Researching autism with and within First Nations communities

Grant Bruno has dedicated his career to supporting children with autism by moving past western definitions of the disorder. He’s also working to change the relationship between First Nations and academic institutions. In many First Nations communities, he explains, there’s a lack of trust towards researchers and other western institutions. As a community member and researcher, he’s working to change that.

“We often say in our communities that we’ve been researched to death, we’re tired of it,” he says. 

“The research that has been happening for over a hundred years has been very extractive. It’s been really about trying to get resources for the researcher and the university, and there’s very little benefit for the communities. So my research is very much about making sure that the community feels those benefits right away.”

Bruno, who recently accepted a tenure-track assistant professor position in the Department of Pediatrics at the University of Alberta, is set to become the first First Nations faculty member in pediatrics in all of Canada. It’s a role that puts him in a strong position to advocate for First Nations children and youth in health care across the country.

Beyond his work as a researcher, Bruno is also a proud parent to five children. Two of his children are on the autism spectrum, so he has a keen interest in the work he’s doing to change perceptions of how autistic individuals are perceived and treated in health-care settings.

Breaking down colonial narratives

As part of his research, Bruno is working to bridge the divide between traditional western approaches to diagnosing and living with autism, and a more holistic understanding of autism based on Indigenous knowledge. Western medical definitions, he explains, are rooted in ableist colonial perspectives, focused on the disorder and perceived ‘deficits’ present within those who have it. 

“This idea — and I think this is rooted back into the church — was that being disabled was a sin. If you’re a sin, then you weren’t supposed to be able to be part of the society. And that’s become something I see in the community, unfortunately, because residential schools brought those beliefs into our communities,” he says.

To move past those perspectives, Bruno worked with elders in Treaty 6 territory to understand how autism would traditionally be viewed in Indigenous communities, outside of western influence.

“The overall consensus is that we would have viewed autism as a gift. As something to be celebrated,” he explains.

“What I’m trying to do now is take the knowledge that I’ve been gifted through these elders and start to share that knowledge back to the community and say, ‘Hey, you know what? We would have practised full acceptance, and maybe we should get back to that,’ because for me that’s a really healthy way of approaching autism. It allows for healthier connections and healthier relationships.”

As a member of Nipisihkopahk (Samson Cree Nation) who also conducts research in other First Nations communities, Bruno understands the importance of working respectfully alongside the communities where he works.

“There’s a whole different layer of accountability, a different layer of connection and a different approach as well, because I don’t have the option of just leaving the community,” he says. 

“I have to be very mindful of the work I’m doing and make sure the work I’m doing is having a positive impact.”

To ensure his research had a positive, meaningful impact, Bruno set up an autism advisory circle made up of elders, autistic people and service providers to guide his own research and ensure the work he is doing responds to the needs of the community. By consulting this group, Bruno helps to shift the traditional balance of power of research projects. Whereas in the past, researchers would have taken a top-down approach to the communities they work in, Bruno encourages the community to take the lead.

“What this is doing is allowing the community to come to me and say, ‘Hey, this is what we want to do,’ and then I’m just the connection between the community, the research and the university. It’s about shifting those power balances.”

Bruno is currently leading a three-year project called the Indigenous Caregiving Collective through the Canadian Centre for Caregiving Excellence. The project aims to increase understanding of the experiences of caregivers in First Nations communities to develop policies to better support them.

“What I really want to do is learn from caregivers in communities such as mine,” he says. “Taking those learnings and supporting other caregivers right across Canada is going to be really important.”

Fostering cultural connections

In addition to his academic research, Bruno is also keen to help autistic kids experience cultural traditions they may have missed out on in the past. He spearheaded the development of a sensory-friendly teepee, created in partnership with Autism Edmonton, to put up at community events like powwows and round dances. The structure offers children and families a quiet space to step away from lively social events – which can often be overwhelming for kids with autism.

“We just wanted a space again for kids to come to not feel judged, or to be able to decompress if they have to or get some regulation. And it was a hit,” he says. 

“What we noticed is that not only the autistic kids loved it, but the neurotypical kids as well really enjoyed this space. It allows children from any background to come and enjoy the space in a way that is fitting their needs.”

While the teepee has so far been successful, Bruno hopes to one day be able to expand the concept to include a full sensory-friendly powwow for families in the future.

“We are planning to do more, we just have to find the right partners to be able to do something like this,” he says.

Throughout all his roles — as a researcher, as a parent, as a member of Nipisihkopahk — Bruno hopes to inspire greater acceptance and understanding. Ultimately, he explains, it’s about remembering the unique personalities and needs of children and families living with autism.

“When you’ve met one autistic person, you’ve only met one autistic person,” he says. “It’s really about getting to know that child and understanding their behaviours … and then trying to meet them exactly where they’re at.”