Research led by York University draws attention to inequities in Canada's public health care system affecting immigrant and racialized families raising children on the autism spectrum.
Conducted by a team at York's Faculty of Health in partnership with the community organization SMILE Canada-Support Services, the research centres on the voices of family caregivers who are often overlooked in autism research or policy discussions despite facing disproportionate barriers to care.
The study, published in International Journal of Environmental Research and Public Health, investigates the lived experiences of caregivers from marginalized communities to understand the social determinants affecting access to care and autism-related services.
Findings show that fragmented systems, stigma and structural barriers create long-term strain for individuals and families in caregiving roles, highlighting the need for public health policy reform across Canada.
"Caregiving does not happen in isolation," says Farah Ahmad, professor in the School of Health Policy and Management. "This research shows how families are navigating multiple systems at once - health care, education, immigration and social services - and how gaps in those systems directly affect family well-being."
Autism is a lifelong neurodevelopmental condition affecting approximately one in 50 children and youth, aged one to 17 years. While support needs vary, parents and family members often take on complex and ongoing responsibilities soon after diagnosis, including care coordination, advocacy and emotional, and financial assistance, Ahmad notes.
The researchers argue that when caregivers' needs go unmet, the effects extend beyond individual families. Chronic stress, burnout and declining mental health among caregivers can influence service use, employment and long-term health outcomes, making caregiving a pressing public health concern rather than a private challenge.
"When family caregivers are stretched to the limit, the impact shows up across systems," says Ahmad. "Health and education policies need to recognize caregivers as central partners in care."
The study collected data using PhotoVoice, a participatory research method that allowed participants to document their experiences through photographs and personal narratives.
Immigrant and racialized family caregivers took part in four in-person sessions that included guided photo-taking, group reflection and collaborative analysis. York researchers worked alongside caregivers to identify key themes and refine the findings, positioning participants as knowledge holders rather than research subjects.
"This approach aligns with our commitment to community-engaged research," Ahmad says. "It allowed caregivers to show, in concrete ways, what gaps look like in daily life."
The PhotoVoice study was led by graduate student Jesse Sam, which contributed to his major research paper for his master's in health policy and equity. The team also included Tareq Khalaf (doctoral student in health) and Anjana Sathies (master's student in critical disability studies).
The group identified seven interconnected themes that reflect the complexity of caregiving: family and child needs; physical and emotional burden on caregivers; school support gaps; stigma and discrimination; overall journey with barriers; transitions and uncertainty; and "two sides of a coin:" isolation and strength, loneliness and hope.
School systems were flagged as a major pressure point, requiring caregivers to spend significant time advocating for support. For families facing other obstacles, such as language and systemic, these challenges were compounded.
"What stood out was how persistent and layered these barriers were," says Ahmad. "Families were not dealing with a single obstacle, but a series of interconnected challenges that accumulated over time."
Participants also described racism and discrimination within health and social service systems, along with financial strain tied to therapy costs, lost work time and administrative burden.
The study calls for policy changes that would improve equity in autism support: coordinated, culturally responsive health and education systems that reduce administrative burden, address stigma and assist families across key transitions.
Those who participated in the PhotoVoice study reported feeling validated and empowered, and expressed interest in sharing the findings with broader audiences.
Ahmad notes that by positioning caregivers' experiences as evidence, the research challenges policymakers and practitioners to rethink how autism care is delivered and who is included in decision-making processes.
This story was originally featured in YFile, York University's community newsletter.
