Autism and Aboriginal families: Bridging the cultural gap through collaborative dialogue

Research co-leads:

Research user co-leads:

  • Romona Baxter
    Nzen’man’ Child and Family Development Centre Society

Team members:

  • Emily Gardiner
    University of British Columbia
  • Deborah Pugh
    Autisum Community Training
  • Rona Sterling-Collins
    Rona Sterling Consulting

This project will shine a light on a particular health inequity facing Aboriginal* communities in British Columbia, specifically those related to the delayed access to diagnostic and treatment services for individuals with autism spectrum disorder (ASD).

Though precise prevalence rates of ASD among Aboriginal children in Canada are unknown, data from other populations indicate this disorder is significantly under-diagnosed among Aboriginal populations (e.g. Native Americans and Australian Aboriginals). Recent personal communication with the provincial ministry overseeing ASD diagnosis and intervention funding (Ministry of Children and Family Development) suggests that in British Columbia, ASD is as prevalent among Aboriginal children as it is among those of non-Aboriginal ancestry, but that these children are receiving a diagnosis later and missing out on critical early intervention. We suspect this difference in access is related to unique challenges associated with geographical and cultural issues, the lack of specialized professionals in rural and remote regions of the province, cultural and spiritual beliefs about disability, and to histories of colonization and oppression.

This project aims to address this health disparity by beginning a dialogue with Aboriginal communities about their experience with ASD.

A two-day knowledge gathering event for Aboriginal families of children with ASD and their service providers will be hosted in partnership with an Aboriginal community. At the event, an overview of available provincial resources will be provided, including culturally appropriate information on ASD. Attendees will then be broken into small breakout discussion groups, and families and service providers will be invited to share their support experiences, perceived gaps and needs, and identify opportunities for how health research could facilitate improvement. Information and resources will be shared and exchanged with families, professionals, and community leaders.

These events will allow for the gathering of information on the challenges and barriers experienced by the Aboriginal communities of the Nlaka’pamux Nation, comprised of 16 First Nation communities in the Lytton and Merritt areas, as well as an off-reserve population in the Merritt area. Once the support needs of this community is understood, priority policy issues and future research questions will be identified.

* ‘Aboriginal’ is the term of preference for our research user co-lead.