Thinking differently: autism in First Nations communities

Located in Central Alberta, the Plains Cree community of Maskwacis defines autism spectrum disorder (ASD), or pîtoteyihtam, as “he/she thinks differently”. According to Grant Bruno, a registered member of Samson Cree Nation, many people with lived experience of ASD prefer this definition over the more widely used definition from the Diagnostic and Statistical Manual of Mental Disorders.

“Being always talked about as being disordered, it can be very othering,” says Bruno, a recent recipient of Brain Canada’s Shireen and Edna Marcus Excellence Award.

I am trying to approach ASD differently as a father, as something to be embraced

Grant Bruno

When two of his four children were diagnosed with ASD, Grant quickly noticed that access to services within Maskwacis was very limited – ASD awareness is low, diagnosis is often delayed, and specialized support is frequently only available outside the reserve. Eager to learn more about the lived experience of autism in Indigenous communities, Grant turned to the literature and found that only a handful of studies had been done in Canada; even the prevalence of ASD is unknown. An M.Sc. student at the time, Grant had not initially planned to further pursue academia but, as a member of the community himself, he felt that he was well placed to expand knowledge on ASD in First Nations communities and, so, the idea for his Ph.D. project was born.

Under the supervision of Dr. Lonnie Zwaigenbaum, Professor at the University of Alberta and Brain Canada-funded researcher, and Dr. David Nicholas, a Social Work Professor at the University of Calgary, Grant aims to gather viewpoints that will improve our understanding of ASD in First Nations communities. Supported in part by Brain Canada’s Shireen and Edna Marcus Excellence Award, Grant will engage with the community at all levels, namely community leaders and members, Elders, knowledge keepers, as well as health care and education providers and children and their families, to fully capture the reality of living or caring for someone with autism in Maskwacis.

Though historically research was done on Indigenous communities rather than with them, which led to it not being representative, Grant will be using a strength-based decolonizing approach rooted in community-based participatory research methods to make sure that the research is done through the community, by the community and for the community. Taking a decolonizing approach, which brings in the language, ceremonies, and other traditions of the community, will allow Plains Cree culture to guide how the work is done and will ensure that the results truly represent and serve the people of Maskwacis.

In parallel with performing a scoping review of the literature to fully understand the current state of research in the field, Grant is going to meet with the education authorities in Maskwacis to get their stamp of approval and will then engage with a community advisory committee to settle on the final project aims and objectives. This represents a shift in how medical research is normally done within academic institutions, which typically abide by a strict set of ethics rules rather than allowing for a more grassroots approach towards engaging people with lived experience. To Grant, though, allowing the community to guide the research is crucial. “I am from there and I am mindful of how I’m representing the community,” he said. “I need my research to really allow the community to tell their stories.”

Research has been very healing for me. I’ve been able to really immerse myself in the rich culture of Maskwacis.

Grant Bruno

By engaging with and collecting data from individuals, families and professionals associated with ASD in the First Nations context, this work will provide unique and informative perspectives on the strengths and challenges of what it means to experience autism within these communities. Armed with this knowledge, Grant aims to influence policy within and outside Maskwacis, and to provide evidence for the kinds of services that are needed by the community. Through the relationships he forms within Maskwacis, he also hopes to come up with ways to help those living with ASD engage more meaningfully with their culture, for instance by planning sensory friendly cultural events such as powwows.

Grant, whose mother and grandmothers are residential school survivors, is keenly aware of their community’s trauma and of the importance of reconnecting with the culture to heal. With my sons, every day we’re trying to do some sort of ceremony, I’m getting them into the culture and I’m teaching them the language. In the process, I feel like I’m getting my spirit back.”

Funding for the Shireen and Edna Marcus Excellence Award is thanks to the generosity of the Shireen and Edna Marcus Foundation, a charity focused on supporting Canadian institutions and registered charities  conducting or assisting research in the prevention or treatment of autism. It has supported Brain Canada’s student awards since 2019. This Award is intended for Master’s and Ph.D. students and/or postdoctoral fellows who demonstrate a high standard of achievement in their graduate studies specifically in the field of autism research.

Bruno was selected on a competitive basis by a review committee established by Brain Canada.