Meeting the Challenge of Fetal Alcohol Spectrum Disorders (FASD)

Abstract

Fetal Alcohol Spectrum Disorders (FASD) is a major source of neurodevelopmental impairment among both Aboriginal and non-Aboriginal Australians. Its effects are experienced not only by families directly affected, but also in health, education, child protection, youth and criminal justice systems. Nationally, the prevalence of FASD is poorly documented and services for prevention, diagnosis and treatment are inadequately resourced. In the case of remote Aboriginal communities, the challenges inherent in diagnosing FASD are compounded by the costs of delivering specialist services to remote settings. In recent decades, several Aboriginal communities have taken the initiative and developed community-led programs for assessing the prevalence of FASD, creating culturally appropriate education and support services, and developing capacity to diagnose FASD in primary health care settings. This chapter describes these initiatives and considers the implications for other communities and policy-makers.

8.1 Introduction

One of the most significant developments in the first decades of the twenty-first century in Aboriginal alcohol interventions is the concerted attempt mounted in several communities to prevent and diagnose Fetal Alcohol Spectrum Disorders (FASD) and to support impacted individuals and families. In taking a lead in responding to FASD, these communities have arguably moved ahead of much of the mainstream Australian health sector, where FASD remains poorly understood and inadequately treated (The Senate Community Affairs References Committee 2021). In this chapter, we describe recent Aboriginal initiatives and the concerns and aspirations that lie behind them. We begin with some context-setting by summarising recent developments in the clinical criteria and terminology used to define FASD and reviewing what little is known about its prevalence in Australia. We then describe recent initiatives by Aboriginal communities and organisations in documenting, preventing, diagnosing and supporting people affected by FASD.

8.2 What is FASD?

The term Fetal Alcohol Spectrum Disorders (FASD) refers to neurodevelopmental and physical impairments that can result from prenatal alcohol exposure (Bower and Elliott 2020: 115–130). Alcohol crosses the placenta and is teratogenic—that is, it can cause malformations in the developing embryo or fetus. As Rendall-Mkosi et al. put it

Alcohol consumed by the mother at any stage in pregnancy may affect the fetus and result in permanent impairments of growth and brain development problems. The more the mother drinks, the worse the effect is likely to be (Rendall-Mkosi et al. 2008: 5).

No level of alcohol consumption has been shown to be safe during pregnancy, and the current NHMRC alcohol guidelines state that pregnant and breastfeeding women should not consume alcohol (National Health and Medical Research Council (NHMRC) 2020). FASD can be considered as a ‘whole body’ condition. The most widely known features are brain-based, affecting areas such as brain structure, cognition, language, memory and impulse control. A small proportion of children also have characteristic facial features: a smooth philtrum—that is, absence of a ridge between the base of the nose and the upper lip; a thin upper lip and small palpebral fissures¹ (Bower and Elliott 2020). Prenatal alcohol exposure can also impact all the developing organs and systems of the body. Research is demonstrating a wide range of physical health problems for children, young people and adults with FASD (Reid et al. 2021). The effects of FASD are irreversible and, in some cases, generate a need for lifelong support. While Australia still lacks reliable data on prevalence, FASD is considered to be the leading cause of preventable birth defects and intellectual disability in Australia (The Senate Community Affairs References Committee 2021, para 1.7). However, as we explore further below, prevention is not simply a matter of persuading individual pregnant women to stop drinking. Efforts to prevent FASD are unlikely to be effective unless the structurally generated inequities that give rise to high levels of FASD in particular settings are addressed (Lyall et al. 2021; May and Gossage 2011; Gonzales et al. 2021).

Australia exhibits high rates of prenatal alcohol exposure compared with other countries. According to data collected through triennial National Drug Strategy Household Surveys, the proportion of women aged 14–49 who abstained from alcohol while pregnant rose from 39.7% in 2007 to 64.6% in 2019. Over the same period, the proportion abstaining while breastfeeding rose from 24.5% in 2007 to 49.2% in 2019 (Australian Institute of Health and Welfare 2020a, c Table 8.14). While these trends are encouraging, they also indicate that around one-third of pregnant women and one-half of breastfeeding women continue to drink alcohol—much higher than Popova et al.’s estimate of the global prevalence of alcohol use during pregnancy of 9.8% (Popova et al. 2017). A review of Australian studies of women’s alcohol use during pregnancy conducted by the National Drug Research Institute reported that, contrary to what stigmatising stereotypes might lead one to expect, Australian women who continued to drink while pregnant tended to be older, to have higher incomes, education and socio-economic status, and to live in rural and remote regions (McBride and Ward 2019).

Although alcohol has long been known to have harmful effects on human embryos, the contemporary concept of a syndrome is of more recent origin. (The term ‘syndrome’, for non-clinical readers, refers to a group of indicators and/or symptoms that occur together, and in doing so, are used to define a medical condition.) The term ‘Fetal Alcohol Syndrome (FAS)’ was first used in 1973 (Calhoun and Warren 2007; Jones et al. 1973, 1974; Jones and Smith 1973; Lemoine et al. 1968). Since then, the terminology and associated diagnostic criteria have undergone several changes. The Australian Guide to the diagnosis of FASD, published in 2016, proposed adoption of FASD as a diagnostic term, with two sub-categories: (1) FASD with three sentinel facial features and (2) FASD with fewer than three sentinel facial features (Bower and Elliott 2020; Bower et al. 2017). The 2016 Guide was updated in February 2020 (Bower and Elliott 2020) and is currently undergoing a more comprehensive review by a team from the University of Queensland in collaboration with a wide range of key stakeholders around Australia, due for completion in 2023 (The Senate Community Affairs References Committee 2021, para 4.79). The diagnostic criteria as set out in the updated Guide are shown in Box 8.1.²

Box 8.1 Diagnostic Criteria for Fetal Alcohol Spectrum Disorders (FASD)

From Bower and Elliott (2020: 5)

In Table 8.1, the left-hand column lists the three types of diagnostic criteria: prenatal alcohol exposure (confirmed or unknown); neurodevelopmental domains (10 domains listed) and the three sentinel facial features mentioned above. Diagnosis of one or other of the sub-types of FASD hinges on the presence or absence of these criteria. For example, a person exhibiting three sentinel facial features plus severe impairment in at least three neurodevelopmental domains would be diagnosed as ‘FASD with three sentinel facial features’ even if the mother’s alcohol consumption during pregnancy (i.e. prenatal alcohol exposure) was unknown, but if fewer than three sentinel facial features were present, the person would only be categorised as having FASD if the mother was known to have consumed alcohol while pregnant.

8.3 How Big a Problem is FASD in Australia?

Nobody knows how widespread FASD is in the Australian community. This is partly because determining the prevalence of FASD is difficult, for reasons discussed below, and partly because no one to date has made a methodologically robust attempt to estimate its prevalence in the general population (Reid 2018). Indeed, prior to the beginning of the twenty-first century, FASD received little attention in Australia, either among health service providers or policy-makers. This was in contrast to countries such as Canada, the US and South Africa, where the burdens imposed by FASD on individuals, families and sectors such as the education system had begun to be recognised. In 2002, partly in response to concerns expressed by some Aboriginal people about levels of FASD in their own communities, the National Expert Advisory Committee on Alcohol (NEACA) commissioned a literature review and convened a National Fetal Alcohol Syndrome Workshop in Adelaide (O’Leary 2002). Since then, several parliamentary inquiries have taken place, FASD Action Plans have been formulated, funding for diagnostic and support services has increased, and in 2020 Commonwealth, State and Territory governments agreed to make pregnancy warning labels mandatory on alcoholic beverages from 2023.³ Despite these welcome changes, a House of Representatives Standing Committee inquiry in March 2021 concluded that awareness of FASD was still limited both among health professionals and in the wider community and that existing diagnostic and support services continued to struggle to meet demand (The Senate Community Affairs References Committee 2021).

International research suggests that the prevalence of FASD is higher than previously thought. May et al., drawing on studies conducted in South Africa, Italy and the US, concluded that FASD affected 2%–5% of young school-age children in the US and other Western European countries, with higher rates among disadvantaged populations (May et al. 2009). Lange et al. (2017) conducted a systematic review and meta-analysis of studies that estimated prevalence of FASD among children and youth in general populations, on the basis of which they estimated global prevalence at 7.7 cases per 1,000 population (95% CI 4.9–11.7 per 1,000 population).

