Lisa Marie Emerson, Ruth Monk, Larah van der Meer, Dean Sutherland, Laurie McLay
{"title":"Autistic Co-Led Community Priorities for Future Autism Research in Aotearoa New Zealand.","authors":"Lisa Marie Emerson, Ruth Monk, Larah van der Meer, Dean Sutherland, Laurie McLay","doi":"10.1089/aut.2022.0109","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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).</p><p><strong>Methods: </strong>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 (<i>n</i> = 55) and an online survey (<i>n</i> = 450). Almost 40% of the survey respondents indicated that they were autistic.</p><p><strong>Results: </strong>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) <i>Health, mental health, and well-being of autistic people</i> (all groups); (2) <i>Services across the life span</i> (autistic adults, health care/disability, and education practitioners); (3) <i>Needs of autistic people in Aotearoa NZ</i> (autistic adults, whānau); (4) <i>Perspectives from autistic people with a diverse range of support needs</i> (autistic adults; education practitioners); (5) <i>Quality of life of autistic people in Aotearoa NZ</i> (autistic adults; health care/disability practitioners).</p><p><strong>Conclusions: </strong>We discuss the advantages of autistic involvement in research, and how these community priorities can inform future research and policy in NZ.</p>","PeriodicalId":9,"journal":{"name":"ACS Catalysis ","volume":" ","pages":"141-151"},"PeriodicalIF":13.1000,"publicationDate":"2024-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11317798/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"ACS Catalysis ","FirstCategoryId":"92","ListUrlMain":"https://doi.org/10.1089/aut.2022.0109","RegionNum":1,"RegionCategory":"化学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/6/1 0:00:00","PubModel":"eCollection","JCR":"Q1","JCRName":"CHEMISTRY, PHYSICAL","Score":null,"Total":0}
引用次数: 0
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.
期刊介绍:
ACS Catalysis is an esteemed journal that publishes original research in the fields of heterogeneous catalysis, molecular catalysis, and biocatalysis. It offers broad coverage across diverse areas such as life sciences, organometallics and synthesis, photochemistry and electrochemistry, drug discovery and synthesis, materials science, environmental protection, polymer discovery and synthesis, and energy and fuels.
The scope of the journal is to showcase innovative work in various aspects of catalysis. This includes new reactions and novel synthetic approaches utilizing known catalysts, the discovery or modification of new catalysts, elucidation of catalytic mechanisms through cutting-edge investigations, practical enhancements of existing processes, as well as conceptual advances in the field. Contributions to ACS Catalysis can encompass both experimental and theoretical research focused on catalytic molecules, macromolecules, and materials that exhibit catalytic turnover.