The Influence of Parents and Researchers on Policy-Making for Children with Autism Spectrum Disorders in Canada

Background: In Canada, policy-making for children with autism spectrum disorders (ASD) has been singularly contentious — with parents organizing and even taking provincial governments to court to pursue public funding for new interventions. This determined advocacy has pushed ASD higher on the public agenda, posing a serious challenge for policy-makers who must consider the needs of all vulnerable children. Meanwhile, the role of researchers has been unknown in this mix.

Objectives: This qualitative study investigated the perspectives and experiences of parents, researchers and policy-makers to ascertain: the influences on the policy process for children with ASD, and the implications for improving outcomes for these and other children in Canada. 

Methods: Our sample comprised three groups of knowledgeable participants from regions across Canada: parents involved with community or advocacy organizations for children with ASD; researchers specializing in ASD within universities; and policy-makers responsible for ASD services within provincial governments. 36 semi-structured interviews have been completed (12 interviews per group, approximately 90 minutes per interview). Interviews have been recorded and transcribed. An interdisciplinary team has conducted qualitative data analysis using constant comparative methods, including making essential comparisons within participant groups, between groups and across regions. Data have been corroborated in comparison with recent policy documents and participants are being invited to provide feedback on preliminary findings. 

Results: Despite new funding and new interventions in many provinces, parents expressed serious ongoing concerns about the needs of children with ASD. While there was diversity in parents’ responses, most felt it was urgent to intervene early — with some holding out hope for “recovery” — while also meeting the needs across the lifecourse. Parents spoke of the personal toll in caring for their children, many of whom had extraordinary needs, while also playing an advocacy role. Most began by advocating for their own children, then progressed to advocating for others. Researchers in turn conveyed deep commitments to children with ASD, often born of longstanding research and clinical relationships wherein they developed considerable empathy for these children and their families. Many researchers therefore felt compelled to help improve services, participate in public debates, and even engage in the policy process at times. Meanwhile policy-makers also described longstanding commitments to children with ASD, most having dedicated their careers to serving children. Many therefore found conflicts with parents distressing. They also spoke of tensions arising from their mandate to serve children who had other mental health or developmental problems but who lacked strong advocacy, particularly given limited resources for children’s services overall. Policy-makers appreciated researchers who were willing to contribute in the unusually volatile policy milieu associated with ASD.

Conclusions: Parents of children with ASD have been highly effective as advocates, often with the support of researchers. ASD constitutes an exemplar, demonstrating that parents and researchers can significantly influence the policy process when they align around common goals. The potential gains for children with ASD need to be evaluated and then translated — not only into further gains for these children, but also into gains for other vulnerable children.