Experiences of Family Enmeshment and Emotional Autonomy Among Adolescents Caring for Siblings with Autism

Family caregiving affects many families in the United States, including new parents, adult children caring for elders, and family members caring for relatives with temporary or permanent healthcare needs. While previous studies have focused on various aspects of caregiving, little research attention focuses on adolescent caregivers. The role of caregivers within a family may include assistance with daily tasks such as bathing, dressing, feeding, and medication management, and some tasks and expected time commitments may be inappropriate for adolescents and hinder their socio-emotional development. When care recipients have a condition that requires an elevated level of care, such as autism spectrum disorder, the burden on adolescent caregivers may be exacerbated. Guided by Family Systems Theory, this study explores how the emotional boundaries of adolescent caregivers are affected when their sibling has been clinically diagnosed with autism. Potential participants were identified through social networks and interviewed in a semi-structured interview. Findings show that emotional boundaries were affected by the themes of individual actions and family support, partially aligning with our hypothesis that emotional autonomy and self-efficacy could impact caregivers’ emotional boundaries. Findings suggest that support-based intervention and public policies may mitigate enmeshed behaviors in families and relieve the caregiving burden for adolescents. Further research should aim to identify specific interventions and supports for adolescent caregivers, establishing appropriate boundaries around their caregiving tasks, meeting societal expectations by completing school, and providing support for longer-term personal goals, such as a career and family.