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

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Emerson, L., Monk, R., Meer, L. v. d., 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

Publication date: 6 Jun 2023 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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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.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:31.

Cited references
24
Total cited references integrated for this publication.
Cited references with an identified autistic author
7 / 24 (29.2%)
Cited author occurrences identified as autistic
16 / 127 (12.6%)
Among occurrences linked to AutiHub author records: 16 / 68 (23.5%). Distinct cited authors identified as autistic: 14 / 112 (12.5%).
Cited author occurrences linked to AutiHub author records
68 / 127 (53.5%)
Distinct linked cited authors: 53 / 112 (47.3%)
Linked cited-author occurrences not identified as autistic
52 / 68 (76.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 52 / 127 (40.9%). Distinct linked cited authors not identified as autistic: 39 / 53 (73.6%).
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