Cargando…
A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021
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 Zealan...
Autores principales: | , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2023
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10576894/ https://www.ncbi.nlm.nih.gov/pubmed/36802870 http://dx.doi.org/10.1177/13623613231155954 |
_version_ | 1785121213828300800 |
---|---|
author | Emerson, Lisa Marie Pellicano, Elizabeth Monk, Ruth Lim, Melissa Heaton, Jessica McLay, Laurie |
author_facet | Emerson, Lisa Marie Pellicano, Elizabeth Monk, Ruth Lim, Melissa Heaton, Jessica McLay, Laurie |
author_sort | Emerson, Lisa Marie |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-10576894 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-105768942023-10-16 A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021 Emerson, Lisa Marie Pellicano, Elizabeth Monk, Ruth Lim, Melissa Heaton, Jessica McLay, Laurie Autism Original Articles 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. SAGE Publications 2023-02-19 2023-11 /pmc/articles/PMC10576894/ /pubmed/36802870 http://dx.doi.org/10.1177/13623613231155954 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
spellingShingle | Original Articles Emerson, Lisa Marie Pellicano, Elizabeth Monk, Ruth Lim, Melissa Heaton, Jessica McLay, Laurie A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021 |
title | A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021 |
title_full | A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021 |
title_fullStr | A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021 |
title_full_unstemmed | A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021 |
title_short | A portfolio analysis of autism research funding in Aotearoa New Zealand 2007–2021 |
title_sort | portfolio analysis of autism research funding in aotearoa new zealand 2007–2021 |
topic | Original Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10576894/ https://www.ncbi.nlm.nih.gov/pubmed/36802870 http://dx.doi.org/10.1177/13623613231155954 |
work_keys_str_mv | AT emersonlisamarie aportfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT pellicanoelizabeth aportfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT monkruth aportfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT limmelissa aportfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT heatonjessica aportfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT mclaylaurie aportfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT emersonlisamarie portfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT pellicanoelizabeth portfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT monkruth portfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT limmelissa portfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT heatonjessica portfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 AT mclaylaurie portfolioanalysisofautismresearchfundinginaotearoanewzealand20072021 |