Three main methods have been used to estimate prevalence of FASD: clinic-based studies, usually conducted in hospital prenatal clinics; passive surveillance studies using administrative datasets such as birth defect registers and perinatal data collection systems, and active case ascertainment methods that involve identifying children with FASD in a given population (Burns et al. 2013). Clinic-based methods allow maternal alcohol consumption to be recorded, something usually not available to passive surveillance studies. However, because FASD is often not diagnosed until several years after a child is born, the method is likely to miss cases. No recent clinic-based studies of FASD have been reported in Australia (Burns et al. 2013). Most Australian studies have been based on passive surveillance. Bower et al. examined cases of birth defects among children born in Western Australia between 1980 and 1997 and recorded in either the WA Birth Defects Registry or the Rural Paediatric Service database (Bower et al. 2000). From these records, they estimated prevalence of FAS as 0.02 per 1,000 live births among non-Aboriginal children and 2.76 per 1,000 live births among Aboriginal children—more than 100 times higher than the non-Aboriginal rate (Bower et al. 2000).

Harris and Bucens (2003) conducted a retrospective review of medical records of children—both Aboriginal and non-Aboriginal—born in the Top End of the Northern Territory between 1990 and 2000. They estimated the prevalence of FASD in the Aboriginal population at 4.7 per 1,000 live births.⁴ One surprising finding of the study, given the well-documented high levels of alcohol consumption by non-Aboriginal residents of the NT, was that no cases of FASD were identified among non-Aboriginal births (Harris and Bucens 2003).⁵ The authors acknowledge that the finding is difficult to explain, but suggest that it may point to what they call ‘ascertainment bias’—that is, reluctance on the part of paediatricians to ask non-Aboriginal mothers about their alcohol consumption during pregnancy, and/or to attribute observed signs to mothers’ drinking (Harris and Bucens 2003: 531).

Both the WA and the NT studies are thought by the researchers who conducted them to have under-estimated true prevalence of FASD, for reasons discussed below. So too, in all likelihood, did a more recent national study, in which researchers analysed cases of FAS diagnosed by paediatricians and reported to the Australian Paediatric Surveillance Unit (APSU) between January 2001 and December 2004 inclusive (Elliott et al. 2008). Of 169 cases notified by paediatricians, 92 were classified by the researchers as FAS, partial FAS or suspected FAS.⁶ In 60 of these cases (65.2%), the mothers were of Aboriginal and/or Torres Strait Islander descent. Of the 92 cases, only six had been diagnosed at birth. The median age at which children had been diagnosed was 3.26 years, with some diagnoses taking place as late as 12 years of age (Elliott et al. 2008).

Surveillance studies such as these present several problems when estimating prevalence of FASD. Firstly, residents of remote, rural or low socio-economic status communities often have poor access to specialised paediatric and obstetric services. Secondly, diagnosing FASD is a complex task, and the necessary data is often poorly recorded in medical notes (Elliott and Bower 2004). Many of the cases identified by Harris and Bucens in their study, for example, had not previously been diagnosed in the children’s medical records (Harris and Bucens 2003). Thirdly, recording of maternal alcohol consumption—a necessary component in diagnosing FASD—is often incomplete or missing altogether in medical records (Burns et al. 2013). A study of paediatricians in Western Australia found that only 23% routinely asked patients about their alcohol use when taking a pregnancy history, and fewer than 5% routinely provided patients with information about the effects of drinking alcohol (Elliott et al. 2006). Fourthly, making a diagnosis in the absence of the facial abnormalities associated with FASD is particularly difficult, as indicators such as growth retardation and central nervous system dysfunction can have other causes besides alcohol exposure (Burns et al. 2013). Finally, clinicians may be poorly informed about FASD and/or unwilling to make a diagnosis for fear of stigmatising mothers and their children. Elliott et al.’s survey of paediatricians in WA (2006) found that only 4.5% considered themselves very prepared for dealing with a patient with FAS. Fewer than one-in-five (18.9%) correctly identified all four essential diagnostic features for FAS. Three-quarters (76.5%) had suspected but not diagnosed FAS, while 12.1% had been convinced of, but not recorded, a diagnosis of FAS. More than two-thirds of paediatricians (69.6%) considered such a diagnosis might be stigmatising. Finally, and perhaps most alarmingly, fewer than half (43.9%) believed that women should abstain from alcohol while pregnant (Elliott et al. 2006).

To date, no national studies have been conducted in Australia using the third and most accurate method—active case ascertainment—to estimate the prevalence of FASD (Reid 2018). The only case ascertainment study conducted to date was initiated in 2009 by two Aboriginal organisations—Marninwarntikura Women’s Resource Centre and Nindilingarri Cultural Health Services—in the Fitzroy Valley region of the western Kimberley in WA. As the Australian Medical Association (AMA) noted in a submission to the recent Senate inquiry into FASD, the absence of population-level data on prevalence of FASD has at least two unfortunate consequences. Firstly, it makes it difficult to identify funding needs or priorities or to measure progress in reducing harms generated by FASD. Secondly, because much of the research on FASD that has been done focuses on Aboriginal communities, it fosters a mistaken notion that FASD is solely an Aboriginal problem (Australian Medical Association 2019).

8.4 Conducting a Community Prevalence Study

The 2009 decision by Aboriginal organisations in Fitzroy Valley to conduct a case ascertainment-based FASD prevalence study arose in the context of the ‘breathing space’ that had been created by the introduction of restrictions on local sales of take-away alcohol in 2007, described in the case study reproduced above as Chap. 6. Box 8.2 contains another extract from the same report, recounting the steps taken in developing a community-based FASD strategy, and the central place of the prevalence study in the strategy.

Box 8.2 Designing a Community-Based Fetal Alcohol Spectrum Disorders (FASD) Strategy

Edited extract from Aboriginal and Torres Strait Islander Social Justice Commissioner 2010 Social Justice Report (2011: 93–105).

FASD has been an issue of concern for Fitzroy Valley residents for some time. It was discussed at a community meeting on alcohol and other drugs in 2004.⁷ However, it took the advent of the alcohol restrictions to unite the communities into taking action.

In October 2008, just over a year after the alcohol restrictions were brought into the Fitzroy Valley, members of the communities gathered to discuss FASD and other alcohol-related problems. The meeting was led by Aboriginal organisations Marninwarntikura and Nindilingarri Cultural Health Services. Community members voiced their concerns that many children and families were suffering from the effects of FASD and Early Life Trauma (ELT). ELT is a term used to describe the environmental factors that can negatively impact on a child’s development. Poor nutrition, neglect, and exposure to violence and stress can all lead to ELT. Meeting participants agreed to a multi-pronged strategy of action to address these challenging issues (Latimer et al. 2010).

In November 2008, a coalition of government agencies, business and community organisations formed a ‘Circle of Friends’. All parties pledged in-principle support to a FASD/ELT strategy and action plan. Below is a diagrammatical representation of the ‘Circle of Friends’ (Fig. 8.1).

Fig. 8.1

A Circle of Friends

All participants in the Circle of Friends are actively involved in the development and implementation of the FASD/ELT Strategy that was endorsed by the FASD leadership team.

The Marulu Project

In November 2008, a draft strategy was developed by the CEO of Marninwarntikura, June Oscar, and Dr James Fitzpatrick, a paediatric trainee serving the communities. The strategy was called Overcoming Fetal Alcohol Spectrum Disorders (FASD) and Early Life Trauma (ELT) in the Fitzroy Valley: a community initiative. This strategy is now described locally as the Marulu Project. Marulu is a Bunuba word meaning ‘precious, worth nurturing’ (Latimer et al. 2010: vi).

Nindilingarri is the head of a leadership team guiding the project. The Marulu Project has a number of areas of focus:

• Prevention—including consulting with the communities to raise awareness of the Marulu Project, education across the communities and working with women who are pregnant to prevent alcohol use.

• Diagnosis—including the development of screening and diagnostic processes.

• Support—including mapping the support services in the Valley and developing a network of carers.

• High level dialogue—including strategic use of media, contributing to scientific discussions on FASD, and raising the profile of FASD through strategic partnerships.

• Build local capacity—including participation in relevant workshops and conferences and capturing the process of the project.

• Focus resources—identify and leverage existing resources, approach government and other funders to secure targeted funding for the strategy, and engage local community resources in FASD prevention, support and diagnosis (Latimer et al. 2010).

Below is a schematic overview outlining the journey in developing the Marulu Project (Fig. 8.2).

Fig. 8.2

Schematic of the Marulu ProjectFootnote

The Marulu project team: M Carter, J Oscar, E Elliott, J Latimer, J Fitzpatrick, M Ferreira, M Kefford.

