« Montrer et raconter » : évaluation du travail en partenariat avec des adultes autistes en tant que chercheuse ou chercheur en début de carrière explorant la théorie du suicide

Titre original en anglais : "Show-and-tell": an evaluation of working in partnership with autistic adults as an early career researcher exploring suicide theory

Sources de métadonnées utilisées pour cette référence

OpenAlex Crossref
En savoir plus sur les sources utilisées

Pelton, M., Adams, J., Crawford, H., Bul, K., Robertson, A., Rodgers, J., & Cassidy, S. (2024). "Show-and-tell": an evaluation of working in partnership with autistic adults as an early career researcher exploring suicide theory [Preprint]. Center for Open Science. https://doi.org/10.31234/osf.io/4f3vt

Date de publication: 24/01/2024 Ajout dans AutiHub: 04/07/2026 Type: Prépublication Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
7
Auteur·ices de la publication identifié·es comme autistes
1 / 7 (14,3 %)
  1. Mirabel Pelton
  2. Jonathan Adams *
  3. Hayley Crawford
  4. Kim Bul
  1. Ashley Robertson
  2. Jacqui Rodgers
  3. Sarah Cassidy

Résumé

Les recherches visant à améliorer notre compréhension de la santé mentale ainsi que des pensées et comportements suicidaires excluent généralement les voix des personnes autistes, et la présentation transparente ainsi que l’évaluation critique des processus participatifs dans la recherche sur l’autisme font défaut. Nous avons utilisé le Public Involvement Impact Assessment Framework (PiiAF) et les lignes directrices de présentation GRIPP2 pour décrire et évaluer des activités participatives (c’est-à-dire un groupe consultatif, Twitter (X), un projet créatif communautaire et une base de données de bénévoles) menées dans le cadre d’un programme d’études doctorales afin d’explorer la théorie du suicide avec des personnes autistes. La participation a défini l’orientation de l’étude, co-conçu des méthodes accessibles et permis une interprétation significative des résultats. Pour la chercheuse ou le chercheur et les collaborateurs, les bénéfices comprenaient des liens personnels et un sentiment d’accomplissement, ainsi qu’une amélioration de la confiance et des connaissances. La plupart des effets ont résulté du groupe consultatif, qui a bénéficié de l’expérience des directeurs de thèse, de méthodes établies et du suivi des retours d’information. Les défis rencontrés en début de carrière comprenaient le temps, le financement et l’établissement de la confiance. Les recherches futures pourraient énoncer plus clairement une position théorique et les résultats proposés de la participation au début de la recherche. Les chercheurs devraient continuer à développer et à partager de bonnes pratiques pour travailler en partenariat avec des personnes autistes.

Research to improve our understanding of mental health and suicidal thoughts and behaviours typically excludes the voices of autistic people and there is an absence of transparent reporting and critical evaluation of participatory processes in autism research. We used the Public Involvement Impact Assessment Framework (PiiAF) and GRIPP2 reporting guidelines to describe and evaluate participatory activities (i.e., an advisory group, Twitter (X), a creative community-based project and volunteers’ database) undertaken within a programme of doctoral study to explore suicide theory with autistic people. Participation defined study focus, co-designed accessible methods and meaningful interpretation of results. For researcher and collaborators, benefits included personal connections and fulfilment, improved confidence and knowledge. Most impacts resulted from the advisory group, which benefitted from supervisor experience, established methods and monitoring feedback. Early career challenges included time, funding and trust-building. Future research could more clearly state a theoretical position and proposed outputs of participation at the start of the research. Researchers should continue to develop and share good practice in working in partnership with autistic people.

Bibliographie citée par cette référence

Les références citées sont importées depuis des sources externes de métadonnées lorsqu’elles sont disponibles. La liste peut être partielle.

Vue d’ensemble de l’inclusion dans la bibliographie

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.

