{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T11:21:00Z","timestamp":1787484060570,"version":"build-2736575974"},"reference-count":32,"publisher":"SAGE Publications","issue":"9","license":[{"start":{"date-parts":[[2026,7,28]],"date-time":"2026-07-28T00:00:00Z","timestamp":1785196800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,28]],"date-time":"2026-07-28T00:00:00Z","timestamp":1785196800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100009408","name":"Fondation Brain Canada","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100009408","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Stollery Childrens Hospital Foundation"},{"DOI":"10.13039\/501100023362","name":"Glenrose Rehabilitation Hospital Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100023362","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Autism Alliance of Canada"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Autism"],"published-print":{"date-parts":[[2026,9]]},"abstract":"<jats:p>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: Maskwac\u00ees (Alberta) and Six Nations of the Grand River (Ontario). Guided by a Community-Based Participatory Research (CBPR) approach and grounded in the n\u00eahiyaw concept of w\u00e2hk\u00f4towin (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.<\/jats:p>\n                  <jats:sec>\n                    <jats:title>Lay Abstract<\/jats:title>\n                    <jats:p>Autism 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, Maskwac\u00ees 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 w\u00e2hk\u00f4towin, 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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/13623613261464661","type":"journal-article","created":{"date-parts":[[2026,7,28]],"date-time":"2026-07-28T11:49:26Z","timestamp":1785239366000},"page":"2288-2300","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Exploring the Experiences of First Nations Caregivers of Autistic Children in Canada: A Qualitative Community-Based Participatory Research Study"],"prefix":"10.1177","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2736-5048","authenticated-orcid":false,"given":"Grant","family":"Bruno","sequence":"first","affiliation":[{"name":"Samson Cree Nation (Treaty 6 Territory), Maskwac\u00ees, Alberta, Canada"},{"name":"University of Alberta, Edmonton, Canada"},{"name":"Women and Children\u2019s Health Research Institute, Edmonton, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0002-2893-6946","authenticated-orcid":false,"given":"Mariam","family":"Ahmad","sequence":"additional","affiliation":[{"name":"Women and Children\u2019s Health Research Institute, Edmonton, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carmella","family":"Cutknife","sequence":"additional","affiliation":[{"name":"Samson Cree Nation (Treaty 6 Territory), Maskwac\u00ees, Alberta, Canada"},{"name":"Maskwac\u00ees Parents Place, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Heather","family":"Littlechild","sequence":"additional","affiliation":[{"name":"Maskwac\u00ees Education Schools Commission, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Trina","family":"Ertman","sequence":"additional","affiliation":[{"name":"Maskwac\u00ees Education Schools Commission, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacqueline","family":"Smith","sequence":"additional","affiliation":[{"name":"Six Nations of the Grand River, Ohsweken, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lonnie","family":"Zwaigenbaum","sequence":"additional","affiliation":[{"name":"University of Alberta, Edmonton, Canada"},{"name":"Women and Children\u2019s Health Research Institute, Edmonton, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4480-322X","authenticated-orcid":false,"given":"David","family":"Nicholas","sequence":"additional","affiliation":[{"name":"University of Calgary, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,7,28]]},"reference":[{"key":"e_1_3_3_2_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2022.916256"},{"key":"e_1_3_3_3_1","doi-asserted-by":"publisher","DOI":"10.1177\/1362361319894829"},{"key":"e_1_3_3_4_1","first-page":"581","article-title":"The Indian act of Canada","volume":"27","author":"Bartlett R. H.","year":"1977","unstructured":"Bartlett R. H. (1977). The Indian act of Canada. Buffalo Law Review, 27, 581.","journal-title":"Buffalo Law Review"},{"key":"e_1_3_3_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/2333393617742282"},{"key":"e_1_3_3_6_1","doi-asserted-by":"publisher","DOI":"10.1177\/13623613251318399"},{"key":"e_1_3_3_7_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-1-4614-5583-7_311"},{"key":"e_1_3_3_8_1","volume-title":"Uniquely wired: A story about autism and its gifts","author":"Cook J.","year":"2019","unstructured":"Cook J. (2019). Uniquely wired: A story about autism and its gifts. Boys Town Press."},{"key":"e_1_3_3_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rasd.2023.102314"},{"key":"e_1_3_3_10_1","unstructured":"Furr J. (2023). Circumventing ableism: A grounded theory study exploring caregiver strategies to promote a positive identity. [Doctoral dissertation Clemson University]. Clemson OPEN. https:\/\/open.clemson.edu\/all_dissertations\/3260\/?utm_source"},{"key":"e_1_3_3_11_1","doi-asserted-by":"publisher","DOI":"10.15353\/cjds.v11i2.886"},{"issue":"29","key":"e_1_3_3_12_1","first-page":"1","article-title":"On the inside looking in: Methodological insights and challenges in conducting qualitative insider research","volume":"19","author":"Greene M. J.","year":"2014","unstructured":"Greene M. J. (2014). On the inside looking in: Methodological insights and challenges in conducting qualitative insider research. The Qualitative Report, 19(29), 1\u201313.","journal-title":"The Qualitative Report"},{"key":"e_1_3_3_13_1","doi-asserted-by":"publisher","DOI":"10.15353\/cjds.v8i4.531"},{"key":"e_1_3_3_14_1","volume-title":"Introduction to methods for CBPR for health","author":"Israel B. A.","year":"2013","unstructured":"Israel B. A., Eng E., Schulz A. J., Parker E. A. (2013). Introduction to methods for CBPR for health. Jossey-Bass."