Fetal alcohol spectrum disorder

Clinical guidelines

• FASD diagnostic guidelines
• University of Sydney: Guidelines for the treatment of alcohol problems (includes FLAGS brief intervention model) 
• National Drug and Alcohol Research Centre, University of NSW: Supporting pregnant women who use alcohol or other drugs: A guide for primary health care professionals 
• NSW Health: Health workers guide to yarning about alcohol and pregnancy 
• Northern Territory Government, Remote Alcohol and Other Drugs Workforce Program and Menzies School of Health Research: Yarning about alcohol and pregnancy 
• Medicare Benefit Schedule billing information

Training resources

• National Aboriginal Community Controlled Health Organisation (NACCHO): Strong Born Campaign
• FASD Hub eLearning modules 
• Drug and Alcohol Office Western Australia (WA): ‘Strong Spirit Strong Future: Promoting healthy women and pregnancies’, a culturally secure training and education resource for health professionals (WA only); for training, email AOD.training@mhc.wa.gov.au

Supporting conversations and brief interventions

• Strong Born: health professionals booklet 
• NSW Department of Health: Health workers guide to yarning about alcohol and pregnancy 
• Foundation for Alcohol Research and Education

Validated screening tools for child development and social and emotional wellbeing

• Department of Health: ‘Developmental surveillance and health monitoring’, National framework for universal child and family health services
• Video on ASQ-TRAK 
• Royal Children’s Hospital Melbourne, Centre for Community Health: Parents’ Evaluation of Developmental Status (PEDS)

Assessing child developmental milestones (0–5 years)

• Centers for Disease Control and Prevention (CDC) milestone tracker (application for IOS to assess developmental milestones in children aged 2 months – 5 years) 
• Queensland Health: ‘Red flags’ early identification guide (for children aged 0–5 years; developed by Queensland Health, adapted by the Central Queensland Hospital and Health Service) 

National Disability Insurance Scheme (NDIS) links

• Children with developmental delay 
• Eligibility and medical conditions FAQ

Community resources

• National Organisation for FASD Australia (NOFASD)
• NOFASD support and resource hub for parents, carers and families
• NOFASD Helpline 1800 860 613
• FASD Hub Australia
• Every moment matters resource hub (https://everymomentmatters.org.au/)
• Learning with FASD
• Early Childhood Australia: Through different eyes: Understanding young children living with fetal alcohol spectrum disorder 

Background

FASD includes a range of cognitive, behavioural and physical impairments that can occur due to prenatal alcohol exposure; thus, the primary prevention of FASD is prevention of prenatal exposure to alcohol. Although alcohol is toxic to all fetal cells and first trimester exposure may cause structural defects of the kidneys, heart, lungs, eyes, ears, skin and musculoskeletal system, the developing brain is particularly sensitive to alcohol throughout pregnancy.^23,51 FASD is a leading, preventable cause of neurodevelopmental disability and intellectual disability, and has significant lifelong health and social impacts.^1–4 Alcohol exposure at any time during pregnancy may damage the developing fetal central nervous system.⁵² In FASD, this results in severe and pervasive abnormalities. By definition, a diagnosis of FASD requires severe impairment in three or more domains of central nervous system structure and/or function, with or without characteristic facial features.³ Impairments may vary across the life course and include impairments in behaviour and neurocognitive functioning (most commonly attention, language, executive function), as well as difficulties in adaptive functioning or handling the demands and activities of daily life.^53,54

The neurodevelopmental impairments characteristic of FASD can lead to significant social, emotional and occupational difficulties.^55–58 In a study of children residing in remote WA communities, teachers reported higher rates of problematic behaviour in children with FASD compared with children without FASD.⁵⁹ In that study, teachers were blinded to reports of prenatal alcohol exposure and FASD diagnoses. However, the teachers were significantly more likely to report that children with FASD had academic failure, attention problems and or talked about suicide than those without FASD.⁵⁹ Recent research in Canada indicates individuals with FASD experience elevated rates of suicidal ideation and attempted suicide if they had trauma histories and impaired mood regulation.⁶⁰ Individuals with FASD are at high risk of disrupted education,²³ mental health problems and substance abuse,^23,47,60 as well as engagement in the child welfare and justice systems.^8,9,23,44,47

