October 26, 2022

Research, services lacking for autistic Indigenous people, say researchers

PhD student Grant Bruno

PhD student Grant Bruno with his wife Margaux, two-year-old daughter Evelyn and seven-year-old autistic son Anders. Photo: Noella Steinhauer Photography

The formula seems simple: Take evidence-based research, add patient input and highly trained professionals plus adequate resources, and you get accessible, appropriate health care.

But what if there’s no data on the patients or their needs, few trained professionals and no agreement on the best model to deliver care?

That’s the situation for autistic First Nations, Métis and Inuit people, according to a new national report assessing autism services across Canada.

All of the barriers non-Indigenous autism patients face — and they are considerable — are exacerbated by colonization and related intergenerational traumas and leave Indigenous autistic children, adults and their families in limbo, say two researchers in the University of Alberta’s Faculty of Medicine & Dentistry who are working to help fill that gap.

“Our primary conclusion is that to substantially address these issues, the work needs to be Indigenous-led,” says Lonnie Zwaigenbaum, pediatrics professor, director of the Autism Research Centre and chair of the national report completed by the Canadian Academy of Health Sciences at the request of the Public Health Agency of Canada.

“The report was predicated on the ability to integrate existing evidence with lived experience, and the reality is there’s just not a lot of published evidence in this area,” Zwaigenbaum notes.

Read the full story on Folio.