Essayer de résoudre ensemble la « pire situation » : recherche participative sur l’autisme
Titre original en anglais : Trying to solve the ‘worst situation’ together: participatory autism research
Costley, D., Emerson, A., Ropar, D., Sheppard, E., McCubbing, A., Bass, S., Dent, S., Ellis, R., Limer, S., Phillips, S., & Penny, J. W. (2022). Trying to solve the ‘worst situation’ together: participatory autism research. Educational Action Research, 31(4), 691-708. https://doi.org/10.1080/09650792.2021.2019075
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Auteurs
Résumé
L’importance de la recherche participative sur l’autisme est examinée en lien avec un projet impliquant six chercheurs autistes et cinq chercheurs universitaires non autistes collaborant pour étudier l’anxiété chez des adolescents autistes. L’article décrit le processus d’établissement d’un partenariat de recherche ainsi que les valeurs et la philosophie sous-jacentes à cette méthode de recherche inclusive. Des enseignements ont été tirés concernant la pensée neurodivergente et les avantages qu’elle apporte à l’élaboration des questions de recherche et à l’analyse des données.
Bibliographie citée par cette référence
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Ces indicateurs décrivent la bibliographie citée importée pour cette publication. Les métriques de références citées utilisent le total des références citées comme dénominateur. Les métriques d’auteurices cité·es indiquent si elles utilisent toutes les occurrences d’auteurices cité·es ou seulement les occurrences rattachées à des auteurices déjà intégré·es à la base de données AutiHub. Ils utilisent les rattachements mis en cache entre les auteurices cité·es et les auteurices intégré·es à la base de données AutiHub. Dernier calcul : 16/08/2026 11:30.
-
Tessa Kim Frankena , Jenneken Naaldenberg , Mieke Cardol , Christine Linehan , Henny van Schrojenstein Lantman-de Valk (2015). Active involvement of people with intellectual disabilities in health research – A structured literature review . Research in Developmental Disabilities, 45-46, 271-283. Elsevier BV.Crossref OpenAlex OpenCitations
-
Dilmi Aluwihare-Samaranayake (2012). Ethics in Qualitative Research: A View of the Participants' and Researchers' World from a Critical Standpoint . International Journal of Qualitative Methods, 11(2), 64-81. SAGE Publications.Crossref OpenAlex OpenCitations
-
Henk ten Have (2015). Respect for Human Vulnerability: The Emergence of a New Principle in Bioethics . Journal of Bioethical Inquiry, 12(3), 395-408. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.Crossref OpenAlex OpenCitations
-
Elizabeth Pellicano , Marc Stears (2011). Bridging autism, science and society: moving toward an ethically informed approach to autism research . Autism Research, 4(4), 271-282. Wiley.
-
(2017). Cultural and Economic Reproduction in Education . Routledge.Crossref OpenAlex OpenCitations
-
S. Timimi (2011). Autism is not a scientifically valid or clinically useful diagnosis . BMJ, 343(aug16 2), d5105-d5105. BMJ.Crossref OpenAlex OpenCitations
-
Damian Milton *Auteur·ice autiste. En savoir plus… (2012). On the ontological status of autism: the ‘double empathy problem’ . Disability & Society, 27(6), 883-887. Informa UK Limited.
-
Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Jamil Jivraj , Lori‐Ann R. Sacrey , Amanda S. Newton , David Nicholas , Lonnie Zwaigenbaum (2014). Assessing the influence of researcher–partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: A scoping review . Autism, 18(7), 782-793. SAGE Publications.