The impacts of FASD continue across the lifespan into adulthood, and development of a diagnostic approach that includes the identification and assessment of cognitive disability in adults is needed. It is critical that FASD diagnostic services be extended beyond the paediatric population. Interventions and support for individuals with FASD should also be made available across the lifespan, with specific focused responses to the needs of children, adolescents and adults, recognising the developmental needs in each of these phases of life. It is critical to attend to the environment where the individual with FASD lives, to provide support to those providing care and to avoid stigmatisation. In addition, interventions should focus on the brain-based nature of impairments, involve families, take a strengths-based approach and be culturally secure.⁴⁵

Alcohol use in pregnancy

Alcohol consumption is common among Australian women, including women who may become pregnant. Maternal alcohol use contributes to negative outcomes for children, such as FASD, because alcohol easily crosses the placenta and is a known teratogen.^3,59 National survey data suggest that approximately 50–60% of Australian women drink in pregnancy.^5,6 Most pregnant women report ceasing drinking alcohol once they find out they are pregnant. However, one in four continue to drink even once they know they are pregnant. Of those who continue to drink, 96% report drinking one to two standard drinks on a typical drinking occasion.⁵ Higher doses of alcohol on frequent occasions constitute higher risk, but the message that ‘no alcohol is best’ during pregnancy is noted in both the Australian guide to the diagnosis of FASD and the National Health and Medical Research Council’s Australian guidelines to reduce health risks from drinking alcohol in recognition that risk, although difficult to predict, exists with a range of doses and FASD is preventable.^3,7

Although data from a large national survey indicate that only 20% of Aboriginal and Torres Strait Islander women drink alcohol in pregnancy, a greater proportion of Aboriginal and Torres Strait Islander women than non-Indigenous Australian women have been reported to drink alcohol at high-risk levels.⁵ The prevalence of alcohol use in pregnancy varies across communities.¹³ Due to the persistent disadvantage experienced by Aboriginal and Torres Strait Islander people in Australia, the risks for poor social outcomes for Aboriginal and Torres Strait Islander versus non-Indigenous children is higher and increased support should be provided to prevent prenatal alcohol exposure.³² The Marulu Strategy (meaning ‘precious, worth nurturing’) was a community-led response to address the high prevalence of alcohol use and FASD.¹⁰ The strategy, which has successfully supported a reduction in alcohol consumption in pregnancy, has a broad range of approaches, including raising community awareness and education programs, health promotion, training and resources for health and education professionals, research and family and parenting support.^10–13

Screening for alcohol use prior to conception and in pregnancy, offering accurate information about the harms of alcohol use in pregnancy and providing appropriate intervention or referral to a specialist alcohol treatment service are important strategies to prevent FASD.¹⁵ Screening for alcohol use during pregnancy can be embedded into midwifery services in local communities in addition to GP-offered services. It is critical to recognise that alcohol use in pregnancy can contribute to significant lifelong disability and efforts at prevention are crucial. Although most Australian women (63.6%) are aware of the existence of Australian alcohol guidelines for pregnancy, almost 22% could not identify the recommendation that no alcohol use during pregnancy is best.⁵⁹ The Australian guide to the diagnosis of FASD states there is no known safe threshold for alcohol consumption during pregnancy.³ Increasing awareness of the harm of alcohol in pregnancy and of FASD within communities is a critical role for primary healthcare. It is important for primary care providers to assess maternal alcohol intake and to quantify this using tools such as AUDIT-C.³

Diagnosis and early intervention are critical to understanding the affected individual’s impairment and their distinct needs, and a diagnosis provides an explanation of the cause of their problems, diminishing blame and stigma.^62,63 Understanding FASD as a disability can facilitate acceptance of impairments by individuals and their carers and motivate responsibility for ongoing support in families and service providers.^,64,65 GPs can play a key role in developmental tracking and early identification of behavioural and developmental concerns that families raise, and recognise and offer support to families in the struggles they are experiencing. If a child is suspected of having FASD, GPs can provide support by making referrals to relevant services, including developmental paediatricians and/or diagnostic services, provide referrals to early intervention services and provide information on the NDIS. Further, GPs can undertake training on FASD including online training (see Useful resources).

