Fetal alcohol spectrum disorders: Current issues in awareness, prevention and intervention
What is the impact of FASD? Primary and secondary symptoms
Prenatal alcohol exposure can have a number of very damaging impacts on the developing fetus including birth defects, facial anomalies and significant brain damage. These impacts can be thought of in terms of primary and secondary symptoms (Streissguth et al., 2004).2
Primary symptoms are defined in terms of:
inherent functional problems associated with the impact on the central nervous system of having been exposed to alcohol. (Hume, Rutman, Hubberstey, Lentz, & Van Bibber, 2009, p. 6)
Secondary symptoms refer to the range of social, emotional and vocational consequences that arise over time:
as a function of chronic poor fit between the person and his or her environment. (Hume et al., 2009, p. 6)
Changes to facial features: Fetal alcohol syndrome (FAS) and partial fetal alcohol syndrome (pFAS) (but not the other disorders falling under the FASD umbrella) are characterised by facial anomalies. These include shorter palpebral fissures (the horizontal opening between the upper and lower eyelids) according to standard measures, a smooth philtrum (indistinct or lacking a vertical groove on the upper lip) and thin vermillion border (thin upper lip). It is important to note that these features do not occur in all children affected by prenatal alcohol exposure. They only occur in a small proportion of all alcohol-exposed births (O'Leary, 2002). Assessment of these facial features requires specialised training and many of these facial features become harder to detect as the child grows, even when they are present at birth (Spohr, Willms, & Steinhausen, 2007).
Other physical changes: Other physical abnormalities may or may not be present as a result of prenatal alcohol exposure. These include growth retardation, and defects of the eyes, teeth, skeleton and organs such as the heart and kidneys (Hofer & Burd, 2009).
Changes in brain functioning: Depending upon a number of factors, alcohol exposure may result in a smaller brain volume, and widespread damage to many areas of the brain (Lebel, Rousotte, & Sowell, 2011). As well as changes to the brain's structure, there can also be changes to the way the brain functions. These neuropsychological difficulties may be extensive and may seem similar to other neuropsychological difficulties such as ADHD but can be distinguished by specialised assessment (Kodituwakku, 2007; Mattson, Crocker, & Nguyen, 2011).
Cognitive and language difficulties: These include:
- difficulty with executive functioning - the coordinated planning and execution of cognitive functions (Kodituwakku, 2007);
- memory difficulties (Kodituwakku, 2007);
- language difficulties, including disorders of pragmatic language (i.e., being able to follow rules of conversation and adjust language according to the needs of listeners) (Carmichael Olson, King, & Jirikowic, 2008);
- delays in gross (larger movements, e.g., crawling, jumping, running) and fine (smaller movements, e.g., picking things up, tasting and feeling things) motor functioning (Kalberg et al., 2006);
- disordered attention and activity levels (Mattson et al., 2011); and
- delayed attainment of specific academic skills (Rasmussen & Bisanz, 2009).
In addition, overall IQ may be lower, although this is not always the case (Davis, Gagnier, Moore, & Todorow, 2013).
The combination of symptoms that children can experience can be complex. It may be more helpful to think in terms of the profound effect that these difficulties have on the daily lives of children. Examples of these include:
- memory problems (trouble learning and retrieving new information; remembering only inconsistently);
- language difficulties (may be talkative but understand little of conversation, especially when non-literal language is used such as a metaphor; has little understanding of social conventions of conversation such as taking turns; may have stereotyped conversation; may repeat instructions well but be unable to enact them);
- slower cognitive pace (can only understand instructions if given very slowly, may miss pieces of information);
- attention and organisation problems (slow to grasp new tasks, easily distracted, slow to move from one task to another);
- trouble in translating information gained from one modality or sense into actions and behaviour;
- trouble applying learning from one situation to another (repeating the same mistakes, unable to predict consequences, difficulty in applying a rule to a different social situation);
- trouble thinking in abstract (setting goals, planning time, money), trouble in seeing similarities or differences; and
- impulsive behaviour (acts before he/she thinks). (Adapted from NOFASD, n. d.; O'Leary, 2004; Russell Family Fetal Alcohol Disorder Association, n. d.).
For more information, see the NoFASD fact sheet FASD Characteristics Across the Lifespan <www.nofasd.org.au/resources/fact-sheets> and the Western Australia Department of Communities fact sheet FASD: Information for People With Children and Families (PDF 538 KB) <www.communities.wa.gov.au/Documents/Parents%20Families%20Education%20Care/CFS-FASD-foetal-alcohol-spectrum-disorder-service-providers.pdf>.
These characteristics mean that traditional methods of education and discipline may not be as effective for young people with FASD. Education, child welfare and justice systems need to be aware of the implications of these difficulties for service design.
Without understanding and appropriate responses, the primary symptoms outlined above can lead to a number of secondary difficulties. These reflect poor social, educational and vocational outcomes arising from the chronic mismatch between the young person and their environment.
These difficulties include:
- disrupted schooling (Streissguth et al., 2004);
- trouble with the law (Streissguth et al., 2004; Temple, in Wheeler, Kenney & Temple, 2013);
- legal confinement (e.g., detention, jail, psychiatric care) (Streissguth et al., 2004);
- inappropriate sexual behaviour (Streissguth et al., 2004);
- vulnerability to alcohol or drug abuse (Streissguth et al., 2004; Temple, in Wheeler, et al., 2013); and
- comorbid (or co-occurring) mental health issues (O'Connor & Paley, 2009; Temple, in Wheeler, et al., 2013).
Secondary symptoms arise over time as a result of interaction between FASD impairments, environmental risks and protective factors (O'Leary, Peadon, Breen, & Elliot, 2012). Adaptive functioning is one of the key predictors of risk of developing secondary symptoms, with higher adaptive functioning resulting in lower overall risk (Clark, Lutke, Minnes, & Oullette-Kuntz, 2004). Streissguth and colleagues (2004) found that the risk for secondary symptoms can be reduced with appropriate and timely support and time spent in a stable caregiving household. They concluded that:
one of the strongest correlates of adverse outcomes is lack of an early diagnosis; the longer delay in receiving the diagnostic information, the greater the odds of adverse outcomes. (Streissguth et al., 2004, p. 234)
Taken together, these findings highlight the need to support caregivers, including foster carers, to ensure predictable, on-going caregiving relationships and to assist with early and accurate diagnosis.
2. Although the term “symptoms” will be used here as many now prefer to use this term, Streissguth and colleagues originally introduced the term “disabilities”.