1. What is Fetal Alcohol Spectrum Disorder (FASD)?

What is this resource about?

Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term used to describe a range of distinct but related developmental diagnoses and their associated symptoms, all of which are caused by alcohol exposure in utero. This resource is intended to highlight the significance of Fetal Alcohol Spectrum Disorders (FASD) to practitioners working in child, family and adult-focused services. It is one in a series of Emerging Minds resources on FASD and its impact on children and families.

Although the damage caused by prenatal alcohol exposure is likely to be permanent, the early identification of children, together with the provision of tailored support, can maximise a child’s social, educational and vocational outcomes.

Who is this resource for?

This resource is suited to practitioners working in both child and adult-focused services, as well as general practitioners and allied health professionals working with pregnant women.

It is important for all practitioners to understand the likely impact of FASD on children’s lives. Child and family practitioners have the potential to support children living with behavioural or mental health challenges related to prenatal alcohol exposure. Practitioners in adult-focused services have the potential to provide additional support and tailored parenting techniques to parents who are raising a child affected by prenatal alcohol exposure. Medical and allied health professionals are amongst the first to meet pregnant women and their partners and can therefore minimise the potential harm to a child caused by exposure in utero.

What is Fetal Alcohol Spectrum Disorder?

Fetal Alcohol Spectrum Disorder (FASD) is a significant and life-long developmental condition that affects children and communities across the world. It is characterised by a range of cognitive and physical impairments that can also include intellectual disability. FASD is directly caused by maternal alcohol consumption during pregnancy and is 100% preventable if mothers-to-be avoid alcohol. As such, it is one of the most important and preventable forms of non-genetic birth defects (Roozen, Kok & Curfs, 2017).

FASD is an umbrella term used to describe a range of birth defects caused by prenatal exposure to alcohol. The range of diagnoses that fall under this umbrella term varies according to the diagnostic framework being employed; and there is not yet international consensus about the best way to describe and diagnose FASD in all its forms (see Appendix 1 for more information about the range of difficulties included under the umbrella description of FASD). FASD is sometimes referred to as an invisible disability, as the disorder is not always accompanied by any discernible physical characteristics.

Australia has recently developed and adopted its own diagnostic criteria for FASD, based on international guidelines and developed in collaboration with key Australian experts and stakeholders.

Related: Australian diagnostic guidelines for FASD

The more a woman drinks during pregnancy, the higher the risk to the unborn child (Burns, Elliot et al., 2012), although not all children will be affected to the same degree (O’Leary, 2004).

The extent of brain and physical damage to the unborn baby can vary, depending on factors that are not yet fully understood. These factors are likely to include the pattern of alcohol consumption and amount consumed; the stage(s) of fetal development during which exposure occurred; and parental factors unrelated to alcohol exposure such as genetics, epigenetic changes, socio-economic factors, age at conception and maternal nutritional status (May & Gossage, 2011).

There can be confusion amongst practitioners and medical professionals about the acceptable safe lower limits for alcohol consumption during pregnancy (McLean & McDougall, 2014). It is widely accepted that binge drinking behaviour produces both higher and longer-lasting maternal blood alcohol levels; thereby prolonging fetal exposure to alcohol (Flak et al., 2014; Maier & West, 2001; Paintner, Williams, & Burd, 2012). However, it is now believed that even low levels of alcohol exposure may affect children’s development and later behaviour (Flak et al., 2014; O’Leary & Bower, 2012).

Accordingly, the National Health and Medical Research Council (NHMRC) (2009) guidelines (currently under review) recommend avoiding alcohol altogether during pregnancy. The current NHMRC guidelines state:

In light of this, there is a clear mandate for any professional who may come in contact with pregnant women to ask about their alcohol consumption, when able to do so in the context of a supportive relationship.

Professionals can feel unsure about whether or not to ask women about their alcohol consumption. However, when asked, pregnant women reported positive experiences of discussing their alcohol use with professionals (Jones, Telenta, Shorten, & Johnson, 2011). This suggests that the relationship between professionals and pregnant women need not be harmed by conversations about alcohol use during pregnancy (McLean & McDougall, 2014).

Adult-focused practitioners and health professionals such as obstetricians, alcohol and other drug (AOD) counsellors, general practitioners and allied health practitioners need to be mindful of the opportunity they have to educate future parents about the significance of alcohol consumption during pregnancy (McLean & McDougall, 2014).

