McLachlan, K., Flannigan, K., Temple, V., Unsworth, K. and Cook, J.L. (2020), Difficulties in Daily Living Experienced by Adolescents, Transition-Aged Youth, and Adults With Fetal Alcohol Spectrum Disorder. Alcohol Clin Exp Res, 44: 1609-1624. https://doi.org/10.1111/acer.14385
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 needs-based service provision as youth with FASD transition to adulthood and beyond.
Graphical Abstract
This study evaluated everyday difficulties in a large group of adolescents, transition-aged youth, and adults, with PAE/FASD at the time of their diagnostic assessment in Canada. Results indicated that they experienced a range of substantial and complex difficulties signaling a high level of needs. Findings underscore the importance of ongoing assessment of abilities and difficulties, and provision of functional and needs-based services, as children and youth with FASD transition to adulthood and beyond, in order to support healthy and positive outcomes.
I’m disappointed not to see a mention of vulnerability! This affects their lives at every turn as a teen and adult. It requires us as parents to step in every minute of the day as they are convinced this person is a boyfriend ( sexual predator) friend ( user). It puts parents in direct confrontation with our children/adults who can be so easily used.
Really good point Victoria. Thank you for highlighting this area and the risk it poses to the teen/adult and the complexity it can create for the parent/child relationship.