Responding to the Unique Complexities of Fetal Alcohol Spectrum Disorder

Abstract

Fetal alcohol spectrum disorder (FASD) is a multifaceted disability, characterized not only by brain- and body-based challenges, but also high rates of environmental adversity, lifelong difficulties with daily living, and distinct sociocultural considerations. FASD is one of the most common neurodevelopmental disabilities in the Western world and associated with significant social and economic costs. It is important to understand the complexities of FASD and the ways in which FASD requires unique consideration in research, practice, and policy. In this article, we discuss our perspectives on factors that distinguish FASD from other disabilities in terms of complexity, co-occurrence, and magnitude. We provide an overview of select literature related to FASD as a socially rooted disability with intergenerational impacts and multiple layers of stigma. These social issues are intertwined with notable experiences of adversity across the lifespan and high rates of co-occurring health concerns for individuals with FASD, all of which present unique challenges for individuals, caregivers, families, service providers, and policy makers. Understanding these factors is the first step in developing and implementing specialized initiatives in support of positive outcomes for individuals with FASD and their families. Future directions are proposed for advancing research, practice, and policy, and responding to the unique complexities of FASD.

Caregivers' experiences and perceptions of suicidality among their children and youth with fetal alcohol spectrum disorder

“…Caregivers spoke to the layered complexity of these experiences considering the COVID-19 pandemic and how the pandemic as a societal level concern further heightened their children's mental health concerns suicidality. The complex and unique experiences and vulnerabilities of individuals with FASD have been well-documented ( 6 , 7 , 9 ) and the findings of this study provide further evidence of the significant challenges individuals with FASD and their families experience in their daily lives. Caregivers spoke to the brain and body-based challenges of their children and youth (e.g., impulsivity, emotional reactivity, memory challenges), as well as how these challenges are often exacerbated based on their child's interactions in various social situations or circumstances (e.g., in school or among peers, with health care or mental health providers) which further heightened risk of suicidal thoughts and behaviors.…”

“…Individuals with FASD experience multifaceted brain- and body-based difficulties, ranging from physical health challenges to impairments in cognitive, behavioral, social-emotional, and adaptive functioning ( 5 ). Related to these challenges, and in the absence of adequate support, individuals with FASD may also experience complex life adversity such as school disruption, difficulties obtaining and maintaining employment, financial and housing instability, trouble with the law, and mental health and substance use concerns and disorders ( 6 , 7 ). Further compounding these biopsychosocial vulnerabilities, experiences of trauma and victimization are exceptionally common for individuals with FASD ( 8 , 9 ).…”

‘It's rewarding because I get the love’: Grandparents raising grandchildren with foetal alcohol spectrum disorder

“…A need for increased supports and targeted interventions for individuals with FASD that consider the needs, challenges and resources of the family system has been identified (Flannigan, Pei, et al, 2022). Recognizing that grandparent caregivers raising a child with FASD are an increasingly common (Martin et al, 2020) yet understudied population, we sought to reveal the lived experiences of these individuals.…”

“…Foetal alcohol spectrum disorder (FASD) is a diagnostic term that refers to a range of impairments in physical, behavioural, emotional, adaptive and neurocognitive functioning resulting from prenatal alcohol exposure (Cook et al, 2016). The estimated prevalence of FASD in Canada is approximately 4%, making FASD more common than other developmental disabilities combined (Flannigan et al, 2018). Individuals with FASD may face significant adverse outcomes because of these impairments, though a stable and nurturing home environment can be an important protective factor (Petrenko et al, 2019).…”

“…Based on recent Canadian data utilizing the National FASD Database, between 19% and 24% of individuals with FASD reside with their biological families, with a substantial portion of individuals residing in other living situations, such as with other family members, foster caregivers, adoptive caregivers or group home settings (Burns et al, 2021; Flannigan, McMorris, et al, 2022; McLachlan et al, 2020). Insight into the experiences of these caregivers is critical, given the high prevalence of FASD, the intergenerational impacts of prenatal alcohol exposure (Flannigan, Pei, et al, 2022) and the unique challenges faced by caregivers raising their grandchildren (e.g. Hayslip et al, 2019; Novak‐Pavlic et al, 2022).…”