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Exploring the Experiences of First Nations Caregivers of Autistic Children in Canada: A Qualitative Community-Based Participatory Research Study.

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Title: Exploring the Experiences of First Nations Caregivers of Autistic Children in Canada: A Qualitative Community-Based Participatory Research Study.
Authors: Bruno G; Samson Cree Nation (Treaty 6 Territory), Maskwacîs, Alberta, Canada.; University of Alberta, Edmonton, Canada.; Women and Children's Health Research Institute, Edmonton, Alberta, Canada., Ahmad M; Women and Children's Health Research Institute, Edmonton, Alberta, Canada., Cutknife C; Samson Cree Nation (Treaty 6 Territory), Maskwacîs, Alberta, Canada.; Maskwacîs Parents Place, Alberta, Canada., Littlechild H; Maskwacîs Education Schools Commission, Alberta, Canada., Ertman T; Maskwacîs Education Schools Commission, Alberta, Canada., Smith J; Six Nations of the Grand River, Ohsweken, Ontario, Canada., Zwaigenbaum L; University of Alberta, Edmonton, Canada.; Women and Children's Health Research Institute, Edmonton, Alberta, Canada., Nicholas D; University of Calgary, Alberta, Canada.
Source: Autism : the international journal of research and practice [Autism] 2026 Sep; Vol. 30 (9), pp. 2288-2300. Date of Electronic Publication: 2026 Jul 28.
Publication Type: Journal Article
Language: English
Journal Info: Publisher: Sage Publications In Association With The National Autistic Society Country of Publication: England NLM ID: 9713494 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1461-7005 (Electronic) Linking ISSN: 13623613 NLM ISO Abbreviation: Autism Subsets: MEDLINE
Imprint Name(s): Publication: London : Sage Publications In Association With The National Autistic Society
Original Publication: London ; Thousand Oaks, CA : Sage Publications in association with the National Autistic Society, c1997-
MeSH Terms: Autistic Disorder*/ethnology , Autistic Disorder*/nursing , Caregivers*/psychology , Indigenous Canadians*/ethnology , Indigenous Canadians*/psychology, Burnout, Psychological/ethnology ; Burnout, Psychological/psychology ; Canada/ethnology ; Adult ; Child ; Female ; Humans ; Male ; Middle Aged ; Community-Based Participatory Research ; Ontario ; Qualitative Research ; Social Stigma
Abstract: Autism exists across all populations, including among Indigenous Peoples, yet the experiences of First Nations caregivers of Autistic children remain significantly under-researched. This study explores the lived realities of caregivers in two First Nations communities: Maskwacîs (Alberta) and Six Nations of the Grand River (Ontario). Guided by a Community-Based Participatory Research (CBPR) approach and grounded in the nêhiyaw concept of wâhkôtowin (relationality), this research was co-led by the Autism Community Research Circle, which included Elders, Autistic individuals, caregivers, and professionals. Fourteen caregivers participated in semi-structured interviews, and thematic analysis revealed eight key themes: lack of understanding and recognition; caregiver burnout; challenges with diagnosis and clinical navigation; school experiences; advocacy; stigma and ableism; culture and ceremony; and acceptance and transformation. Caregivers identified barriers including jurisdictional divides, racism, and lack of culturally appropriate services, but also emphasized the importance of kinship, cultural identity, and community acceptance. Autism was often reframed through Indigenous worldviews as a gift from the Creator, highlighting a strength-based perspective rooted in relationality. This study addresses a critical gap in the literature and calls for culturally grounded, community-led autism supports that align with Indigenous knowledge systems. Findings offer essential insights to inform more responsive policy, programming, and future research.Lay AbstractAutism exists in every community, including among First Nations Peoples in Canada, yet very little research has explored the experiences of Indigenous families raising Autistic children. This study looked at what life is like for First Nations caregivers of Autistic children in two communities, Maskwacîs in Alberta and Six Nations of the Grand River in Ontario. The project was led in partnership with community members, including Autistic people, Elders, caregivers, and professionals, through the Autism Community Research Circle. Together, we used a community-based approach that followed local teachings and values, especially the Cree concept of wâhkôtowin, which means kinship and relationship. Fourteen caregivers took part in interviews where they shared their stories and perspectives. We learned that caregivers often face major challenges in getting autism diagnoses and finding appropriate supports and services. Many spoke about burnout, stigma, and racism, as well as frustration with school systems and health care providers. Despite these barriers, caregivers described the strength they draw from family, culture, and community. Cultural teachings, ceremonies, and language helped caregivers and their children feel proud, connected, and supported. Some families described autism as a gift from the Creator, showing how Indigenous ways of understanding autism can promote acceptance and belonging. This research shows the need for autism programs, services, and policies that are guided by Indigenous knowledge, community leadership, and cultural safety. It also highlights the importance of seeing autism through a strengths-based lens that values family relationships, community, and identity. By listening to First Nations caregivers, we can build more inclusive and culturally grounded supports for Autistic children and their families.
Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
References: Autism. 2025 Feb;29(2):275-283. (PMID: 39905274)
J Empir Res Hum Res Ethics. 2013 Apr;8(2):129-40. (PMID: 23651937)
J Adv Nurs. 2016 Dec;72(12):2954-2965. (PMID: 27221824)
Autism. 2020 Jul;24(5):1031-1046. (PMID: 31928063)
Adm Policy Ment Health. 2015 Sep;42(5):533-44. (PMID: 24193818)
Pimatisiwin. 2009 Jun 1;7(1):1. (PMID: 20150951)
J Prim Prev. 2017 Apr;38(1-2):67-86. (PMID: 27807659)
Autism. 2021 Oct;25(7):1844-1858. (PMID: 34088216)
J Racial Ethn Health Disparities. 2019 Aug;6(4):752-773. (PMID: 30859514)
Glob Qual Nurs Res. 2017 Nov 24;4:2333393617742282. (PMID: 29204457)
Front Psychiatry. 2022 Sep 15;13:916256. (PMID: 36186886)
Contributed Indexing: Keywords: Canada; First Nation; Indigenous; autism; caregiver; community-based participatory research; neurodiversity
Entry Date(s): Date Created: 20260728 Date Completed: 20260821 Latest Revision: 20260824
Update Code: 20260825
PubMed Central ID: PMC13494114
DOI: 10.1177/13623613261464661
PMID: 42517456
Database: MEDLINE
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  Data: Exploring the Experiences of First Nations Caregivers of Autistic Children in Canada: A Qualitative Community-Based Participatory Research Study.
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  Data: Autism exists across all populations, including among Indigenous Peoples, yet the experiences of First Nations caregivers of Autistic children remain significantly under-researched. This study explores the lived realities of caregivers in two First Nations communities: Maskwacîs (Alberta) and Six Nations of the Grand River (Ontario). Guided by a Community-Based Participatory Research (CBPR) approach and grounded in the nêhiyaw concept of wâhkôtowin (relationality), this research was co-led by the Autism Community Research Circle, which included Elders, Autistic individuals, caregivers, and professionals. Fourteen caregivers participated in semi-structured interviews, and thematic analysis revealed eight key themes: lack of understanding and recognition; caregiver burnout; challenges with diagnosis and clinical navigation; school experiences; advocacy; stigma and ableism; culture and ceremony; and acceptance and transformation. Caregivers identified barriers including jurisdictional divides, racism, and lack of culturally appropriate services, but also emphasized the importance of kinship, cultural identity, and community acceptance. Autism was often reframed through Indigenous worldviews as a gift from the Creator, highlighting a strength-based perspective rooted in relationality. This study addresses a critical gap in the literature and calls for culturally grounded, community-led autism supports that align with Indigenous knowledge systems. Findings offer essential insights to inform more responsive policy, programming, and future research.Lay AbstractAutism exists in every community, including among First Nations Peoples in Canada, yet very little research has explored the experiences of Indigenous families raising Autistic children. This study looked at what life is like for First Nations caregivers of Autistic children in two communities, Maskwacîs in Alberta and Six Nations of the Grand River in Ontario. The project was led in partnership with community members, including Autistic people, Elders, caregivers, and professionals, through the Autism Community Research Circle. Together, we used a community-based approach that followed local teachings and values, especially the Cree concept of wâhkôtowin, which means kinship and relationship. Fourteen caregivers took part in interviews where they shared their stories and perspectives. We learned that caregivers often face major challenges in getting autism diagnoses and finding appropriate supports and services. Many spoke about burnout, stigma, and racism, as well as frustration with school systems and health care providers. Despite these barriers, caregivers described the strength they draw from family, culture, and community. Cultural teachings, ceremonies, and language helped caregivers and their children feel proud, connected, and supported. Some families described autism as a gift from the Creator, showing how Indigenous ways of understanding autism can promote acceptance and belonging. This research shows the need for autism programs, services, and policies that are guided by Indigenous knowledge, community leadership, and cultural safety. It also highlights the importance of seeing autism through a strengths-based lens that values family relationships, community, and identity. By listening to First Nations caregivers, we can build more inclusive and culturally grounded supports for Autistic children and their families.
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  Data: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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  Data: Autism. 2025 Feb;29(2):275-283. (PMID: <searchLink fieldCode="PM" term="%2239905274%22">39905274)</searchLink><br />J Empir Res Hum Res Ethics. 2013 Apr;8(2):129-40. (PMID: <searchLink fieldCode="PM" term="%2223651937%22">23651937)</searchLink><br />J Adv Nurs. 2016 Dec;72(12):2954-2965. (PMID: <searchLink fieldCode="PM" term="%2227221824%22">27221824)</searchLink><br />Autism. 2020 Jul;24(5):1031-1046. (PMID: <searchLink fieldCode="PM" term="%2231928063%22">31928063)</searchLink><br />Adm Policy Ment Health. 2015 Sep;42(5):533-44. (PMID: <searchLink fieldCode="PM" term="%2224193818%22">24193818)</searchLink><br />Pimatisiwin. 2009 Jun 1;7(1):1. (PMID: <searchLink fieldCode="PM" term="%2220150951%22">20150951)</searchLink><br />J Prim Prev. 2017 Apr;38(1-2):67-86. (PMID: <searchLink fieldCode="PM" term="%2227807659%22">27807659)</searchLink><br />Autism. 2021 Oct;25(7):1844-1858. (PMID: <searchLink fieldCode="PM" term="%2234088216%22">34088216)</searchLink><br />J Racial Ethn Health Disparities. 2019 Aug;6(4):752-773. (PMID: <searchLink fieldCode="PM" term="%2230859514%22">30859514)</searchLink><br />Glob Qual Nurs Res. 2017 Nov 24;4:2333393617742282. (PMID: <searchLink fieldCode="PM" term="%2229204457%22">29204457)</searchLink><br />Front Psychiatry. 2022 Sep 15;13:916256. (PMID: <searchLink fieldCode="PM" term="%2236186886%22">36186886)</searchLink>
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