Reporting participatory methods and author positionality in autism

Added on 29/07/2024

Type de contenu

Journal article of the type Editorial (July 2024 ; english)

Sue Fletcher-Watson

Reporting participatory methods and author positionality in autism published in the journal "Autism" Preprint, 3 pages , doi: 10.1177/13623613241266950

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Summary/Presentation

In 2021, the journal Autism followed the lead of the British Medical Journal by introducing a mandatory Community Involvement Statement for all Research Reports. The Community Involvement statement was designed, as described in our manuscript submission guidelines, to encourage: ‘research that is actively carried out “with” or “by” members of the Autistic and autism communities (rather than “to”, “about”, or “for” them)’. A range of terms are used to describe this kind of work, including coproduction, participatory research and patient and public involvement and engagement (PPIE). Now, as the journal adjusts its author guidelines in relation to community involvement, we want to share the decision-making behind that change and reinforce our commitment to both doing and reporting participatory work.

For your information:

(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.

E. Cage, C. Crompton, S. Dantas, K. Strachan, R. Birch*, M. Robinson, S. Morgan-Appel*, C. MacKenzie-Nash, A. Gallagher, M. Botha* (2024). "What are the autism research priorities of autistic adults in Scotland?". Autism : the international journal of research and practice. doi:10.1177/13623613231222656 [View the reference]

H. Ellis, T. Nicholls (2024). "How the Moonshot Vision can unite autistic research and partnerships". Autism, 28. doi:10.1177/13623613231222733

S. Fletcher‐Watson, K. Brook*, S. Hallett*, F. Murray*, C. Crompton (2021). "Inclusive Practices for Neurodevelopmental Research". Current Developmental Disorders Reports, 8. doi:10.1007/s40474-021-00227-z

S. Fletcher‐Watson, J. Adams*, K. Brook*, T. Charman, L. Crane, J. Cusack*, S. Leekam, D. Milton*, J. Parr, E. Pellicano (2018). "Making the future together: Shaping autism research through meaningful participation". Autism, 23. doi:10.1177/1362361318786721 [View the reference]

D. Em Milton*, Jon. Green (2024). "Theorising autism". Autism, 28. doi:10.1177/13623613241235786 [View the reference]

L. Roche, D. Adams, M. Clark (2020). "Research priorities of the autism community: A systematic review of key stakeholder perspectives". Autism, 25. doi:10.1177/1362361320967790

A. Melissa Romualdez, B. Heasman, Z. Walker, J. Davies, A. Remington (2021). "'People Might Understand Me Better': Diagnostic Disclosure Experiences of Autistic Individuals in the Workplace". . doi:10.1089/aut.2020.0063

A. Melissa Romualdez, Z. Walker, A. Remington (2021). "Autistic adults' experiences of diagnostic disclosure in the workplace: Decision-making and factors associated with outcomes". Autism & Developmental Language Impairments, 6. doi:10.1177/23969415211022955

S. Weschke, D. Franzen, A. Sierawska, L. Bonde, D. Strech, S. Schorr (2023). "Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy". BMJ Open, 13. doi:10.1136/bmjopen-2022-064170

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