Supporting children living with fetal alcohol spectrum disorders: Practice principles
Sara McLean, Stewart McDougall, Vicki Russell
Fetal alcohol spectrum disorders (FASD) is a non-diagnostic umbrella term that is used to cover the full range of possible birth defects and developmental issues that can be caused by prenatal exposure to alcohol. This paper describes some of these consequences for children's development and may be useful for practitioners working with children and families where alcohol consumption is of concern. It may be of interest to practitioners and caregivers who support children with challenging behaviour and where prenatal alcohol exposure may be suspected. It outlines some principles for supporting children and families affected by fetal alcohol spectrum disorders.
Maternal alcohol consumption during pregnancy is linked to a range of adverse outcomes for the unborn child. These are included under the umbrella term fetal alcohol spectrum disorders (FASD), a term that reflects the broad range of physical, cognitive, developmental and behavioural effects that prenatal alcohol exposure can have (Drug Education Network, 2011; Sokol, Delany-Black & Nordstrom, 2003; Riley, Infante, & Warren, 2011). FASD is often described as a "hidden" disorder, because children do not necessarily show any physical abnormalities, despite being profoundly affected (Drug Education Network, 2011; House of Representatives Standing Committee on Social Policy and Legal Affairs, 2012).
FASD is a lifelong disorder, with both primary and secondary "symptoms". Primary symptoms are caused by the direct impact of alcohol exposure on the developing brain and can mean difficulties in executive functioning (organisation, planning), memory, speech and language skills and social impulsivity. Over time, secondary symptoms can emerge as the mismatch between the child's needs and their broader environment expands. Secondary symptoms will commonly include disrupted peer relationships, fractured educational and placement experiences and increased likelihood of coming in contact with youth justice services - all contributing to a poor self-concept. FASD has a profound impact on children, their caregivers and society.
Knowledge and understanding as well as well-coordinated cross-sector initiatives will be needed to reduce the impact of FASD on children's lives. These will need to include primary and secondary prevention approaches as well as targeted tertiary interventions (see McLean & McDougall, 2014). While the evidence base for intervention is not yet well developed, both peer reviewed and grey literature suggest a range of guiding principles that are likely to be important. This paper will outline some of these guiding principles in more detail.
To summarise these principles:
- Ask about the impact of parental alcohol consumption on children's development.
- Ensure children are supported by ongoing and specialised case management.
- Adapt services in order to accommodate children with "brain-based" barriers to service use.
- Reframe challenging behaviour as a "brain-based" difficulty.
- Ensure the environment is simplified, structured and supervised.
- Teach (and re-teach) children missing skills using enhanced methods.
Parental alcohol consumption and children's development
Ask about the impact of parental alcohol consumption on children's development.
It is equally important for practitioners working in traditionally adult-focused services as those working in services focused on children and families to be aware of the potential for parental alcohol consumption to affect children's lives. Practitioners have the opportunity to minimise the impact of alcohol consumption on children's development. They can do this in two main ways.
First, by asking pregnant women about their alcohol consumption practitioners have the opportunity to prevent the occurrence of FASD in the first place. Abstaining from alcohol consumption is the only known way to prevent the primary disabilities associated with FASD (O'Leary, 2002). Without definitive evidence about safe levels of alcohol consumption, "not drinking alcohol is the safest option" (National Health and Medical Research Council [NHMRC], 2009). When talking to women about alcohol consumption, a "no-blame, no shame" approach is critical (for example, see the Russell Family Fetal Alcohol Disorders Association <//rffada.org/>). This means being sensitive to the issues surrounding alcohol consumption in pregnancy, including the impact of other substance use, partner alcohol consumption, socio-economic status and past trauma. On the whole, however, pregnant women do not find this conversation distressing (Jones, Telenta, Shorten & Johnson, 2011).
Second, practitioners can encourage clients who are also parents to reflect on how alcohol consumption affects their parenting. Alcohol consumption can affect parental capacity to monitor, supervise and provide consistency in discipline (Dawe et al., 2007). The need for these skills may be heightened when parenting a child affected by FASD. Developmental issues caused by prenatal alcohol exposure can place even greater supervisory demands on parents, while at the same time also heightening the child's need for structure and predictability in the learning environment. The development of children may be further compromised if they continue to live in unstructured or chaotic environments.
