New research projects aims to improve autism supports on First Nations
A new partnership is working to provide better support and increase understanding for people living with autism spectrum disorder on First Nations in Canada.
“I think there has been an underdiagnoses as well as an under detection,” said Keely Wight the executive director of the Autism Resource Centre. “Part of that being provincially funded autism services are not funded to go onto reserve and also access to diagnosis in those communities is very challenging and limited especially if they are in rural and remote areas.”
The Autism Resource Centre is working with Cowessess First Nation, speaking with members of the first nation to determine the best ways to support people living with autism.
“Produce a report, produce results,” said Cadmus Delorme, Chief of Cowessess First Nation. “It’s not just going to be geared to the health spectrum; it’s going to be geared to society too, it’s going to have ideas that are going to help us all at an interpersonal society and even at a system perspective.”
The research project will consist of talking with families who have loved ones with autism and also talking with indigenous elders and knowledge keepers.
“We will be learning a lot from Cowessess and we will also be sharing our knowledge of autism with them,” Wight said. “It will hopefully be a true knowledge exchange and that we’ll be developing new resources and new supports together.
Delorme said in Indigenous culture, a child with autism is considered to be born with a special gift.
“In Indigenous ideology, children are placed as the highest priority and the biggest gifts,” Delorme said. “Some of our children are born with not the mind that we all just kind of assume to have and when those children have those special gifts, they actually have a unique relationship with the creator, with the spiritual world. Sometimes this world can be a very negative place to how we see it, but to a child who has a very unique perspective on the world we can actually learn a lot from them and how they view the world. That’s the gift that they carry and that’s a gift that society could use to better our world as we move forward together.”
Cowessess is hosting the project, but the Autism Resource Centre will also talk with members of other First Nations. When the research wraps up three years from now, the Autism Resource Centre will give its research to the federal government in hopes of building more resources and supports for individuals with autism who live on Canadian First Nations.
The Public Health Agency of Canada provided $500,000 for the project.
Wight said the research project is groundbreaking.
“There’s very little information around the numbers of children from First Nation’s communities who may have autism,” Wight said. “Some of the information we have received from the public health agency of Canada, the one in 66 children who are diagnosed with autism, that information did not include our First Nations communities. So very little is known, and it’s our hope through this project we will work with Cowessess and other communities to find out more about what are the needs of children with autism in those communities are, how to best support them and develop resources and support systems from First Nations ideology.”
Indigenous Services Canada told CTV News in a statement, that they also provide support for students on the autism spectrum that are attending school. They have two education programs currently in place, including the Elementary and Secondary Education Program or the High Cost Special Education Program. They said these programs provide additional supports, such as support workers for the students.
Jeanelle Mandes has a 10-year-old daughter who lives with autism. She only learned of her daughter’s diagnosis when she moved into the city from Beardy's & Okemasis' Cree Nation.
“All the services and supports were put in place, I didn’t have to wait around I didn’t have to search, I had all my supports ready,” Mandes said. “I’m thinking that’s because I live in an urban community and I’m fortunate.”
Mandes added she’s glad they were already living in Regina at the time of her daughter’s diagnosis.
“If we stayed on the reserve she would be so severely delayed, her development skills would have been delayed,” she said. “She probably wouldn’t have 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 support Sharlize and I have here in the city.”
Mandes has been involved in many projects about autism in the past, including a documentary called “Falling through the cracks” that looks at the lack of support for people with autism on First Nations in the province.
“I just know that there is a huge hole, not cracks in the sidewalk anymore,” she said. “It’s big holes not only in Saskatchewan but it’s all across the nation.”