FASD may be more prevalent in the community than previously thought. Across the world, we now believe the prevalence ranges between 1-5% of the community (May et al., 2009; Roozen et al., 2016; Stade et al., 2008; Thanh, Jonsson, Salmon, & Sebastianski, 2014). The prevalence of FASD is thought to be particularly high in certain vulnerable populations, including children who are living in foster care, and those in residential care and youth detention facilities (Fast and Conry, 2011; Lange, Shield, Rehm, & Popova, 2013; Popova, Lange, Bekmuradov, Mihic, & Rehm, 2011; Streissguth, Barr, Kogan, & Bookstein, 1996).

Children who are exposed to alcohol in utero can experience a range of significant developmental issues that are related to underlying damage to their developing brain and other organs. At this stage, evidence suggests that these underlying difficulties are permanent and life-long and can have a significant impact on a child’s developmental, social and educational opportunities. In particular, children and young people living with FASD are at risk of developing significant mental health issues over the course of their lives. (Roozen et al., 2017)

Related: 2. Understanding the impacts of Fetal Alcohol Spectrum Disorder (FASD) on child mental health.

While researchers are beginning to understand how to better support affected children and families, there is not yet any therapeutic or pharmacological intervention that can fully address the challenges faced by these children. However, practitioners can minimise the negative repercussions these issues have on children’s lives. Early identification and appropriate and tailored support can help to minimise the impact (Streissguth et al., 2004). Practitioners who understand the challenges faced by children living with FASD and the principles for supporting children and families living with FASD can have a significant impact on children’s developmental opportunities.

Related: 3. How to support children living with FASD

Related: 4. How to support caregivers and families of children living with FASD

Most of what is written about FASD focuses on the impact of prenatal alcohol exposure on a child’s brain functioning, but alcohol exposure in utero can affect all aspects of children’s physical and brain development.

FASD is beginning to be recognised as a “whole-body disorder” (Anderson et al., 2017, p.69). Children living with FASD are also extremely likely to experience a range of other medical conditions and physical difficulties – the impact of which aren’t yet fully understood (Popova et al., 2016). It is an extremely heterogeneous disorder, meaning that the impact on each child is highly unique; and no two children living with FASD are affected in precisely the same way.

Most is understood about the impact of alcohol on children’s cognitive functioning. In general, there are cognitive challenges that appear to be common amongst children living with FASD:

These cognitive, language and learning issues can mean that children can have difficulty with regulating their social behaviour, coping with change and with taking part in learning environments. While the underlying cognitive issues may be permanent, the impact of these difficulties can be minimised by providing tailored and consistent support (Streissguth et al., 2004; McLean et al., 2014), in keeping with an ecological understanding of children’s needs (Broffenbrenner, 1979; Streissguth et al., 2004). Some of the key environmental factors that can positively shape the development of children living with FASD include:

• providing access to stable, nurturing relationships with adults that understand FASD
• providing access to early diagnosis and consistent, tailored support from services
• increasing the capacity of service providers to create FASD-responsive environments and interactions with children and young people.

Related: 3. How to support children living with FASD

Related: 4. How to support caregivers and families of children living with FASD

Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term used to describe the range of distinct but related difficulties caused by exposure to alcohol in utero. FASD affects the developing child in a range of ways, including permanent changes in the development of the brain and other organs. Some children living with FASD will have sentinel facial features, but many may not look any different from their peers. This is why FASD is known as an ‘invisible’ disability.

The prevalence of FASD in the community is now recognised. FASD may be even more common amongst children in care and amongst those in contact with the justice system.

At present, it appears that the underlying cognitive difficulties related to FASD cannot be reversed. FASD is a significant issue in child development because it is associated with higher rates of mental health concerns, suicidality, contact with youth justice, and placement and educational instability over the child’s lifetime. Practitioners and services that are aware of FASD can take steps to minimise its impact on children and families over time by providing tailored and consistent support.

Related: Appendix 1. The range of symptoms that are included under the umbrella of FASD

References

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Bower, C., & Elliott, E. J. (2016). Report to the Australian Government Department of Health: Australian guide to the diagnosis of Fetal Alcohol Spectrum Disorder (FASD). Retrieved from: https://www.fasdhub.org.au/siteassets/pdfs/australian-guide-to-diagnosis-of-fasd_all-appendices.pdf

Bronfenbrenner, U. (1979). The ecology of human development: Experiments by nature and design. Cambridge, Massachusetts: Harvard University Press.

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