Abstract:
Objective:
There is increasing recognition that autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) are associated with significant costs and burdens. However, research on their impact mostly focused on the caregivers of young children; few studies have examined caregiver burden as people transition into adolescence and young adulthood, and no one has compared the impact of ASD to other neurodevelopmental disorders (e.g. ADHD).
Method:
We conducted an observational study of 192 families caring for a young person (aged 14 to 24) with a childhood diagnosis of ASD or ADHD (n=101 and 91, respectively) in the UK. A modified stress-appraisal model was used to investigate the correlates of caregiver burden as a function of family background (parental education), primary stressors (symptoms), primary appraisal (need) and resources (use of services).
Results:
Both disorders were associated with a high level of caregiver burden, but it was significantly greater in ASD. In both groups caregiver burden was mainly explained by the affected young person’s unmet need. Domains of unmet need most associated with caregiver burden in both groups included depression/anxiety and inappropriate behaviour. Specific to ASD were significant associations between burden and unmet needs in domains such as social relationships and major mental health problems.
Conclusions:
Adolescence and young adulthood are associated with high levels of caregiver burden in both disorders; and in ASD the level is comparable to that reported in people caring for those with a brain injury. Interventions are required to reduce caregiver burden in this population.