“The world needs autistic and non-autistic people to be the best world it can be”: A qualitative study of the perspectives of autistic youth on the future of 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.

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Emerson, L., Sutherland, D., Monk, R., Lim, M. S., & McLay, L. (2025). “The world needs autistic and non-autistic people to be the best world it can be”: A qualitative study of the perspectives of autistic youth on the future of research in Aotearoa New Zealand. Research in Neurodiversity, 1, 100003. https://doi.org/10.1016/j.rin.2025.100003

Publication date: 11 Oct 2025 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. Dean Sutherland
  3. Ruth Monk *
  4. Melissa S Lim
  5. Laurie McLay

Abstract

International studies have documented the autism research priorities of the community. However, the perspectives of autistic youth are currently under-represented. We aimed to determine the perspectives of autistic youth on the priorities for future autism research, and the distribution of funding for previous autism research in Aotearoa New Zealand. Our team of autistic and non-autistic researchers drew on a participatory research approach to include people from the Autistic and autism communities in decision-making around the design and execution of the research. Eleven autistic youth aged 8 – 18 years were given a choice of how they could take part in the research: semi-structured interviews (n = 9), questionnaire (n = 2) or focus groups (n = 0). The 11 participating youth were aged from 8 – 18 years ( M = 11.36 years, SD = 3.2). Young people were asked five open-ended questions: two questions asked their opinions on future research priorities; 3 questions were in response to an infographic with historical distribution of funding for autism research in Aotearoa New Zealand. Reflexive thematic analysis of data was utilised to determined future priorities for autism research: understanding the autistic experience; inclusion of autistic individuals in communities; autism-friendly and individualised supports; increase understanding of autism. In addition, autistic youth expressed that the distribution of funding for autism research needs to align with the priorities and needs of the community. We discuss how the views of autistic youth in this study compare to those of autistic adults and the autism community. The inclusion of youth opinions in future autism research is vital as they are informed by recent experiences of support during childhood. • This research looks in detail at the opinions of autistic young people on autism research. • The research was carried out by autistic and non-autistic researchers, including interviews, data analysis and report writing. • Autistic young people want future autism research to answer questions about what it is like to be autistic; ways to make education more inclusive; the design of autism-friendly supports; how to help other people understand autism. • Autistic young people want the funding of autism research to change so it is in line with what autistic people want research to focus on.

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
26
With a DOI
22
Without a DOI, from raw bibliography text
4
12 / 26 (46.2%) cited references include at least one author identified as autistic.
References with data to complete
1 / 26 (3.8%)
References with detected author names
25 / 26 (96.2%)
Without detected author names
1
Without a structured title
1
Without a stable identifier
4
References with raw author names still to review
1
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
122
From DOI or external metadata
122
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
3
86 / 122 (70.5%) names are linked to an author already present in AutiHub. 36 / 122 (29.5%) names are not yet linked.
Names linked to a person identified as autistic
29 / 122 (23.8%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 29 / 86 (33.7%). Distinct people identified as autistic: 24 / 103 (23.3%).
  4. Braun (2012). Thematic analysis .
    Type: Other
    Crossref
  6. Megan L. E. Clark , Dawn Adams (2020). Listening to parents to understand their priorities for autism research . PLOS ONE, 15(8), e0237376. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0237376 OpenAlex: https://openalex.org/W3048464255
    Crossref OpenAlex
  7. 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
  8. Kate Cooper , Sanjay Kumarendran , Manuela Barona (2024). A systematic review and meta-synthesis on perspectives of autistic young people and their parents on psychological well-being . Clinical Psychology Review, 109, 102411. Elsevier BV.
    Type: Article DOI: 10.1016/j.cpr.2024.102411 OpenAlex: https://openalex.org/W4391973171
    Crossref OpenAlex
  9. Cooper, Harris M. , Camic, Paul Marc 1955- , Long, Debra L. (2012). APA handbook of research methods in psychology, Vol 2: Research designs: Quantitative, qualitative, neuropsychological, and biological. American Psychological Association.
    Type: Book DOI: 10.1037/13620-000 OpenAlex: https://openalex.org/W2475524498
    OpenAlex
  10. Kate Cooper , Laura G. E. Smith , Ailsa Russell (2017). Social identity, self‐esteem, and mental health in autism . European Journal of Social Psychology, 47(7), 844-854. Wiley.
    Type: Article DOI: 10.1002/ejsp.2297 OpenAlex: https://openalex.org/W2593228649
    Crossref OpenAlex
  13. 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
  15. Drysdale (2020). Rates of autism spectrum disorder diagnosis for children and adolescents in the hutt valley region of New Zealand between 2012 and 2016 . Research in Autism Spectrum Disorders, 73(ss-6).
    Type: Other
    Crossref
  16. Emerson (2023). A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021 . Autism, 27(8), 2256.
    Type: Other
    Crossref
  18. Francesca Happé , Uta Frith (2020). Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research . Journal of Child Psychology and Psychiatry, 61(3), 218-232. Wiley.
    Type: Article DOI: 10.1111/jcpp.13176 OpenAlex: https://openalex.org/W3003423347
    Crossref OpenAlex
  21. Interagency Autism Coordinating Committee, Office of Autism Research Coordination, National Institute of Mental Health, & on behalf of the Interagency Autism Coordinating Committee. (2019). 2016 IACC autism spectrum disorder research: Portfolio analysis report. 〈 https://iacc.hhs.gov/portfolio-analysis/2016/index.shtml〉 .
    Type: Other
    Crossref
  25. Damian Milton * , Emine Gurbuz , Beatriz López (2022). The ‘double empathy problem’: Ten years on . Autism, 26(8), 1901-1903. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221129123 OpenAlex: https://openalex.org/W4306860573
    Crossref OpenAlex