but many of the people in this room have shaped that strategy.

And in moving it forward, it will be up to all of us to ensure that the precious funding that follows is not squandered." Specifically, it will be important to maintain a national strategic and coordinated approach. As a small group we can't be derailed by divisions in our ranks.

Currently the strategy remains firmly in the health portfolio. Yet we all know that addressing FASD will require commitment across many portfolios, education, community, justice, and Indigenous affairs. We must continue to collaborate rather than compete to avoid duplication of effort, to ensure that whatever programs are funded are evidence-based. And that any innovations that are introduced are thoroughly evaluated as David Laffan said.

And finally, thank you for coming to the conference and we really would welcome all of you to join our CRE network to help achieve the goals in the years ahead.

Thank you.

[audience applauds]