Références citées
55
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
16 / 55 (29,1 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
34 / 346 (9,8 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 34 / 196 (17,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 19 / 265 (7,2 %).
Occurrences citées rattachées à la base AutiHub
196 / 346 (56,6 %)
Auteurices cité·es distinct·es rattaché·es : 120 / 265 (45,3 %)
Occurrences rattachées, non identifiées comme autistes
162 / 196 (82,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 162 / 346 (46,8 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 101 / 120 (84,2 %).
  1. B. A. Nosek , G. Alter , G. C. Banks , D. Borsboom , S. D. Bowman , S. J. Breckler et al. (2015). Promoting an open research culture . Science, 348(6242), 1422-1425. American Association for the Advancement of Science (AAAS).
    Type: Article DOI: 10.1126/science.aab2374 OpenAlex: https://openalex.org/W1767470961
    OpenAlex
  3. Tim Cadman , Hanna Eklund , Deirdre Howley , Hannah Hayward , Hanna Clarke , James Findon et al. (2012). Caregiver Burden as People With Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder Transition into Adolescence and Adulthood in the United Kingdom . Journal of the American Academy of Child & Adolescent Psychiatry, 51(9), 879-888. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2012.06.017 OpenAlex: https://openalex.org/W2010533293
    OpenAlex
  4. Nathan D. Shippee , Juan Pablo Domecq Garces , Gabriela J. Prutsky Lopez , Zhen Wang , Tarig A. Elraiyah , Mohammed Nabhan et al. (2015). Patient and service user engagement in research: a systematic review and synthesized framework . Health Expectations, 18(5), 1151-1166. Wiley.
    Type: Article DOI: 10.1111/hex.12090 OpenAlex: https://openalex.org/W2028994146
    OpenAlex
  5. Jian-Jun Ou , Li-Juan Shi , Guang-Lei Xun , Chen Chen , Ren-Rong Wu , Xue-Rong Luo et al. (2015). Employment and financial burden of families with preschool children diagnosed with autism spectrum disorders in urban China: results from a descriptive study . BMC Psychiatry, 15(1), 3-3. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12888-015-0382-4 OpenAlex: https://openalex.org/W2095677812
    OpenAlex
  8. Richard Lakeman , Mary FitzGerald (2009). The Ethics of Suicide Research . Crisis, 30(1), 13-19. Hogrefe Publishing Group.
    Type: Article DOI: 10.1027/0227-5910.30.1.13 OpenAlex: https://openalex.org/W2118179678
    OpenAlex
  9. Penelope Hasking , Clare S. Rees , Graham Martin , Jessie Quigley (2015). What happens when you tell someone you self-injure? The effects of disclosing NSSI to adults and peers . BMC Public Health, 15(1), 1039-1039. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12889-015-2383-0 OpenAlex: https://openalex.org/W2153010187
    OpenAlex
  10. Damian Milton * , Michael Bracher (2013). Autistics speak but are they heard . Medical Sociology, 7(2), 61.
    Type: Article OpenAlex: https://openalex.org/W2337764906
    OpenAlex
  11. Marcus R. Munafò , Brian A. Nosek , Dorothy V. M. Bishop , Katherine S. Button , Christopher D. Chambers , Nathalie Percie du Sert et al. (2017). A manifesto for reproducible science . Nature Human Behaviour, 1(1), 0021-0021. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41562-016-0021 OpenAlex: https://openalex.org/W2570760970
    OpenAlex
  13. Sarah Cassidy , Jacqui Rodgers (2017). Understanding and prevention of suicide in autism . The Lancet Psychiatry, 4(6), e11. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(17)30162-1 OpenAlex: https://openalex.org/W2617666343
    OpenAlex
  14. Sophie Staniszewska , Jo Brett , Iveta Simera , Kate Seers , Carole Mockford , Susan Goodlad et al. (2017). GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research . Research Involvement and Engagement, 3(1), 13-13. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s40900-017-0062-2 OpenAlex: https://openalex.org/W2739751169
    OpenAlex
  15. Amy Price , Loai Albarqouni , Jo Kirkpatrick , Mike Clarke , Su May Liew , Nia Roberts et al. (2018). Patient and public involvement in the design of clinical trials: An overview of systematic reviews . Journal of Evaluation in Clinical Practice, 24(1), 240-253. Wiley.
