Fetal alcohol spectrum disorders: Current issues in awareness, prevention and intervention

CFCA Paper No. 29 – December 2014

Are there groups that are particularly affected by FASD?

FASD may be more common among some populations but the reasons for this are likely to be complex. Although FAS, at the more severe end of the spectrum, may be more common among lower socio-economic groups, this is likely to reflect an interaction of alcohol use with nutritional, genetic and social factors (O'Leary, 2002). FAS is frequently associated with early maternal death, living with an alcoholic parent, child abuse and neglect, being removed into care, experiencing repetitive periods of foster care or being raised by adoptive or foster families (May, Hyumbaugh, Aase & Samet, 1983; Russell, Henderson & Blume, 1984; Streissguth et al., 1991; Werner, 1986). Intergenerational alcohol use may also mean that parents of children living with FASD are themselves affected by the same condition. The multiple psychosocial stressors associated with FASD mean that children affected by FASD may come in contact with many service systems.

Indigenous Australians

Although Indigenous Australians report lower levels of alcohol consumption than non-Indigenous Australians, when they do consume alcohol, they are more likely to consume it at levels above the NHMRC guidelines. According to the 2010 National Drug Strategy Household Survey (AIHW, 2011) 25% of Aboriginal and Torres Strait Islanders, compared to 19% of non-Indigenous respondents, reported being abstainers or ex-drinkers. Thirty-one per cent of Aboriginal and Torres Strait Islanders, compared to 20% of non-Indigenous respondents, reported drinking at levels deemed to be risky over the lifetime. It is important to note that these figures have been subject to criticism on methodological grounds (National Indigenous Drug and Alcohol Committee [NIDAC], 2012).

Numerous studies indicate elevated rates of FAS among Indigenous populations generally, although these figures are thought to have been inflated by both systematic sampling bias (studying populations already known to have high levels of drinking) and associated socio-economic stressors (O'Leary, 2004). It should also be noted that there is no incidence or prevalence rate known for the general population for comparative purposes.

Research exploring Aboriginal women's knowledge and attitudes towards alcohol use in pregnancy suggested that education strategies should be culturally sensitive and consider the experiences/needs of Aboriginal women, but not directly target them (Burns, Elliot et al., 2012). This may encourage the community to understand that FASD is not an issue exclusive to Indigenous populations. If incidence and prevalence rates are elevated in Indigenous populations, it will be difficult to disentangle the influence of increased surveillance, and methodological issues related to measuring patterns of alcohol consumption in Indigenous communities. FASD should not be considered an issue that occurs only in Indigenous communities (NIDAC, 2012). Rather, FASD will occur in any community where alcohol is consumed.

The Australian Indigenous Alcohol and Other Drug Knowledge Centre has recently published a website on FASD with key facts and links to health promotion and practice resources <pilot.aod.healthinfonet.ecu.edu.au/aodkc/alcohol/fasd>.

Children and young people in out-of-home care

There is increasing awareness of the significance of prenatal alcohol exposure for children in the child welfare and alternative care populations (Parkinson & McLean, 2013). Children with FASD can often be placed in out-of-home care (OOHC) due to ongoing issues related to alcohol consumption in the family of origin. Parental substance abuse is a major contributor to children entering out-of-home care, with alcohol being the most commonly used substance (Jeffreys, Hirte, Rogers, & Wilson, 2009).

In a recent review of the prevalence of FASD in children in out-of-home care, Lange, Shield, Rehm, and Popova (2014) reported the prevalence of FASD as between 11% and 24% (mean = 17%). A large number of the papers included in the Lange et al. (2014) review drew samples from Eastern European orphanages where the primary reason for child abandonment was maternal alcohol consumption/prenatal alcohol exposure, which may have inflated the prevalence estimates. Markedly fewer studies have been conducted drawing samples from child welfare/child protection samples. Studies drawing samples from a child welfare population found a rate of 17% of children with FASD (Fuchs, Burnside, Marchenski, & Mudry, 2005 as cited in Fuchs et al., 2010). A related finding is the high rate of children with FASD who are not raised by birth parents. Estimates of the percentage of children with FASD raised by people other than their biological parents range from 60% to 80% across Australia, Canada and North America (Streissguth et al., 2004; Elliot, Payne, Morris, Haan, & Bower, 2008; Hume et al., 2009). These studies suggest that there is a large number of children with FASD in the OOHC system.

The secondary symptoms of children with FASD place additional burden upon their carers. Children with FASD who are in OOHC can suffer multiple placement breakdowns as a result of their complex support needs and challenging behaviour (Brown, Bednar, & Sigvaldason, 2007; Paley & Auerbach, 2010). Consistent, stable caregiving is an important protective factor in the lives of children with FASD, highlighting the need to support birth parents and carers of children with FASD (Green, 2007; Kalberg & Buckley, 2007; Streissguth et al., 2004). Burnside and Fuchs (2013) suggested that the continuity of relationships with carers is an important protective factor for children who are "ageing" out of care.

Foster carers may not receive adequate information and support from professionals (Brown et al., 2007). Carers may not suspect that a child is living with FASD because they don't have access to a child's social and medical background (Drug Education Network, 2011). This can lead foster carers to use parenting approaches that may be less effective than when used with non-affected children (Drug Education Network, 2011). Professionals may not have the knowledge necessary to support foster carers. Two recent studies of Australian foster carers highlighted the need to improve knowledge of FASD among the health care professionals foster carers rely on for support and advocacy (Breen & Burns, 2012; Wilkins, Jones, Watkins, & Mutch, 2013). Foster carers in these studies expressed the desire for improved diagnostic services and for FASD to be recognised as a disability, akin to autism, with associated financial support (Breen & Burns, 2012; Wilkins et al., 2013).

Children and young people in contact with youth offending and justice programs

Given the significance of this issue among adult and youth offending populations, it is important for those who work within the youth justice system to be aware of FASD (Mutch, Watkins, Jones, & Bower, 2013). In one study, for example, 23% of children remanded in a North American youth forensic assessment unit were assessed as having FASD (Fast, Conry, & Loock, 1999). Streissguth and colleagues (2004) found that 14% of children and 60% of adolescents with FASD had been in trouble with the legal system. Of these, 13% of children and 67% of adolescents were charged, arrested and/or convicted.

Young people with FASD are more likely than others to interact with the criminal justice system as either victims or offenders (Mutch et al., 2013). Cognitive and language vulnerabilities associated with FASD, including impaired self-regulation, and poor cognitive flexibility and decision-making, mean that children and adolescents with FASD are more vulnerable to victimisation, exploitation, negative peer pressure and being led to take part in antisocial conduct (Fast et al., 1999; Snow & Powell, 2004a).

Once part of judicial proceedings, limited oral language competence means they may not have the capacity to understand judicial decision-making processes (Snow & Powell, 2004b). Young people with FASD require specific adaptations to all aspects of judicial proceedings to accommodate their cognitive deficits at all points of the youth justice system, including strategies to enhance engagement in restorative proceedings and the adaptation of bail conditions to ensure the young persons' needs are accommodated (Institute of Health Economics, 2013). Custodial sentencing may not be effective in deterring future offending due to difficulties in linking actions and consequences. Alternative sentencing options with high levels of external supervision may be more appropriate (Mutch et al., 2013). For youth with significant language difficulties, it may be questionable whether the use of restorative conferencing between victim and offender is appropriate (Snow & Powell, 2004b).