Le paradoxe de la pandémie : une approche participative à méthodes mixtes pour comprendre les expériences des adultes autistes pendant la COVID-19

Titre original en anglais : The pandemic paradox: a mixed methods participatory approach to understanding autistic adults’ experiences during COVID-19

Sources de métadonnées utilisées pour cette référence

OpenAlex Crossref OpenCitations
En savoir plus sur les sources utilisées

Lowe, J., Thom-Jones, S., & Mizzi, S. (2024). The pandemic paradox: a mixed methods participatory approach to understanding autistic adults’ experiences during COVID-19. Disability & Society, 40(9), 2517-2538. https://doi.org/10.1080/09687599.2024.2439973

Date de publication: 20/12/2024 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI)

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
3
Auteur·ices de la publication identifié·es comme autistes
1 / 3 (33,3 %)
  1. Jennifer Lowe
  2. Sandra Thom-Jones *
  3. Simone Mizzi

Résumé

Bien que les chercheurs aient tenté de comprendre les expériences vécues des adultes autistes pendant la pandémie de COVID-19, les études existantes ont relevé un manque de recherche participative. Adoptant une approche véritablement participative, deux chercheurs autistes ont dirigé cette étude aux côtés d'un comité consultatif sur l'autisme établi pour orienter l'enquête nationale en ligne depuis sa conception jusqu'à la diffusion des résultats. La communauté autiste a identifié six domaines importants : (1) la connexion sociale, (2) la participation communautaire, (3) les besoins de soutien, (4) les résultats éducatifs, (5) les expériences d'apprentissage et (6) l'emploi. Un plan convergent à méthodes mixtes a abouti à la plus grande représentation à ce jour des expériences des adultes autistes pendant la pandémie de COVID-19 (N = 951). Une synthèse intégrée et rédigée des expériences vécues des adultes autistes a révélé la nature paradoxale des mesures de santé publique, qui augmentent et diminuent le bien-être, des problèmes potentiels concernant l'exactitude des rapports par procuration, ainsi que des différences démographiques. Des améliorations de l'éducation et des approches de l'apprentissage sont recommandées pour une exploration ultérieure.

Although researchers have attempted to understand the lived experiences of autistic adults during the COVID-19 pandemic, existing studies have noted a lack of participatory research. Adopting a truly participatory approach, two autistic researchers led this study alongside an autism advisory panel established to guide the national online survey from inception to the dissemination of results. The autistic community identified six domains of importance: (1) social connectedness, (2) community participation, (3) support needs, (4) educational outcomes, (5) learning experiences, and (6) employment. A convergent mixed methods design resulted in the largest representation of autistic adults’ experiences during the COVID-19 pandemic to date (N = 951). An integrated and narrated synopsis of autistic adults’ lived experiences revealed the paradoxical nature of public health measures as increasing and decreasing wellbeing, potential issues with the accuracy of proxy reports, and demographic differences. Improvements in education and approaches to learning are recommended for further exploration.

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 11:31.