All practitioners, whether working in adult-focused or child-focused services, have the opportunity to minimise the damage caused by alcohol by asking women about their current alcohol consumption and by addressing the impact of ongoing alcohol consumption on children's development.
- Are there any barriers in your organisation to staff asking parents about alcohol consumption and its effects?
- Are parenting strengths and coping strategies identified and supported when collecting information relating to alcohol consumption?
- Does your organisation provide training on normal and abnormal child development?
- Can you get assistance from culturally relevant support staff when collecting this information from women?
- Does your client have unresolved trauma that may be affecting their parenting capacity?
- Do your organisation's intake and assessment procedures identify whether the client has a parenting or caregiver role?
- Does strengthening parent-child relationships form part of your client's treatment plan?
Specialised case management
Ensure children are supported by ongoing and specialised case management.
FASD are a set of lifelong disabilities affecting all areas of the child's life. Young people with FASD are likely to come into contact with multiple services and systems. The best outcomes seem to depend upon establishing an ongoing relationship with a key support person who understands the child's needs; together with good communication between medical, educational, community services and other professionals. This can be achieved through the use of specialised case-management approaches or through specialised multi-disciplinary diagnostic clinics.
Specialised case-management models include the key worker model (Hume, Rutman, Hubberstey, Lentz & Van Bibber, 2009) and the promising practices model (Canada: Badry & Pelech, 2011). Both models emphasise the importance of education about FASD, so that key people in the child's life develop a common understanding about FASD as a "brain-based" barrier to social inclusion. When all the significant players in the child's life have a common understanding of the nature of FASD, it leads to more effective collaboration and clearer expectations for the child. The specialised caseworker's role is to ensure that good communication is established. Good communication, in turn, means that all key players in the child's life can work together to provide the consistency in environment needed to optimise development and inclusion (see McLean & McDougall, 2014).
The caseworker also monitors the integrity of support plans, and supports caregivers in a flexible and ongoing way. Specialised casework models place emphasis on giving training and support to caregivers, providing access to ongoing caseworker support, and developing a shared understanding of the child's needs. The development of a shared understanding is viewed as particularly significant in preventing secondary "symptoms".
The specialist diagnostic clinic is another model of service delivery that is widely used in North America and Canada. In this model, the coordination role is undertaken by a specialised multidisciplinary team, led by medically trained staff. Both the diagnostic clinic and the caseworker model place emphasis on the coordination of multiple elements of child's support needs, and on communicating a shared understanding of the child's often hidden disability.
- Does your organisation provide children with ongoing and coordinated support that meets their needs?
- Is the broader family situation and the wellbeing of children explored?
- Have you developed a shared language to assist communication between adults supporting children and young people with FASD?
- How are the details of coordinated treatment plans communicated to teachers and other professionals who are supporting this child?
Services for those with "brain-based" difficulties
Adapt services in order to accommodate children with "brain-based" barriers to service use.
Children with FASD experience a range of primary and secondary symptoms that result from prenatal alcohol exposure. While the primary symptoms cannot be reversed, the secondary symptoms may be prevented by establishing services and supports that are aware and responsive to the needs of children with FASD.
Primary symptoms vary in how easily they can be detected. These symptoms can include difficulty planning and carrying out problem solving, memory problems, language difficulties, delayed motor development, disrupted attention and activity levels, and delays in specific academic skills. While children's overall IQ may be lower, this is not always the case (Carmichael Olson, King, & Jirikowic, 2008; Davis, Gagnier, Moore, & Todorow, 2013; Kalberg et al., 2006 ; Kodituwakku, 2007; Mattson, Crocker, & Nguyen, 2011; Rasmussen & Bisanz, 2009). The combination and severity of these underlying difficulties can vary, which means that developing a specific psychological test to detect FASD has not yet been possible.
The most significant primary symptoms are those functional brain difficulties that impact on the daily lives of children and their caregivers. There are a range of ways in which these difficulties affect the daily life of children (see Box 2 for indicators of underlying "brain-based" symptoms caused by FASD). Collectively, these difficulties mean that on a daily basis, it is difficult for children to learn from past experience, to apply what they have learned in one situation to another, and to predict the consequences of their actions. They can also have difficulty in transitioning from one setting or task to another, or in applying the social rules they have learned from one situation in a new setting. These characteristics mean that traditional methods of education and discipline are not effective for young people with FASD.
