Pour une recherche participative dans le trouble du spectre de l’autisme

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Pieron, M., Lacroix, A., Chokron, S., & Demily, C. (2025). Pour une recherche participative dans le trouble du spectre de l’autisme. L'Encéphale, 51(5), 563-565. https://doi.org/10.1016/j.encep.2024.11.020

Publication date: 15 Feb 2025 Added to AutiHub: 9 Aug 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

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Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Marie Pieron
  2. Adeline Lacroix *
  3. Sylvie Chokron
  4. Caroline Demily

Abstract

Participatory research applied to autism spectrum disorder is an emerging research methodology. In this type of project, researchers and clinicians collaborate with autistic people, their families and professionals on research projects that are jointly determined, making the most of everyone's strengths, skills and knowledge. The resulting work addresses issues identified as priorities by all partners. The aim is to bridge the gap between research, clinical practice and the experience of autistic people. This opinion piece reviews this methodology, its scientific and societal value, and the ethical issues and limitations it raises. It also sheds light on the particular attention that needs to be paid to methodological aspects and the resources that need to be put in place to ensure that everyone can play their part to the full, scientists and autistic people alike.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 08:07.

Cited references
21
With a DOI
19
Without a DOI, from raw bibliography text
2
8 / 21 (38.1%) cited references include at least one author identified as autistic.
References with data to complete
0 / 21 (0.0%)
References with detected author names
21 / 21 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
0
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
118
From DOI or external metadata
118
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
59 / 118 (50.0%) names are linked to an author already present in AutiHub. 59 / 118 (50.0%) names are not yet linked.
Names linked to a person identified as autistic
20 / 118 (16.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 20 / 59 (33.9%). Distinct people identified as autistic: 18 / 110 (16.4%).
  1. Carolina L. Balazs , Rachel Morello-Frosch (2013). The Three Rs: How Community-Based Participatory Research Strengthens the Rigor, Relevance, and Reach of Science . Environmental Justice, 6(1), 9-16. SAGE Publications.
    Type: Article DOI: 10.1089/env.2012.0017 OpenAlex: https://openalex.org/W2092622760
    Crossref OpenAlex OpenCitations
  3. Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315588200 OpenAlex: https://openalex.org/W2227393071
    Crossref OpenAlex OpenCitations
  4. Dilek Fraisl , Gerid Hager , Baptiste Bedessem , Margaret Gold , Pen-Yuan Hsing , Finn Danielsen et al. (2022). Citizen science in environmental and ecological sciences . Nature Reviews Methods Primers, 2(1), 1. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s43586-022-00144-4 OpenAlex: https://openalex.org/W4293231014
    Crossref OpenAlex OpenCitations
  6. Lea Den Broeder , Jeroen Devilee , Hans Van Oers , A. Jantine Schuit , Annemarie Wagemakers (2016). Citizen Science for public health . Health Promotion International, 33(3), daw086. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/heapro/daw086 OpenAlex: https://openalex.org/W2567657395
    Crossref OpenAlex
  8. Erica Hinckson , Margaret Schneider , Sandra J. Winter , Emily Stone , Milo Puhan , Afroditi Stathi et al. (2017). Citizen science applied to building healthier community environments: advancing the field through shared construct and measurement development . International Journal of Behavioral Nutrition and Physical Activity, 14(1), 133-133. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12966-017-0588-6 OpenAlex: https://openalex.org/W2759865749
    Crossref OpenAlex OpenCitations
  9. Anthony G Tuckett , Samantha Rowbotham , Sharon Hetherington , Jodie Goddard , Abby C King (2022). Using citizen science to empower older adults to improve a food security initiative in Australia . Health Promotion International, 37(1), daab060. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/heapro/daab060 OpenAlex: https://openalex.org/W3176897141
    Crossref OpenAlex OpenCitations
  10. Maria Peter , Tim Diekötter , Kerstin Kremer , Tim Höffler (2021). Citizen science project characteristics: Connection to participants’ gains in knowledge and skills . PLOS ONE, 16(7), e0253692. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0253692 OpenAlex: https://openalex.org/W3179828951
    Crossref OpenAlex OpenCitations
  11. Dan Weksler-Derri , Uri Shwed , Nadav Davidovitch (2019). Ethical Challenges in Participatory Research With Autistic Adults in Israel . Journal of Empirical Research on Human Research Ethics, 14(5), 447-451. SAGE Publications.
    Type: Article DOI: 10.1177/1556264619858524 OpenAlex: https://openalex.org/W2961291179
    AutiHub · Documentation center Crossref OpenAlex OpenCitations
  12. Gregory Hollin , Warren Pearce (2019). Autism Scientists’ Reflections on the Opportunities and Challenges of Public Engagement: A Qualitative Analysis . Journal of Autism and Developmental Disorders, 49(3), 809-818. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3783-7 OpenAlex: https://openalex.org/W2898184473
    AutiHub · Documentation center Crossref OpenAlex OpenCitations
  14. Susanne Hecker , Muki Haklay , Anne Bowser , Zen Makuch , Johannes Vogel , Aletta Bonn (2018). Citzen Science . UCL Press.
    Type: Book DOI: 10.14324/111.9781787352339 OpenAlex: https://openalex.org/W4289388013
    OpenAlex
  15. Jacquiline den Houting * , Elizabeth Pellicano (2019). A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017 . Journal of Autism and Developmental Disorders, 49(11), 4400-4408. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04155-1 OpenAlex: https://openalex.org/W2966196890
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  16. Kathryn Oliver , Anita Kothari , Nicholas Mays (2019). The dark side of coproduction: do the costs outweigh the benefits for health research? Health Research Policy and Systems, 17(1), 33. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12961-019-0432-3 OpenAlex: https://openalex.org/W2925672674
    Crossref OpenAlex OpenCitations
  19. Teal W. Benevides , Sarah Cassidy (2020). Measuring What Matters in Autism Research and Practice . Autism in Adulthood, 2(1), 1-3. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.29009.twb OpenAlex: https://openalex.org/W3010131954
    Crossref OpenAlex OpenCitations
  20. Kieslinger, B. , Schäfer, T. , Heigl, F. , Dörler, D. , Richter, A. , Bonn, A. (2018). Evaluating citizen science - Towards an open framework . In UCL Discovery (University College London) (pp. 81).
    Type: Book chapter OpenAlex: https://openalex.org/W7037693142
    Crossref OpenAlex
  21. Emma Gowen , Rachel Taylor , Thomas Bleazard , Anat Greenstein , Peter Baimbridge * , Daniel Poole (2019). Guidelines for conducting research studies with the autism community . Autism Policy Pract., 2(1), 29.
    Type: Article OpenAlex: https://openalex.org/W2987130266
    Crossref OpenAlex