Reporting community involvement in autism research: Findings from the journal Autism

Added on 24/10/2024

Type de contenu

Journal article of the type Scientific literature review ( ; english)

Diana Tan , Laura Crane , Tori Haar * , Melanie Heyworth * , Bec Poulsen * , Elizabeth Pellicano
Reporting community involvement in autism research: Findings from the journal Autism published in the journal "Autism" Preprint, 14 pages , doi: 10.1177/13623613241275263

*Three co-authors had publicly identified as autistic. [Learn more about this mention]

Summary/Presentation

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.

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(1) References in blue are resources listed on our site.

(2) Authors listed in this bibliography whose names are in color have published other resources referenced on the site. Clicking on the name allows you to see the list of resources they have published and shared on the site.

(3) Authors whose names are followed by an asterisk have publicly disclosed being autistic.

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