-
Jessica M. Kramer (2011). Using Mixed Methods to Establish the Social Validity of a Self-Report Assessment: An Illustration Using the Child Occupational Self-Assessment (COSA) . Journal of Mixed Methods Research, 5(1), 52-76. SAGE Publications.Crossref OpenAlex OpenCitations
-
Virginia Braun , Victoria Clarke (2014). What can “thematic analysis” offer health and wellbeing researchers? International Journal of Qualitative Studies on Health and Well-being, 9(1), 26152. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Nicholas Chown *Auteur·ice autiste. En savoir plus… , Jackie Robinson , Luke Beardon , Jillian Downing , Elizabeth Hughes , Julia Leatherland et al. (2017). Improving research about us, with us: a draft framework for inclusive autism research . Disability & Society, 32(5), 720-734. Informa UK Limited.AutiHub · Chercheur·euses autistes AutiHub · Centre de documentation Crossref OpenAlex OpenCitations
-
Debra Costley , Anne Emerson , Danielle Ropar , Elizabeth Sheppard (2021). The Anxiety Caused by Secondary Schools for Autistic Adolescents: In Their Own Words . Education Sciences, 11(11), 726. MDPI AG.Crossref OpenAlex OpenCitations
-
Montrose M. Wolf (1978). SOCIAL VALIDITY: THE CASE FOR SUBJECTIVE MEASUREMENT or HOW APPLIED BEHAVIOR ANALYSIS IS FINDING ITS HEART 1 . Journal of Applied Behavior Analysis, 11(2), 203-214. Wiley.Crossref OpenAlex OpenCitations
-
Laura Crane , Fern Adams , Georgia Harper , Jack Welch , Elizabeth Pellicano (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England . Autism, 23(2), 477-493. SAGE Publications.Crossref OpenAlex OpenCitations
-
Scott Robertson *Auteur·ice autiste. En savoir plus… (2009). Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges . Disability Studies Quarterly, 30(1). The Ohio State University Libraries.AutiHub · Chercheur·euses autistes AutiHub · Centre de documentation Crossref OpenAlex OpenCitations
-
Jacquiline den Houting *Auteur·ice autiste. En savoir plus… (2019). Neurodiversity: An insider’s perspective . Autism, 23(2), 271-273. SAGE Publications.
-
Elizabeth Pellicano , Adam Dinsmore , Tony Charman (2014). Views on Researcher-Community Engagement in Autism Research in the United Kingdom: A Mixed-Methods Study . PLoS ONE, 9(10), e109946. Public Library of Science (PLoS).
-
Sue Fletcher‐Watson , Jonathan Adams *Auteur·ice autiste. En savoir plus… , Kabie Brook *Auteur·ice autiste. En savoir plus… , Tony Charman , Laura Crane , James Cusack *Auteur·ice autiste. En savoir plus… et al. (2019). Making the future together: Shaping autism research through meaningful participation . Autism, 23(4), 943-953. SAGE Publications.AutiHub · Chercheur·euses autistes AutiHub · Centre de documentation Crossref OpenAlex OpenCitations
-
Ann Lewis (2009). Methodological Issues in Exploring the Ideas of Children with Autism Concerning Self and Spirituality . Journal of Religion, Disability & Health, 13(1), 64-76. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Cheryl A Wright , Scott D. Wright , Marissa L Diener , Jacqueline Eaton (2014). Autism spectrum disorder and the applied collaborative approach: a review of community based participatory research and participatory action research . Journal of Autism, 1(1), 1. Herbert Publications PVT LTD.Crossref OpenAlex OpenCitations
-
Kristen Gillespie-Lynch , Steven K. Kapp *Auteur·ice autiste. En savoir plus… , Patricia J. Brooks , Jonathan Pickens , Ben Schwartzman (2017). Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts . Frontiers in Psychology, 8, 438-438. Frontiers Media SA.
