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Absence and Epidemic: Autism and fetal alcohol spectrum disorder in Indigenous populations in Canada

Open access
Inman, Caleigh Estelle·2019·Canadian Journal of Disability Studies
DOI 10.15353/cjds.v8i4.531
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Abstract

This paper contemplates the absence of Indigenous perspectives within autism discourse in Canada, despite increasing concern and surveillance over a growing autism ‘epidemic.’ I posit that the simultaneous production of a fetal alcohol spectrum disorder (FASD) ‘epidemic’ among Indigenous populations contributes to this absence. Taking a genealogical approach to the emergence of FASD as a diagnostic framework, I situate the FASD ‘epidemic’ and subsequent prevention campaigns within a lineage of biopolitical strategies aimed at limiting the reproductive agency of Indigenous women. I argue that this phenomenon has two main consequences: first, the erasure of Indigenous autistics and a homogenization of Indigenous neurodiversity; and second, I claim that the association of FASD with Indigeneity converts the violent outcomes of settler colonialism into an embodied pathology, working to justify ongoing dispossession of land and resources from Indigenous people.

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Cites

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  • Inman's (2019) article on ASD and FASD makes sweeping statements that generalize Indigenous populations.

    “For example, in Inman’s (2019) article on both autism spectrum disorder (ASD) and fetal alcohol spectrum disorder (FASD), there are sweeping statements made that generalize Indigenous populations.”

    From Indigenous Autism in Canada: A Scoping Review (2024) · cites this paper as Inman, 2019

    In the discussion of FASD and Indigenous communities, Inman quotes sweeping claims from other publications and explicitly criticizes them for fostering the idea of an Indigenous FASD epidemic. The paper also challenges the research and assumptions behind that generalization (p. 235), rather than advancing it as its own conclusion. (LLM, conf=0.86)

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  • A recurring theme in the reviewed literature was the lack of autism research in Canada that was led or authored by Indigenous researchers, and/or centred on the perspectives and experiences of Indigenous children and adults with lived experiences of autism or disabilities more broadly.

    “A final recurring and inter-related theme that has significant implications for the design and delivery of an autism system with Indigenous communities, families and children, was the lack of autism research in Canada that was led or authored by Indigenous researchers, and/or centred on the perspectives and experiences of Indigenous children and adults with lived experiences of autism or disabilit”

    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 Inman, 2019

    In the opening discussion, Inman says autism and Indigeneity rarely intersect in Canadian scholarship; on p. 231, the paper describes an absence of information about Indigenous children in autism literature. It also discusses the erasure of autistic people of colour (p. 232). These passages support the broader gap in research and perspectives, but do not establish a lack of research led or authored by Indigenous researchers, or research centred on Indigenous adults with disabilities more broadly. (LLM, conf=0.86)

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  • The reviewed literature identified misdiagnosis of FASD as a structural challenge contributing to underdiagnosis and delays in access to appropriate and timely diagnostic and support services for Indigenous children with autism in Canada.

    “Structural challenges identified in the literature as contributing towards underdiagnosis, and delays in access to appropriate and timely diagnostic and support services, included a misdiagnosis of FASD (Manitoba First Nations Engagement, 2017; Inman, 2019; Pietro & Illes, 2016)”

    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 Inman, 2019

    Inman discusses overlap between ASD and FASD diagnostic criteria (p. 240), a greater likelihood of assumed prenatal alcohol exposure for Indigenous mothers (section II), and the direction of potentially autistic Indigenous children toward FASD resources (section III, p. 250). These passages support concern about diagnostic bias and access to appropriate support, but they do not establish that FASD misdiagnosis causes autism underdiagnosis or delays in diagnostic and support services. (LLM, conf=0.82)

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  • A prevailing, stigmatizing discourse was associated with Indigenous children being misdiagnosed with FASD and preventing Indigenous children with autism from obtaining accurate diagnoses, timely services, supports and funding.

