Social Participation Experiences of Families Raising a Young Child With Autism Spectrum Disorder: Implications for Mental Health and Well-Being

Importance: Social participation (SP) is an important facilitator of positive mental health for children and families. Children are dependent on their families to mediate SP, yet families of children with autism spectrum disorder (C-ASD) seemingly limit SP because of behavioral and functional challenges in community environments. The resulting isolation can affect the child's and the family's mental health.Objective: To distill the essence of everyday SP experiences in the community of families raising C-ASD.Design: Data collected via in-depth, semistructured interviews with a purposive sample and analyzed in the phenomenological tradition. Setting: Community. Participants: We recruited seven families with English-speaking parents (ages 18-64 yr) raising one C-ASD (age 2-8 yr). Families with more than one C-ASD or those whose C-ASD was diagnosed with complex medical condition or a neurological or genetic disorder were excluded.Results: The essence of experiences of SP emerged in the form of three themes depicting the mismatch between societal expectations for SP and families' experience: (1) "the struggle," (2) "it's hard to feel like you belong," and (3) what we "have to do."Conclusions and Relevance: As a collective, families expressed desire for everyday community SP and could do so only in select environments with core groups. The findings, as interpreted through the lens of mental health promotion, reveal opportunities to reduce barriers and to promote meaningful family SP so as to facilitate positive mental health and well-being through the transactional intersecting characteristics of the child with ASD, the family, and the community.