Box 1: Everyday difficulties for the child with FASD
Some examples of everyday difficulties for the child with FASD are:
- problems with memory (trouble learning and remembering new information; remembering only sometimes, despite previous successful learning);
- problems with everyday language (may seem talkative but understands little of the conversation, especially when words with double meanings or metaphors are used; may have little understanding about the social rules of conversations, such as taking turns; may be able to repeat instructions, but be unable to carry them out);
- thinking at a slower pace (can only understand instructions given slowly, may need lots of repetition, may miss key pieces of information);
- trouble in taking what is learned from one situation and applying it to another (always repeating the same mistakes, seems unable to link actions to consequences; trouble with generalising a rule from one setting to another; for example, from home to school);
- trouble paying attention and organising self (slow to grasp a new task, slow to move from one task to another; easily distracted);
- acting before thinking (difficulty in foreseeing danger, easily led, impulsive);
- trouble thinking in abstract terms (finding it hard to plan and set goals about time and money; difficulty in reflecting on actions; trouble in seeing similarities and differences between situations).
Source: Adapted from NOFASD, 2013; Russell Family Fetal Alcohol Disorders Association, nd; O'Leary, 2004; Department for Communities, n.d.).
For more information, see the NOFASD fact sheet FASD Characteristics across the lifespan and the Western Australian Department for Communities publication FASD: Information for people with children and families.
While primary cognitive and physical disabilities can only be prevented by actions undertaken before birth, secondary symptoms can be minimised by ongoing sensitive and skilled caregiving, and by the provision of services that are designed with the needs of children in mind. Services and programs for children living with FASD should be characterised by ongoing relationships with key people, explicit routine and structure, having expectations clearly explained using simple language, use of visual prompts and literacy support, the provision of high levels of external supervision and monitoring, and flexibility of service delivery in recognition of their poor capacity to manage time.
Services and programs that require young people to manage frequent transitions of staff, programs or timetables are likely to be problematic. The group experience provided by many services can mean that there is too much complex social information to process successfully, and highly stimulating sensory environments and activities can be overwhelming. Verbally mediated environments can be difficult due to language comprehension and production difficulties. For most services, communication about expectations is in written or verbal form that can be difficult to comprehend and therefore to comply with. This may be especially relevant in the legal context where, for example, breaches of bail conditions may inadvertently occur due to lack of understanding. Raising the awareness of staff working with young people about recognising and responding to this often invisible disability is an important first step to keeping young people living with FASD connected with the supports they need.
Better alignment of services with children's needs is important. Many aspects of "usual care" service provision may discourage the ongoing supportive relationships that young people need. Greater recognition and responsiveness to FASD in services such as education, mental health and out-of-home care can provide the "scaffolding" needed to support the young person's development.
|"Usual care"||Removing potential barriers|
|Client engagement||Difficulty with concepts of time and with organisation and planning skills means that young people with FASD will need follow-up and frequent reminders about appointments. They may not understand the significance and potential consequences of missed appointments. They may not understand verbal or written referral information or instructions and will benefit from visual prompts regarding this information.|
|Service delivery||Young people with FASD need ongoing relationships with staff who are able to negotiate and advocate for their needs. Highly abstract and verbal counselling approaches should be replaced by concrete goals, set with the assistance of visual cues and explicit skills coaching. Regular supervision and monitoring of progress by caregivers or other means is preferred to reliance on self-motivation and control. Behavioural incidents and non-compliance should be viewed as issues of capacity, rather than motivation/intention.|
|Post-program follow up||Extended periods of support and handover are needed. Young people with FASD require extensive support, service and case-coordination by a specialised case-manager. An ongoing relationship with a professional support person who understands the child's needs and can advocate on the child's behalf and anticipate future service needs is required.|
The likelihood of "secondary symptoms" can be reduced by supporting caregivers, practitioners and services acting in ways that are more sensitive and responsive to the children's needs.Since the primary symptoms caused by prenatal alcohol cannot be reversed, it becomes critical to make young peoples' interactions with services more effective.