    Type: Article DOI: 10.1111/jep.12805 OpenAlex: https://openalex.org/W2766144316
    OpenAlex
  16. Sarah Cassidy , L. Bradley , E. Bowen , Sarah Wigham , Jacqui Rodgers (2018). Measurement properties of tools used to assess suicidality in autistic and general population adults: A systematic review . Clinical Psychology Review, 62, 56-70. Elsevier BV.
    Type: Article DOI: 10.1016/j.cpr.2018.05.002 OpenAlex: https://openalex.org/W2800246475
    OpenAlex
  17. Michele Kok (2018). Guidance document: Evaluating public involvement in research . UWE Research Repository (UWE Bristol).
    Type: Article OpenAlex: https://openalex.org/W2803415475
    OpenAlex
  19. Sophie Staniszewska , Simon Denegri , Rachel Matthews , Virginia Minogue (2018). Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future . BMJ Open, 8(7), e017124. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2017-017124 OpenAlex: https://openalex.org/W2808839194
    OpenAlex
  20. Sarah Cassidy , Louise Bradley , Rebecca Shaw , Simon Baron-Cohen (2018). Risk markers for suicidality in autistic adults . Molecular Autism, 9(1), 42. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-018-0226-4 OpenAlex: https://openalex.org/W2887488849
    OpenAlex
  22. Eilidh Cage , Jessica Di Monaco , Victoria Newell (2019). Understanding, attitudes and dehumanisation towards autistic people . Autism, 23(6), 1373-1383. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318811290 OpenAlex: https://openalex.org/W2901663576
    OpenAlex
  23. Louise Camm-Crosbie , Louise Bradley , Rebecca Shaw , Simon Baron-Cohen , Sarah Cassidy (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality . Autism, 23(6), 1431-1441. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318816053 OpenAlex: https://openalex.org/W2902777586
    OpenAlex
  25. Stephen P. Lewis , Penelope Hasking (2019). Putting the “Self” in Self-Injury Research: Inclusion of People With Lived Experience in the Research Process . Psychiatric Services, 70(11), 1058-1060. American Psychiatric Association Publishing.
    Type: Article DOI: 10.1176/appi.ps.201800488 OpenAlex: https://openalex.org/W2962822706
    OpenAlex
  26. Katherine Valencia , Cristian Rusu , Daniela Quiñones , Erick Jamet (2019). The Impact of Technology on People with Autism Spectrum Disorder: A Systematic Literature Review . Sensors, 19(20), 4485. MDPI AG.
    Type: Article DOI: 10.3390/s19204485 OpenAlex: https://openalex.org/W2980537173
    OpenAlex
  27. Emma Gowen , Rachel Taylor , Thomas Bleazard , Anat Greenstein , Peter Baimbridge , Daniel Poole (2019). Guidelines for conducting research studies with the autism community. Autism Policy & Practice, 2(1), 29.
    Type: Article OpenAlex: https://openalex.org/W2987130266
    OpenAlex
  29. Mirabel Pelton , Hayley Crawford , Ashley Robertson , Jacqui Rodgers , Simon Baron-Cohen , Sarah Cassidy (2020). Understanding Suicide Risk in Autistic Adults: Comparing the Interpersonal Theory of Suicide in Autistic and Non-autistic Samples . Journal of Autism and Developmental Disorders, 50(10), 3620-3637. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04393-8 OpenAlex: https://openalex.org/W3010260927
    OpenAlex
  30. Mirabel Pelton , Hayley Crawford , Ashley Robertson , Jacqui Rodgers , Simon Baron-Cohen , Sarah Cassidy (2020). A Measurement Invariance Analysis of the Interpersonal Needs Questionnaire and Acquired Capability for Suicide Scale in Autistic and Non-Autistic Adults . Autism in Adulthood, 2(3), 193-203. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2019.0055 OpenAlex: https://openalex.org/W3010926825
    OpenAlex
  31. Ellen Townsend , Emma Nielsen , Rosie Allister , Sarah Cassidy (2020). Key ethical questions for research during the COVID-19 pandemic . The Lancet Psychiatry, 7(5), 381-383. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(20)30150-4 OpenAlex: https://openalex.org/W3020257121
    OpenAlex
  32. M. Ariel Cascio , Jonathan A. Weiss , Éric Racine (2021). Making Autism Research Inclusive by Attending to Intersectionality: a Review of the Research Ethics Literature . Review Journal of Autism and Developmental Disorders, 8(1), 22-36. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-020-00204-z OpenAlex: https://openalex.org/W3025970378