Références citées
65
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
14 / 65 (21,5 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
29 / 292 (9,9 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 29 / 140 (20,7 %). Auteurices cité·es distinct·es identifié·es comme autistes : 22 / 254 (8,7 %).
Occurrences citées rattachées à la base AutiHub
140 / 292 (47,9 %)
Auteurices cité·es distinct·es rattaché·es : 109 / 254 (42,9 %)
Occurrences rattachées, non identifiées comme autistes
111 / 140 (79,3 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 111 / 292 (38,0 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 87 / 109 (79,8 %).
  1. Priscilla Robinson (2007). Designing and Conducting Mixed Methods Research . Australian and New Zealand Journal of Public Health, 31(4), 388. Elsevier BV.
    Type: Article DOI: 10.1111/j.1753-6405.2007.00096.x OpenAlex: https://openalex.org/W1914972138
    OpenAlex
  2. (s. d.). ABC. 2022. “Matthew Guy Says Melbourne Was the World’s Most Locked-down City. Is That Correct?.” https://www.abc.net.au/news/2022-11-21/fact-check-is-melbourne-world-s-most-locked-down-city/101659926 .
    Type: Autre
    Crossref
  5. Ryan E Adams , Shuting Zheng , Julie Lounds Taylor , Somer Bishop (2021). Ten weeks in: COVID-19-related distress in adults with autism spectrum disorder . Autism, 25(7), 2140-2145. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211005919 OpenAlex: https://openalex.org/W3155300883
    Crossref OpenAlex OpenCitations
  6. Aaron R. Dallman , Kaitlyn P. Wilson , Emily Friesner (2023). Social Agency and Neurodivergent Routines: Supports and Barriers to the Mental Health of Autistic Adults During the COVID-19 Pandemic . American Journal of Occupational Therapy, 77(2), 174-182. SAGE Publications.
    Type: Article DOI: 10.5014/ajot.2023.050049 OpenAlex: https://openalex.org/W4366609902
    Crossref OpenAlex OpenCitations
  7. JANICE M. MORSE (1991). Approaches to Qualitative-Quantitative Methodological Triangulation . Nursing Research, 40(2), 120???123. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/00006199-199103000-00014 OpenAlex: https://openalex.org/W2089371540
    Crossref OpenAlex OpenCitations
  8. Vanessa Bal , Ellen Wilkinson , L. Casey White , J. Kiely Law , The SPARK Consortium , Pamela Feliciano et al. (2021). Early Pandemic Experiences of Autistic Adults: Predictors of Psychological Distress . Autism Research, 14(6), 1209-1219. Wiley.
    Type: Article DOI: 10.1002/aur.2480 OpenAlex: https://openalex.org/W3127124282
    Crossref OpenAlex OpenCitations
  9. Julie Lounds Taylor , Ryan E. Adams , Florencia Pezzimenti , Shuting Zheng , Somer Bishop (2022). Job loss predicts worsening depressive symptoms for young adults with autism: A COVID ‐19 natural experiment . Autism Research, 15(1), 93-102. Wiley.
    Type: Article DOI: 10.1002/aur.2621 OpenAlex: https://openalex.org/W3203039264
    Crossref OpenAlex OpenCitations
  10. Andy P. Field (2017). Discovering Statistics Using Ibm Spss Statistics .
    Type: Livre OpenAlex: https://openalex.org/W2249595199
    Crossref OpenAlex
  11. Jacquie Ballantine , Jess Rocheleau , J. Macarios , George Ross , Natasha Artemeva (2023). “Change Isn't Exactly Easy”: Autistic University Students' Lived Learning Experiences During the COVID-19 Pandemic . Autism in Adulthood, 5(3), 325-334. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0032 OpenAlex: https://openalex.org/W4321783399
    Crossref OpenAlex OpenCitations
  12. Stephen M. Kissler , Christine Tedijanto , Edward Goldstein , Yonatan H. Grad , Marc Lipsitch (2020). Projecting the transmission dynamics of SARS-CoV-2 through the postpandemic period . Science, 368(6493), 860-868. American Association for the Advancement of Science (AAAS).
    Type: Article DOI: 10.1126/science.abb5793 OpenAlex: https://openalex.org/W3015988827
    Crossref OpenAlex OpenCitations
  13. Shannon E Kelly , David Moher , Tammy J Clifford (2016). Quality of conduct and reporting in rapid reviews: an exploration of compliance with PRISMA and AMSTAR guidelines . Systematic Reviews, 5(1), 79-79. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13643-016-0258-9 OpenAlex: https://openalex.org/W2346281528
    Crossref OpenAlex OpenCitations
  15. Elizabeth Pellicano , Marc Stears (2020). The hidden inequalities of COVID-19 . Autism, 24(6), 1309-1310. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320927590 OpenAlex: https://openalex.org/W3024433335