- In what ways might your organisation better respond to the needs of children with "brain-based" barriers to inclusion?
- Has all the information relating to this child been gathered from education, carers and other relevant settings?
- How might your way of engaging with young people be adapted to better meet the needs of young people affected by FASD?
Reframing challenging behaviour
Reframe challenging behaviour as a "brain-based" difficulty.
One important focus of support is to assist caregivers and professionals to re-interpret the child's behaviour. While there are many reasons for behavioural difficulties,1 in the case of children exposed to alcohol prenatally, underlying "brain-based" difficulties are central. It is helpful to reframe behaviour as the unintentional consequence of compromised brain function, rather than wilful defiance. Asking the question "Is it that the child won't or is it that the child can't?" can be useful (Malbin, 2002, emphasis added). The beliefs that we have about behaviour can help determine our commitment to continue supporting a child with challenging behaviour (McLean, Kettler, Delfabbro, & Riggs, 2012).
- Do you stop and ask "Is it that the child won't or is it that the child can't"?
- Does your organisation provide training for staff on interpreting the behaviour of children with FASD? Does it provide training to caregivers?
- How can a young person affected by FASD be assisted to understand the nature of their difficulties? What might be the positives from doing this?
|What the caregiver might think about the child||What "brain- based" difficulties might the child be experiencing?|
|"He won't listen, he can't be taught."||Slowed speed of thinking, poor language comprehension and poor memory makes it hard for children to comply with requests in a timely way.|
|"She won't obey, she does it on purpose."||Poor understanding of instructions means the child does not know what to do. Difficulty in linking cause and effect means making the same mistake again and again.|
|"He is so controlling, totally inflexible."||Slowed speed of thinking means difficulty in moving from task to task. Difficulty in generalising learning from one situation to another and difficulty in adapting to novel situations.|
|"I know she can do it, she behaves at school, but not at home."||Difficulty in planning and organising behaviour in unstructured situations. Needs high levels of assistance and routine to anticipate what is required in social situations. Difficulty in generalising learning from one situation to another and difficulty in adapting to novel situations.|
|"He doesn't take responsibility for behaviour ..."||Difficulty in linking actions with consequences. Difficulty in remembering events.|
|"She can't handle change."||Has trouble in working out the routines and relationships in new environments without someone to tell him what the new rules are or how the expectations have changed.|
|"He has no real friends/is easily led ..."||Has trouble in understanding social rules and in predicting the consequences of his/her actions. Needs explicit instruction in friendship skills.|
|"She can never be bothered, apathetic."||Difficulty in organising and planning a goal-oriented activity. Poor working memory. Hypo-arousal caused by sensory dysregulation.|
|"He's hyperactive, can't sit still."||Sensory overload, overstimulation and dysregulation of sensory system.|
|"She takes everything literally, has no sense of humour."||Poor language skills mean the child can't understand double meanings in jokes. The child interprets every word in terms of its concrete meaning. Difficulty in thinking in abstract terms, and in recognising similarities and differences.|
|"He won't let me touch him."||The child is highly sensitive to the sensory world of touch, smell and light, and is easily overwhelmed.|
Source: Adapted from McLean, 2012.
A simplified, structured and supervised environment
Ensure the environment is simplified, structured and supervised.
One of the main effects of prenatal alcohol exposure on children is compromised development of adaptive skills such as planning, flexible thinking and problem-solving ability. Behaviourally, it means that children will have difficulty in organising their thoughts, in transferring their learning from one environment to another, in managing change and novelty and working out what is expected of them in new or unpredictable environments. For this reason, a highly structured and simplified environment is recommended.
Children with FASD will also need high levels of supervision and monitoring to assist them to organise, plan and carry out tasks, and to adapt to any new circumstances as they arise; especially in an unfamiliar environment. In many ways, it can be helpful to think of the child's carer as acting as an "external brain" for the child, "scaffolding" the child's development until a skill can be attained independently (McLean, 2012).
There are four main changes that we can make to the environment that will help children (adapted from Dawson & Guare, 2004):
- Change their physical or social environment. Examples include modifying the sensory environment, changing where a child sits in class or reducing the number of children they need to interact with socially.