},{"key":"e_1_3_3_15_1","first-page":"103","volume-title":"All my relations: Understanding the experiences of native Americans with disabilities","author":"Johnson S.","year":"2018","unstructured":"Johnson S. (2018). Jordan\u2019s principle and indigenous children with disabilities in Canada: Jurisdiction, advocacy, and research. In Weaver H., Yuen F. K. (Eds.), All my relations: Understanding the experiences of native Americans with disabilities (pp. 103\u2013114). Routledge."},{"key":"e_1_3_3_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/jan.13031"},{"issue":"1","key":"e_1_3_3_17_1","first-page":"1","article-title":"Contextualizing CBPR: Key principles of CBPR meet the indigenous research context","volume":"7","author":"LaVeaux D.","year":"2009","unstructured":"LaVeaux D., Christopher S. (2009). Contextualizing CBPR: Key principles of CBPR meet the indigenous research context. Pimatisiwin, 7(1), 1.","journal-title":"Pimatisiwin"},{"key":"e_1_3_3_18_1","doi-asserted-by":"publisher","DOI":"10.1080\/09687599.2014.923750"},{"key":"e_1_3_3_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9604.12398"},{"issue":"1","key":"e_1_3_3_20_1","first-page":"1","article-title":"Wahkotowin: Reconnecting to the spirit of n\u00eahiyaw\u00eawin (Cree Language)","volume":"7","author":"Napier K.","year":"2021","unstructured":"Napier K., Whiskeyjack L. (2021). Wahkotowin: Reconnecting to the spirit of n\u00eahiyaw\u00eawin (Cree Language). Engaged Scholar Journal, 7(1), 1\u201324.","journal-title":"Engaged Scholar Journal"},{"key":"e_1_3_3_21_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10488-013-0528-y"},{"key":"e_1_3_3_22_1","unstructured":"Canadian Institutes of Health Research. (2018). Tri-Council policy statement: Ethical conduct for research involving humans\u2014TCPS 2 (2018): Chapter 9\u2014Research involving the First Nations Inuit and M\u00e9tis Peoples of Canada. Government of Canada. https:\/\/ethics.gc.ca\/eng\/tcps2-eptc2_2018_chapter9-chapitre9.html"},{"key":"e_1_3_3_23_1","doi-asserted-by":"publisher","DOI":"10.1177\/11771801211039274"},{"key":"e_1_3_3_24_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10935-016-0454-3"},{"key":"e_1_3_3_25_1","doi-asserted-by":"crossref","unstructured":"Stahmer A. C. Vejnoska S. Iadarola S. Straiton D. Reinosa Segovia F. Luelmo P. Morgan E. H. Lee H. S. Javed A. Bronstein B. Hochheimer S. Cho E. Aranbarri A. Mandell D. Hassrick E. M. Smith T. Kasari C. (2019). Caregiver voices: Cross-cultural input on improving access to autism services. Journal of Racial and Ethnic Health Disparities 6(4) 752\u2013773. https:\/\/doi.org\/10.1007\/s40615-019-00575-y","DOI":"10.1007\/s40615-019-00575-y"},{"key":"e_1_3_3_26_1","unstructured":"Statistics Canada. (2022). Indigenous population continues to grow and is much younger than the non-indigenous population although the pace of growth has slowed. https:\/\/www150.statcan.gc.ca\/n1\/daily-quotidien\/220921\/dq220921a-eng.htm"},{"key":"e_1_3_3_27_1","doi-asserted-by":"publisher","DOI":"10.1525\/jer.2013.8.2.129"},{"key":"e_1_3_3_28_1","doi-asserted-by":"publisher","DOI":"10.1177\/11771801231167652"},{"key":"e_1_3_3_29_1","doi-asserted-by":"publisher","DOI":"10.1177\/13623613211018649"},{"key":"e_1_3_3_30_1","first-page":"525","article-title":"Six Nations of the Grand River, Ontario","volume":"15","author":"Weaver S. M.","year":"1978","unstructured":"Weaver S. M. (1978). Six Nations of the Grand River, Ontario. Handbook of North American Indians, Northeast, 15, 525\u2013536.","journal-title":"Handbook of North American Indians, Northeast"},{"key":"e_1_3_3_31_1","doi-asserted-by":"crossref","unstructured":"Whalen D. H. Moss M. Baldwin D. (2016). Healing through language: Positive physical health effects of Indigenous language use. F1000Research 5 Article 852. https:\/\/doi.org\/10.12688\/f1000research.8656.1","DOI":"10.12688\/f1000research.8656.1"},{"key":"e_1_3_3_32_1","doi-asserted-by":"publisher","DOI":"10.21991\/cf29370"},{"key":"e_1_3_3_33_1","doi-asserted-by":"publisher","DOI":"10.1177\/0361684313483111"}],"container-title":["Autism"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/13623613261464661","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/13623613261464661","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/13623613261464661","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,23]],"date-time":"2026-08-23T10:47:26Z","timestamp":1787482046000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/13623613261464661"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,28]]},"references-count":32,"journal-issue":{"issue":"9","published-print":{"date-parts":[[2026,9]]}},"alternative-id":["10.1177\/13623613261464661"],"URL":"https:\/\/doi.org\/10.1177\/13623613261464661","relation":{},"ISSN":["1362-3613","1461-7005"],"issn-type":[{"value":"1362-3613","type":"print"},{"value":"1461-7005","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,28]]}}}