Autism spectrum disorder: family quality of life while waiting for intervention services

Families of children with autism spectrum disorder (ASD) often experience high levels of stress; it is important to investigate the family quality of life (FQOL) to understand how to serve the entire family, not just the child. The purpose of this investigation was to determine: (a) how families with a child with ASD view their overall FQOL and (b) what aspects of everyday life have the greatest influence on the FQOL?

A survey designed to asses FQOL was mailed to all families (n = 454) of children with ASD (0–18 years) waiting for government-funded services. Results from 151 surveys were examined (31 % response rate). Descriptive on all variables, ordinal logistic regression, and t tests were used to analyze the data.

The most influential factors on FQOL were whether the child with ASD had a major health concern, whether the family’s needs were met by disability-related services, and whether there were opportunities to engage in leisure and recreation activities.

Families on waitlists experience challenges in FQOL influenced by the health of the family members; this is implicitly important for service agencies and providers. Future research should continue to explore how access to disability-related services impacts FQOL; and how these associations may be moderated by contextual factors such as socioeconomic status, health of child and family members, access and engagement in recreation, and severity of the child’s needs.