Making a diagnosis of FASD

Diagnostic terminology for FASD has evolved over time, with categories including fetal alcohol syndrome, partial fetal alcohol syndrome and neurodevelopmental disorder-alcohol exposed being used previously.⁵⁵ In 2016, the Australian Government endorsed the Australian guide to the diagnosis of FASD³ (see Useful resources).

The diagnostic terminology has been simplified to include two diagnostic categories, namely FASD with or without three sentinel facial features (short palpebral fissures, smooth philtrum, thin upper lip). Severe impairment (scoring two or more standard deviations below the mean or less than the third percentile on standardised assessments) in at least three neurodevelopmental domains (see Table 1) is necessary for a diagnosis. Generally, confirmed prenatal alcohol exposure is required to make a diagnosis. However, when all three sentinel facial features are present, along with severe neurodevelopmental impairment, a diagnosis may be made without confirmation of prenatal alcohol exposure (Table 1). Importantly, an affected individual may not have sentinel facial features but may still experience severe functional limitations and meet the criteria for FASD.

Making a diagnosis of FASD requires a multidisciplinary approach and specialist assessment.^3,66 As yet, there is no specific biomarker for prenatal alcohol exposure, and history and examination are of importance to ascertain exposure risk to the child or adult, and to consider or exclude alternative exposures or comorbid diagnoses.^67–69 Neurocognitive profiles in FASD often overlap with ADHD, autism spectrum disorder, speech and language disorders, mental health disorders, conduct disorder, behavioural problems and oppositional defiant disorder.^70–72 FASD is often diagnosed in the context of other risk factors, and differentiating the relative impact of these is complex and difficult. Some diagnoses, such as ADHD, intellectual disability, conduct disorder or autism spectrum disorder, may occur with, or be due to, prenatal alcohol exposure.^47,70,72 Early life trauma or neglect, and some genetic abnormalities, are associated with behavioural and cognitive impairments, and acquired brain injury from trauma, infection or metabolic conditions may present a similar neurodevelopmental profile to that seen in FASD.^67–69 Clinically, a diagnosis of FASD provides critical information about the neurocognitive profile of the individual, and it has been reported that executive functioning is commonly impaired (79.4%), sleep disturbance is a significant problem (61%) and ADHD a common comorbid condition (41.7%).²⁴ Conditions such as sleep disturbance and ADHD can be treated but, if FASD is not recognised, support and treatment may not be effective.

Groups at high risk of missed FASD diagnosis include children in foster or adoptive care⁷³ and youth who have come into contact with the law.^8,44,48 These children and young people are more likely to experience high levels of adverse childhood experiences (ACEs) and other life stressors, such as involvement in the child protection and justice systems, increased exposure to alcohol and substance use in the home, exposure to family abuse and violence, risk of child maltreatment and neglect, homelessness and disengagement from school.⁴⁸ Increased ACEs and the associated trauma are contributing factors to high-risk health behaviours and co-morbidities, including substance use and suicide risk..^48,74 From a clinical perspective, it is crucial to be aware of the impact of ACEs on vulnerable youth and to recognise the contribution of ACEs to comorbidities and potentially negative outcomes for children and youth with FASD who have trauma histories.⁴⁸