    OpenAlex
  33. Thomas Niederkrotenthaler , David Gunnell , Ella Arensman , Jane Pirkis , Louis Appleby , Keith Hawton et al. (2020). Suicide Research, Prevention, and COVID-19 . Crisis, 41(5), 321-330. Hogrefe Publishing Group.
    Type: Article DOI: 10.1027/0227-5910/a000731 OpenAlex: https://openalex.org/W3045745807
    OpenAlex
  34. Sarah Cassidy , Ashley Robertson , Ellen Townsend , Rory C. O’Connor , Jacqui Rodgers (2020). Advancing Our Understanding of Self-harm, Suicidal Thoughts and Behaviours in Autism . Journal of Autism and Developmental Disorders, 50(10), 3445-3449. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04643-9 OpenAlex: https://openalex.org/W3046493927
    OpenAlex
  36. David Watling , Megan Preece , Jacinta Hawgood , Sharyn Bloomfield , Kairi Kõlves (2022). Developing an Intervention for Suicide Prevention: A Rapid Review of Lived Experience Involvement . Archives of Suicide Research, 26(2), 465-480. Informa UK Limited.
    Type: Article DOI: 10.1080/13811118.2020.1833799 OpenAlex: https://openalex.org/W3093175329
    OpenAlex
  37. Anna Sverdlik , Nathan C. Hall , Lynn McAlpine (2020). PhD Imposter Syndrome: Exploring Antecedents, Consequences, and Implications for Doctoral Well-Being . International Journal of Doctoral Studies, 15, 737-758. Informing Science Institute.
    Type: Article DOI: 10.28945/4670 OpenAlex: https://openalex.org/W3117816418
    OpenAlex
  38. Cos Michael (2021). Is Being Othered a Co-Occurring Condition of Autism? Autism in Adulthood, 3(2), 118-119. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0019 OpenAlex: https://openalex.org/W3153775139
    OpenAlex
  41. Connor Tom Keating (2021). Participatory Autism Research: How Consultation Benefits Everyone . Frontiers in Psychology, 12, 713982-713982. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2021.713982 OpenAlex: https://openalex.org/W3193937630
    OpenAlex
  42. Sarah Cassidy , Heather Cogger-Ward , Ashley Robertson , Jane Goodwin , Jacqui Rodgers (2021). Autism Community Priorities for Suicide Prevention: An International Society for Autism Research Policy Brief . ENLIGHTEN (Jurnal Bimbingan dan Konseling Islam).
    Type: Article OpenAlex: https://openalex.org/W3201736154
    OpenAlex
  48. (2022). Empirical Research at a Distance: New Methods for Developmental Science . Frontiers Media SA.
    Type: Livre DOI: 10.3389/978-2-88976-382-5 OpenAlex: https://openalex.org/W4285145550
    OpenAlex
  49. Sandy Thompson-Hodgetts (2023). Reflections on my experiences as a non-autistic autism researcher . Autism, 27(1), 259-261. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221121432 OpenAlex: https://openalex.org/W4294368537
    OpenAlex
  51. Darren Hedley , Philip J. Batterham , Simon M. Bury , Angela Clapperton , Kathleen Denney , Cheryl Dissanayake et al. (2023). The Suicidal Ideation Attributes Scale-Modified (SIDAS-M): Development and preliminary validation of a new scale for the measurement of suicidal ideation in autistic adults . Autism, 27(4), 1115-1131. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221131234 OpenAlex: https://openalex.org/W4306160854
    OpenAlex
  52. Anne Wettergren Karlsson , Astrid Janssens (2023). Patient and public involvement and engagement (PPIE) in healthcare education and thesis work: the first step towards PPIE knowledgeable healthcare professionals . BMJ Open, 13(1), e067588. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2022-067588 OpenAlex: https://openalex.org/W4313557499
    OpenAlex
  53. Alba X. Realpe , Nicola Mills , Lucy Beasant , Sarah Douglas , Lorcan Kenny , Dheeraj Rai (2023). Lockdown Experiences and Views on Future Research Participation of Autistic Adults in the UK During the First 6 Months of the COVID-19 Pandemic . Autism in Adulthood, 5(3), 301-310. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0027 OpenAlex: https://openalex.org/W4317937922
    OpenAlex
  55. Lakeman, R (15525245) , Fitzgerald, MA (15495140) (2009). The ethics of suicide research: The views of ethics committee members . Figshare.
    Type: Article OpenAlex: https://openalex.org/W7037777076
    OpenAlex