“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

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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

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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
26
Total cited references integrated for this publication.
Cited references with an identified autistic author
11 / 26 (42.3%)
Cited author occurrences identified as autistic
21 / 122 (17.2%)
Among occurrences linked to AutiHub author records: 21 / 81 (25.9%). Distinct cited authors identified as autistic: 16 / 103 (15.5%).
Cited author occurrences linked to AutiHub author records
81 / 122 (66.4%)
Distinct linked cited authors: 62 / 103 (60.2%)
Linked cited-author occurrences not identified as autistic
60 / 81 (74.1%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 60 / 122 (49.2%). Distinct linked cited authors not identified as autistic: 46 / 62 (74.2%).
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