Understanding the Role of Formal and Informal Support Resources for Parents of Children with Autism Spectrum Disorder

This research examines the extent to which parents of children with autism spectrum disorder (ASD) perceive support resources to be available, accessible, and/or effective in supporting their needs. A focus on the impact of the COVID-19 pandemic in the availability and effectiveness of service delivery is included. A total of 35 parents in Ontario, Canada with a child aged 6-17 with ASD completed an online survey responding to questions about involvement in ASD services, use of formal and informal supports, important support needs, which needs were being met, and perceptions of unmet needs, all which were thematically analysed. The analysis demonstrates that parents experience multiple barriers in accessing supports, particularly from formal sources. Further, the barriers were heightened during the pandemic particularly in relation to the multiple role responsibilities that parents had to take on due to a discontinuity of support provision. Most of these parents put their own support needs aside to focus on their child, with the support their child receives directly relating to the ability to attend to their own needs. Parents identified challenges related to uncertain funding, limits of a one-size-fits-all model of support, and lengthy waitlists. Recommendations for family-centred care and the need for service coordinators to work with families to assist in navigating the complex support system are provided.