Study puts Indigenous lens on autism

Hey there, time traveller!
This article was published 10/02/2022 (1585 days ago), so information in it may no longer be current.

A project is looking to improve school experiences and outcomes for autistic Indigenous people using the intersection of traditional western biomedicine and lived experience.

Lead researcher Patty Douglas launched the study “Exploring Indigenous Approaches in Autism Education” at the start of the year in partnership with the Manitoba Métis Federation (MMF) Southwest Region and Brandon Friendship Centre. The organizations will use the results of the study to collaborate with educators and policymakers to improve the school experience for autistic Indigenous youth.

“It starts to look at autism at the intersections and from many different angles … those intersections are some of the most important things we can be looking at as researchers invested in social justice and inclusion,” said Douglas, a Brandon University associate professor of social justice education, inclusive education and disability studies in education.

“Stories are alive and ever-changing and cultural bearing and so central. It matters which stories we tell — it’s powerful.”

A focus of the project has been decolonizing approaches to autism, and part of this approach is placing an emphasis on storytelling and lived experience.

“I’m not Indigenous myself. I’m a white settler who is working to understand what decolonizing research means. But I have been doing story work for a very long time and believe very much in the power of story to change worlds,” Douglas said. “Storytelling has been at the centre of many Indigenous cultures and communities, so I think that it is a natural fit.”

“Exploring Indigenous Approaches in Autism Education” studies the spectrum disorder based on Indigenous lived experiences. It is an emerging conversation, because the spectrum disorder has often been centred on western norms and understandings in biomedicine.

One of the key aspects of this perspective is focusing on Turtle Island Nations and communities’ use of the language of gifts and uniqueness when describing neurodivergent people.

In Canada, autism is not a label often given to Indigenous young people; 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 different types of support.

Participants eligible to take part in the study are Indigenous autistic people, Indigenous or non-Indigenous family members, practitioners or educators looking to talk about their experiences at school. Participants do not have to have a formal diagnosis of autism to take part.

The first phase of the research will involve brief 30- to 60-minute phone interviews, online or by email or at a location chosen by a participant.

Douglas said they are hoping to involve 30 people in southwestern Manitoba, who can share their perspectives and experiences. Interviews are taking place from February to March.

The second phase of the study will take place in March and April.

Research assistant Tyler Huff said, as a Métis student, the study is focused on “finding our way back to ourselves.”

“It takes into account our own experiences and our own emotions,” he said. “The stories are very humbling. Everyone has a story, everyone has been through something, and it really seems from what I’m getting from the stories I’ve seen, from what I’ve read, is they’re being dismissed.”

The study has the very real possibility of making a difference by giving a voice to a population that has traditionally been voiceless. He added far too often experiences and emotions are dismissed, despite the fact they play critical roles in every aspect of life.

It has been exciting to be a part of the research because the study has created an intersection for Indigenous experiences and knowledge with western biomedicine.

“There’s a colossal gap between the two. There’s an assumption from what I’ve read in the literature that western ideas of medicine and being are uniform among all different cultures and types of people,” Huff said. “Obviously that’s not the case.”

He added western medicine has also served as a colonial system. It has a role to play in health, but it does not account for Indigenous experiences and emotions because it can lack a “human element.”

He said he thinks as society transitions away from these sorts of black-and-white markers, it can help students identify themselves so they can be better prepared for life.

MMF Southwest vice-president Leah LaPlante said her organization is supporting the study because autism is present in some Métis families and they are searching for support and resources.

“When people open up about things that are hard to deal with in their lives, sometimes you do need an elder there to help that person get through that stage of it and moving on to continuing to tell the story, which is the most valuable part of any research project — getting that lived experience,” she said.

Indigenous health conditions at times have not been deemed as important as the health of others, she said. While this has been changing, it remains important to push for wrapping Indigeneity into social and health-care conversations.

Many years ago, the MMF was involved in a study looking at the health of Métis people in Manitoba.

“We all know from our own experience … we had a good idea of the general poor health conditions, but once we finished that project with the university and had it all documented, it told us everything we didn’t really know before and it was there in numbers … and it made a big difference in regards to how the MMF dealt with that,” LaPlante said. “We’re hoping that the same result will come from this project.”

To participate in the study or ask questions, fill out the contact form at tinyurl.com/autismatschool or contact Douglas at douglasp@brandonu.ca or 204-596-8533.

» ckemp@brandonsun.com

» Twitter: @The_ChelseaKemp