The article “Autism and Autism Services with Indigenous Families and Children in the Settler-Colonial Context of Canada” explores the challenges Indigenous families face when trying to access autism-related support. The authors highlight that there is very little research on autism in Indigenous communities, which makes it harder to understand how many Indigenous children are affected and what services they need. Many families struggle to get a proper diagnosis due to barriers like long wait times, a lack of culturally appropriate assessments, and healthcare systems that don’t always respect Indigenous ways of understanding health and disability. The authors call for better policies, more funding, and services that include Indigenous knowledge and perspectives, so that Indigenous children with autism and their families can receive fair and respectful care. While this article provides insight into patterns observed in care access, it is important to note that this article does not represent all Indigenous experiences but rather highlights specific challenges faced by some families. Access the article to read further below.
Article Summary:
By Alison J. Gerlach, Amarens Matthiesen, Fiona J. Moola, and Jackie Watts
What is the authors’ objective?
The authors analyzed existing literature on Indigenous children with autism across several databases for important themes to inform future research practices. The authors were driven by concern over the lack of data on Indigenous children with autism in Canada.
Relevant background information…
Access to early child development (ECD) and intervention is essential for improving outcomes for children with autism. In Canada, it is usually done by a pediatric specialist or team and diagnosis is usually required for parents to access funding, support and services. In BC, a formal diagnosis for preschool aged children can provide up to $22,000/year towards support needs for their parents.
Indigenous parents’ access to ECD and intervention is complicated due to experiences of racism, especially within the healthcare system. Colonial relations of power continue to negatively impact the health and development of Indigenous children, notably through intergenerational trauma caused by government actions and the child welfare system.
In 2007, the House of Commons approved Jordan’s Principle, which is meant to prevent denials, delays, and disruptions in services for Indigenous children because of jurisdictional issues. It honors Jordan River Anderson from Norway House Cree Nation in Manitoba who experienced delays in services that prevented him from living outside of a hospital before he died. Since 2007, there has been increasing awareness that the federal government’s actions do not align with the principle.
What did they find?
The authors reviewed 19 articles on autism and Indigenous children. They found that three main themes emerged from their review.
Firstly, there was an emphasis on medical perspectives, as many studies relied on diagnostic criteria for ASD. They focused on deficits like social/communication impairments, limited activities and interests, etc.. Some of the authors of the reviewed articles did express concern about negative stereotypes of Indigenous children leading to inaccurate or delayed diagnoses. This medical view of autism conflicts with Indigenous perspectives of neurodiversity, which can see autism as a gift rather than a deficit. It also ignores how Indigenous lives are shaped by social, economic, colonial, and political factors.
Several of the reviewed articles questioned if the low diagnosis rates were because of the overdiagnosis of Indigenous children with Fetal Alcohol Spectrum Disorder (FASD). Additional factors for low diagnosis rates included lack of awareness of autism within communities, lack of autism-specific resources, or the overlap in criteria between autism and FASD. They warned against assuming autism is lower in Indigenous youth populations.
Another theme that emerged from the articles was the structural barrier of inequity. Difficulties in accessing support and getting timely diagnosis and funding were significant deterrents for many Indigenous families, especially those living on a reserve.
Lastly, the authors noticed from the articles they reviewed was that there was a lack of autism research led by Indigenous researchers or centred on Indigenous lived experiences.
What did they recommend?
The authors recommended establishing a central repository for Indigenous-led research and data on neurodiverse Indigenous children. They believed that focusing on Indigenous-led approaches, instead of “awareness campaigns” about medical-centrism autism programs, is more effective. They also recommended more research on preventing Indigenous children with autism from entering the child welfare system.