Family Quality of Life While Waiting for Government Funded Applied Behaviour Analysis Services for Children with ASD

Background:  Families of children with autism spectrum disorder (ASD) often experience high levels of stress related to demands on their time, the health and behavioural needs of their child with ASD, and the health of other members of the family. It is important to investigate their family quality of life (FQOL) in order to understand how best to serve the entire family, not just the child.

Objectives: The purpose of this study was to examine the FQOL of families with a child with ASD who were waiting for government funded Applied Behaviour Analysis Services in Ontario, Canada.

Methods:  An adapted version of the FQOL Survey for main caregivers of people with intellectual or developmental disabilities (Brown et al., 2006) was sent out to families with a child or adolescent on the Durham Applied Behaviour Analysis (ABA)-Based services for Children and Youth with ASD waitlist. The adapted FQOL Survey consisted of six sections from the original instrument, including About Your Family, Health of the Family, Support from Disability Related Services, Leisure and Recreation, Community Interaction, and Overall Family Quality of Life. Parents were also asked a series of open-ended questions related to their community interactions, recreation and leisure, and overall FQOL. Of the 484 surveys sent out, 147 were returned (31% response rate); 123 (84%) of the returned surveys were for families with a child less than 12 years of age.

Results: The average age of the children in this sample was 7.3 years (19% female) and the average age at diagnosis was 5 years. Parents reported that they had been on the ABA waitlist for an average of 8.6 months. The most influential factors for 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. Parents reported that there were several disability-related services that their children were in need of, but that they were unable to access. Results also indicated that parents of children with ASD were living with a variety of chronic physical and mental health conditions (e.g. depression, Fibromyalgia). Parents expressed a desire to be able to take their child out in the community without a “meltdown,” and particularly mentioned the social isolation they experienced.

Conclusions:  These results indicate that parents feel that access to disability-related services for their child with ASD is very important for FQOL; however, many families are not accessing these essential services due to long wait-times, financial concerns, and their child being expelled from various programs due to behavior challenges. These results also demonstrate that family members of children with ASD may experience high levels of physical and/or mental health concerns, which negatively impacts overall FQOL. Future research and programming should target program accessibility and overall family health in order to better serve families of children with ASD.