ERIC Number: EJ1465395
Record Type: Journal
Publication Date: 2025-Feb
Pages: 14
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1362-3613
EISSN: EISSN-1461-7005
Available Date: 0000-00-00
Reporting Community Involvement in Autism Research: Findings from the Journal Autism
Diana Weiting Tan1,2; Laura Crane3,4; Tori Haar1; Melanie Heyworth1,5; Rebecca Poulsen5,6; Elizabeth Pellicano1,7
Autism: The International Journal of Research and Practice, v29 n2 p490-503 2025
Participatory methods are having sweeping effects on research across the globe. To facilitate transparency around these methods, "Autism" introduced mandatory reporting of community involvement in January 2021. Here, we sought to determine the impact of this policy. To do so, we -- a team of Autistic and non-autistic researchers -- searched for articles published in "Autism" in 2019, 2 years before policy implementation, and in 2022, 1 year after. We read 283 eligible articles and double coded each article for general information and details of community involvement. We found a fivefold increase (10.3% pre-implementation vs 54.5% post-implementation) in the reporting of community involvement. Most articles reported involving community members distally, in consulting roles, with researchers retaining full decision-making power. Furthermore, most community involvement was reported in more applied than basic research. A significant minority of papers (17%), however, could not be coded, owing to insufficient or vague information. While this increase in the reporting of community involvement is encouraging, more efforts need to be directed towards (1) improving the transparency in the reporting of community involvement and (2) increasing the frequency with which community members, especially Autistic people, share decision-making power equally with researchers -- or even assume control of the research process.
Descriptors: Autism Spectrum Disorders, Community Involvement, Participatory Research, Global Approach, Research Methodology, Legal Responsibility, Research Reports, Researchers, Disabilities, Policy Formation, Decision Making, Journal Articles, Writing for Publication, Scholarship, Communication (Thought Transfer), Guidelines, Publishing Industry, Standards, Position Papers, Periodicals
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Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A
Author Affiliations: 1Macquarie School of Education, Macquarie University, Australia; 2School of Psychological Science, The University of Western Australia, Australia; 3Autism Centre for Education and Research (ACER), Department of Disability, Inclusion and Special Needs, School of Education, University of Birmingham, UK; 4Centre for Research in Autism and Education, IOE, UCL’s Faculty of Education and Society, University College London, UK; 5Reframing Autism, Australia; 6Department of Linguistics, Faculty of Medicine, Health and Human Sciences, Macquarie University, Australia; 7Department of Clinical, Education and Health Psychology, University College London, UK