Nindilingarri uses the Fitzroy Futures Forum meetings to report to the communities, government and businesses on the progress of the Marulu Project (Latimer et al. 2010).

Working with trusted partners

In Fitzroy we bring people in when we identify a problem and a need, rather than people coming in and telling us our problems and our needs. It is about forming strategic partnerships with government and the corporate sector. It is about asking for help but that is strategic and targeted help.⁹

In 2009, the Marulu Project leadership group began discussions with researchers from the George Institute for Global Health (The George Institute) about the possibility of conducting a prevalence study of FASD in the Fitzroy Valley. The rationale for conducting a prevalence study was to understand how many children were affected by FASD and to attract funding and resources to manage these children, and prevent FASD. Funding would only be forthcoming once there was a strong evidence base.¹⁰

The Marulu Project leadership team identified The George Institute as the most appropriate organisation to provide technical and other expertise to the project. The George Institute had previously developed relationships with the communities in producing a documentary, Yajilarra. The documentary told the story of alcohol restrictions in Fitzroy Valley. Yajilarra was a solid foundation for further partnership with The George Institute:

Because of the relationship The George knew about the people they were working with. That is the big difference, it is always the academics that had seen a problem and tell the people ‘we are doing it my way’. This is totally different, here the Aboriginal people said FASD was a problem and we worked with The George Institute on the project.¹¹

The George Institute engaged an expert paediatrician, Professor Elizabeth Elliott from The University of Sydney, to provide clinical expertise on FASD and sought approval from the leadership team for her involvement in the project.¹² The current research team includes Nindilingarri, The George Institute, and the Sydney University Medical School at The University of Sydney. Maureen Carter (community member and CEO of Nindilingarri) leads the team that includes June Oscar (community member and CEO of Marninwarntikura), Professors Jane Latimer (The George Institute) and Elizabeth Elliott (Sydney Medical School, The University of Sydney), Dr Manuela Ferreira (Faculty of Health Sciences, The University of Sydney) and paediatric senior registrar Dr James Fitzpatrick.

Community consent

The prevalence study is known as the Lililwan Project. Lililwan is a Kriol word meaning ‘all the little ones’ (Latimer et al. 2010: vi). The prevalence study focuses on children in the Valley aged seven and eight years. The entire study, from the decision to proceed with it through to actual participation, employs an informed consent process.

The research team was invited to consult with the communities and service providers in the Fitzroy Valley between 19 and 23 October 2009. Members of the consultation team who were not from the Valley undertook cultural awareness training. The consultations were conducted in a range of formats including community forums, planned meetings with key stakeholders and informal meetings. All relevant information about the prevalence study, its aims, methods and possible outcomes was transmitted to the communities. Importantly, a full explanation of the possible risks associated with undertaking this research project was clearly explained. Follow-up consultations were had with the Fitzroy Futures Forum and regional government agencies. This consultation process has been documented in Marulu: The Lililwan Project Fetal Alcohol Spectrum Disorders (FASD) Prevalence Study in the Fitzroy Valley: A Community Consultation, which includes summaries and recommendations from each of the consultation sessions (Latimer et al. 2010).

The consultations showed overwhelming support to proceed with a prevalence study from all stakeholders, including the Aboriginal communities and service providers. The widespread feeling was that this study would be an integral component to addressing FASD in the Valley. The community-led nature of this project and the continuing engagement through public forums like the Fitzroy Futures Forum ensured that the residents were kept up to date and were fully informed about the proposed prevalence study. This was fundamental to obtaining consent to proceed with the FASD prevalence study.¹³

This research project is setting an example to the rest of Australia of how best to approach Indigenous affairs. A process guided by a relationship underpinned by meaningful, respectful engagement and collaboration will always be more effective and successful than one that is not. Harnessing this way of thinking and operating opens a myriad of opportunities to address difficult and sensitive issues in Aboriginal and Torres Strait Islander communities.

Having received informed consent to proceed with the project, the research team set out designing the study. Associate Professor Jane Latimer of The George Institute, described this process:

So then we started to design the study with the community. We would teleconference each week and we would design it a bit more. From our end we had ethics committees to go through.¹⁴

Maureen Carter, CEO of Nindilingarri and community member, outlined her perspective of the project’s development:

We would look at information given to us by The George Institute but we could sit with them to change the words to make it culturally appropriate. We put the research into our context but it still had to fit within the ethical guidelines of The George.¹⁵

The project is designed to incorporate necessary elements of Indigenous culture and knowledge as well as meeting the requirements of Western research ethics standards. For example, the parent/carer questionnaire developed by Professor Elliott and Dr Fitzpatrick was modified extensively following consultations with Fitzroy Valley residents and the Kimberley Interpreting Service to ensure its content and language were culturally appropriate.¹⁶

The Lililwan Project is guided by a set of principles and preconditions that are relevant to each phase of the project. These are:

Principles

• 1. First, do no harm.

• 2. Commit to a process of two-way learning.

• 3. All activity must deliver short and longer term benefits for the communities.

• 4. Informed participation and consent must be ensured through the sharing of information and knowledge.

• 5. All activities must preserve the dignity of participating individuals and communities.

Preconditions

• 1. Clear and broad informed consent from

  • a. the communities broadly

  • b. local service providers.

• 2. Local Control—The Project Leadership Team must be, and perceived to be by the communities as being, in control of the study.

• 3. An appropriate and adequate workforce (Latimer et al. 2010: 17–18).

The project was divided into two discrete stages to ensure that the communities are comfortable with the sensitive process:

• Stage 1. Collection of demographic, prenatal and early childhood data from parents/carers using a diagnostic checklist and review of medical records. This involves interviews with parents/carers including questions on the drinking patterns of mothers during pregnancy and the development patterns of children.

• Stage 2. Health and developmental screening, opportunistic treatment and referral. This includes medical and allied health examinations of all children born in 2002 and 2003 to estimate the prevalence of FASD.

This study will provide an individual assessment of children and estimate the prevalence of FASD in the Valley. The data from the project will stay with the Kimberley Population Health Unit. The study was designed so that it did not simply diagnose children and leave them in limbo. A care plan will be developed for every child with identifiable problems and ensure they are referred for appropriate and ongoing care. The study will also use the principal findings to advocate for better health and education services. The evidence-base generated can be used by governments to develop a targeted service response to FASD in the Fitzroy Valley.¹⁷

Continuing consent in action

Ongoing consent is a precondition of the Lililwan Project. Therefore, all participants in the study are to give their informed consent throughout the life of the project and before any new developments are undertaken.

In April 2010, the research team began Stage 1 of the Lililwan Project. This involved interviews with mothers and carers of seven and eight-year-old children in the Valley. The research team was led by two ‘community navigators’:

We had Aboriginal navigators to help locate the people. These navigators were chosen because of their standing in the community. We had a male and a female navigator, so it was culturally appropriate. Going in with people who know the community meant we gave the researchers information about the families that might be relevant. You know if there had been a loss. The project was done at the pace of the community and that is key. We met with the right significant people in each community first. The researchers were led by the community navigators.¹⁸

The use of the navigators was an essential component of the continuing consent process. Most of the interviews were conducted by the navigators in conjunction with Dr James Fitzpatrick and Ms Meredith Kefford, a volunteer with Indigenous Community Volunteers, who were both well known in the Fitzroy Valley.

Even though Nindilingarri had been given a strong mandate to proceed with the Lililwan Project from the community consultations, obtaining the informed consent from individual families was a fundamental component of Stage 1.

Women are giving you the most sensitive data in the information they provide as part of this research. This information is so incredibly sensitive in relation to terminations of pregnancies, in relation to drug and alcohol use. It is the most sensitive data in their lives. We wanted to make sure no one was coerced in any way.¹⁹

The consent processes were embedded into the fabric of the project. Consent was sought at every step of the project to ensure participants were not being coerced or did not understand what their involvement entailed.

We wanted to make absolutely sure we were not coercing people in any way, shape or form. So we organised for a senior partner from Blake Dawson to travel with us to be an independent expert in consent and made sure he thought the way we were storing the data and gaining consent from people was the best practice we could have and there was nothing more we could do. It meant there was no risk of coercing people.²⁰

When the researchers went out into the communities they would go in and have a barbeque and get introduced to the community by the navigators. With this issue [FASD and drinking alcohol during pregnancy] our people will not talk straight away, they have to get to know you. They have to have time to think about these things before they said yes or no to be involved in the research. We gave them time to think.²¹

As with any research project, the research team had to apply for permission from an identified human research ethics committee to conduct the study and to have the study design, parent information sheet, consent form, questionnaire and clinical assessment process approved.