In Australia, the child protection and justice systems are key sources of referral for FASD screening and diagnosis.^24,48 Due to the significant language impairments experienced by those with FASD, assessment prior to sentencing is important so that language limitations can be accommodated in court processes.⁷⁵ The first Australian study to estimate the prevalence of FASD among youth in detention occurred at Banksia Hill in WA from 2015 to 2016.⁹ Of the 99 youth in that study in custody, 36% were diagnosed with FASD. Most study participants were Aboriginal (74%), and their lives were entrenched in the youth criminal justice system.⁹ It was noted that 28% of participants had experienced high-level prenatal alcohol exposure., Of those diagnosed with FASD (36%) over half had severe impairment in at least three neurodevelopmental domains including significant problems in academic performance (86% of young people diagnosed with FASD), attention (72%), executive functioning (78%), language (69%), memory impairment (56%), motor skills (50%) and cognition (36%).⁹ This research has been critical in drawing attention to the experiences of youth (aged 10–18 years) involved in the justice system and highlights the critical need for the development of a screening tool for use with young people entering detention.^9,76

A consistent model of care for FASD does not currently exist in Australia. There is limited access to specialist FASD diagnostic clinics, but critical literature suggests local community-based behavioural and developmental assessment services could, with appropriate supports and training, be embedded in primary health.^17,74 Doctors are often not trained in making a FASD diagnosis, and there may be concerns among clinicians that a label of FASD will stigmatise the mother and affected individual.^74,75 Clinicians may also believe there is little that can be done to alleviate the effects of FASD. For these reasons, there may be a reluctance to ask about prenatal alcohol exposure.⁷⁶

Special consideration is needed for adolescents and adults living with FASD. FASD often goes underdetected and under-recognised in adults, and it is possible that those who have previously received a diagnosis such as ADHD or intellectual disability may actually have FASD. If an adult is suspected of having a disability that has gone unrecognised, and FASD is considered to be a potential causal factor, taking a thorough family social history, including questions about the use of alcohol by parents, may provide insights into the nature of the problem. Adults with FASD often have experienced trouble with the law and incarceration, have social problems in relationships and have financial and housing insecurity. The information gathered in a social history can indicate whether a clinician should consider whether prenatal alcohol exposure is a factor in the current presentation of the individual. In the adult population, there may be less opportunity for diagnosis due to a number of factors, including limited health professionals diagnosing in adulthood, changes in physical characteristics that occur with age and difficulties obtaining information about the pregnancy.^3,13,78,81

Given the complexity and variability in presentation of FASD, the diagnostic process requires a multidisciplinary team, ideally including a paediatrician, neuropsychologist, occupational therapist, speech and language pathologist and social worker.^3,66,82 This is not always feasible due to a lack of services, especially in regional and remote areas of Australia.¹⁸ Therefore, a more streamlined approach to diagnosis, for example by a paediatrician and neuropsychologist, may be adopted. The diagnostic team can also vary depending on age and setting.^3,18 In younger children (aged <5 years), a diagnosis may be made by a paediatrician conducting developmental testing. In later childhood, adolescence and adulthood, a medical practitioner, neuropsychologist and speech and language pathologist may constitute an appropriate diagnostic team.^18,82,83 Because diagnosis in adulthood is not readily available in Australia, a paediatrician with specialist expertise in FASD may support the diagnostic team. When mental health disorders are suspected, confirmation of these diagnoses by consultation with a psychiatrist may be required.

In Aboriginal and Torres Strait Islander communities where English is not a first language, assessments need to be minimally biased by language (eg using non-verbal cognitive assessments and working with interpreters and cultural consultants). The use of tools without cultural biases are also important in assessment.^3,18 The assessment process includes comprehensive history taking to consider or exclude other exposures (prenatal or postnatal), and consideration of and investigation for other risk factors (eg trauma, illness, structural central nervous system abnormality, genetic or metabolic conditions, anaemia, thyroid deficiency).^3,83 In remote or regional settings, GPs may liaise with paediatricians via telehealth to seek advice on screening, diagnosis and management.¹⁸

Multiple services with expertise in FASD diagnosis and training now operate within Australian to increase access to specialist diagnostic services.⁸¹ GPs can refer to a paediatrician and multidisciplinary team for formal assessment of neurodevelopment or FASD. NOFASD and the FASD Hub Australia both maintain up-to-date directories of FASD-informed specialists and diagnostic clinics and can be contacted for referral options through their websites. Since March 2023, Services Australia made new MBS items available for children with complex neurodevelopmental disabilities and included FASD as an eligible disability specific to patients under the age of 25 years. (See Useful resources for Medicare Benefit Schedule billing information for complex neurodevelopmental disorder and eligible disability.)

