The Lived Experience of Autism in an Indigenous Community: A Qualitative Study
Autism spectrum disorder (ASD) is characterized by difficulties with communication, social deficits as well as repetitive behaviors and interests. There is very little research on ASD in First Nations communities in Canada. We do not know how common ASD is or what challenges autistic individuals and their families experience in First Nations communities. The research will take place in the Plains Cree communities of Maskwacis. Maskwacis is an hour’s drive south of Edmonton, Alberta. Maskwacis is made up of four different communities, Samson, Ermineskin, Louis Bull, and Montana. The principal investigator, Grant Bruno, is a registered member of Samson Cree Nation.
This study’s primary goal is to gather viewpoints that will give to a better understanding of ASD in the First Nations communities of Maskwacis. The first part of the project will be to conduct a review of research to get a better understanding of ASD in Indigenous communities. This review will guide the research and provide understanding into the work that has been completed within Canada. From there the next goal is to engage with the community.
The goal is to move from research that is community-based to research that is community-led. Community-led research is bringing the community together and allowing the community to make research decisions. The next goal is to bring together the viewpoints of both ASD service providers as well as families whose child has or is suspected to have ASD. Implications emerging from this study will be impactful and meaningful as this will be the first study, to our knowledge, to work with children, families and services providers in a First Nations community in the context of ASD.
Grant Bruno , University of Alberta
Partners and Donors
Shireen & Edna Marcus Foundation