-
Nerida Joss , Amanda Cooklin , Brian Oldenburg (2016). A scoping review of end user involvement in disability research . Disability and Health Journal, 9(2), 189-196. Elsevier BV.Crossref OpenAlex OpenCitations
-
Alinda Gillott , P.J. Standen (2007). Levels of anxiety and sources of stress in adults with autism . Journal of Intellectual Disabilities, 11(4), 359-370. SAGE Publications.Crossref OpenAlex OpenCitations
-
Goodley D (2017). Disability Studies. An Interdisciplinary Introduction . Disability Studies. An Interdisciplinary Introduction.Type: AutreCrossref
-
Kaaren Haas , Debra Costley , Marita Falkmer , Amanda L. Richdale , Kate Sofronoff , Torbjörn Falkmer (2016). Factors Influencing the Research Participation of Adults with Autism Spectrum Disorders . Journal of Autism and Developmental Disorders, 46(5), 1793-1805. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Kenneth Andrew Searle , Liz Ellis , Marianthi Kourti *Auteur·ice autiste. En savoir plus… , Andrea MacLeod , Caroline H. Lear , Callum Duckworth et al. (2019). Participatory autism research with students at a UK university: evidence from a small-scale empirical project . Advances in Autism, 5(2), 84-93. Emerald.
-
Jonathan Vincent , Megan Potts , Daniel Fletcher , Simon Hodges , Jenny Howells , Alex Mitchell et al. (2017). ‘I think autism is like running on Windows while everyone else is a Mac’: using a participatory action research approach with students on the autistic spectrum to rearticulate autism and the lived experience of university . Educational Action Research, 25(2), 300-315. Informa UK Limited.Crossref OpenAlex OpenCitations
-
Ben Jeffes (2017). Uniquely human: a different way of seeing autism . Educational Psychology in Practice, 33(1), 105-105. Informa UK Limited.OpenAlex
-
MacLeod A. (2013). cit0020 International Journal of Research & Method in Education, 407.Type: AutreCrossref
-
Damian Milton *Auteur·ice autiste. En savoir plus… , Susy Ridout , Marianthi Kourti *Auteur·ice autiste. En savoir plus… , Gillian Loomes , Nicola Martin (2019). A critical reflection on the development of the Participatory Autism Research Collective (PARC) . Tizard Learning Disability Review, 24(2), 82-89. Emerald.AutiHub · Chercheur·euses autistes AutiHub · Centre de documentation Crossref OpenAlex OpenCitations
-
(s. d.). National Institute for Health Research. 2010. “Payment for Involvement: A Guide for Making Payment to Members of the Public Actively Involved in NHS, Public Health and Social Care Research”. NIHR: Involve. https://www.invo.org.uk/resource-public-involvement-in-research/Type: AutreCrossref
-
Christina Nicolaidis , Dora M Raymaker *Auteur·ice autiste. En savoir plus… , Steven K. Kapp *Auteur·ice autiste. En savoir plus… , Amelia E.V. Baggs , Elesia Ashkenazy *Auteur·ice autiste. En savoir plus… , Katherine McDonald et al. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants . Autism, 23(8), 2007-2019. SAGE Publications.AutiHub · Chercheur·euses autistes AutiHub · Centre de documentation Crossref OpenAlex OpenCitations
-
Lorna Hallahan (2019). Disability Studies: An Interdisciplinary Introduction . Australian Social Work, 72(1), 125-126. Informa UK Limited.OpenAlex
-
Michael Oliver (1996). Understanding Disability . Macmillan Education UK.Crossref OpenAlex OpenCitations
-
Prizant B. M (2016). Uniquely Human. A Different Way of Seeing Autism . Uniquely Human. A Different Way of Seeing Autism.Type: AutreCrossref
-
Silberman S (2016). Neurotribes: the legacy of autism and the future of neurodiversity . Choice Reviews Online, 53(08), 53-3753-53-3753. American Library Association.Crossref OpenAlex
-
Singer J (2016). Neurodiversity: The birth of an idea . Neurodiversity: The birth of an idea.Type: AutreCrossref
-
Smith-Merry J (2017). Research to Action Guide on Inclusive Research . Research to Action Guide on Inclusive Research.Type: AutreCrossref