- Change the nature of the tasks we ask them to do. Examples include breaking complex tasks down into steps, providing limited/forced choice options in decision making, rather than open-ended abstract processes, providing clear criteria for the child (How do they know they have completed a task?).
- Change the nature of the prompts we give children. Examples might include providing visual prompts, visual schedules, providing task lists or steps, using alarms and timers as prompts.
- Change the way we interact with children. Provide high levels of explicit skill instruction and external supervision and oversight. Monitor, support and provide feedback about the development of life skills, problem-solving skills and social skills.
- How can you structure and "scaffold" the child's world?
- How can you simplify the way you talk to young people so they can more easily understand
- Are the instructions that you give to children and young people clear and simple?
- Have you considered the use of visual prompts?
- Have you considered breaking tasks down into simple steps?
- How can you reduce sensory stimulation so the child or young person can more easily pay attention?
Providing a highly structured environment will maximise children's learning opportunities; for example, providing concrete explanations and warnings about each upcoming activity, and ensuring the environment is as consistent as possible and designed to reduce overstimulation. These suggestions may be especially important in assisting to manage sensory arousal levels so that children's attention can be optimised in learning environments like classrooms. There are many resources available that offer suggestions on creating a caregiving and learning environment that is simplified, highly structured and supervised (See for example the Russell Family Fetal Alcohol Disorders Association's Strategies and Interventions).
Teaching with enhanced methods
Teach (and re-teach) children missing skills using enhanced methods.
Many caregivers find that traditional parenting approaches are less effective for children living with FASD. This can lead to frustration and despair. Standard parenting approaches rely on a child's capacity for self-regulation and self-reflection. These skills are compromised in the case of children exposed to alcohol prenatally. A child affected by prenatal alcohol exposure will process the world in a way that differs from other children, and is unable to learn from experience as easily as other children. Many of the everyday skills that other children acquire effortlessly need to be explicitly taught (and re-taught!) using methods that complement brain-based barriers to learning.
- Are you expecting the child to change how they learn or can you change how you teach?
- Does your service setting engage and support parents and caregivers in meaningful ways that maximise outcomes for children and young people with FASD?
- How comfortable are you in adapting your interaction style to suit the needs of children and young people living with FASD?
The social and behavioural issues faced by children, and the strategies that work will vary from individual to individual depending on age, setting and other factors. It is important to remember that social skills, daily living skills and academic skills will not necessarily be learned without being taught to the child in a focused way. The following methods have been found to be helpful:
- Break complex tasks down into single steps. Then teach each step.
- Simplify language, use repetition and rely on visual prompts to supplement your instructions.
- Issue one direction at a time; tell the child what you want them to do in concrete terms. Do not use non-literal language, such as sarcasm, irony and metaphor.
- Expect to repeat instructions. Do not assume a skill that is demonstrated is retained. Learning may not be retained from one day to the next.
- Use repetition or "overlearning" to overcome memory difficulties.
- Provide information/learning through more than one sensory modality. The use of visual cues (picture social stories) is likely to be helpful in teaching household routines and social conventions (for example, saying hello to friends at the start of the school day). Using visual cues can also help children to anticipate transitions.
It is important to remember that a child's learning in one setting will not necessarily be retained, or applied, to another setting. Whenever possible, involve all other relevant adults (for example, teachers) to help the child to generalise their learning across many settings. Share your understanding with other significant adults in the child's life, using consistent language and expectations. There are a wealth of tips and suggestions for applying these basic principles available, including the National Curriculum Services' resource, Understanding and Addressing the Needs of Children and Young People with Fetal Alcohol Spectrum Disorders in Schools (Weston & Thomas, 2014). This resource provides information about strategies to support cognitive and communication development, behaviour development and social and emotional development.
For further information to guide you in your efforts to support children affected by FASD, you are encouraged to visit the following sites:
An independent not-for-profit charitable organisation and the national peak organisation representing the interests of individuals and families living with fetal alcohol spectrum disorders (FASD). NOFASD aims to prevent alcohol-exposed pregnancies in Australia and to improve the quality of life of those living with FASD. The website provides a range of resources and links to national and international resources and support groups.
