Using a model of family adaptation to examine outcomes of caregivers of individuals with autism spectrum disorder transitioning into adulthood

Abstract

Background The study examined the burden of caring for individuals with autism spectrum disorder (ASD) transitioning from high school and factors associated with burden derived from the Double ABCX model of family adaptation (i.e., autism symptom severity, problem behaviors, pile-up life demands, personality traits, social support, cognitive appraisals, and coping strategies). In particular, we were interested in the potential association between the “big 5” personality traits and burden. Method Participants (N = 105) were caregivers of individuals with ASD within two years pre- or post-graduation from high school. Results Primary caregivers reported moderate levels of burden. As hypothesized, burden was significantly associated with both child (i.e., increased autism symptom severity and problem behaviors) and caregiver characteristics (i.e., greater neuroticism, lower levels of extraversion, conscientiousness, agreeableness, and social support, and increased use of threat appraisals and passive-avoidance coping strategies). Using multiple regression, increased child behavior problems and increased caregiver use of passive-avoidance coping were identified as independent predictors of burden. Passive-avoidance coping mediated the relationship between caregiver burden and individual personality traits (i.e., neuroticism, extraversion, conscientiousness). Conclusions The results suggest that proximal variables, such as caregivers’ use of maladaptive coping strategies, explain the associations between burden and personality. Suggestions for interventions to relieve burden are discussed.