In the case of the Lililwan Project, this involved not only the University ethics committee (University of Sydney Human Research Ethics Committee) but also the relevant committee in Western Australia (Western Australia Country Health Service Board Research Ethics Committee) and the Western Australian Aboriginal Health Information and Ethics Committee. In addition, all research conducted in the Kimberley must be approved by the Kimberley Research Subcommittee of the Kimberley Aboriginal Health Planning Forum. This committee was established in 2006 to ensure that research conducted in the region that might include Indigenous peoples was coordinated, that the people of the Kimberley would derive the maximum possible benefit from any research conducted there, and that any adverse impact of the research on either the community or its health services would be kept to a minimum.²² Each part of the Liliwan Project will go through this arduous—but absolutely essential and extremely helpful—process.²³

Data collection for Stage 1 was completed by the end of August 2010.

The success of the Lililwan Project so far is testimony to the careful investment in partnership, consultation, negotiation and consent.

So now we have completed Stage 1 and we know that the entire population of children born in 2002 or 2003 across the Valley is approximately 138 children. Of these, we were able to access and contact 132 and 95% of them gave their permission to be interviewed. So we know that the data we will have is representative of the entire population.²⁴

In addition to high participation rates, the research team reports that Stage 1 of the project has produced high-quality data.²⁵

The community driven nature of the Lililwan Project, with consent processes embedded into its fabric, provides strong evidence that, when empowered to do so, Indigenous communities can address their most sensitive and difficult issues.

Postscript

As indicated earlier, the above account was written in 2011. Since then, the Lililwan project has received funding from philanthropic sources, the (then) Australian Government Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA) and the National Health and Medical Research Council (NHMRC Project Grant 1024474). The Stage 2 study was conducted, and results have been reported in several publications including Fitzpatrick et al. (2015). Further information about the project, including links to other publications, is available at the following websites:

• https://www.marulustrategy.com.au/pages/research-and-reports

• https://www.fasdhub.org.au/research-and-publications/research-projects/Lililwan-project-FASD0-prevalence-study/.

The Marulu Strategy is ongoing; it remains the most comprehensive, community-led intervention anywhere in Australia for preventing and managing FASD and providing support to families with FASD-affected children. As the Social Justice Commissioner points out in the extract above, in many respects, it provides a model for other communities.

Among children completing Stage Two of the prevalence study, a diagnosis of FASD was made in 19.4% of cases. As the researchers note, this is comparable to findings from disadvantaged populations in South Africa and elsewhere, but far higher than prevalence levels estimated from other Australian studies that, as we have seen, have relied on passive surveillance methods (Fitzpatrick et al. 2017a). The study also found high levels of neurodevelopmental impairment, with 32% having impairment in three or more domains, including executive function, academic achievement and ADHD/sensory problems. Impairment was found in cases both with and without prenatal alcohol exposure, a finding that the researchers tentatively attributed to two factors: possible under-reporting of prenatal alcohol exposure, and the impact of other stress factors in the community. Notably, evidence of early life trauma was found to be ‘almost universally prevalent’ among study participants (Fitzpatrick et al. 2017a: 123).

The researchers consider the findings likely to be generalisable to other remote communities with similar patterns of alcohol consumption. On a more positive note, they also point out that prevalence of FASD in the Fitzroy Valley among younger children than those taking part in this study may have declined as a result of the restrictions on sales of take-away alcohol introduced under community leadership in 2007.

Apart from marking an important addition to the evidence-base about prevalence of FASD in remote Aboriginal communities, the Lililwan study has at least three other implications that warrant noting. Firstly, it demonstrates that research involving the methodologically rigorous collection of quantitative as well as qualitative data is not necessarily incompatible with respect for Aboriginal culture and Aboriginal ways of knowing, as is sometimes claimed. The key issues, in our view, are the research procedures through which the research is conducted and the relationships linking all of the participants involved in the project, including research subjects, community organisations and the researchers and the organisations with which they are affiliated. In the Lililwan project and the Marulu strategy of which it is part, community organisations have been actively involved in every stage of the project.

Secondly, the Lililwan project and the way in which its findings have been disseminated also demonstrate that ‘bad news’ does not have to be concealed or glossed in order to protect those to whom it refers. A FASD prevalence rate of 19.4% is, by any reckoning, disturbing, but the way in which it has been derived and ‘owned’ by the communities in the Fitzroy Valley has meant that it is not yet another statistic confirming poor Aboriginal health status, but rather evidence of communities having the courage to acknowledge a problem and set about collecting the information needed to address it in a sustainable way. Taking control of a problem in this way is arguably an act of self-empowerment. Elsewhere in this chapter we describe one of the strategies that has subsequently been developed in the Fitzroy Valley for managing challenges generated by FASD.

Finally, the high prevalence of FASD brought to light by the Lililwan project adds weight to the calls by the recent Senate inquiry, the AMA and numerous other bodies for a properly funded national prevalence study using a case ascertainment method (Australian Medical Association (AMA) 2019; The Senate Community Affairs References Committee 2021).

Prevalence of FASD appears to be high in other subpopulations besides Aboriginal people. Popova et al. (2019) conducted an international systematic review and meta-analysis of studies of FASD in five subpopulations: children in care, correctional facilities, special education, specialised clinical populations and Aboriginal peoples. They estimated the prevalence of FASD in these subpopulations as 10–40 times higher than the global prevalence estimate of 7.7 per 1,000 population derived by Lange et al. and cited above (Lange et al. 2017; Popova et al. 2019).

In Australia, the prevalence of FASD in the justice system is unknown. However, a study of young people aged 10 to 17 years 11 months held in Western Australia’s only detention centre found that 36% of study participants had FASD—the highest reported prevalence of FASD in a youth justice setting anywhere in the world (Bower et al. 2018). In this study, participants were clinically assessed by a multidisciplinary team following the Australian Guide to the Diagnosis of FASD (Bower and Elliott 2020). A total of 99 young people completed the assessment (60% of those originally approached to take part), 74% of whom were Aboriginal. All of those diagnosed with FASD were assessed as having neurodevelopmental impairment in three or more domains. Amongst those diagnosed in the study, only two had previously been diagnosed as having FASD. Even in the absence of more comprehensive prevalence data, these findings have significant implications for policing practices, legal processes and sentencing (Elliott and Bower 2019).

8.5 The Unknown Impact of FASD

In the absence of accurate prevalence data, the true impact of FASD in the community is difficult to determine. A study in Alberta, Canada, based on all inpatients, outpatients and practitioner claims on the provincial database from 2003 to 2012 found that the life expectancy at birth of people with FAS was just 34 years—about 42% of that of the general population (Thanh and Jonsson 2016). The leading causes of death were ‘external causes’ including suicide (15%), accidents (14%) and poisoning by illegal drugs or alcohol (7%).

In addition to the neurodevelopmental impairments associated with FASD, people born with FASD are at heightened risk of physical diseases including heart defects, kidney failure, hearing loss, gastroenteritis, pneumonia, bronchitis, epilepsy, sleeplessness, and bone and joint problems, and also at higher risk of dropping out of school, unemployment, homelessness, alcohol and other drug misuse, and involvement with the criminal justice system (Jonsson 2019).

In the remaining sections of this chapter, we look at community-based initiatives by Aboriginal communities and groups focusing on the prevention, diagnosis and support and management of FASD.

8.6 Preventing FASD in Aboriginal Communities

Since the damage wrought by FASD is irreversible, prevention must be a priority in any strategy addressing FASD. While this might sound like stating the obvious, the obvious in this case comes with three important qualifications. The first is that prevention is not simply a matter of providing educational resources and urging pregnant women not to drink alcohol. The roots of FASD in Aboriginal communities run deep, as Lorian Hayes’ analysis, reprinted in Box 8.2, demonstrates. Secondly, because FASD is linked to broader issues, attempts to prevent FASD in Aboriginal communities must be situated in a broader strategy for reducing alcohol-related harms in the community, as the Alice Springs-based Central Australian Aboriginal Congress argued in its submission to the recent Senate Committee inquiry (Central Australian Aboriginal Congress 2019; The Senate Community Affairs References Committee 2021). Pregnant women are unlikely to heed calls to stop drinking if the sources of supply of, and demand for, alcohol around them remain unchanged, and they are pressured by friends and family to drink. Thirdly, strategies for preventing FASD must be led by communities or community groups. This is not to imply that communities on their own can be expected to prevent or manage FASD; on the contrary, addressing FASD, as examples in this section show, requires many kinds of expertise. At the same time, addressing FASD requires genuine community engagement, and that is unlikely to occur unless communities and their agencies have a lead role in defining and prioritising issues and devising interventions. Gonzales et al., writing about American Indian and Alaskan Native communities, argue that two common features of interventions aimed at preventing FASD are, firstly, low engagement by women of childbearing age and their partners and, secondly, limited community input into programs (Gonzales et al. 2021). They call for greater attention to the historical and structural precursors to harmful alcohol use, and greater acknowledgement of the protective powers of indigenous cultures.