    Crossref OpenAlex OpenCitations
  16. R Core Team (2026). R: A Language and Environment for Statistical Computing . R Foundation for Statistical Computing.
    Type: Article DOI: 10.32614/r.manuals OpenAlex: https://openalex.org/W2582743722
    OpenAlex
  17. Jacek Błeszyński , Aleksandra Rumińska , Agnieszka Hamerlińska , Renata Stefańska-Klar , Agnieszka Warszawa (2022). The experience of the COVID-19 pandemic by persons with ASD: Social aspects . PLOS ONE, 17(6), e0267123. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0267123 OpenAlex: https://openalex.org/W4282965266
    Crossref OpenAlex OpenCitations
  19. Sarah Griffiths , Carrie Allison , Rebecca Kenny , Rosemary Holt , Paula Smith , Simon Baron-Cohen (2019). The Vulnerability Experiences Quotient (VEQ): A Study of Vulnerability, Mental Health and Life Satisfaction in Autistic Adults . Autism Research, 12(10), 1516-1528. Wiley.
    Type: Article DOI: 10.1002/aur.2162 OpenAlex: https://openalex.org/W2949176131
    Crossref OpenAlex OpenCitations
  22. Emily A Holmes , Rory C O'Connor , V Hugh Perry , Irene Tracey , Simon Wessely , Louise Arseneault et al. (2020). Multidisciplinary research priorities for the COVID-19 pandemic: a call for action for mental health science . The Lancet Psychiatry, 7(6), 547-560. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(20)30168-1 OpenAlex: https://openalex.org/W3015197879
    Crossref OpenAlex
  23. Virginia Braun , Victoria Clarke (2022). Thematic Analysis . Dans Encyclopedia of Quality of Life and Well-Being Research (pp. 1-7). Springer International Publishing.
    Type: Chapitre de livre DOI: 10.1007/978-3-319-69909-7_3470-2 OpenAlex: https://openalex.org/W4320081749
    Crossref OpenAlex
  24. Sara Taylor , Zoe L. Smernoff , Maya Rajan , Samantha Steeman , Brielle N. Gehringer , Holly C. Dow et al. (2022). Investigating the relationships between resilience, autism-related quantitative traits, and mental health outcomes among adults during the COVID-19 pandemic . Journal of Psychiatric Research, 148, 250-257. Elsevier BV.
    Type: Article DOI: 10.1016/j.jpsychires.2022.01.046 OpenAlex: https://openalex.org/W4210522766
    Crossref OpenAlex OpenCitations
  25. Rebecca Bundy , Will Mandy , Laura Crane , Hannah Belcher , Laura Hull , Janina Brede et al. (2022). The impact of early stages of COVID-19 on the mental health of autistic adults in the United Kingdom: A longitudinal mixed-methods study . Autism, 26(7), 1765-1782. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211065543 OpenAlex: https://openalex.org/W3217778794
    Crossref OpenAlex OpenCitations
  27. Eilidh Cage , Ellie McManemy (2022). Burnt Out and Dropping Out: A Comparison of the Experiences of Autistic and Non-autistic Students During the COVID-19 Pandemic . Frontiers in Psychology, 12, 792945-792945. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2021.792945 OpenAlex: https://openalex.org/W4205965584
    Crossref OpenAlex OpenCitations
  28. Benedetta Demartini , Federico Fortunato , Veronica Nisticò , Armando D'Agostino , Orsola Gambini (2021). COVID-19 and mental health: the other side of the coin . Journal of Affective Disorders, 282, 695-696. Elsevier BV.
    Type: Article DOI: 10.1016/j.jad.2020.12.189 OpenAlex: https://openalex.org/W3115841187
    Crossref OpenAlex OpenCitations
  30. Simone J. Capp , David Mason , Emma Colvert , Jessica Agnew-Blais , Francesca Happé (2022). COVID-19 and Perceived Changes to Quality of Life, Anxiety, Depression, and Loneliness in Autistic and Other Neurodivergent U.K. Adults . Autism in Adulthood, 4(3), 233-246. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0078 OpenAlex: https://openalex.org/W4292565289
    Crossref OpenAlex OpenCitations
  31. Yael Goldfarb , Eynat Gal , Ofer Golan (2022). Implications of Employment Changes Caused by COVID-19 on Mental Health and Work-Related Psychological Need Satisfaction of Autistic Employees: A Mixed-Methods Longitudinal Study . Journal of Autism and Developmental Disorders, 52(1), 89-102. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-04902-3 OpenAlex: https://openalex.org/W3132235384
    Crossref OpenAlex OpenCitations
  32. Samantha Friedman , Roan Noble , Stephanie Archer , Jenny Gibson , Claire Hughes (2023). Respite and connection: Autistic adults’ reflections upon nature and well-being during the Covid-19 pandemic . Autism, 136236132311664. SAGE Publications.