Neurodevelopmental profiles of individuals with FASD may change over time or become more pronounced at key transition points during development (eg when entering school or the workforce), and reassessment by relevant services over the life course is often required. Early intervention aims to improve neurodevelopment and functional outcomes and reduce social and mental health problems later in life.^20,25,45 A coordinated approach to assessment and diagnosis will facilitate the selection of appropriate interventions. A process of referral, assessment, intervention, review and reassessment with ongoing case coordination is recommended.⁴⁵ Models of care for FASD screening, referral and diagnosis have been developed in some regions, but assessment, diagnosis and support services remain sparse.^,18,20,25,85 In terms of outreach for families and the community, NOFASD provides a confidential helpline that is available seven days a week. In 2017, the Australian Government committed funding to increase FASD diagnostic capacity nationally, and a consultation process was initiated to develop the Australian FASD Action Plan 2018–2028.

Primary prevention: Strategies to avoid alcohol exposure and reduce alcohol use in pregnancy

Prevention activities should be individually targeted to women and their partners prior to conception and in pregnancy, and for women with alcohol dependency.^14,81 It is important to determine pregnancy intention and alcohol exposure risk⁸⁶ (see Chapter 5.1: Preconception care). Studies have indicated that women are more likely to drink alcohol during pregnancy when living with a partner who consumes alcohol.⁸⁷ Therefore, the role of partners and family deserves considerable attention in preventive management. Various primary prevention strategies have been adopted in Aboriginal and Torres Strait Islander communities and primary healthcare settings that take a whole-of-community approach to prevent risky drinking, such as the FLAGS (Feedback, Listen, Advice, Goals, Strategies) framework (see Box 1). (See also Chapter 2: Healthy living and health risks. Alcohol.) The GP can play a key role in prevention by directly asking about alcohol use prior to conception and during pregnancy and following up with appropriate referrals for support as needed. For example, the engagement of a midwife or community nurse early on can have a positive influence in supporting the mother’s health and provide support around harm reduction during pregnancy.

Prevention strategies aimed at the community can target school and family education programs, men’s programs, women’s support groups and youth programs. Messaging and strategies can include information about alcohol use and pregnancy, improving and increasing access to antenatal care, the provision of alternative activities to drinking alcohol, warning labels on alcohol and restricting access to the supply of alcohol.⁸⁸

Primary prevention: Early detection and screening for risky drinking

In the primary care setting, screening to assess both the quantity and frequency of alcohol use in routine interviews with all women who may become pregnant is important.^16,17 This includes women who may become pregnant unintentionally, as well as women planning a pregnancy.^8,9 These conversations and screening activities need to be conducted with sensitivity, recognising the risk of shaming and stigmatising. It is critical to recognise alcohol use during pregnancy and the potential negative biological and social impacts for children may lead to involvement with child protection services.³⁴ There is a strong association between smoking and alcohol use during pregnancy.^89–91 There is also a strong association between women with no previous children who have an unplanned pregnancy and binge drinking, particularly in the first trimester.⁹¹ Concerns regarding high levels of alcohol consumption among women in Australia and unplanned pregnancies strongly suggest that unintentional alcohol exposures occur. Women who had their first binge-drinking episode prior to age 18 years were reported to more likely continue to have binge-drinking episodes throughout pregnancy. Appropriate history taking and screening tools to identify those at risk of harm from alcohol can be used to identify these concerns.⁹¹ AUDIT-C is a valid screening tool suitable for primary healthcare settings, with high sensitivity and specificity for identifying harmful drinking; however, but other screening tools are also available^29,32,33 (see Chapter 2: Healthy living and health risks, Alcohol).

