Economic impacts of caring for autistic children in Ontario, Canada: report from a pilot study

Although research on the economic costs of autism is growing, relatively few studies have examined these costs incurred by families of autistic children in Canada.

This study designed and piloted a survey to capture the broader economic impact of caring for autistic children, including direct and indirect costs. It also sought to gather preliminary data to inform a future full-scale survey and enhance understanding of autism's economic impact in the Canadian context. The pilot survey was developed through a systematic and iterative process involving a literature review, workshops, and focus group discussions. It was then distributed to families with autistic children in Ontario, Canada's most populous province.

A mixed-method analysis of survey responses revealed that financial challenges for these families often begin during the diagnostic process and continue with high out-of-pocket medical and therapy costs. Caregivers also face challenges accessing funding and appropriate support services, contributing to indirect costs such as increased living expenses, childcare, education, and training. Caregivers of autistic children in Ontario experience substantial and multifaceted challenges that are compounded by inadequate public support. Understanding the nature and extent of caregiver expenditures can inform more targeted and efficient policy responses in financial, informational, and practical autism-related support.