Quality of life in families of children with autism spectrum disorder: considerations of risk and resilience

Having a family member with a neurodevelopmental disorder (NDD) has significant implications for family functioning. Overall, research findings demonstrate that families of children with NDDs are less satisfied with their quality of life (QOL), across domains, than families of typically developing children, and that families of children with Autism Spectrum Disorder (ASD) are even less so. Although families of children with ASD are significantly at-risk, most research has included families of children with varied conditions, and has not examined predictors of family quality of life (FQOL) within specific NDD populations. This research gap, along with rising ASD awareness and prevalence, provides a strong rationale for devoting attention to this group specifically, and addressing the limitations that exist within this work. This research utilized a mixed-methods design to examine QOL among 84 families of children and adolescents (aged 6-18 years) with ASD living in British Columbia, and addressed three aims. First, the role of child characteristics, including adaptive functioning and behaviour problems, was examined in relation to FQOL. Adaptive functioning, and specifically daily living skills, emerged as a significant predictor of FQOL satisfaction, after accounting for behavioural and demographic characteristics, including child age, gender, perceived disability severity, and behavioural problems, as well as family income. Furthermore, there were significant differences across each domain of FQOL when groups were separated by daily living skill functioning level (‘low,’ ‘moderately low,’ and ‘adequate’). Second, the relation between endorsed family resilience processes, based on Walsh’s (2006, 2012) model, and FQOL satisfaction was examined. This revealed that greater endorsement of the ‘family connectedness’ and ‘family communication and problem solving’ processes significantly predicted FQOL when child and family demographic characteristics were accounted for. Finally, a subset (n = 15) of caregivers, representing both high and low levels of FQOL satisfaction, participated in a qualitative interview, during which they shared their perceptions of FQOL, both generally and in relation to specific topics, elaborated on service delivery experiences, and reflected on sources of family resilience. The findings are discussed in light of previous research, and the associated practice implications, as well as opportunities for future research, are highlighted.