    Type: Article DOI: 10.1177/13623613231166462 OpenAlex: https://openalex.org/W4367320381
    Crossref OpenAlex OpenCitations
  34. Creswell J. W. (2018). Designing and conducting mixed methods research . Designing and conducting mixed methods research.
    Type: Autre
    Crossref
  36. Conor Davidson , Keri Lodge , Alwyn Kam (2021). The impact of the COVID-19 pandemic on autistic adults – a survey . Advances in Autism, 7(4), 311-321. Emerald.
    Type: Article DOI: 10.1108/aia-10-2020-0057 OpenAlex: https://openalex.org/W3133801002
    Crossref OpenAlex OpenCitations
  37. Anke Scheeren , Patricia Howlin , Elizabeth Pellicano , Iliana Magiati , Sander Begeer (2022). Continuity and change in loneliness and stress during the COVID ‐19 pandemic: A longitudinal study of autistic and non‐autistic adults . Autism Research, 15(9), 1621-1635. Wiley.
    Type: Article DOI: 10.1002/aur.2787 OpenAlex: https://openalex.org/W4289993976
    Crossref OpenAlex OpenCitations
  38. Danna Oomen , Annabel D. Nijhof , Jan R. Wiersema (2021). The psychological impact of the COVID-19 pandemic on adults with autism: a survey study across three countries . Molecular Autism, 12(1), 21-21. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-021-00424-y OpenAlex: https://openalex.org/W3119734246
    Crossref OpenAlex OpenCitations
  39. Bettina Riese , Raja A.S. Mukherjee (2022). The experiences of autistic adults during the COVID-19 pandemic in the UK and implications for autism services development . Advances in Autism, 8(4), 343-353. Emerald.
    Type: Article DOI: 10.1108/aia-06-2021-0026 OpenAlex: https://openalex.org/W3213554317
    Crossref OpenAlex OpenCitations
  41. Kris Evers , Eef Gijbels , Jarymke Maljaars , Freya Rumball , Debbie Spain , Francesca Happé et al. (2023). Mental health of autistic adults during the COVID-19 pandemic: The impact of perceived stress, intolerance of uncertainty, and coping style . Autism, 27(3), 832-847. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221119749 OpenAlex: https://openalex.org/W4306913603
    Crossref OpenAlex OpenCitations
  42. Gavin R. Stewart , Marguerite Leoni , Rebecca A. Charlton , Hannah Pickard , Francesca Happé (2023). A Qualitative Study of Autistic Adults' Quality of Life During the COVID-19 Pandemic and Lockdowns . Autism in Adulthood, 5(3), 311-324. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0035 OpenAlex: https://openalex.org/W4322768033
    Crossref OpenAlex OpenCitations
  43. Charlotte Featherstone , Richard Sharpe , Nick Axford , Sheena Asthana , Kerryn Husk (2024). Autistic adults’ experiences of managing wellbeing and implications for social prescribing . Disability & Society, 39(12), 3283-3311. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2023.2263628 OpenAlex: https://openalex.org/W4387579928
    Crossref OpenAlex OpenCitations
  45. Kinga Ferenc , Katarzyna Byrka , Magdalena Ewa Król (2023). The spectrum of attitudes towards the spectrum of autism and its relationship to psychological distress in mothers of children with autism . Autism, 27(1), 54-64. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221081185 OpenAlex: https://openalex.org/W4221089215
    Crossref OpenAlex OpenCitations
  46. Anna Fridell , Hjalmar Nobel Norrman , Linda Girke , Sven Bölte (2022). Effects of the Early Phase of COVID-19 on the Autistic Community in Sweden: A Qualitative Multi-Informant Study Linking to ICF . International Journal of Environmental Research and Public Health, 19(3), 1268. MDPI AG.
    Type: Article DOI: 10.3390/ijerph19031268 OpenAlex: https://openalex.org/W4210487547
    Crossref OpenAlex OpenCitations
  47. Victoria Clarke , Virginia Braun (2014). Thematic Analysis . Dans Encyclopedia of Critical Psychology (pp. 1947-1952). Springer New York.
    Type: Chapitre de livre DOI: 10.1007/978-1-4614-5583-7_311 OpenAlex: https://openalex.org/W4232818056
    OpenCitations
  48. Darren Hedley , Susan Hayward , Kathleen Denney , Mirko Uljarević , Simon M. Bury , Ensu Sahin et al. (2021). The association between COVID ‐19, personal wellbeing, depression, and suicide risk factors in Australian autistic adults . Autism Research, 14(12), 2663-2676. Wiley.
    Type: Article DOI: 10.1002/aur.2614 OpenAlex: https://openalex.org/W3200644286
