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

CFCA Paper No. 29 – December 2014

What are fetal alcohol spectrum disorders?

Fetal alcohol spectrum disorders (FASD) is a non-diagnostic umbrella term. FASD covers the full range of possible birth defects and/or developmental disabilities that can be caused by exposure to alcohol in utero. The term FASD emphasises the fact that prenatal alcohol exposure can lead to a spectrum of physical, cognitive and developmental outcomes (Drug Education Network, 2011; Riley, Infante, & Warren, 2011; Sokol, Delany-Black, & Nordstrom, 2003). FASD is often described as a "hidden" disability because physical changes resulting from prenatal alcohol exposure can be subtle and not easily recognised (Drug Education Network, 2011; House of Representatives Standing Committee on Social Policy and Legal Affairs, 2012).

FASD includes fetal alcohol syndrome (FAS), partial fetal alcohol spectrum (pFAS) and alcohol related neurodevelopmental disorder (ARND) or neurodevelopmental disorder-alcohol exposed (ND-AE, subject to approval of proposed national diagnostic criteria (see National Organisation for Fetal Alcohol Spectrum Disorders [NOFASD], n. d.; Watkins et al., 2013). These disorders reflect different combinations of physical and neurobehavioural outcomes, depending on how alcohol exposure affects the developing fetus (see Table 1 for a description of FAS and related disorders). In this paper, the term FASD will be used to capture this broad range of negative outcomes seen in children exposed to alcohol prenatally, unless specification is needed.

Table 1: Description of FAS and related disorders
Fetal alcohol spectrum disorders (FASD) FASD is a term used for a spectrum of conditions caused by fetal alcohol exposure. Each condition and its diagnosis are based on the presentation of characteristic features that are unique to the individual and may be physical, developmental and/or neurobehavioural (NOFASD, n. d.).
FASD includes FAS, pFAS, ARBD, ARND/ND-AE (described below).
FASD is not a clinical diagnosis but describes a group of related diagnoses.
Fetal alcohol syndrome (FAS) A syndrome characterised by: specific facial abnormalities; reduced size of the newborn and/or poor growth after birth; and problems of behaviour and cognition due to structural and /or functional abnormalities of the central nervous system (CNS). FAS is most commonly seen in children born to mothers who consumed significant quantities of alcohol during early pregnancy.
Partial fetal alcohol syndrome (pFAS) A syndrome characterised by significant structural, neurological and/or functional abnormalities of the CNS and most, but not all, of the growth and/or facial features of FAS. Diagnosis requires a confirmed history of prenatal alcohol exposure.
Alcohol-related neurodevelopmental disorder or neurodevelopmental disorder-alcohol exposed The diagnostic categories of alcohol related neurodevelopmental disorder (ARND) and neurodevelopmental disorder-alcohol exposed (ND-AE) reflect severe CNS dysfunction in the absence of the facial anomalies. ND-AE is proposed as the Australian diagnostic category (Watkins et al., 2013).
A diagnosis of ND-AE requires confirmed prenatal exposure to alcohol and at least one of the following:
  • clinically significant structural abnormality (e.g., head circumference ≤ 3rd percentile, abnormal brain structure), or neurological abnormality (seizure disorder or hard neurological sign); and/or
  • severe dysfunction (impairment in three or more domains of function at two or more standard deviations below the mean). Functional domains include cognition, academic performance, language, memory, executive function, attention/activity and adaptive behaviour/social skills.
Alcohol-related birth defects Birth defects including malformations and dysplasia (abnormal growth or absence from birth) associated with prenatal alcohol exposure. These may include cardiac (heart), skeletal, renal (kidneys), ocular (eyes), auditory (hearing) and other malformations.

