Autism and Indigenous peoples in Canada: a scoping review

Background: Indigenous leaders have identified supporting the well-being of autistic individuals and their families as a growing concern in First Nations communities across British Columbia. Decades of research have demonstrated that access to timely and appropriate evidence-based diagnostic and support services are essential to autistic well-being. Yet, Black, Indigenous, and People of Colour (BIPOC) are diagnosed with autism later, report lower satisfaction and greater difficulty accessing services, and remain underrepresented in autism research compared to their white counterparts. Research on the unique experience and impact of autism in Indigenous communities is a critical step toward achieving equity in autism services. Method: A scoping review of the peer-reviewed and grey literature was conducted to identify what information has been published to date on autism among Indigenous peoples in Canada. The review elucidated key gaps in current knowledge and priorities for future research. Included publications were analyzed for the type of research, stated objectives, methodologies, and level of engagement with Indigenous communities. Results: The scoping review identified a total of 27 reports published since 2007, which included information relevant to autism among Indigenous peoples in Canada. Of these, only 11 focused specifically on autism in Indigenous communities. Notably, the publications contained a near absence of active involvement of Indigenous communities in research decisions or dissemination of results. Conclusions: A lack of community-led research on autism among Indigenous peoples in Canada is a major ethical concern, particularly in light of disparities in access to autism funding programs and service providers. Further research conducted in collaboration with Indigenous communities is imperative to addressing these disparities and developing supports and services that are responsive to the unique perspectives, experiences, and needs of autistic Indigenous people.