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.

Reflective questions:

• 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.

Reflective questions:

• 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.

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.

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.

Reflective questions:

• 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). 

Reflective questions:

• 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?

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):

1. 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.
2. 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?).
3. 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.
4. 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.

Reflective questions:

• 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.

Reflective question: 

• 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:

Useful websites

National Organisation for Fetal Alcohol Spectrum Disorders Australia (NOFASD Australia)

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.

Russell Family Fetal Alcohol Disorders Association

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.

References

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