A study by York University Faculty of Health Professor Farah Ahmad and her students Fariha Shafi and Amirtha Karunakaran, titled “Autism, Stigma, and South Asian Immigrant Families in Canada,” was recently published in the International Journal of Environmental Research and Public Health.
While existing evidence suggests early autism diagnosis and support results in positive outcomes for children and youth on the spectrum and their families, Ahmad believed the same might not be true for children of racialized families, who are often diagnosed at later ages and are more likely to be misdiagnosed and experience barriers to service access. She also identified a lack of research examining the experiences of parents in Canada from specific immigrant groups – many from racialized communities – who are caring for their children on the spectrum.
With funding from York University’s Faculty of Health, through a Collaborative & Community-based Research Seed Grant, the York U researchers set out to address this knowledge gap by looking at South Asian Canadian immigrant parents with children on the autism spectrum and examining their experiences with available care programs and supports, as well as their perceptions of social stigma.
“Disability should not hinder people’s opportunities to reach their full potential,” said Ahmad, “so it’s a matter of human rights to bring forth hardship experienced by families caring for their children or adult family members on the autism spectrum. This is particularly relevant for racialized immigrant families, given the dearth of scholarly knowledge in Canada on their experiences.”
The team worked with community collaborators, including the SAAAC Autism Centre and Health Access Thorncliffe Park, to find suitable study participants. Nine South Asian parents living in the Greater Toronto Area were selected and interviewed individually.
The study's findings confirmed barriers to an autism diagnosis and to service access. Additionally, parent participants reported that the stigma surrounding autism kept them from receiving a timely diagnosis, access to support services and guidance on health-promoting behaviours. The findings also revealed considerable caregiver stress and psychological distress.
“I believe in a proactive strategy," said Ahmad, "where we as researchers examine the ‘ground reality’ of caregivers’ challenges and ways to cope, with the aim to enhance equity in practice and policymaking for improving structural supports for them, including efforts to reduce societal negative attitudes towards disabilities."
Ahmad and her team expect the evidence revealed by their study to have wide-ranging impacts, including helping to inform equitable policy, programming, and practices that better support the needs of children on the spectrum and their immigrant families.