Facts about foetal alcohol spectrum disorder (FASD)

Alcohol use during pregnancy is a significant public health issue warranting more attention. Prenatal alcohol exposure can cause lifelong disabilities to a child in varying degrees. Prenatal alcohol exposure affects not only the individual but also their family and the society. Even a small amount of alcohol at any time during the pregnancy can potentially harm the developing foetus, and heavy drinking or misuse of alcohol during pregnancy is especially harmful to foetal development.

Foetal alcohol spectrum disorder (FASD) is a non-diagnostic umbrella term that refers to a broad spectrum of effects associated with prenatal exposure to alcohol. FASD includes the clinical diagnosis of foetal alcohol syndrome (FAS) and the conditions of alcohol-related birth defects (ARBD) and alcohol-related neurodevelopmental disorder (ARND). A criterion for the conditions of ARBD or ARND is a confirmed history of alcohol exposure during pregnancy.

FAS represents individuals severely affected by prenatal alcohol exposure. A diagnosis of FAS typically requires the confirmation of prenatal alcohol exposure, although the diagnosis can also be given without it. The FAS diagnosis also requires the presence of outward signs such as characteristic facial features (for example, smooth philtrum, thin upper lip, small palpebral fissures), evidence of prenatal and/or postnatal growth deficiency, and central nervous system abnormalities (for example, structural brain abnormalities such as small head size or functional impairments including cognitive deficits such as learning or memory impairments, or behavioural deficits such as attention or impulse control deficits) (Hoyme et al., 2016).

FASD is often referred to as a hidden disability, because not all individuals exposed to alcohol during pregnancy are born with FAS or present the outward signs of prenatal alcohol exposure. However, the invisible brain impairments can cause many challenges in everyday life. In addition, the typical gap between the chronological age and developmental age creates challenges, as an individual exposed to alcohol during pregnancy may not be able to perform at the expected level.

The effects of prenatal alcohol exposure are influenced by several factors including the frequency and quantity of alcohol consumed during pregnancy and the developmental timing in which alcohol exposure occurs. Thus, the effects of prenatal alcohol exposure can vary individually. Some individuals exposed to alcohol during pregnancy may show mild symptoms such as milder behavioural regulation impairments. At the other end of the spectrum are severely affected individuals with impairments in a range of developmental areas such as learning, memory, behaviour, or social interactions, or individuals with intellectual disability.

Individuals exposed to alcohol during pregnancy, especially those born to mothers who misuse alcohol, can also be at risk of other prenatal risks such as tobacco smoking, use of other substances including illicit drugs, and poor nutrition. Furthermore, early life adversities such as parental substance misuse, mental health problems, interparental conflicts, or neglect of care may endanger the childhood development of those exposed to alcohol during pregnancy (Flannigan et al., 2021).

Figure 1 illustrates the broad spectrum of difficulties and impairments that can be common among individuals with FASD and can affect an individual throughout their entire lives. Individuals with prenatal alcohol exposure can also face other challenges in life not described in figure 1, including inappropriate sexual behaviours, unemployment, trouble with the law, and drug and alcohol use problems (Rangmar, et al., 2015; Pei et al., 2018).

There are no universal, globally used, diagnostic guidelines for FASD. Instead, there are various, slightly different, diagnostic guidelines for diagnosing conditions within the FASD spectrum. The diagnostic guidelines can include, for example, the 4-Digit Diagnostic Code System developed at the University of Washington or the Clinical Guidelines for Diagnosing FASD, issued by the Institute of Medicine (IOM) (since 2015 the National Academy of Medicine in the United States). The use of diagnostic guidelines varies across the Nordic countries, with different diagnostic criteria.

Although the Nordic countries use different diagnostic guidelines, they do commonly apply the International Classification of Diseases (ICD) maintained by World Health Organization. The ICD is a diagnostic classification system for the clinical setting. With respect to FASD, the ICD classification lists a diagnostic code for FAS (Q86.0 in the 10^th version) but no other FASD-specific codes are available. Other diagnostic codes within the ICD classification system can be employed to diagnose conditions the child exhibits, but there is no consensus across the Nordic countries on the codes used.

The variation in the use of diagnostic guidelines and diagnostic codes makes it difficult to establish comparable and accurate estimates of the prevalence of FASD in the Nordic countries. Attempts have been made to estimate the prevalence of FASD. In a systematic review and meta-analysis, the prevalence for FASD per 10,000 population was estimated to vary from 70/10,000 in Iceland to 360/10,000 in Denmark (Lange et al., 2017). However, the prevalence estimates have limitations, so they should be interpreted with caution.

Despite these limitations, the current prevalence estimates of FASD are likely to be underestimated: many children are not diagnosed or are misdiagnosed with other disorders. For example, in a study of adopted youth and youth in foster care, nearly 87 percent of the youth meeting the criteria for FASD had never been previously diagnosed or had been misdiagnosed (Chasnoff et al., 2015).

As shown in table 2, the prevalence estimates of FASD exceed those of another known developmental disorder such as Down syndrome.

(¹Lange et al., 2017; ²Popova et al., 2017; ³Dansk Cytogenetisk Centralregister, n.d.; ⁴Folkehelseinstituttet, n.d.; ⁵WHO Regional Office for Europe, 2021)

NB! The data by ¹Lange et al. (2017) and ²Popova et al. (2017) should be interpreted with caution, for the data is based on small, older studies that may not be representative of the countries’ situation today.

Individuals with FASD require support from a range of services throughout life. Hence, FASD contributes to significant costs in societies. The direct costs include healthcare, child welfare services, social services, special education, and law enforcement. The indirect costs can stem from productive losses due to increased morbidity and productivity losses of caregivers of children with FASD (Greenmyer et al., 2018).

As with the prevalence estimates of FASD, there is also a lack of estimates of FASD-related costs in the Nordic countries. A Swedish study has estimated the annual costs of FAS in Sweden to be approximately 1.6 billion euros with a prevalence estimate of FAS of 0.2 percent in the Swedish population. However, the costs are likely to be higher if costs related to the whole FASD spectrum are considered (Ericson et al., 2017).

Studies from outside the Nordic region have also shown significant FASD-related costs. The results of a review analysing studies from Canada, the United States, Sweden, and New Zealand showed that the annual FASD-related costs would be approximately 23,000 US dollars per child and 24,000 US dollars per adult (Greenmyer et al., 2018). With the current prevalence estimates, direct and indirect FASD-related costs could be expected to be millions of euros every year, exceeding the costs of, for example, autism (Popova et al., 2011).

Although the estimates of FASD-related costs come mainly from countries outside the Nordic region, these studies nevertheless provide an insight into the economic burden that FASD can cause in a society.

There is no cure for FASD, but with early identification, diagnosis, continuous services, and support for individuals with FASD and their families, there is potential to improve the life of the affected and to prevent the development of adverse long-term consequences. Early and sustained efforts can reduce associated costs, and these efforts can also help to reduce the risk of future pregnancies that carry the possibility of prenatal alcohol and/or other substance exposure.