Indigenous autism study life-changing for artist

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This article was published 22/04/2023 (923 days ago), so information in it may no longer be current.

A two-spirited Métis person with autism who took part in a Brandon University study looking at how to decolonize the condition says it changed their life for the better.

Patty Douglas, the study’s lead researcher, launched “Exploring Indigenous Approaches in Autism” at the start of 2022 in partnership with the Manitoba Métis Federation Southwest Region and the Brandon Friendship Centre.

The study looked at how to improve school experiences and outcomes for autistic Indigenous people using the intersection of traditional western biomedicine and lived experience.

Participants eligible to take part in the study were Indigenous autistic people, Indigenous or non-Indigenous family members, educators looking to talk about their experiences at school and others who work with autistic people. Participants did not have to have a formal diagnosis of autism to take part.

Claire Johnston, a beadwork artist from Winnipeg, said they emailed Douglas asking to take part in the study after seeing an advertisement. The work that ensued was of immense benefit to them, Johnston said.

“It was absolutely transformational for me to be around other autistic people and talk about our experiences.”

Johnston also lauded ReStorying Autism in Education, a multimedia storytelling project that Douglas is working with that aims to bring together autistic people, family members, practitioners, educators and artists to look at autism differently.

“It benefits autistic people, and I think that was what was most meaningful to me,” Johnston said.

Historically, studies that have been done on autism have largely been deficit-focused, tending to highlight needs and problems in autistic people. Instead, Douglas, an associate professor of social justice education, inclusive education and disability studies in education at BU, said what’s needed — especially for Indigenous autistic people — is more Indigenous leadership that can hold space for their unique experiences.

Autism is also not a label often given to Indigenous young people in Canada; other diagnoses such as behaviour disorder or fetal alcohol spectrum disorder are more commonly used. In some cases, these children may have been autistic and could benefit from types of support.

While a deficit-based understanding can be helpful for some acute cases of autism, Douglas hopes to see those who work with autistic people in Canada move toward a mindset that affirms divergence and differences in all people. It’s something Indigenous professionals have been wanting to see for a long time, she added.

“Some of my Indigenous colleagues say, ‘Yeah, we’ve known this forever. We affirm the fundamental diversity of humans in what surrounds us. There is no deficit,’” Douglas said. Some Indigenous cultures don’t even have a word for autism or other neurodivergent conditions such as attention-deficit hyperactivity disorder, sensory processing disorder and obsessive-compulsive disorder.

During their research of their ancestors, some of which they believe were autistic, Johnston noticed the Métis culture viewed neurodivergent people the same as non-neurodivergent people.

“We’ve always had special people in our societies that has special roles,” they said. “I have memoirs written by my grandparents and great-grandparents that talk about their life experiences, and I read it and think, “They’re so autistic.’”

In her work with ReStorying Autism over the past seven years, Douglas has noticed that autistic individuals face a lot of bullying, exclusion, misunderstanding and approaches that feature an overuse of disciplinary measures. Eventually, her work brought her to New Zealand to work with the Maori, a group of Indigenous people native to that country.

“We heard affirming stories that came out of different Indigenous worldviews and cultures and communities,” Douglas said. “There’s so much amazing beauty and love, strength, resilience and resistance.”

She hopes to continue building a relationship with her New Zealand counterparts and Maori people for future study, since many parallels can be drawn between Maori lived experience and the experience of Indigenous people in Canada.

“I think it’s really important work. Racism and ableism co-exist in school systems, and it’s really, really damaging,” she said.

Douglas is waiting to hear if the project will receive more funding, which will allow her and her fellow researchers to continue to give a voice to a population that hasn’t been sought out for input much before.

Johnston, who is working on a neurodiversity module with Douglas for educators, hopes to continue working with Douglas and ReStorying Autism.

“I benefited so immensely by participating in the research that afterwards, I asked if there is any way at all that I can be involved in this in the future.”

Johnston will also be attending the first ever Critical Autism Summit in Manitoba next year, where they will be hosting a beading workshop. People from all over the world will be in attendance, they said.

The Sun contacted the MMF Southwest Region office and the Brandon Friendship Centre but did not hear back from either organization regarding their involvement in the study.

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