The Lived Experience of Functionality in Families with a Child Diagnosed with Autism Spectrum Disorder: An Interpretive Phenomenological Analysis

Raising a child with autism spectrum disorder can put a lot of strain on the family. Families with a child with autism often display elevated levels of enmeshment and low levels of family functioning. It has been argued that cohesion and enmeshment should be two separate constructs. It has also been argued that cohesion may look different for families with a child diagnosed with autism spectrum disorder. I utilized an interpretive phenomenological analysis to illuminate the lived experiences of family functioning and cohesion from the perspective of both the parent and sibling subsystem. Using qualitative semi-structured interviews, I interviewed 7 families consisting of the parents and at least one sibling over the age of 10 (N=22). Through the analysis, I identified seven major themes and 19 associated subthemes. The experience of family functioning was described by seven themes: (1) factors that contributed to caregiver burnout, (2) family cohesion, (3) prioritizing autism spectrum disorder, (4) relational patterns of support and communication, (5) external support, (6) active coping, and (7) positive impact of autism. The report that follows includes clinical implications for systemic family therapists.