In Canada, experts have developed a four-level framework for organising the resources and programs required to prevent FASD. The levels are

• 1. Awareness building and health promotion;

• 2. Conversations about alcohol use with all women of childbearing age, and their partners and networks;

• 3. Specialised support for pregnant women and

• 4. Postpartum support for new mothers (Poole et al. 2016).

Lorian Hayes’ ‘life cycle framework’ for understanding the wellsprings of drinking during pregnancy in an Aboriginal community depicts the complex interplay of factors that give rise to intergenerational FASD. Dr Hayes is a Bidjara woman from central western Queensland who has spent several decades working with women and communities. She situates both early pregnancy and alcohol use within a culture permeated by collective intergenerational trauma. Her account is bleak and confronting, and it is important to be clear that it does not apply to all women (many of whom do not drink alcohol) or all communities. It might even be argued that, given a long history of focusing on Aboriginal ‘problems’, there is nothing to be gained by publishing yet another graphic account of the consequences of alcohol misuse in Aboriginal communities. We believe that in this instance the potential gains from publishing her account are important. Hayes combines Western research frameworks with Aboriginal ways of knowing to show how historical, political and cultural factors intersect in the lived experiences of Aboriginal children and young people today as they navigate the world they have inherited.

Box 8.3 Aboriginal Women, Alcohol and the Road to Fetal Alcohol Spectrum Disorders

Edited extract from Hayes (2012)

The girls don’t drink much; ‘bout the same as the fellas

I am an Aboriginal woman, with traditional connections to the Bidjara people from central western Queensland and extensive experience in working with Aboriginal women who consume alcohol during pregnancy.

During several decades of working in the health field, I have asked myself and others why Aboriginal people drink alcohol at such dangerous levels.

I believe that the historical and political background and the cultural aspects of drinking have been insufficiently considered. There is an entrenched expectation of Aboriginal community members that to drink is an expression of identity and culture.

It is unrealistic to expect that individuals can take responsibility for their own actions outside the context of their cultural environment. Programs aimed at changing individual risky behaviour fail to acknowledge the way in which the person is inextricably tied to the culture in which he or she exists.

In many communities, alcohol use is a familiar and embedded practice that spans generations as well as individual lifetimes, from before birth to death. Its consequences are difficult to escape, whether a given person actually drinks or not (Hayes 1998).

Some years ago, with input from a number of Aboriginal community members, I constructed a framework to assist in understanding the development of identity and the resulting changes of emotions and physical boundaries across the lifespan (Hayes 1998).

Using this framework, I have proposed an expanded view on the use of alcohol in Indigenous communities (Hayes 1998) formulated through interviews and discussions with members of remote, rural and urban Aboriginal communities in Queensland. This was originally done in the context of trying to better understand Fetal Alcohol Spectrum Disorders and Early Life Trauma.

In this essay I use a narrative format to display dialogue, because objectivity of the “interviewer” and distance from the respondents’ responses is not consistent with Aboriginal ways of knowing. Understanding the intersubjectivity between the author as an Aboriginal woman and the people whose input contributed to this report made possible the interactions and insights that follow. The impressions and conclusions should not be rejected on the grounds that the approach varied from more Westernised sociological research methods.

For many Aboriginal women, alcohol, like pregnancy, is a normal part of the life cycle.

During my research, young women and young men spoke honestly about the perceived relationship between alcohol and pregnancy, alcohol and drugs, and alcohol and crime, violence and abuse—all of which they associated with their families, relationships, friends and daily environment.

Within this life cycle the relationship between alcohol and pregnancy was revealed to be more complex than the physical effects of either. Young people strongly confirmed their connection with their toxic social environment and were aware of the hardships and disadvantages that confront them daily. The issues they identified were family breakdown; community disharmony; family and community dysfunction; alcohol and drug addiction; teenage pregnancy; peer pressure; violence within the home and community; unemployment; shame, pain and anger within; a sense of isolation and not belonging; lack of trust and respect from family, friends and peers; the high incidence of rape and sexual abuse; and the lack of opportunities to gain education and training within the community.

My proposed life cycle framework or model broadens the Western approach and integrates with cultural constructionist theories to give a clearer understanding of alcohol use (Hayes 1998).

The following story-lines provide examples of how interview respondents conceptualise their own or others’ health status in terms of historical, cultural and systemic impediments.

Stamping the story on the kids (age 0–2 years)

The early years will shape the life’s journey for many children who were not only exposed to alcohol in utero, but were also born into an environment that was awash with alcohol and violence.

If basic human needs are met through nurturing and responsible care, children will develop hopefulness, cheerfulness, trust, confidence and security. If children do not have caring experiences, they will develop insecurity, a feeling of worthlessness and general mistrust.

Although few individuals remember explicit stories from their lives before the age of 24 months, experiences within this period are generally accepted as having a significant impact on the development of emotional and psychological wellbeing.

The disappearing childhood (age 3–5 years)

It is during the ages of 3–5 years that children begin to retain strong memories that continue to provide background to their emotions in later life. Generally, children develop responsibility for self-sufficiency between the ages of 3 and 5. An important aspect of this is the development of trust. Trust in adults and their ability to ensure one’s safety in a crisis is the earliest form of faith. If caregivers are inconsistent in satisfying a child’s needs, the child will not develop this sense of trust, faith and hope (Erikson 1968).

Children whose needs are not met feel that they have been abandoned by their carers, as depicted in the story below.

Story 1. Small, alone and scared

When one is a tiny little boy and is sent to bed by his mumma, who is drinking noisily in the next room where the music is loud, then suddenly, all becomes very quiet and still. You pull the blankets up over your head and lie very still because you become really scared. Too scared to move. You lay there thinking “Is the bogeyman’s gunna come an get me?” You call out to your mumma and dadda but there is no answer. You suddenly realise that you are all alone in the house. Thoughts wander through your little mind, wondering where is mumma and dadda? Where are they? Why don’t they hear my call? They must know I am scared? What should I do now? Should I stay here or should I try and run to find my nanna’s or auntie’s place? It is very dark outside. I awake to hear a very loud crash and yelling — people fighting. My uncle then comes in and carries me over to my nanna’s house. Here I know that I am safe. There is no reason to be scared anymore (Hayes 2001 ).

Interviewees reported feeling alone as a child, even when surrounded by adults drinking and partying, resulting in the child feeling unimportant as an individual. As these children grew older, they told of becoming more dependent on friends and peers for acceptance; their behaviour mimicking that of the adults around them and the peers for whose attention they aspired. Sometimes they reported an extraordinary sense of isolation related to what they perceived as a breakdown of their cultural identity, as well as the lack of mutual respect between older and younger community members, creating a sense of shame.

The “walk-the-talk” stage (age 6–8 years)

Between the ages of 6 and 8 years, the child develops a sense of responsibility for self-care and care of others. In crisis situations where the adult does not provide an environment of safety, a child may take on the responsibility of care for younger children.

Story 2. The protective older child

As a child who lived in a home where there is lots of violence , bashings and too much grog , because I was the bigger kid I used to get all the smaller kids in a room and we would lock the door and go into the corner and huddle together, we would cover our ears and cry and I would rock to try and silence the noise and screams from my mum asking my dad to stop. I am now in my early twenties and I don’t rock anymore. Loud noises still frighten us kids; we were so scared, so very, very scared. Why did our mum and dad do this to us? We had no one to come and take us away to somewhere safe; it was like nobody cared (Hayes 1998 ).

In addition to the impact on the child, I have observed that when a child takes on a parental role for children younger than him- or herself, including siblings and cousins, this relieves adults of their responsibilities and thus impairs the family’s ability to provide nurturing and responsible care.

Feelings of failure (8–11 years)

During the mid-school-age years (8–11 years), children learn about their successes and failures from interactions within their environment. This can be measured in how strong a power base they have built over the younger children and who they control with financial rewards of lollies, drinks and take-away food. The following story depicts the sense of isolation and alienation this brings from a young age.