    “As noted in several studies, a prevailing, stigmatizing discourse was associated with Indigenous children being misdiagnosed with FASD and preventing Indigenous children with autism from obtaining accurate diagnoses, timely services, supports and funding (Di Pietro & Illes, 2014, 2016; Inman, 2019; Manitoba First Nations Engagement, 2017).”

    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 Inman, 2019

    Inman discusses possible FASD overdiagnosis arising from diagnostic bias (p. 235) and argues that a prevailing narrative directs parents of potentially autistic Indigenous children toward FASD resources (section III, p. 250). The paper also describes unequal access to screening, services and funding (section III, p. 245), but does not establish that this discourse caused actual FASD misdiagnoses or prevented timely autism diagnoses for particular children. (LLM, conf=0.86)

    Experimental — accuracy not yet measured

  • 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 Inman, 2019

    Inman reports suspected under-detection of autism among Indigenous children (p. 231) and says that race, class, inferior services, and unequal funding can limit access to diagnostic screening (section III, pp. 245–246). The paper does not establish parental reluctance or difficulty navigating a complex system as causes of under- or misdiagnosis. (LLM, conf=0.85)

    Experimental — accuracy not yet measured

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Cites

Flagged first, then by citations

Research works printed but not linked: 9

  1. Erevelles, N. (2011). The Colour of Violence: Reflecting on Gender, Race, and Disability in Wartime. In K. Q. Hall (Ed.), Feminist Disability Studies (pp. 117-135). Bloomington: Indiana University Press.
  2. Foucault, M. (1990). The History of Sexuality, Vol. 1: An Introduction (Reissue edition). New York: Vintage Random House. (Original work published 1978).
  3. Meunier, J. (2017). we autistics, we villages, we humanoids. In L. X. Z. Brown, E. Ashkenazy, & M. G. Onaiwu (Eds.), All the Weight of Our Dreams: On Living Racialized Autism (pp. 425-434). DragonBee Press.
  4. Rabinow, P., & Rose, N. (2006). Biopower today. BioSocieties, 1(2), 195-217.
  5. Robinson, Geoffrey C., Conry, J. L., & Conry, R. F. (1987). Clinical profile and prevalence of fetal alcohol syndrome in an isolated community in British Columbia. CMAJ: Canadian Medical Association Journal, 137(3), 203.
  6. Salmon, A. (2007a). Adaptation and Decolonization: Unpacking the Role of "Culturally Appropriate" Knowledge in the Prevention of Fetal Alcohol Syndrome. Canadian Journal of Native Education; Edmonton, 30(2), 257-274,322.
  7. Sinclair, J. (2012). Don't Mourn for Us. Autonomy, the Critical Journal of Interdisciplinary Autism Studies, 1(1). (Original work published 1993).
  8. Tait, C. L. (2003). Fetal alcohol syndrome among Aboriginal people in Canada: review and analysis of the intergenerational links to residential schools. Ottawa: Aboriginal Healing Foundation.
  9. Titchkosky, T. (2007). Reading and writing disability differently: The textured life of embodiment. University of Toronto Press.

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Authors
Inman, C. E.
Affiliations
University of Toronto (CA)
Corresponding author
Inman, Caleigh Estelle
Venue
Canadian Journal of Disability Studies
Publisher
University of Waterloo
Published
2019-07-01
Volume
8
Issue
4
Pages
227-261
ISSN
1929-9192 (ISSN-L)
DOI
10.15353/cjds.v8i4.531
OpenAlex
W3116887091
Cited by
9
References
51
Citations by year
2026: 3 · 2023: 3 · 2022: 2 · 2019: 1
FWCI
0.73
Type
journal article
Language
en
Open access
Licence
cc-by-nc-nd
Locations
Canadian Journal of Disability Studies (publishedVersion, cc-by-nc-nd)
Topics
  • Social Sciences › Health › Indigenous Health, Education, and Rights
  • Social Sciences › Safety Research › Disability Rights and Representation
  • Social Sciences › Anthropology › Indigenous Cultures and History
Keywords
autism spectrum disorder, indigenous peoples, fetal alcohol spectrum disorders, biopolitics, reproductive agency, indigenous women, settler colonialism, land dispossession, prevention campaigns

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