Exploring the health of families with a child with autism

Abstract

Families provide a critical context for the overall growth and development of a child. The health of a family is foundational to the everyday life in which a child and family can flourish. For families raising a child with autism, the chronic, intense nature of everyday life affects family health in part due to increased parental stress and potential centralization of the child with autism in family functioning. The present study sought to understand how families of children with autism perceived and experienced their own family health and to identify what factors and processes families identified as contributing to their health. Researchers conducted semi-structured interviews with 16 families with a child with autism ages 2-17. Interviews occurred in person and with all members present to the extent possible based on parental and child choice. Sixteen mothers, eight fathers, and 32 children (18 with autism) participated. Interviews were about the family as a unit and conducted in a casual dialogue style. Interviews were audiorecorded and transcribed verbatim. Researchers analyzed data using inductive content analyses to generate results. Findings suggest families experience family health as a journey grounded within family identity and marked by five themes: connection, balance, the centralization of autism, stress, and support systems. Findings contribute relevant considerations for service providers working to support children with autism and their families. Lay abstract Families are important for the overall growth and development of a child. The health of a family is foundational to the everyday life in which a child and family can blossom. Families with a child with autism have a family life that has challenges for many reasons including that parents can be stressed from trying to figure out how to be a good parent for their child with autism. We wanted to know two things: (1) what is family health for families of a child with autism and (2) what affects families trying to be their healthiest. We wanted to know the answers to these questions from families themselves, including parents (not just moms), children, and children with autism, because they are the best experts. We talked to 16 families including 16 mothers, 8 fathers, and 32 children (18 with autism). Families shared that being a healthy family was a journey with ups and downs and that families were not always perfect. It helped when families knew about themselves as a family such as knowing what they liked and did not like to do, and knowing what the different people in the family needed. Families said that what helped and influenced their family’s health was being together, keeping their days not too busy, stress, autism itself, having helpers like friends, grandparents, therapists, and having money to pay for services. We hope that knowing these answers will guide service providers of people with autism to think about healthy families from a holistic perspective.