Source: Adapted from Watkins et al. (2013)

Alcohol has been long recognised as a teratogen - a substance that is capable of interfering with and damaging the development of a fetus, resulting in a range of birth defects. The impact of alcohol consumption during pregnancy is unique for each person, depending on the circumstances of each pregnancy. Ultimately, the impact on the developing fetus ranges widely according to the timing and the amount of maternal alcohol consumption, as well as factors such as maternal nutritional status, age and socioeconomic status (May & Gossage, 2011).1

In Australia, efforts to prevent FASD and address its impact have lagged behind efforts in countries such as the USA and Canada. There has been inconsistent attention paid to FASD, and the development and application of programs has been ad hoc across the various Australian jurisdictions (Foundation for Alcohol Research and Education [FARE], 2013). Awareness of the significance of FASD has been increasing more recently, influenced in part by a number of key publications and activities. Some of these are detailed in Box 1.

Box 1: Selected Australian initiatives related to FASD awareness in Australia

The National Organisation for Fetal Alcohol Spectrum Disorders Australia (NOFASD; formerly the National Organisation for Fetal Alcohol Syndrome and Related Disorders: NOFASARD) formed in 1999 and is acknowledged as the peak non-government organisation representing individuals and their families. It is funded by the Commonwealth to deliver support, education and training, resources, advocacy and consultation. NOFASD aims to prevent alcohol-exposed pregnancies in Australia and to improve the quality of life for those living with FASD. The website provides a range of resources and links to national and international resources and support groups <www.nofasd.org.au>.

The Australian FASD Collaboration brings together leading consumer advocates with key Australian researchers. The Australian FASD Collaboration is working towards the development of a national diagnostic instrument for FASD.

The Russell Family Fetal Alcohol Disorders Association (RFFADA) was formed in 2007 and is 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. <www.rffada.org>.

The Australian Indigenous Alcohol and Other Drug Knowledge Centre 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>.

The Foundation for Alcohol Research and Education (FARE) launched the Australian Fetal Alcohol Spectrum Disorder Action Plan 2013-16 (PDF 2.5 MB), addressing the gaps in prevention and management of FASD in Australia. Retrieved from <www.fare.org.au/wp-content/uploads/2011/07/FARE-FASD-Plan.pdf>.

The inaugural Australasian Fetal Alcohol Spectrum Disorders Conference, hosted by FARE and the Public Health Association Australia, was held in Brisbane in November, 2013. <www.phaa.net.au/AFASDC_2013.php>.

Government initiatives

Intergovernmental Committee on Drugs Working Party on Fetal Alcohol Spectrum Disorders. Fetal Alcohol Spectrum Disorders in Australia (PDF 1.1 MB) (updated 2012). Retrieved from <www.nationaldrugstrategy.gov.au/internet/drugstrategy/publishing.nsf/Content/55FEF3DF7E89405FCA257BB0007DF141/$File/FASD-2012-Monograph.pdf>.

House of Representatives Standing Committee on Social Policy and Legal Affairs. Commonwealth of Australia. FASD: The hidden harm, Inquiry into the prevention, diagnosis and management of Fetal Alcohol Spectrum Disorders. (November 2012). Retrieved from <www.aph.gov.au/parliamentary_business/committees/house_of_representatives_committees?url=spla/fasd/report.htm>.

Western Australia FASD Model of Care Implementation Plan: <www.healthnetworks.health.wa.gov.au/modelsofcare/fetal_alcohol_spectrum_disorder.cfm> and Model of Care report (PDF 1.1 MB) <www.healthnetworks.health.wa.gov.au/modelsofcare/docs/FASD_Model_of_Care.pdf>.

The Federal Government announced the release of targeted funding directed towards FASD: <www.nhmrc.gov.au/grants/apply-funding/fetal-alcohol-spectrum-disorder-targeted-call-research>.

 

1. Most of what is known about the effect of alcohol exposure in utero comes from research on children with FAS, which falls at the more visible and severe end of the spectrum of disorders, possibly because it is easier to detect than the range of other disorders within in the FASD spectrum.