Difficulties in Daily Living Experienced by Adolescents, Transition‐Aged Youth, and Adults With Fetal Alcohol Spectrum Disorder

Abstract

Background: Individuals with fetal alcohol spectrum disorder (FASD) experience a range of problems in their cognitive, affective, and physical functioning following prenatal alcohol exposure (PAE), in addition to multiple complex difficulties in daily living that impact well-being. Using the Canadian National FASD Database, we sought to profile a range of difficulties in daily living, along with risk factors, in a large cross-sectional cohort of adolescents, transition-aged youth, and adults with PAE, of which a subset was ultimately diagnosed with FASD. Methods:We summarized data for 9 current difficulties in daily living reported at the time of diagnostic assessment for 726 individuals with PAE assessed at 26 FASD diagnostic clinics across Canada, including 443 adolescents (12 to 17 years), 135 transition-aged youth (18 to 24 years) and 148 adults (25 to 60 years). Difficulties included problems related to school disruption, employment, independent living needs, supportive or sheltered housing, legal problems with victimization, legal problems with offending, incarceration, alcohol misuse, and other substance misuse. Risk factors included age, gender, living placement, postnatal trauma, and neurodevelopmental impairment.Results: Across the full PAE sample, adolescents, transition-aged youth, and adults presented with high rates of difficulties in daily living, including independent living support needs (63%), alcohol misuse (38%), other substance misuse (46%), employment problems (37%), legal problems with offending (30%), assisted or sheltered housing (21%), school disruption (18%), legal problems with victimization (4%), and incarceration (3%). Difficulty rates were similar for those with FASD irrespective of diagnosis (e.g., with or without sentinel facial features), but rates greater for adults, and those with low overall intellectual functioning (IQ < 70). Controlling for age and IQ, cumulative difficulty was independently associated with gender, living placement, and neurodevelopmental impairment.Conclusions: Adolescents, transition-aged youth, and adults with FASD experienced a range of substantial and complex difficulties at the time of their diagnostic assessment, signaling a high level of service needs. These findings underscore the importance of developmentally informed assessment continued through childhood, as well as ongoing functional and needsbased service provision as youth with FASD transition to adulthood and beyond.

A Systematic Review of Interventions to Improve Mental Health and Substance Use Outcomes for Individuals with Prenatal Alcohol Exposure and Fetal Alcohol Spectrum Disorder

“…Indeed, the transition to adulthood seems to be a particularly vulnerable time for individuals with FASD (Burnside and Fuchs, 2013; Coons‐Harding et al, 2019), with mental health and substance use problems especially relevant for this age group (Lynch et al, 2017). There is a critical and timely need for increased research and targeted service delivery during this life stage to provide wraparound supports for individuals with FASD who may otherwise lack resources and supports to promote healthy outcomes (McLachlan et al, 2020; Pei et al, 2019).…”

“…Individuals with FASD also experience high rates of suicidality (Landgren et al, 2019;O'Connor et al 2019;Streissguth et al, 1996), which has been linked to comorbid mental health and substance use problems, impaired emotion regulation, history of trauma, financial stress, and a lack of stable social support (Dirks et al, 2019;Huggins et al, 2008;Temple et al, 2019). PAE is also associated with the development and high rates of substance use problems later in life (Dodge et al, 2019;Goldschmidt et al, 2019;McLachlan et al, 2020;Streissguth et al, 1996Streissguth et al, , 2004Yates et al, 1998).…”

“…This disruption can lead to a biological vulnerability that is believed to influence mental health (Hellemans et al, 2010) and a propensity toward substance use (Chotro et al, 2006). Environmental influences may further compound this biological vulnerability, such as the lifelong adversity experienced among people with FASD (Henry et al 2007; McLachlan et al, 2020; Price et al, 2017; Streissguth et al, 1996, 2004). Experiences of adversity may contribute to problems with attachment, socio‐emotional functioning, mental health, and substance use (Fagerlund et al, 2011; Koponen et al, 2009; Streissguth et al, 2004).…”

“…F ETAL ALCOHOL SPECTRUM disorder (FASD) is a lifelong brain-and body-based disability resulting from prenatal alcohol exposure (PAE), affecting up to 5% of people in North America (Popova et al, 2019;Roozen et al, 2016). Individuals with FASD experience a range of impairments across physical, cognitive, social-emotional, and behavioral functioning and, without adequate or appropriate supports, are at risk of experiencing an array of adverse outcomes throughout the life course (McLachlan et al, 2020;Streissguth et al, 1996Streissguth et al, , 2004. FASD is a heterogeneous disability and no 2 individuals present with the same pattern of needs, though most will require ongoing support with daily living (Doyle et al, 2019).…”

Comparing outcomes of children and youth with fetal alcohol spectrum disorder (FASD) in the child welfare system to those in other living situations in Canada: Results from the Canadian National FASD Database

“…Other problems among the FASD population include difficulties in the educational system, mental health concerns, suicidal thoughts and behaviour, substance use issues, legal system, unemployment and homelessness (Badry, Walsh, Bell, & Ramage, 2018;McLachlan, Flannigan, Temple, Unsworth, & Cook, 2020;Wyper & Pei, 2016).…”