Story 3. Shame, failure and alienation

Jodie is four years old and has been outside playing with some older kids. Her sisters told her they had to hurry to school, but Jodie knows that they are going to the flats up the road. She wants to follow them and they scream back at her, “Get home you f... little so-and-so”. Jodie stops in her tracks. She feels intense shame as she looks about to see if anyone has heard. A group of old men sit smoking in a front yard nearby and they show no sign of acknowledgement. Jodie knows they must have heard. She wanders back home to look for breakfast. As she enters the front door she can smell the stale grog from the night before. There is nothing in the kitchen for her to eat. She notices her mother lying quietly on the couch. Her mother mumbles something about a drink and Jodie climbs onto the kitchen bench to put the kettle on. She feels bad for her mother and worse for herself.

I’m clearin’ out” (age 12–13 years).

By the time children reach the youth stage (11–13 years), they begin to mimic the behaviour of adults around them. Then, as young teenagers, they perceive themselves to be (and may be accepted by the community as) true adults.

Story 4. An empty belly

You go to bed quivering with fear and listening to drunks all night. You wake up and there are drunks everywhere, sleeping all around, and some still drinking. You search for food to fill your empty belly before you go to school. Most times there is none. Usually you go to school with an empty belly. You feel tired and you get a pain in your belly from lack of food. You become shy and embarrassed and begin to isolate yourself from others, especially those who have food. You run home at lunchtime hoping that there is some food waiting, but there is never any. When you come home from school, there are drunks still there. You go to bed and the drunks are still there — same old cycle. Eventually, after being exposed to alcohol year after year, you give up and join in, fill your empty belly with grog and become a drunk too (Hayes 2001 ).

The above account depicts the emotions of a child whose basic needs, such as food, are not met. As the child grows older, he or she begins to realise that survival depends on achieving independence.

The cycle continues (alcohol and pregnancy)

The reasons why women continue to drink alcohol while pregnant are varied and complex. The pregnancy itself is a validation of adult status, as is the consumption of alcohol. At the same time, the pregnancy, often at a young age, is an additional determinant of social disadvantage.

Story 5. A vicious cycle

She may have been raped. Especially being young girls, they’re trying to heal their own problems. So they look for the first person to come along, looking for good faces. They drink beers an’ wine, it is cheaper. Except when they really want to party out and look for a man, they get spirits. They get pregnant and then they forget to stop drinking. They have money problems, which leads to drinking, which leads to pregnancy, which leads to pension, which leads to drinking, which leads to more problems, which leads to more drinking, which leads to more pregnancies — then they can’t look after their kids (Hayes 2001 ).

The strategies described in such stories reflect both dependence and independence. Young women feel isolation and a desire to be loved. A man of their own and a baby can provide adult status, along with money gained through either the relationship or through social security payments. If the relationship becomes violent and/or the man is unsupportive, the drinking resumes and the cycle continues. Under these circumstances, the baby’s dependency becomes overwhelming and burdensome.

Story 6. Violence causing harm

I don’t think they know if anything can happen to the baby. Something might happen when they drink if they are pregnant. Drinking alcohol is a way women try to kill their babies. Some young women get drunk and even try to commit suicide , not just because they are pregnant — there is other abuse too. The person drinks alcohol — becoming angry — and then picks a fight with another woman or a man and becomes involved in a fight — killing the baby one time (Hayes 2001 ).

In this example, fetal death removes full responsibility from the mother. A community elder told me that removing fault is common, with the woman claiming she does not remember or that it was beyond her control, as she was drunk. Members of the community will in turn come together to support the young woman go through grief at the loss of her child. Both young women and young men whom I interviewed felt that the practice of drinking alcohol when pregnant is seen as a way to kill the baby, either directly or indirectly (by initiating a cycle of violence in the hope that it will cause a miscarriage). They did not otherwise implicate or acknowledge toxic side effects of the alcohol consumed, and the concept of fetal alcohol syndrome or other fetal alcohol effects was not of concern to them.

A whole range of factors contribute to a cycle in which alcohol is accepted as an inevitable part of life and death. The community does not perceive a special problem with women’s drinking, either in amount or in the drinking patterns, manifestations and toxic side effects. Drinking is the expected community norm.

The girls don’t drink much; ’bout the same as the fellas (quote from a community member)

Being a drinker is not equivalent to being an Aboriginal. When Aboriginal people enter into a drinking cycle, even the unborn child is affected.

If the cycle of drinking in Aboriginal communities is to be broken, a more effective model for health promotion would be to aim towards acknowledging children who are continually exposed to examples of the negative adult behaviour associated with alcohol. It should be designed to enhance skills in developing positive patterns of behaviour for later life and negating the effects of witnessing irresponsible adult behaviour.

At present, little is known about the effectiveness of preventive interventions for FASD in indigenous communities globally. Symons et al. (2018) conducted a systematic review, limited to studies published in English in peer reviewed journals and reporting results of interventions that examined prenatal alcohol exposure and FASD. Nine of the ten studies that met the review’s selection criteria were conducted in the US and involved American Indian and/or Native Alaskan populations. The remaining study was a program developed in the Kimberley region of WA by the Ord Valley Aboriginal Health Service, described below in Sect. 8.6.2 (Bridge 2011). The authors found little evidence that any of the interventions examined were effective in reducing either prenatal alcohol exposure or FASD in the study populations. However, this conclusion was based largely on what the authors considered to be the poor methodological quality of the evaluations rather than the programs themselves (Symons et al. 2018).

The most comprehensive FASD prevention program developed in Australia to date forms part of the Marulu strategy referred to in Box 8.2. One component of the strategy, as we have already seen, was a decision to conduct the first case ascertainment FASD prevalence study to be carried out in Australia. Two other strategic priorities emerged from a series of leadership team meetings and community workshops held around the same time: one, a commitment to create a FASD prevention program through community consultation, education and prevention messaging. The program, led by Nindilingarri Cultural Health Services, delivered health promotion and prevention activities to local communities, schools and local liquor outlets. Activities to raise awareness of drug and alcohol issues in schools included inviting primary school children to write stories about the ways in which alcohol affected people’s lives, with the stories subsequently being used in other prevention activities (Fitzpatrick et al. 2017b). The other priority was to provide support to those living with FASD in families, schools and the justice system. Initiatives that emerged in this area are discussed below in Sect. 8.8.

More recently, the community has begun building on the Lililwan project by creating the Bigiswun Kid Project, aimed at understanding the needs of adolescents affected by FASD by working with participants in the Lililwan cohort when they reach the age of 17–18 years (Marninwarntikura Women’s Resource Centre 2020).

8.6.1 Apunipima Cape York Health Council Fetal Alcohol Syndrome Project (2002–2006)

Another, early example of a community-based attempt to prevent FASD was the Apunipima Cape York Health Council’s Fetal Alcohol Syndrome Project implemented throughout Aboriginal and Torres Strait Islander communities in Cape York, Queensland, between 2002 and 2006 (Apunipima Cape York Health Council 2006). The project was designed to be implemented at three levels: (1) in communities, by raising awareness of the links between alcohol, pregnancy and FASD and increasing the community’s capacity to reduce harmful drinking; (2) among service providers in communities, particularly health service providers, by increasing their awareness and capacity to address FASD and (3) at regional and higher policy-making levels, by increasing awareness of, and resources for, preventing FASD.

Implementation was led by a mobile team of Aboriginal and Torres Strait Islander health workers trained in FASD—‘the grog baby ladies in the blue shirts’, as they reportedly became known (Apunipima Cape York Health Council 2006: 21)—who conducted workshops and small group discussions in communities, utilising a ‘health literacy’ model of health promotion and education. Health literacy has been defined as possession of literacy and numeracy skills and the ability to perform knowledge-based tasks, such as using health information, that are required to make sound health-related decisions (Nutbeam et al. 2017: 902). The project also used dolls that looked like live babies to demonstrate differences between a healthy baby and a baby born to a mother who drank during pregnancy, providing a concrete illustration that could be passed around among workshop participants. The project also established local FAS Action Groups in communities (Apunipima Cape York Health Council 2006). Although the Apunipima FAS project was evaluated, no outcome data have been published. A report on the project concluded that it increased knowledge about FAS and associated disorders and enhanced capacity both at an individual and community level to prevent FAS (Apunipima Cape York Health Council 2006).

8.6.2 Ord Valley Aboriginal Health Service FASD Program

The single Australian study included in Symons et al.’s (2018) systematic review of preventive FASD interventions in Indigenous communities, referred to above, reported on a program initiated in 2008 in the east Kimberley region of Western Australia by the Kununurra-based Ord Valley Aboriginal Health Service (OVAHS) (Bridge 2011). The initial aim of the program was to document drinking patterns among antenatal clients and identify the needs of these women and their families. A 5-point plan was developed targeting five groups, each of which received an intervention tailored for that group. These were

• 1. All Aboriginal antenatal women presenting at OVAHS;

• 2. All Aboriginal women aged 13–45 years in communities served by OVAHS;

• 3. OVAHS staff;

• 4. Local Aboriginal men and

• 5. Local, national and international interest groups and organisations (Bridge 2011).