    Crossref OpenAlex OpenCitations
  49. (s. d.). From Emergency Response to Long-Term Covid-19 Disease Management: Sustaining Gains Made during the Covid-19 Pandemic. 2023. https://www.who.int/publications/i/item/WHO-WHE-SPP-2023 . 1.
    Type: Autre
    Crossref
  50. Douglas K. Novins , Joel Stoddard , Robert R. Althoff , Alice Charach , Samuele Cortese , Kathryn Regan Cullen et al. (2021). Editors’ Note and Special Communication: Research Priorities in Child and Adolescent Mental Health Emerging From the COVID-19 Pandemic . Journal of the American Academy of Child & Adolescent Psychiatry, 60(5), 544-554.e8. Elsevier BV.
    Type: Article DOI: 10.1016/j.jaac.2021.03.005 OpenAlex: https://openalex.org/W3137024451
    OpenCitations
  51. Emeline Han , Katrina Scior , Katerina Avramides , Laura Crane (2022). A systematic review on autistic people's experiences of stigma and coping strategies . Autism Research, 15(1), 12-26. Wiley.
    Type: Article DOI: 10.1002/aur.2652 OpenAlex: https://openalex.org/W4200200179
    Crossref OpenAlex OpenCitations
  52. Anke Scheeren , Laura Crane , Melanie Heyworth * , Elizabeth Pellicano (2023). Impact of the COVID-19 Pandemic on Autistic Adults: a Scoping Review . Current Developmental Disorders Reports, 10(1), 92-122. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40474-023-00268-6 OpenAlex: https://openalex.org/W4318594639
    AutiHub · Chercheur·euses autistes Crossref OpenAlex OpenCitations
  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
    Crossref OpenAlex OpenCitations
  54. Jarymke Maljaars , Eef Gijbels , Kris Evers , Debbie Spain , Freya Rumball , Francesca Happé et al. (2023). Impact of the COVID-19 Pandemic on Daily Life: Diverse Experiences for Autistic Adults . Journal of Autism and Developmental Disorders, 53(1), 319-331. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-022-05437-x OpenAlex: https://openalex.org/W4207020750
    Crossref OpenAlex OpenCitations
  55. (s. d.). INSAR. 2023. Annual Meeting Program Book. https://www.autism-insar.org/page/MeetingArchives .
    Type: Autre
    Crossref
  56. Veronica Nisticò , Giulia Fior , Raffaella Faggioli , Alberto Priori , Orsola Gambini , Benedetta Demartini (2022). The Psychological Impact of COVID-19 among a Sample of Italian Adults with High-Functioning Autism Spectrum Disorder: A Follow-Up Study . Healthcare, 10(5), 782. MDPI AG.
    Type: Article DOI: 10.3390/healthcare10050782 OpenAlex: https://openalex.org/W4224326262
    Crossref OpenAlex OpenCitations
  57. (s. d.). Jamovi Version 2. 4. 2023. Jamovi. https://www.jamovi.org
    Type: Autre
    Crossref
  59. Damian Milton * , Emine Gürbüz , Beatriz López (2022). The ‘double empathy problem’: Ten years on . Autism, 26(8), 1901-1903. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221129123 OpenAlex: https://openalex.org/W4306860573
    Crossref OpenAlex OpenCitations
  60. (s. d.). R. 2022. “R: A Language and environment for statistical computing.” V. 4. 1. R Core Team. https://cran.r-project.org .
    Type: Autre
    Crossref
  61. (s. d.). UN. 2021. “World Autism Awareness Day 2 April.” United Nations. Accessed November 06 2023. https://www.un.org/en/observances/autism-day/2021
    Type: Autre
    Crossref
  62. (s. d.). WHO. 2020. “WHO discusses how to deal with pandemic fatigue.” World Health Organization. Accessed November 06 2023. https://www.who.int/news-room/feature-stories/detail/who-europediscusses-how-to-deal-with-pandemic-fatigue
    Type: Autre
    Crossref
  63. (s. d.). WHO. 2023a. “From emergency response to long-term COVID-19 disease management: Sustaining gains made during the COVID-19 pandemic.” World Health Organization. Accessed November 06 2023. https://www.who.int/publications/i/item/WHO-WHESPP-2023 . 1
    Type: Autre
    Crossref
  64. WHO. 2023b. “Statement on the fifteenth meeting of the IHR (2005) Emergency Committee on the COVID-19 pandemic.” World Health Organization. Accessed November 06 2023. https://www.who.int/news/item/05-05-2023-statement-on-the-fifteenth-meeting-of-the-international-health-regulations-(2005)-emergency-committee-regarding-the-coronavirus-disease-(covid-19)-pandemic
    Type: Autre
    Crossref
  65. (s. d.). Who Discusses How to Deal with Pandemic Fatigue. 2020. https://www.who.int/news-room/feature-stories/detail/who-europe-discusses-how-to-deal-with-pandemic-fatigue .
    Type: Autre
    Crossref