Autistic Co-Led Community Priorities for Future Autism Research in Aotearoa New Zealand

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Emerson, L., Monk, R., van der Meer, L., Sutherland, D., & McLay, L. (2023). Autistic Co-Led Community Priorities for Future Autism Research in Aotearoa New Zealand. Autism in Adulthood, 6(2), 141-151. https://doi.org/10.1089/aut.2022.0109

Journal or book title
Autism in Adulthood
Publisher
SAGE Publications
Volume
6
Issue
2
Pages
141-151
Publication date: 6 Jun 2023 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
5
Publication authors identified as autistic
1 / 5 (20.0%)
  1. Lisa‐Marie Emerson
  2. Ruth Monk *
  3. Larah van der Meer
  4. Dean Sutherland
  5. Laurie McLay

Abstract

Background: Previous studies of community priorities for autism research have been limited by low representation of autistic people and thus a bias toward the views of families and professionals. We aimed to determine the first community-led priorities for autism research in Aotearoa New Zealand (NZ). Methods: Autistic people were essential partners in the project, from inception and design through to methods and outputs. We gathered the views of the autistic and autism communities (including family, practitioners, and researchers) through focus groups ( n = 55) and an online survey ( n = 450). Almost 40% of the survey respondents indicated that they were autistic. Results: The findings across the focus groups and survey highlighted the importance of research that centralizes the experiences and needs of autistic people, particularly of autistic New Zealanders, including culturally specific research for Māori and Pacific peoples. All five priority topics for autistic adults were also priorities for at least one other group: (1) Health, mental health, and well-being of autistic people (all groups); (2) Services across the life span (autistic adults, health care/disability, and education practitioners); (3) Needs of autistic people in Aotearoa NZ (autistic adults, whānau); (4) Perspectives from autistic people with a diverse range of support needs (autistic adults; education practitioners); (5) Quality of life of autistic people in Aotearoa NZ (autistic adults; health care/disability practitioners). Conclusions: We discuss the advantages of autistic involvement in research, and how these community priorities can inform future research and policy in NZ.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 17:07.

Cited references
24
With a DOI
20
Without a DOI, from raw bibliography text
4
8 / 24 (33.3%) cited references include at least one author identified as autistic.
References with data to complete
4 / 24 (16.7%)
References with detected author names
20 / 24 (83.3%)
Without detected author names
4
Without a structured title
4
Without a stable identifier
4
References with raw author names still to review
4
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
127
From DOI or external metadata
127
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
76 / 127 (59.8%) names are linked to an author already present in AutiHub. 51 / 127 (40.2%) names are not yet linked.
Names linked to a person identified as autistic
23 / 127 (18.1%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 23 / 76 (30.3%). Distinct people identified as autistic: 21 / 112 (18.8%).
  1. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  5. Lauren Harris , Daniel Gilmore , Anne Longo , Brittany N. Hand (2021). Short report: Patterns of US federal autism research funding during 2017–2019 . Autism, 25(7), 2135-2139. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211003430 OpenAlex: https://openalex.org/W3138253050
    Crossref OpenAlex OpenCitations
  7. (n.d.). Interagency Autism Coordinating Committee. Office of Autism Research Coordination National Institute of Mental Health Autistica Canadian Institutes of Health Research and Macquarie University. 2016 International Autism Spectrum Disorder Research Portfolio Analysis Report. https://iacc.hhs.gov/publications/international-portfolio-analysis/2016 (last accessed March23 2023).
    Type: Other
    Crossref
  9. Nicholas Bowden , Hiran Thabrew , Jesse Koka'ua , Richard Audas , Barry Milne , Kirsten Smiler et al. (2020). Autism spectrum disorder/Takiwātanga: An Integrated Data Infrastructure-based approach to autism spectrum disorder research in New Zealand . Autism, 24(8), 2213-2227. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320939329 OpenAlex: https://openalex.org/W3043799496
    Crossref OpenAlex OpenCitations
  10. Sue Fletcher-Watson , Fabio Apicella , Bonnie Auyeung , Stepanka Beranova , Frederique Bonnet-Brilhault , Ricardo Canal-Bedia et al. (2017). Attitudes of the autism community to early autism research . Autism, 21(1), 61-74. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315626577 OpenAlex: https://openalex.org/W2339741724
    Crossref OpenAlex OpenCitations
  11. Paige E. Cervantes , Maya Matheis , Jasper Estabillo , Dana E. M. Seag , Katherine L. Nelson , Robin Peth-Pierce et al. (2021). Trends Over a Decade in NIH Funding for Autism Spectrum Disorder Services Research . Journal of Autism and Developmental Disorders, 51(8), 2751-2763. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04746-3 OpenAlex: https://openalex.org/W3092435479
    Crossref OpenAlex OpenCitations
  13. Thomas W Frazier , Géraldine Dawson , Donna S. Murray , Andy J. Shih , Jessica Snyder Sachs , Angela Geiger (2018). Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders . Journal of Autism and Developmental Disorders, 48(11), 3965-3971. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3642-6 OpenAlex: https://openalex.org/W2807852720
    AutiHub · Documentation center Crossref OpenAlex OpenCitations
  14. Jacquiline den Houting * , Elizabeth Pellicano (2019). A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017 . Journal of Autism and Developmental Disorders, 49(11), 4400-4408. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04155-1 OpenAlex: https://openalex.org/W2966196890
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  18. Dawn Adams , Kate Young (2021). A Systematic Review of the Perceived Barriers and Facilitators to Accessing Psychological Treatment for Mental Health Problems in Individuals on the Autism Spectrum . Review Journal of Autism and Developmental Disorders, 8(4), 436-453. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-020-00226-7 OpenAlex: https://openalex.org/W3094212365
    Crossref OpenAlex OpenCitations
  19. (n.d.). Australian Autism Research Council. Research report on focus groups to identify research questions for community informed priority areas. https://www.autismcrc.com.au/sites/default/files/aarc/AARC_Research_Report_Focus_Groups_Final_Report.pdf (last accessed October27 2020).
    Type: Other
    Crossref
  20. Kirsten Corden , Rebecca Brewer , Eilidh Cage (2022). A systematic review of healthcare professionals’ knowledge, self-efficacy and attitudes towards working with autistic people . Review Journal of Autism and Developmental Disorders, 9(3), 386. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-021-00263-w OpenAlex: https://openalex.org/W3163025874
    Crossref OpenAlex OpenCitations
  21. Jessica Tupou , Sally Curtis , Dorothy Taare-Smith , Ali Glasgow , Hannah Waddington (2021). Māori and autism: A scoping review . Autism, 25(7), 1844-1858. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211018649 OpenAlex: https://openalex.org/W3164054252
    Crossref OpenAlex OpenCitations
  22. (n.d.). Ministry of Health. New Zealand Health Survey 2020/2021: Annual Data Explorer [Data File]. https://minhealthnz.shinyapps.io/nz-health-survey-2020-21-annual-data-explorer/ (last accessed March23 2023).
    Type: Other
    Crossref
  24. (n.d.). Autism Cooperative Research Centre. Annual Report 2018–2019. https://www.autismcrc.com.au/sites/default/files/2019-11/Autism%20CRC%20Annual%20Report%202018-19%20-%20Web%20version%20-%204-11-2019.pdf (last accessed October27 2022).
    Type: Other
    Crossref