Primary prevention: The Strong Born Campaign

In 2023, NACCHO launched the Strong Born Campaign with the key message ‘Pregnancy and grog don’t mix’, recognising that healthy pregnancy supports healthy community.^17,30 Strong Born represents a grassroots campaign grounded in Aboriginal cultural approaches related to health promotion and harm reduction associated with alcohol use and pregnancy. A key goal is to create awareness and spark yarning about alcohol use and pregnancy across Australia from remote to urban communities. A key strategy of Strong Born is to provide local grants to primarily remote and rural communities to develop projects related to FASD prevention, as well as supporting people living with this disability. Easily downloadable resources for health practitioners and kits for communities and Aboriginal and Torres Strait Islander health services are available to promote knowledge and awareness of FASD. This is a first-of-its-kind national campaign for Aboriginal and Torres Strait Islander people and is intended to promote health and wellbeing in communities, to engage in critical dialogues and to create community-grounded, locally relevant responses.

Primary prevention: Reducing harm

Those identified at risk of harm from alcohol should be provided with appropriate information about the specific risks of alcohol use in pregnancy and while breastfeeding. Contraceptive advice to support intentional pregnancy and reduce unplanned pregnancy should also be offered (refer to Chapter 7: The health of young people, Sexual and reproductive health).^,15 The use of brief intervention techniques by health professionals may be effective at reducing risky drinking when it is identified and where dependency is not yet apparent (refer to Chapter 2: Healthy living and health risks, Alcohol). Where dependency is identified and when available, referral to specialist addiction services focusing on more intensive treatment may be considered.^14,15,31

There is good evidence for the use of brief interventions to reduce alcohol consumption in the general population.³¹ However, in Australia there have been limited studies of screening and brief intervention for women who are pregnant and use alcohol.^36,78,90 One study indicated that two-thirds of Australian women reported their use of alcohol was not assessed at their first antenatal visit, suggesting that recommended care, including advice and referral, is not regularly occurring and suggested guidelines around alcohol use and pregnancy should be routinely and universally applied, including the use of tools such as the AUDIT-C for assessment.⁹⁰

International studies examining the effect of brief alcohol interventions generally find reduced drinking and improved outcomes for pregnant women.^37,38,91 For example, a cluster randomised trial in the US found that women receiving brief interventions were five-fold more likely to report abstinence by their third trimester than women who only received screening.³⁷ For the women who received brief interventions, the occurrence of fetal death was also much lower.³⁷ Studies also show pregnant women in control groups (who receive screening, but not brief intervention) report reducing their alcohol consumption.^37,38,91 These findings may indicate that for some women screening can heighten awareness of the consequences of drinking alcohol and may impact reduction in reported consumption.^42,43
Reporting of alcohol use at the time of pregnancy is likely to be associated with feelings of guilt or shame and therefore needs to be addressed with sensitivity by practitioners.⁹² Health professionals should understand and acknowledge how colonisation, dispossession and the forced removal of children have affected the health of Aboriginal and Torres Strait Islander people over successive generations.³⁶ Aboriginal and Torres Strait Islander women may not disclose alcohol use to health professionals due to fear of intervention by government agencies, particularly child protection services.⁹³ A culturally sensitive and supportive ‘no blame, no shame’ approach to both screening for alcohol use in pregnancy and to taking a child development history of prenatal exposures should be adopted. Individuals with FASD who have substance use problems may face significant barriers to accessing substance use treatment and care, and therefore be at risk of having alcohol-exposed pregnancies. Awareness of the cognitive and behavioural challenges faced by individuals with FASD will enable support programs to be tailored to individual needs. For example, it is important for service providers and health professionals to recognise that non-adherence to care plans may be an effect of FASD, and modifications or accommodations in programs will likely need to be made.²⁶

Resources are available to guide practitioners to ask the patient about alcohol sensitively and appropriately. These resources include the Strong Born Health Professionals Booklet and the FLAGS brief intervention model^27,28(see Box 1 and Useful resources).

