Disparities in Canadian Indigenous Health Research on Neurodevelopmental Disorders
Abstract
Objective To map the landscape of research on autism (ASD), cerebral palsy (CP), and fetal alcohol spectrum disorder (FASD) in Canadian Aboriginal children. Method The authors used a detailed search strategy to identify and access publications on ASD, CP, and FASD involving Canadian Aboriginal children, families, and communities from online databases. They analyzed these materials for the type of research, stated objectives, methodologies, and the level of engagement of Aboriginal Peoples. Results The authors found a total of 52 reports published since 1981 relevant to Aboriginal children. Of these, 51 focused exclusively on FASD. They also found a near-complete failure to acknowledge community involvement in research decisions or dissemination of results in any of the publications. Conclusions The focus on FASD in Aboriginal children and the absence of research on the other 2 major childhood disorders are at odds with rates of these disorders across Canadian children. The authors argue that this trend violates fundamental principles ensuring equitable representation of all children regardless of background in research and access to benefits of research in health care and perpetuates stigma in an already marginalized population.
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The under- and/or mis-diagnosis of autism with Indigenous child populations in Canada may result from their parents' reluctance to, and/or difficulty in accessing an often-complex system as a result of multifaceted structural barriers.
“As several studies alluded to, the under-and/or mis-diagnosis of autism with Indigenous child populations in this country may result from their parents' reluctance to, and/or difficulty in accessing an often-complex system as a result of multifaceted structural barriers (Di Pietro & Illes, 2014; Hiebert-Murphy et al., 2008; Inman, 2019; Lindblom 2014a; Shochet et al., 2020, Manitoba First”
From Autism and Autism Services with Indigenous Families and Children in the Settler-Colonial Context of Canada: A Critical Scoping Review (2022) · cites this paper as Di Pietro & Illes, 2014
The need to adapt or tailor autism services for Indigenous populations was raised in the reviewed literature.
“The need to adapt or tailor autism services for Indigenous populations was raised (Canadian Autism Partnership Project, 2016; Stephanow, 2019; Di Pietro & Illes, 2014; Manitoba First Nations Engagement, 2017; Ouellette-Kuntz et al., 2006).”
From Autism and Autism Services with Indigenous Families and Children in the Settler-Colonial Context of Canada: A Critical Scoping Review (2022) · cites this paper as Di Pietro & Illes, 2014
The literature generally offered some focus on the experiences of autism, with the exception of five articles.
“The literature generally offered some focus on the experiences of autism, with the exception of five articles (Burstyn et al., 2010; Di Pietro & Illes, 2014; El-Hayek, 2007; Ouellette-Kuntz et al., 2006; Stavropoulou-Kampoukou, 2019).”
From Indigenous Autism in Canada: A Scoping Review (2024) · cites this paper as Di Pietro & Illes, 2014
Cites
Rasmussen, C., & Bisanz, J. (2009) · Child Neuropsychology · doi:10.1080/09297040802385400 · Cited by 134 · see citing works
Uncanny Scripts: Understanding Pharmaceutical Emplotment in the Aboriginal Context
Oldani, M. J. (2009) · Transcultural Psychiatry · doi:10.1177/1363461509102291 · Cited by 58 · see citing works
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Improving health research among Indigenous Peoples in Canada
Hyett, S., Marjerrison, S., & Gabel, C. (2018) · Canadian Medical Association Journal · doi:10.1503/cmaj.171538 · Cited by 177 · see citing works
Indigenous Australians with autism: A scoping review
Bailey, B., & Arciuli, J. (2020) · Autism · doi:10.1177/1362361319894829 · Cited by 47 · see citing works
Di Pietro, N., & Illes, J. (2016) · Neuroethics · doi:10.1007/s12152-016-9281-8 · Cited by 27 · see citing works
Self-citationGerlach, A. J., Matthiesen, A., Moola, F. J., & Watts, J. (2022) · Canadian Journal of Disability Studies · doi:10.15353/cjds.v11i2.886 · Cited by 20 · see citing works
Indigenous Autism in Canada: A Scoping Review
Bruno, G., Chan, T. A., Zwaigenbaum, L., Coombs, E., Circle, T. I. R., & Nicholas, D. (2024) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-023-06045-z · Cited by 12 · see citing works
“The literature generally offered some focus on the experiences of autism, with the exception of five articles (Burstyn et al., 2010; Di Pietro & Illes, 2014; El-Hayek, 2007; Ouel-lette-Kuntz et al., 2006; Stavropoulou-Kampoukou, 2019).”
BackgroundIndigenous Autism in Canada: A Scoping Review
Bruno, G., Chan, T. A., Zwaigenbaum, L., Nicholas, D., & Coombs, E. (2023) · doi:10.21203/rs.3.rs-2661859/v1 · Cited by 2 · see citing works
- Authors
- Di Pietro, N. C., & Illes, J.
- Affiliations
- University of British Columbia (CA)
- Corresponding author
- Illes, Judy
- ORCID
- Illes, Judy
- Venue
- Journal of Developmental & Behavioral Pediatrics
- Published
- 2014-01
- Volume
- 35
- Issue
- 1
- Pages
- 74-81
- ISSN
- 0196-206X (ISSN-L)
- OpenAlex
- W2004378768
- Cited by
- 39
- References
- 2
- Citations by year
- 2026: 4 · 2025: 3 · 2024: 4 · 2023: 9 · 2022: 4 · 2021: 3 · 2020: 6 · 2019: 2 · 2018: 3 · 2016: 1
- FWCI
- 0.06
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Developmental & Behavioral Pediatrics (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Canadian Health Services Research Foundation
- Canadian Institutes of Health Research (85117)
- National Institute on Minority Health and Health Disparities
- Topics
- Social Sciences › Health › Indigenous Health, Education, and Rights
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Keywords
- neurodevelopmental disorders, autism spectrum disorder, cerebral palsy, fetal alcohol spectrum disorders, Indigenous health research, research disparities, community-engaged research, research equity, stigma
- MeSH terms
- Autistic Disorder, Canada, Cerebral Palsy, Humans, Biomedical Research, Health Status Disparities, Fetal Alcohol Spectrum Disorders
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