Foetal alcohol spectrum disorder (FASD) is an umbrella term for a highly prevalent and preventable spectrum of disorders caused by prenatal alcohol exposure. Foetal alcohol spectrum disorder consists of diagnoses of foetal alcohol syndrome (FAS), partial foetal alcohol syndrome (PFAS), alcohol-related neurodevelopmental disorder (ARND) and alcohol-related birth defects (ARBD). Characteristics of FASD include recognisable facial differences, intrauterine growth restriction or failure to thrive and deficits in neuropsychological development (Hoyme et al. 2016), which all have significant lifelong effects on mental and physical health, behaviour, educational achievements, employment, independent living, substance use and offending behaviour (Domeij et al. 2018; Landgren et al. 2019; McLachlan et al. 2020; Popova et al. 2021; Rangmar et al. 2015; Spohr & Steinhausen 2008; Temple et al. 2021). When referring to the sequalae related to an FASD diagnosis, a distinction between primary and secondary disabilities can be made. Primary disabilities refer to cognitive impairment in individuals with FASD. These disabilities can be measured by general intelligence, mastery of reading, spelling, math, and level of adaptive functioning, which represent the central nervous system consequences of the disorder (Streissguth et al. 1996).

Secondary disabilities refer to problems that occur as a result of primary disabilities and are not present at birth (Moore & Riley 2015; Streissguth et al. 1996). These can be prevented or improved with appropriate interventions and understanding (Streissguth et al. 1996). Previous research on secondary disabilities in FASD populations identified that conflict with the law (Kambeitz et al. 2019; McLachlan et al. 2019; Popova et al. 2021; Streissguth et al. 1996), mental health issues (Grant & Connor 2005; Huggins et al. 2008; Landgren et al. 2019; Pei et al. 2011; Popova et al. 2021; Spohr, Willms & Steinhausen 2007; Temple et al. 2021), alcohol and substance abuse (McLachlan et al. 2020; Streissguth et al. 1996, 2004), physical, sexual or verbal abuse (Kambeitz et al. 2019), educational achievement (Domeij et al. 2018; McLachlan et al. 2020; Streissguth et al. 1996, 2004) and foster or residential care placement (Kambeitz et al. 2019; McLachlan et al. 2020) is common. There is little information about the challenges and life outcomes in adult individuals with FASD compared to those without FASD. Previous literature on this topic focuses on individuals with FASD, which often include individuals with an FAS-specific diagnosis (Grant & Connor 2005; Huggins et al. 2008; Streissguth et al. 1996), without a comparison group. There is also little literature about long-term follow up of an FASD cohort with a focus on life outcomes, especially in comparison to individuals without FASD. Furthermore, research on this topic is lacking in South Africa, where the highest published prevalence rates of FASD have been reported globally. To date, the highest reported FASD prevalence in the world, has been estimated in the Western Cape Province of South Africa, at 310 per 1000 (31%) (May et al. 2022).

This study aimed to describe and compare the life outcomes of adults diagnosed with FASD in a 2001 prevalence study in the Emthanjeni Local Municipality in the Northern Cape Province of South Africa where a prevalence rate of 119.4 per 1000 (11.9%) was reported (Olivier 2017; Urban et al. 2008). We hypothesised that adults with FASD, which included a FAS or PFAS diagnosis specifically, would be less likely to complete secondary education (12th grade), less likely to be employed, more likely to have conflict with the law, have a higher incidence of health problems, less able to live independently, as well as experience more social problems. We will refer to individuals diagnosed with FAS or PFAS instead of FASD as during the prevalence study when the diagnoses were made, ARND and ARBD were not diagnosed. We therefore aim to provide contextual evidence that will address the presumptions made in our hypothesis and the gaps in current published evidence.

This study aimed to compare life outcomes of adults with and without FAS or PFAS. The majority of previous research on individuals with FAS did not have a control group to assess the differences in life outcomes and between peer groups (Freunscht & Feldmann 2011) with a high majority of their sample populations being adoptees or foster care patients or in assistant living environments (Freunscht & Feldmann 2011). Most participants with FAS or PFAS in this study’s cohort (66%) reported growing up with a family member, with 43% of individuals growing up specifically with only their biological mother or father. Individuals with FAS or PFAS were as likely to grow up in the foster care system or with non-relatives as those without FAS or PFAS. Having a diagnosis of FAS or PFAS increased the likelihood of having one or both parents’ deceased and decreased the likelihood to be in a relationship at the time of the study. This could be because of an increased likelihood of parental alcohol abuse and associated adverse physical and psychosocial consequences (Matzopoulos et al. 2014; Probst et al. 2018).

