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Cited by 13Autism Spectrum Disorder ResearchIndigenous Health, Education, and RightsFamily and Disability Support Research

Psychosocial resources developed and trialled for Indigenous people with autism spectrum disorder and their caregivers: a systematic review and catalogue

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Shochet, Ian M., Orr, Jayne A., Kelly, Rachel L., Wurfl, Astrid M., Saggers, Beth R., Carrington, Suzanne B.·2020·International Journal for Equity in Health
DOI 10.1186/s12939-020-01247-8PMC PMC7412645
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Abstract

Background: People with autism spectrum disorder (ASD) face many psychosocial challenges throughout life, highlighting the need for programs and resources promoting psychosocial wellbeing. Indigenous peoples with ASD and/or other neurodevelopmental disorders must overcome cultural and social barriers to access such supports. This study aimed to identify psychosocial programs and resources developed world-wide for this population by systematically reviewing research evaluating programs aiming to promote the psychosocial wellbeing of this population and/or their caregivers; and collating and reviewing resources developed to promote their psychosocial wellbeing. Methods: Searches were last conducted in December 2019. The systematic review searched 28 electronic databases, and 25 electronic databases were searched for resources promoting psychosocial wellbeing. Additional published and unpublished studies were identified from relevant reviews, authors of eligible articles, and experts working in Indigenous Health. Articles and resources were screened for inclusion using pre-defined criteria. Articles included in the systematic review were assessed for quality using the Mixed Methods Assessment Tool. The diversity and paucity of outcomes reported precluded pooling of study findings for meta-analysis. Results: Seven articles situated in the USA (2), Canada (3) and Australia (2); and eleven resources developed in Australia (9), Canada (1) and New Zealand (1) met inclusion criteria. All articles showed some promising findings for improving psychosocial wellbeing for Indigenous children with ASD and/or another neurodevelopmental disorder, and 5 of 7 evaluated the cultural adaptation of an existing evidence-based program for an Indigenous population. However, methodological quality was moderate or low (57% and 43% of articles respectively) and no studies had adult participants. The psychosocial wellbeing supports provided by the 11 resources included psychoeducation, community support, and services/workshops. Conclusions: Despite the paucity of research and resources found, important exemplars demonstrate that existing programs can be adapted to support Indigenous people with ASD and other neurodevelopmental disorders. While future policy should endeavour to facilitate Indigenous people’s access to support services, and encourage researchers to develop and evaluate programs promoting psychosocial wellbeing for this population, given complexities of designing and evaluating new programs, careful and appropriate cultural adaptations of existing evidence-based programs would increase feasibility of ongoing research without compromising outcomes.

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  • The reviewed literature identified concerns about negative stereotyping and discrimination 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.

    “concerns about negative stereotyping and discrimination (Lindblom 2014, Di Pietro & Illes, 2016; Shochet et al., 2020)”

    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 Shochet et al., 2020

    The Background section identifies stereotyping and ethnic bias as obstacles to accurate autism diagnosis and says diagnostic barriers may deny Indigenous people timely treatment. Its discussion of stereotyping and underdiagnosis is framed around Australia, however; it does not establish this specific link for Indigenous children in Canada. (LLM, conf=0.84)

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  • More specific prevalence rates related to Indigenous children with autism remain absent.

    “While general prevalence data and public awareness regarding autism have risen globally, more specific prevalence rates related to Indigenous children with autism remain absent (Di Pietro & Illes, 2016; Lindblom, 2014b; Shochet et al., 2020).”

    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 Shochet et al., 2020

    The Background section, under “Factors that impact the prevalence estimate,” says ASD prevalence in Indigenous populations is largely unknown and rates are often assumed to equal the national average. That supports the lack of specific prevalence data, but the paper does not establish that rates for Indigenous children are entirely absent; “remain absent” is stronger than “largely unknown.” No page number is available in our copy. (LLM, conf=0.82)

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1 of the 86 references couldn’t be matched to a known paper.

Research works printed but not linked: 1

  1. [69]Najera B ABA in native American homes: a culturally responsive training for paraprofessionals. PhD [dissertation] 2012 Malibu (CA) Pepperdine University

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Authors
Shochet, I. M., Orr, J. A., Kelly, R. L., Wurfl, A. M., Saggers, B. R., & Carrington, S. B.
Affiliations
Queensland University of Technology (AU)
Corresponding author
Orr, Jayne A.
ORCID
Venue
International Journal for Equity in Health
Publisher
Springer Science and Business Media LLC
Published
2020-08-06
Volume
19
Issue
1
Pages
134-134
ISSN
1475-9276 (ISSN-L)
DOI
10.1186/s12939-020-01247-8
PMC
PMC7412645
OpenAlex
W3047469142
Cited by
13
References
86
Citations by year
2026: 3 · 2025: 2 · 2024: 2 · 2023: 3 · 2022: 3
FWCI
0.20
Type
journal article
Language
en
Open access
Licence
Locations
  • International Journal for Equity in Health (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • QUT ePrints (Queensland University of Technology) (submittedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
  • Cooperative Research Centre for Living with Autism (2.029)
  • Australian Government
Topics
  • Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
  • Social Sciences › Health › Indigenous Health, Education, and Rights
  • Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
Keywords
autism spectrum disorder, indigenous peoples, psychosocial well-being, caregivers, neurodevelopmental disorders, cultural adaptation, evidence-based programs, psychoeducation, community support, Indigenous health
MeSH terms
Psychiatric Rehabilitation, Autism Spectrum Disorder, Indigenous Peoples, Psychosocial Intervention, Australia, Canada, Developmental Disabilities, Culture, Delivery of Health Care, Persons with Disabilities, Disabled Persons, Health Resources, Humans, New Zealand, Social Support, United States, Program Evaluation, Caregivers

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