Over the first 12 months of the FASD program’s operation, 78 pregnant women were assessed, 74 of them more than once. Of these, 84.7% reported consuming alcohol at some point during their pregnancy. However, more than half of the women assessed (56.4%) reported abstaining from alcohol following their first FASD education session, and another 14.1% reported reducing their drinking.

One issue that came to be seen as particularly important during the first 12 months of the program’s operation was the need to increase understanding of contraception among young women. Of the 78 antenatal women assessed during this time, 70.5% of the pregnancies were reported to be unplanned (Bridge 2011). The program’s response is summarised in Box 8.4.

Box 8.4 Alcohol Awareness, Contraception and Preventing FASD

Extract from Bridge (2011: 5)²⁶

Dialogue with young women in the community revealed that their knowledge of puberty, menstruation, pregnancy and contraception varied, with a significant number reporting little knowledge of contraception in particular. Given the incidence of early alcohol use among young women (and its resultant impairment of judgement), and their attitudes and norms around consumption, the program has placed considerable emphasis on the promotion of alcohol awareness, contraception and safe sexual practices as part of all brief interventions. Parental monitoring is also addressed separately. In an effort to encourage safer sex, female OVAHS clinic staff routinely ask female clients about their contraception use. A comprehensive puberty and contraception brief intervention resource and interactive contraception workshop was developed with input gained through OVAHS staff and community consultation with the local Aboriginal adolescent women. In addition, a brief intervention flowchart resource was developed and is used as part of all clinic consultations where appropriate. This opportunistic education is viewed as critical to raising awareness in the community and encouraging higher levels of contraception use.

Another issue was the importance of engaging with men, as the authors explain in Box 8.5.

Box 8.5 The Role of Men in Influencing Maternal Alcohol Choices

Extract from Bridge (2011: 6)²⁷

An additional challenge has been the role of men in the community. In some families, women report that men hold the power base and as such strongly influence the choices made regarding alcohol use in their pregnancies. Through conversation with antenatal clients, a number of women identified pressure from their partners as being significant in determining drinking behaviours during pregnancy. The women reported they would like to stop drinking, but were often pressured to stay with their partners in the ‘drinking circle’ as a show of family loyalty and their commitment and faithfulness to the relationship. Some female clients also report that to remove themselves from this social circle and ‘sit’ with non-drinking family members or friends, or spend time doing activities such as fishing, potentially results in relationship problems, arguments or even violence. The role men play in the decision-making of some clients was not initially anticipated, but it was recognised early on that the success of the program lay in part in the inclusion and education of men.

Overcoming the perception that pregnancy, and in turn prenatal alcohol exposure, was ‘women’s business’ was challenging in the early stages of the OVAHS FASD program. Fortunately, following the request for FASD education by many male elders in the community, along with efforts to include men in program design and resource generation, the involvement of men in the program has greatly increased. Male focused FASD education workshops and outreach brief intervention are now regular activities of the program. To date, 6 male only workshops and 23 mixed gender workshops or presentations have been conducted locally. Like feedback gained from the women, the majority of men indicated that the FASD information was of great value to themselves, their families and the community. Along with the support of the male Social Support Unit staff, the program fosters FASD awareness and promotes fathering responsibility from conception. Men are also encouraged to take an active role in supporting their partners throughout the pregnancy by cutting down or abstaining from alcohol.

8.6.3 Making FASD History: A Multi-site Prevention Program

The success of the Marulu strategy provided a foundation for the Making FASD History multi-site prevention program implemented by Telethon Kids Institute in partnership with community organisations in Alice Springs, NT, and Newcastle, NSW over three years from 2018 to 2020. The aim of the program was to build capacity in local health services to enable them to lead FASD prevention activities into the future. Details of activities conducted in both settings are available at Making FASD History: A multi-site prevention program (telethonkids.org.au). In addition, the Newcastle project has generated a FASD Youth Justice Model of Care Handbook and other resources relating to youth justice and FASD as well as resources for dealing with FASD in the classroom. These too can be accessed at the above link.

Box 8.6 Online FASD Prevention Resources

An extensive range of resources designed to assist in preventing FASD, and suitable for use in Australian Aboriginal communities, is available from several websites. These include the FASD Hub (FASD Hub Australia | FASD Hub) a repository established in 2017 and maintained by a consortium of eight organisations.²⁸ The Telethon Kids Institute also maintains a website focusing on alcohol and pregnancy—Alcohol and Pregnancy & FASD: Research Subsite (telethonkids.org.au)—that provides links to resources for community groups, schools and health professionals. Further information and resources associated with the Marulu strategy in Fitzroy Valley are available at the Marninwarntikura Women’s Resource Centre website MaruluStrategy—Marninwarntikura Fitzroy Women’s Resource Centre (mwrc.com.au).

8.7 Diagnosing FASD in Aboriginal Communities

Diagnosing FASD is a complex, time-consuming and expensive process requiring multi-disciplinary assessments and specialist skills. Even with all specialists available, a single assessment can take several days. In rural and remote areas, if facilities are available at all, diagnosing FASD can take more than two weeks and require travel and extra support staff to arrange appointments and contact with families (The Senate Community Affairs References Committee 2021: 66). The Senate Community Affairs References Committee described access to FASD diagnostic services in Australia as ‘fragmented, poorly-funded and lacking in a whole of government approach’ (The Senate Community Affairs References Committee 2021: 84). As the Committee noted, timely diagnosis is an essential precondition for early intervention addressing specific areas of need. Conversely, delays in diagnosis can lead to an escalation of health and behavioural problems which in turn can generate problems at school and, in some cases, contact with the justice system (Public Health Association Australia 2019).

The National FASD Strategic Action Plan 2018–2028 identified access to screening and diagnostic services in rural and remote locations as a crucial issue, particularly for Indigenous communities, and envisaged primary health care providers as playing a key role in improving access (Commonwealth of Australia (Department of Health) 2018: 21). Two recent initiatives have sought to overcome the barriers of distance and remoteness by embedding FASD assessments in primary health care settings, reserving specialist services for the more complex cases. One is the Yapatjarrathati project in Queensland, a collaborative venture led by Griffith University and Gidgee Healing—an Aboriginal community-controlled health service in north west Queensland—and involving the University of Queensland, Gold Coast Hospital and Health Service, Sunshine Coast Hospital and Health Service, and North West Health.

The Yapatjarrathati project has three components (Shanley et al. 2019). The first involves the co-creation of a culturally sensitive neurodevelopmental assessment process composed of six tiers. The second covers the development of resources for training remote practitioners with varying levels of experience in using the tiered assessment process, and the third involves implementing the process in a remote Aboriginal community and evaluating outcomes (Shanley et al. 2019). The tiered process was co-created by project participants who combined material from FASD literature and practice guidelines with culturally appropriate materials and themes that emerged through ‘yarning circles’. The tiers are

• Tier 1: A dreamtime story, created for the project, explaining the assessment process and support strategies and seeking informed consent to take part.

• Tier 2: A culturally sensitive developmental interview, which includes a measure of alcohol use during pregnancy (AUDIT-C), and physical measurements.

• Tier 3: Administration of the Rapid Neuro-Developmental Assessment (RNDA) (Kahn and Muslima 2012), an assessment that screens for vision and hearing problems and seven of the ten neurodevelopmental domains required to assess FASD.

• Tier 4: Collecting collateral information from a caregiver and teacher about attention, executive functioning, affect regulation and adaptive functioning.

• Tier 5: Collating information for an initial case formulation and commencing planning of evidence-based intervention strategies.

• Tier 6: Where required, ‘drilling down’ to provide more in-depth assessment of any of the ten neurodevelopmental domains by specialists (Shanley et al. 2019).²⁹

Tiers 1–4 are designed to be administered by community-based practitioners, including Aboriginal Health Workers, early childhood educators, youth workers and child safety officers, enabling the assessment process to begin in family homes and schools rather than specialised medical settings, and allowing specialist services to focus on the most severe and/or complex cases.