Clear differences between education level were found, with individuals with FAS or PFAS, being more likely to repeat grades, attend special needs classes or schools, miss school regularly and were less likely to complete their secondary school education. This is consistent with a previous study with a Swedish cohort where individuals with FAS were more likely to complete special education and/or primary school as their highest education level (Rangmar et al. 2015). This finding suggests that these individuals struggled to keep up with the available curriculums at school and emphasises the need for tailored support for individuals diagnosed with FAS or PFAS (Millians 2015; Millar et al. 2017). Furthermore, none of those in the FAS or PFAS group in this study successfully completed secondary school compared to 55% of the control group. When comparing this to the Swedish cohort where at least 45.7% of individuals diagnosed with FAS completed secondary education, our finding seems like an especially poor outcome. As only 55% of controls completed secondary school in our sample however, this is not as striking. An important factor contributing to lower academic achievement could be that the participants in our study fall within a low socioeconomic status cohort, which is associated with lower academic success (Chevalère et al. 2023) and the neurodevelopmental challenges faced by individuals in the FAS or PFAS group could further impact academic achievement (Lange et al. 2017). The secondary school dropout rate seems to be reflected in the high unemployment rate of this cohort. The high unemployment rate in the community could be linked to the community’s anecdotal report that low priority is placed on education, which also explains the high dropout rate in the control group. Learners might have little motivation to learn and stay in school because of the low priority placed on education from communities and families (Nortje 2017). Interestingly, no differences were found with regards to independent living, managing one’s own finances, employment status, or likelihood to receive government social relief grants.

This is inconsistent with previous literature in FAS populations (Freunscht & Feldmann 2011). It appears as if the true impact of a FAS or PFAS diagnosis was not necessarily depicted due to environmental factors of this study’s participants. Low socioeconomic status, lack of job opportunities, lack of academic achievement and the high level of unemployment across the entire sample (88%) suggest there might not be opportunities to thrive as they would be in other communities with more resources and access to services. No difference in health-related outcomes and reports of current physical violence or abuse by partners were found. A lack in difference between health-related outcomes is surprising, as individuals with FAS or PFAS have an exceptionally high frequency of adverse health outcomes (Popova et al. 2021) and have been shown to utilise health care services more regularly (Credé et al. 2011). It might be that a general lack of access to healthcare and not going to the local primary healthcare clinic or doctor as often had an impact on this finding. Something like depression will not be diagnosed if the individuals do not seek out treatment or know that they have symptoms of depression due to a lack of awareness or psychoeducation. Consistent with findings from Rangmar et al. (2015), no differences were found in outcomes related to criminal history or trouble with the law. Interesting to note was, that differences between the likelihood of stabbing or shooting someone else or being the victim thereof, were more likely in the FAS or PFAS group. This may allude to problems with aggression, impulse control and not understanding the consequences of actions that are often associated with FAS (Lange et al. 2018). In contrast to previous studies, no differences were found in alcohol and/or substance use behaviours, history of acquiring a head injury, experiencing seizures or birth problems or defects (Rangmar et al. 2015).

Our findings highlight the differences between adults with FAS or PFAS, and adults without FAS or PFAS in a South African rural community. To the authors’ knowledge, this study is the first of its kind comparing life outcomes and not merely reporting the frequency of these outcomes in a FAS or PFAS population. Adults with FAS or PFAS face specific challenges when compared to controls. However, our findings suggest that individuals with FAS or PFAS not only face their own unique challenges as persons with disabilities, but additionally need to combat the socio-economic challenges that impact all adults living in the same rural community, regardless of a FAS or PFAS diagnosis. In a community where the percentage of unemployment in the total sample is above 85%, with no differences between the persons with disabilities and controls, the needs of adults with FAS or PFAS are not only related to their disability, but also needs to be investigated in the socio-economic setting from a holistic perspective. The poor educational outcomes in the FAS or PFAS group highlight the failures of the education system in supporting persons with disability. More allowance must be made for special schooling, remedial education and the support of learners with special needs in the mainstream. Although this is not unique to persons with FAS or PFAS, we should be concerned about the lack of health and welfare services available to these individuals. They may need long-term care and their subjective evaluation of their ability to live independently cannot be taken at face value. In this rural and under-resourced community, there is no social safety net for persons with FAS or PFAS whose caregivers pass away or can no longer look after them. Policy makers should seriously consider the long-term needs of those affected by FAS or PFAS, especially given the high prevalence rate in this area.