Cowessess launches research into autism
Cowessess First Nation partners with research centre on three-year project
With next to no autism supports in Saskatchewan’s Indigenous communities, Jeanelle Mandes counts herself lucky to be raising her daughter with autism in Regina instead of in her home community.
Mandes moved from Beardy’s and Okemasis First Nation to Regina with her one-year-old daughter, Sharlize, to attend the University of Regina nearly a decade ago. Noticing Sharlize was the only child in her daycare not talking, she began to ask questions. Someone suggested her daughter might have autism and, after months of assessments, Sharlize was diagnosed with the condition.
“I didn’t have to wait around, I didn’t have to search. I had all of my supports already available to me,” said Mandes.
But Mandes believes her journey would have looked entirely different had she stayed in her First Nation.
“If we stayed in the reserve, (Sharlize) would be so severely delayed, her development skills would’ve been so delayed. She would’ve probably not been in school. We would be without any supports or services, because I know a lot of families in my community are suffering because they don’t have that support,” she said.
A new research initiative launched jointly by Cowessess First Nation and the Autism Resource Centre (ARC) is hoping to change that.
The three-year, $500,000 pilot project announced in Regina on Friday is called the Building Block Program: Transition Services for Indigenous Youth with Autism Spectrum Disorder. It will focus on researching autism within First Nations communities and then building much-needed supports from an Indigenous perspective, the first project in Canada to do so.
Right now, national research lacks an understanding of autism in Indigenous communities.
“There’s very little information around the numbers of children from First Nations communities who may have autism,” said Keely Wight, executive director of ARC.
She noted that, according to the Public Health Agency of Canada, one in every 66 children in Canada is diagnosed with autism, but the research behind that number does not include First Nations communities. Part of this new research project will be looking to see if that statistic is the same among First Nations peoples.
“I think there has been an under-diagnoses as well as under-detection, part of that being that provincially funded autism services are not funded to go onto reserves, and also access to a diagnosis in those communities is very challenging and limited,” said Wight.
Cowessess Chief Cadmus Delorme said he sees this lack of support on his own First Nation, which is why the community decided
If we stayed in the reserve, (Sharlize) would be so severely delayed her development skills would’ve been so delayed.
to partner with ARC to take on this project. He hopes this research will help people view autism more positively.
“When children have those special gifts, they actually have a unique relationship with the Creator, with the spiritual world ... A child who has a very unique perspective on the world, we can actually learn a lot from them,” said Delorme about the Indigenous perspective on autism.
By talking with families, children, caregivers and teachers on Cowessess, Wight hopes to reach a better understanding of autism in Indigenous communities, what the needs are and how to build resources based on those needs. There will also be a focus on expanding ARC’S supported employment program, which helps youth with autism transition into the workforce. She hopes these resources can then be duplicated across the country.
Cowessess and ARC are partnering with Street Culture, Fetal Alcohol Spectrum Disorder Network, and academic partners from the U of R and Simon Fraser University to bring this project to life. Other First Nations communities will also be involved.
“The outcome that we’re hoping for is that we will have a better action plan to help this country, to help this province, to help services that are provided to lift our people,” said Delorme.
The project is funded by a grant from the Public Health Agency of Canada Autism Spectrum Disorder Fund.