A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021

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Emerson, L., Pellicano, E., Monk, R., Lim, M. S., Heaton, J. L., & McLay, L. (2023). A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021. Autism, 136236132311559. https://doi.org/10.1177/13623613231155954

Publication date: 19 Feb 2023 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
6
Publication authors identified as autistic
1 / 6 (16.7%)
  1. Lisa‐Marie Emerson
  2. Elizabeth Pellicano
  3. Ruth Monk *
  1. Melissa S Lim
  2. Jessica L. Heaton
  3. Laurie McLay

Abstract

Previously documented global trends in autism research funding have been skewed towards biology research, which is at odds with the priorities expressed by autistic and autism community members. We aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand, and to explore the views of the autistic and autism communities on this funding distribution. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We categorised the funding for autism research to enable comparison to that previously documented in other countries. We elicited the views of the autistic and autism communities in relation to the funded autism research, through an online survey and a series of focus groups. The largest proportion of money and number of grants was awarded to biological research. Community members expressed dissatisfaction with this pattern of funding, and noted that it does not address the needs and priorities of the autistic community. Community members suggested that the funding pattern indicated a lack of autistic consultation and engagement in research design and funding allocation. The priorities of the autistic and autism communities need to be considered by researchers and funders alike. We discuss how autistic inclusion in research can be supported through decision-making regarding funding and ethics relating to autism research. Lay Abstract We aimed to document the areas of autism research that have previously been funded in Aotearoa New Zealand. We searched for research grants awarded to autism research in Aotearoa New Zealand between 2007 and 2021. We compared the funding distribution in Aotearoa New Zealand to other countries. We asked people from the autistic community and broader autism community whether they were satisfied with this funding pattern, and whether it aligned with what is important to them and to autistic people. We found that the majority of funding for autism research was awarded to biology research (67%). Members of the autistic and autism communities were dissatisfied with the funding distribution, and expressed a lack of alignment with what is important to them. People from the community indicated that the funding distribution did not address the priorities of autistic people, and that it indicated a lack of engagement with autistic people. Autism research funding needs to reflect the priorities of the autistic and autism communities. Autistic people need to be included in autism research and related funding decisions.