A national not-for-profit health promotion charity dedicated to ensuring that individuals affected prenatally by alcohol have access to diagnostic services, support and multidisciplinary management planning in Australia and that carers and parents are supported with a "no blame no shame" approach. The website provides links to a range of research, projects, information and support resources related to FASD.
- Badry, D., & Pelech, W. (2011). Fetal Alcohol Spectrum Disorder Promising Practices: For children in the care of Alberta Children & Youth Services. Final report. Calgary, AB: University of Calgary. Retrieved from <fasd.alberta.ca/documents/FASD-COP-Final-Report-2011.pdf>.
- Carmichael Olson, H., King, S., & Jirikowic, T. (2008). Fetal alcohol spectrum disorders. In M. M. Haith & J. B. Benson (Eds.), Encyclopaedia of Infant and Early Childhood Development. San Diego, CA: Academic Press.
- Davis, K. M., Gagnier, K. R., Moore, T. E., & Todorow, M. (2013). Cognitive aspects of fetal alcohol spectrum disorders. Wiley Interdisciplinary Reviews: Cognitive Science, 4(1), 81-92.
- Dawe, S., Frye, S., Best, D., Lynch, M., Atkinson, J., Evans, C., et al. (2007). Drug use in the family: Impacts and implications for children (ANCD research paper 13). Canberra: Australian National Council on Drugs. Retrieved from <www.ancd.org.au/images/PDF/Researchpapers/rp13_drug_use_in_family.pdf>.
- Dawson, P., & Guare, R. (2004). Executive skills in children and adolescents: A practical guide to assessment and intervention. New York, NY: The Guildford Press.
- Department for Communities. (n.d.). FASD: Information for people with children and families. Perth: Department for Communities, Government of Western Australia. Retrieved from <www.communities.wa.gov.au/Documents/Parents%20Families%20Education%20Care/CFS-FASD-foetal-alcohol-spectrum-disorder-service-providers.pdf>.
- Drug Education Network. (2011). Living with FASD: A guide for parents and caregivers. Hobart: Drug Education Network. Retrieved from <www.den.org.au/wp-content/uploads/2011/08/Living-with-FASD.2011.pdf>.
- House of Representatives Standing Committee on Social Policy and Legal Affairs. (2012). FASD: The hidden harm. Inquiry into the prevention, diagnosis and management of fetal alcohol spectrum disorders. Canberra: Parliament of the Commonwealth of Australia.
- Hume, S., Rutman, D., Hubberstey, C., Lentz, T., & Van Bibber, M. (2009). Key worker and parent support program: Final formative evaluation report. Retrieved from <www.mcf.gov.bc.ca/fasd/pdf/2008_09_formative_report.pdf>.
- Jones, S. C., Telenta, J., Shorten, A., & Johnson, K. (2011). Midwives and pregnant women talk about alcohol: What advice do we give and what do they receive? Midwifery, 27, 489-496.
- Kalberg, W. O., Provost, B., Tollison, S. J., Tabachnick, B. G., Robinson, L. K., Hoyme, H. E. et al. (2006). Comparison of motor delays in young children with fetal alcohol syndrome to those with prenatal alcohol exposure and with no prenatal alcohol exposure. Alcoholism: Clinical and Experimental Research, 30(12), 2037-2045.
- Kodituwakku, P. W. (2007). Defining the behavioural phenotype in children with fetal alcohol spectrum disorder. Neuroscience and biobehavioural reviews, 31, 192-201.
- Malbin, D. (2002). Trying differently rather than harder (2nd Ed.). Portland, OR: FASCETS Inc.
- Mattson, S. N., Crocker, N., & Nguyen, T. T. (2011). Fetal alcohol spectrum disorders: Neuropsychological and behavioural features. Neuropsychological Review, 21, 81-101.
- McLean, S. (2012, September) Neuropsychological difficulties in out of home care: Implications for management of challenging behaviour. Paper presented at the Rising to the Practice Challenge 2012 Conference, Adelaide, South Australia.
- McLean, S., Kettler, L., Delfabbro, P., & Riggs, D. (2012). Frameworks for understanding challenging behaviour in out-of-home care. Clinical Psychologist, 16(2), 72-81.
- McLean, S., & McDougall, S. (2014). Fetal alcohol spectrum disorders: Current issues in awareness, prevention and intervention. (CFCA Paper No. 29). Melbourne: Child Family Community Australia, Australian Institute of Family Studies.