Secondary Prevention: Therapy and support for those diagnosed with FASD

Early diagnosis or practitioner awareness of prenatal alcohol exposure, along with an understanding of neuropsychological deficits before six years of age, is an important factor associated with improved long-term outcomes for individuals with FASD.^18,21–23 Interventions for FASD include pharmacological treatments, caregiver support programs, language and educational interventions, social skills development and behavioural strategies. Systematic reviews of the effects of these interventions are inconclusive due to problems with inadequate study designs, a small number of studies and sample sizes used and lack of long-term follow-up data on outcomes.^24,25

Although the evidence base is limited and largely restricted to school-aged children, interventions targeting self-regulation and attentional control in early to middle childhood have shown improvements in neuropsychological functioning in children affected by FASD. Additional caregiver reports of behaviour suggest that neurocognitive rehabilitation is a promising intervention for children.^94–96 The Alert Program®, which focuses on self-regulation skills by teaching children to manage their arousal levels, has recently been piloted for feasibility in remote WA schools.^20,97 Future evaluation of this program may provide evidence about the efficacy of self-regulation interventions in Aboriginal communities where the prevalence of FASD among children is a major concern.²⁰
Interventions addressing social skill deficits have demonstrated some effectiveness.²⁵ FASD-specific studies evaluating Children’s Friendship Training, a parent-assisted social skills program for primary school children, found improved social skills compared with a control group after the intervention.^20,98–100 Strategies designed to help caregivers improve parenting skills and manage challenging behaviours in children have been found to decrease caregiver stress and improve coping skills.²⁵ An evaluation of Families Moving Forward, a parenting program developed in the US for parents of children with FASD, found significant improvement in parenting self-efficacy and in parents’ reports of children’s behaviour.¹⁰¹

Tertiary prevention: Treatment and management of FASD

Australia has few FASD-specific therapy programs or providers, but there are existing mainstream behavioural and developmental therapy programs (eg those targeting ADHD, sensory processing issues, behavioural dysregulation and language impairment) that are appropriate for the domain-specific impairments commonly seen in FASD. However, the inclusion of FASD psychoeducation regarding the brain-based (versus behavioural) nature of impairment in FASD is important. A focus on making accommodations (scaffolding in the learning environment) and tailoring therapy to the cognitive level of those affected is likely to increase the efficacy of any therapy approach.⁴⁵ Living independently is a challenge for adults with FASD; therefore, supported living arrangements, modifications to workforce training and ongoing vocational support may be required.^23,79

Given the overlap in behavioural symptoms between FASD and ADHD, and in the absence of FASD-specific therapies, drug treatments for FASD have largely focused on stimulant medications. Studies examining the effects of stimulant medications on ADHD symptoms in children with FASD have shown improvements in symptoms of hyperactivity, but not in attention.²⁶ Medication should be tailored to the needs of the individual and be compliant with prescribing stimulant medicine guidelines. Further, medications should be part of a broader multimodal treatment plan that includes educational and psychological interventions, and specialist consultation is recommended.⁴⁹ Specialist advice should be sought on medication treatment in FASD, because symptoms of inattention and hyperactivity may co-exist with anxiety or behavioural dysregulation, and a more nuanced treatment approach may be needed.

Overall, successful outcomes are more likely when interventions supporting both the individual with FASD and family/carers are implemented alongside each other. Integrating interventions into existing systems, such as local and early childhood intervention services, school-based education and the regular home environment, has been associated with success.¹⁰³ A number of factors may influence access to services and the delivery of services,⁴⁵ including language and cultural differences, challenges of service delivery in remote communities and understanding lived histories, cultural dislocation and the impact of intergenerational trauma for Aboriginal and Torres Strait Islander peoples in Australia.^46,104 The cultural beliefs of Aboriginal and Torres Strait Islander peoples should be explored in standard practice so that erroneous assumptions are not made by practitioners.¹⁰⁵ Consulting with local communities from the outset, and focusing on community capacity building, is likely to engage affected individuals and families more effectively ¹⁶

FASD is recognised under the NDIS as a congenital condition, and a diagnosis of FASD should prompt an application to the scheme. Given the variability of impairment across the FASD spectrum, the NDIS will require information on an individual’s specific functional impairments across domains, including developmental delay, mobility, communication, socialising, learning, self-care and self-management (see Useful resources for NDIS links).