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
34
Total cited references integrated for this publication.
Cited references with an identified autistic author
8 / 34 (23.5%)
Cited author occurrences identified as autistic
16 / 92 (17.4%)
Among occurrences linked to AutiHub author records: 16 / 64 (25.0%). Distinct cited authors identified as autistic: 14 / 81 (17.3%).
Cited author occurrences linked to AutiHub author records
64 / 92 (69.6%)
Distinct linked cited authors: 53 / 81 (65.4%)
Linked cited-author occurrences not identified as autistic
48 / 64 (75.0%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 48 / 92 (52.2%). Distinct linked cited authors not identified as autistic: 39 / 53 (73.6%).
  1. Elizabeth Pellicano , Adam Dinsmore , Tony Charman (2013). A future made together: shaping autism research in the UK . IOE EPrints.
    Type: Article OpenAlex: https://openalex.org/W150421255
    OpenAlex
  2. 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
  3. null (2016). null . Philosophy Study, 6(9). David Publishing Company.
    Type: Article DOI: 10.17265/2159-5313/2016.09.003 OpenAlex: https://openalex.org/W2567289819
    Crossref OpenAlex OpenCitations
  4. Elizabeth Pellicano , Ari Ne'eman * , Marc Stears (2011). Engaging, not excluding: a response to Walsh et al. Nature Reviews Neuroscience, 12(12), 769-769. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nrn3113-c1 OpenAlex: https://openalex.org/W1969906100
    Crossref OpenAlex OpenCitations
  5. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. Informa UK Limited.
    Type: Article DOI: 10.1080/2159676x.2019.1628806 OpenAlex: https://openalex.org/W2950504429
    Crossref OpenAlex OpenCitations
  8. T. M. Krahn , A. Fenton (2012). Funding Priorities: Autism and the Need for a More Balanced Research Agenda in Canada . Public Health Ethics, 5(3), 296-310. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/phe/phs027 OpenAlex: https://openalex.org/W2029661646
    Crossref OpenAlex OpenCitations
  9. 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
  10. 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
  11. Jennifer Singh , Judy Illes , Laura Lazzeroni , Joachim Hallmayer (2009). Trends in US Autism Research Funding . Journal of Autism and Developmental Disorders, 39(5), 788-795. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-008-0685-0 OpenAlex: https://openalex.org/W2042889075
    Crossref OpenAlex OpenCitations
  14. Daniels S. A. (2018). The International Society for Autism Research . The International Society for Autism Research.
    Type: Other
    Crossref
  15. den Houting J (2021). Participatory and inclusive autism research practice guides . Participatory and Inclusive Autism Research Practice Guides, 192236536X.
    Type: Other
    Crossref
  19. 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 Scholars Crossref OpenAlex OpenCitations
  20. (n.d.). Emerson L. M., Monk R., van der Meer L., Sutherland D., McLay L. (under review). Autistic co-led community priorities for future autism research in Aotearoa New Zealand.
    Type: Other
    Crossref
  21. Thomas Frazier , Géraldine Dawson , Donna S. Murray , Andy 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
  22. Health Research Council of New Zealand, Ministry of Business, Innovation and Employment, & Ministry of Health. (2019). The New Zealand health research prioritisation framework: Maximising the benefits of health research for New Zealanders. https://hrc.govt.nz/sites/default/files/2020-01/NZ%20Prioritisation-Framework-FA-web_0.pdf
    Type: Other
    Crossref
  23. 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
  24. Interagency Autism Coordinating Committee (IACC). (2017). 2016-2017 interagency autism coordinating committee strategic plan for autism spectrum disorder. https://iacc.hhs.gov/publications/strategic-plan/2017/
    Type: Other
    Crossref
  25. Interagency Autism Coordinating Committee. (2020). IACC strategic plan for autism spectrum disorder (ASD) 2018-2019 update. U. S. Department of Health & Human Services. http://iacc.hhs.gov/strategic-plan/2019/
    Type: Other
    Crossref
  27. Interagency Autism Coordinating Committee, Office of Autism Research Coordination, National Institute of Mental Health, Autistica, Canadian Institutes of Health Research, & Macquarie University. (2019). 2016 international autism spectrum disorder research portfolio analysis report. https://iacc.hhs.gov/publications/international-portfolio-analysis/2016
    Type: Other
    Crossref
  28. Kingi T. K. (2017). Maea te toi ora: Māori health transformations . Maea te toi ora: Māori health transformations.
    Type: Other
    Crossref
  30. Ministry of Health. (2021). New Zealand health survey 2020/2021: Annual data explorer [Data file]. https://minhealthnz.shinyapps.io/nz-health-survey-2020-21-annual-data-explorer/
    Type: Other
    Crossref
  31. Office of Autism Research Coordination & National Institute of Mental Health; on behalf of the Interagency Autism Coordinating Committee. (2017). 2014-2015 IACC autism spectrum disorder research: Portfolio analysis report. https://iacc.hhs.gov/portfolio-analysis/2015/index.shtml
    Type: Other
    Crossref
  32. 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
  33. Pellicano L., Dinsmore A., Charman T. (2013). A future made together: Shaping autism research in the UK. UCL Institute of Education. http://crae.ioe.ac.uk/post/64979963005/a-future-made-together
    Type: Other
    Crossref
  34. UK Public Involvement Standards Development Partnership. (2019). UK Standards for Public Involvement: Better public involvement for better health and social care research. https://drive.google.com/file/d/1U-IJNJCfFepaAOruEhzz1TdLvAcHTt2Q/view
    Type: Other
    Crossref