Quality of Life of Families with a Child with ASD on an Applied Behaviour Analysis Service Waitlist

Background: Family Quality of Life (FQOL) encompasses the physical health, psychological well-being, and social relationships of the entire family. Families of children with ASD often experience extremely long wait-times for disability related services, social isolation, and stress related to the often difficult behaviour of the child with ASD; and this can negatively affect quality of life for these families. It is important to fully understand these challenges to understand how to best support families of children with ASD.

Objectives: The purpose of this study was to investigate the quality of life of families with a child 0-18 years with ASD currently waiting for government funded Applied Behaviour Analysis (ABA) services in the Durham Region of Ontario, Canada.

Methods: All families with a child 0-18 years with ASD on the Durham ABA waitlist (n= 484), were mailed a survey that consisted of six sections of the Family Quality of Life Survey: Main caregivers of people with intellectual or developmental disabilities. Specifically: about your family, health of the family, support from disability related services, leisure and recreation, community interaction, and overall family quality of life were included. In addition to the FQOL questions, parents were asked to report basic demographic information about their child and their child’s diagnosis. A self-addressed stamped envelope was included in the envelope along with a cover letter with instructions.

Results: Five surveys were returned to sender, and 151 surveys were returned completed (32% response rate).The average age of the children in this sample was 7.3 years (19% female) and the average age at diagnosis was 5 years of age. Parents also reported that they had been on the ABA waitlist for an average of 8.6 months and 75% live in a small city or small town. 50% reported that the mother was the primary caregiver for the child with ASD and a further 24% indicated that both the mother and father were the primary caregivers and 81% reported two-parent homes. Only 60% of respondents were satisfied or very satisfied with the health of their family, with 71% reporting physical and/or mental health concerns for their family. 64% indicated that there were disability-related services that their child needed that they were not currently accessing. When asked how important to their family’s quality of life the disability-related support services for their child with ASD were, 92% reported that the services were very important or quite important.

Conclusions: Positive developmental outcomes for children with ASD are the result of numerous factors including the overall quality of life of the family. These results indicate that parents feel that access to disability-related services for their child with ASD is very important for their FQOL; however, many families are not accessing these essential services. These results also demonstrate that family members of children with ASD may incur high levels of physical and/or mental health concerns. Future research and programming should target program accessibility and overall family health in order to better serve families of children with ASD.