- National Health and Medical Research Council. (2009). Australian guidelines to reduce health risks from drinking alcohol. Canberra: NHMRC. Retrieved from <www.nhmrc.gov.au/_files_nhmrc/publications/attachments/ds10-alcohol.pdf>.
- National Organisation of Fetal Alcohol Syndrome Disorders (NOFASD). (2013). FASD characteristics across the lifespan (Fact sheet). Retrieved from <www.nofasd.org.au/resources/fact-sheets>.
- O'Leary,C. (2002). Fetal alcohol syndrome: A literature review. Occasional Paper for the National Expert Advisory Committee on Alcohol. Canberra: Department of Health and Ageing. Retrieved from <www.health.gov.au/internet/alcohol/publishing.nsf/Content/746BAD892492B586CA2572610010C29A/$File/fetalcsyn.pdf>
- O'Leary, C. M. (2004). Fetal alcohol syndrome: Diagnosis, epidemiology and developmental outcomes. Journal of Paediatrics and Child Health, 40, 2-7.
- Rasmussen, C., & Bisanz, J. (2009). Exploring mathematics difficulties in children with fetal alcohol spectrum disorders. Child Development Perspectives, 3(2), 125-130.
- Riley, E. P., Infante, M. A., & Warren, K. R. (2011). Fetal alcohol spectrum disorders: an overview. Neuropsychological Reviews, 21, 73-80.
- Sokol, R. J., Delany-Black, V., & Nordstrom, B. (2003). Fetal alcohol spectrum disorder. JAMA: The Journal of the American Medical Association, 290(22), 2996-2999.
- Weston, J., & Thomas, S. (2014). Understanding and addressing the needs of children and young people with fetal alcohol spectrum disorders in schools. Melbourne: National Curriculum Services on behalf of the Kimberly Success Zone.
1 FASD cannot be established in the absence of confirmed history of prenatal alcohol exposure and specialised diagnostic procedures. Challenging behaviour and learning difficulties may be caused by many factors, especially in complex and vulnerable populations. This paper is intended to outline some principles of engaging with young people who are suspected to have FASD, but includes principles that may also be helpful to other populations where neurocognitive compromise may be present. These principles may be helpful in high risk populations, where FASD may be suspected. Examples might include families in which high levels of prenatal alcohol consumption is suspected, where there are current parental substance abuse issues, where there is another child in the family with confirmed FASD, and/or where a child presents with entrenched behavioural, social and learning difficulties.
The authors wish to acknowledge the valuable contribution of Jane Weston, Manager, Project Management Support at the Australian Institute of Family Studies.
Sara McLean is a registered psychologist and research fellow at the Australian Centre for Child Protection. Sara McLean has extensive experience working in child and adolescent mental health, and holds a special interest in children who have experienced a range of early life adversities - and display challenging and aggressive behaviour. Her research focuses on supporting the foster carers, professionals and children in out-of-home care placements to experience more stable and continuous relationships in care.
Stewart McDougall is part of the research team at the Australian Centre for Child Protection and has worked with Dr Sara McLean on expanding the Centre's FASD research program. He has an interest in the overlap of FASD and child welfare concerns. He has presented his work on a systematic review of interventions for children with FASD to a number of audiences, including the inaugural Australasian Fetal Alcohol Spectrum Disorders Conference in 2013 and has co-authored several papers on FASD in conjunction with Sara McLean.
Vicki Russell lives and works in Tasmania. At the time of writing Vicki was the CEO of NOFASD Australia, the national peak organisation representing the interests of individuals and families living with Fetal Alcohol Spectrum Disorder (FASD). She is a PhD candidate completing research on fetal alcohol prevention in three countries. Vicki holds a Diploma of Project Management, is trained in narrative practice for counselling and professional supervision and has completed a 12-month Certificate in Mastery in the Fetal Alcohol/Neurobehavioural Approach. She has delivered education and training throughout Australia and presented papers on fetal alcohol at international and national forums. Vicki has worked in the non-government sector for over 30 years.
A paper: Fetal alcohol spectrum disorders: Current issues in awareness, prevention and intervention has also been published.