The Yapatjarrathati project was initially funded under a three-year grant commencing in 2018 and has since received further funding, under which it is expected to be implemented further in partnership with Gidgee Healing.³⁰ To date, an online ‘train the trainer’ course has been developed for instructing people in using the tiered assessment process. Additionally, the tiered assessment process itself has been integrated into a recently redesigned child health check, labelled the ‘Share and Care Check’,³¹ that was co-designed by Gidgee Healing to combine clinical indicators such as neurodevelopmental checks with a holistic, culturally appropriate framework for assessing health and wellbeing (Reid et al. 2022). Through these actions, the team hopes to embed the assessment process into the local primary health care system in a sustainable way that enhances community involvement in preventing and diagnosing FASD.

The second initiative is located in Alice Springs, where Central Australian Aboriginal Congress (CAAC)—an Aboriginal community-controlled health service—in 2018 established a Child and Youth Assessment and Treatment Service (CYATS). The service provides early detection of neurodevelopmental conditions such as FASD, Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD) (Central Australian Aboriginal Congress 2019). The multidisciplinary team consists of a Team Leader, Aboriginal Family Support Worker, two speech pathologists, an occupational therapist and two neuropsychologists. The team conducts specific assessments and multidisciplinary neurodevelopmental assessments for suspected neurodevelopmental disorders in children and young people. The program is based on a partnership with Alice Springs Hospital paediatric and other health and educational agencies (Central Australian Aboriginal Congress 2019).

8.8 Supporting Individuals and Families with FASD in Aboriginal Communities

As an incurable condition, FASD can generate a need for lifelong support; it is not, in other words, a problem experienced solely by children. A situational and gap analysis of research and policies relating to FASD conducted in South Africa found that FASD is associated with a range of problems among adolescents and adults, including mental health problems, disrupted school experience, trouble with the law, inappropriate sexual behaviour, alcohol problems, difficulties in independent living and employment difficulties (Rendall-Mkosi et al. 2008: 53–56). The Senate Community Affairs References Committee, in its recent report, cited evidence that the National Disability Insurance Scheme (NDIS), child protection systems, educational systems and youth justice systems were all inadequately equipped to manage or support people with FASD, causing hardships for carers and, in many cases, inappropriate treatment or management (The Senate Community Affairs References Committee 2021: 87–114). As the Committee also observed, families in remote Aboriginal and Torres Strait Islander communities face additional burdens because of a lack of culturally appropriate services (The Senate Community Affairs References Committee 2021: 115–130).

In recent years, two innovative projects that address some of these challenges have been generated under the Marulu strategy in Fitzroy Valley. One is the Jandu Yani U parent support program, and the other is a program to improve self-regulation and executive function among primary school children.

8.8.1 Parent Support Program: Jandu Yani U

Jandu Yani U—a Bunuba phrase meaning ‘for all families’—arose out of a partnership between Marninwarntikura Women’s Resource Centre (MWRC) and researchers from the University of Sydney and University of Queensland. Its purpose was to adapt an evidence-based family support program known as Triple P (Positive Parenting Program) for use as a community-led intervention in the Fitzroy Valley to help meet the challenges and complex needs associated with bringing up FASD-affected children (Andersson et al. 2019, 2020; Jandu Yani U Project Team 2020). In 2014, the National Health and Medical Research Council (NHMRC) awarded a project grant to fund the implementation and evaluation of the project (Andersson et al. 2020).

The Triple P program, on which Jandu Yani U is based, is a suite of interventions designed to strengthen the knowledge, skills and confidence of parents and thereby reduce behavioural and emotional problems in children and adolescents (Sanders 2008). A Group Triple P variant, developed in consultation with Aboriginal and Torres Strait Islander health staff and trialled in four community health sites in southeast Queensland (Turner et al. 2007), provided the foundation for the Fitzroy Valley initiative. Group Triple P has also been adapted for use by Indigenous families in north-western Ontario, Canada (Houlding et al. 2012) and New Zealand (Keown et al. 2018).

In the Fitzroy Valley, following consultations to ensure that community members understood the range of interventions being offered, and that the interventions accorded with local cultural protocols, 38 local workers—named ‘parent coaches’ by the community—were trained and accredited to deliver the local adaptation of Triple P to all interested parents (rather than just those with FASD-affected children) free of charge. A variant of the program known as Stepping Stones Triple P was also made available for parents of children with developmental disabilities (Andersson et al. 2020).

The program was rolled out between 2017 and 2019, with participating families and caregivers completing questionnaires at baseline, post-program and at follow-up several months later (Andersson et al. 2020). Thirty participating families and caregivers consented to their results being shared. The evaluation found that parent coaches experienced an increase in skill, knowledge, confidence and sense of empowerment. Among participating families, the evaluation reported several benefits for parents and children, including a decrease in the proportion of parents reporting symptoms of anxiety from 56.7% prior to attending Triple P to 35% at follow-up, and a decline in the proportion of parents adopting ‘over-reactive’ parenting practices from 30% prior to attending Triple P to 5% at follow-up (Andersson et al. 2020: 3–5). The evaluators attributed the success of the program to its having been initiated and led by the community, implemented by a team with whom the lead community organisation had an established, trusting relationship, and supported with ongoing mentoring (Andersson et al. 2020). Jandu Yani U has since become an integral component of the programs offered by MWRC and serves as an entry point into engagement with other services. An interactive Positive Parenting booklet is available on the MWRC website at Jandu Yani UProgram—Marulu—Making FASD history (marulustrategy.com.au).

8.8.2 School-Based Support

Children and young people with FASD encounter developmental, social, emotional, behavioural and other difficulties that in turn generate challenges for teachers and caregivers. At present, little is known about how FASD is recognised and managed in Australian school settings (Elliott and Bower 2019). In 2014, faced with a dearth of child health services in the Kimberley region (Dossetor et al. 2019), MWRC compiled a resource book for educators, which was revised in 2018 (Weston and Thomas 2018). The resource, which is available for free download,³² proposes a strengths-based approach to educating and caring for children with FASD, while at the same time insisting on the importance of grounding strategies in an appreciation of the nature and effects of intergenerational trauma. It proposes a number of principles for interacting with children with FASD as well as classroom strategies for supporting children’s cognitive and communication development, as well as behavioural, emotional and social development (Weston and Thomas 2018).

Another initiative generated under the Marulu Strategy is a trial of a school-based program designed to improve self-regulation among children in the Fitzroy Valley. The program was developed by a team of researchers in consultation with community members and Elders in response to community concerns that disruptive behaviour by some children—resulting in some cases from FASD—was harming learning outcomes (Wagner et al. 2018). Because of their remote location, neither schools nor families had ready access to paediatric services. The program adapted for the trial is known as the Alert program, and is designed to teach children about self-regulation by using the analogy of a car engine with its various gears corresponding to arousal states (Wagner et al. 2018). Following the successful implementation of a pilot program in one Fitzroy Valley school, the Alert program was rolled out as a self-controlled cluster randomised trial in eight schools (Wagner et al. 2019, 2020). Teachers received training to deliver eight one-hour lessons over eight weeks. Student outcomes were measured by both teachers’ and parents’ ratings of students’ behavioural, emotional and cognitive regulation. No significant improvements were found in teachers’ ratings, however parents’ ratings recorded statistically significant improvements in executive functioning and behaviour (Wagner et al. 2020). The researchers describe the study as a useful first step in developing appropriate and effective school-based support for developmentally impaired students (Wagner et al. 2020).

8.9 Conclusions

Despite the attention that has been paid to FASD in Australia over the past two decades, it remains a major source of neurodevelopmental impairment throughout the community, the consequences of which can be seen not only in the families directly affected, but in health, education, child protection, youth and criminal justice systems. Some of these consequences, and the steps being taken to address them, are touched on above.

FASD is likely to be more prevalent in some Aboriginal communities than in the wider population, although the continuing absence of a national case ascertainment prevalence study makes it impossible to judge just how much more prevalent. Aboriginal communities, service providers and other agencies have taken a lead in developing innovative programs for preventing and supporting those with FASD. While much remains to be learned about what works under what circumstances, it is possible to identify a number of principles for effective FASD strategies. These are

• Community-led partnerships bringing together community groups, service providers and researchers;

• Approaches for addressing FASD that

  • Are embedded in broader strategies for reducing alcohol-related harm, including effective controls on alcohol availability;

  • Address social and cultural determinants of health as well as FASD itself and

  • Cover prevention, diagnosis and support.

• Adequate, consistent and culturally appropriate support—both in funding, professional services and enabling legislation—from governments.

Recent inquiries into FASD in Australia have shown that current services, legislation and funding are all inadequate for meeting identified needs in both Aboriginal and non-Aboriginal settings. The need in rural and remote Aboriginal communities is particularly acute.