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

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 needs-based service provision as youth with FASD transition to adulthood and beyond.