Croiser les perspectives pour mieux informer en autisme: Entre ce que les professionnels veulent dire, ce que les parents veulent savoir et comment les adultes autistes veulent que l’on parle d’eux

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Courcy, I., Valderrama, A., Weis-Heitner, L., Giroux, M., Guerrero, L., Thermidor, G., Laporte, L., & d’Arc, B. F. (2021). Croiser les perspectives pour mieux informer en autisme: Entre ce que les professionnels veulent dire, ce que les parents veulent savoir et comment les adultes autistes veulent que l’on parle d’eux. Canadian Journal of Community Mental Health, 40(2), 104-119. https://doi.org/10.7870/cjcmh-2021-014

Publication date: 1 Jul 2021 Added to AutiHub: 5 Jul 2026 Type: Article Article language: French
OpenAlex source Publisher source (DOI)

This publication is integrated into AutiHub through:

Authors

Publication authors
8
Publication authors identified as autistic
2 / 8 (25.0%)
  1. Isabelle Courcy
  2. Alena Valderrama
  3. Lindsay Weis-Heitner
  4. Mathieu Giroux *
  1. Lucila Guerrero *
  2. Ghitza Thermidor
  3. Line Laporte
  4. Baudouin Forgeot d’Arc

Abstract

Ce projet est issu d’une préoccupation quant au besoin de développer des outils de communication faciles à comprendre et qui répondent au plus grand nombre de parents d’enfant(s) autiste(s) ayant récemment reçu leur diagnostic. Dans une approche systémique de la littératie en santé (Sørenson et al., 2012), nous avons développé une grille pratique de manière à soutenir la rédaction de documents et leur amélioration afin de les rendre plus compréhensibles pour le grand public. La démarche réalisée s’est caractérisée par le croisement des perspectives de différents publics concernés: professionnels, parents, adultes autistes. Ce projet novateur est l’un des premiers à avoir exploré les enjeux de littératie dans le contexte de l’autisme.

Bibliography cited by this reference

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

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
39
Total cited references integrated for this publication.
Cited references with an identified autistic author
1 / 39 (2.6%)
Cited author occurrences identified as autistic
4 / 84 (4.8%)
Among occurrences linked to AutiHub author records: 4 / 17 (23.5%). Distinct cited authors identified as autistic: 4 / 81 (4.9%).
Cited author occurrences linked to AutiHub author records
17 / 84 (20.2%)
Distinct linked cited authors: 15 / 81 (18.5%)
Linked cited-author occurrences not identified as autistic
13 / 17 (76.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 13 / 84 (15.5%). Distinct linked cited authors not identified as autistic: 11 / 15 (73.3%).
  1. Axel Honneth (2007). La réification: petit traité de théorie critique .
    Type: Book OpenAlex: https://openalex.org/W627435626
    OpenAlex
  2. Attal-Vidal, C. et Iribane, P. (2012). Focus groups: mode d’emploi. La Plaine Saint-Denis, France: Afnor Ed.
    Type: Other
    Crossref
  3. Anita Trezona , Gill Rowlands , Don Nutbeam (2018). Progress in Implementing National Policies and Strategies for Health Literacy—What Have We Learned so Far? International Journal of Environmental Research and Public Health, 15(7), 1554. MDPI AG.
    Type: Article DOI: 10.3390/ijerph15071554 OpenAlex: https://openalex.org/W2884160226
    Crossref OpenAlex OpenCitations
  4. Rosaline Barbour , Jenny Kitzinger (1999). Developing Focus Group Research . SAGE Publications Ltd.
    Type: Book DOI: 10.4135/9781849208857 OpenAlex: https://openalex.org/W627953917
    Crossref OpenAlex OpenCitations
  5. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Book DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    Crossref OpenAlex OpenCitations
  6. Kimberly A. Kaphingst , Matthew W. Kreuter , Chris Casey , Luisa Leme , Tess Thompson , Meng-Ru Cheng et al. (2012). Health Literacy INDEX: Development, Reliability, and Validity of a New Tool for Evaluating the Health Literacy Demands of Health Information Materials . Journal of Health Communication, 17(sup3), 203-221. Informa UK Limited.
    Type: Article DOI: 10.1080/10810730.2012.712612 OpenAlex: https://openalex.org/W2079659616
    Crossref OpenAlex OpenCitations
  7. Laurence Bardin (2013). L'analyse de contenu . Presses Universitaires de France.
    Type: Book DOI: 10.3917/puf.bard.2013.01 OpenAlex: https://openalex.org/W1480215185
    Crossref OpenAlex OpenCitations
  8. Thi Thuy Ha Dinh , Ann Bonner , Robyn Clark , Joanne Ramsbotham , Sonia Hines (2016). The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review . JBI Database of Systematic Reviews and Implementation Reports, 14(1), 210-247. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.11124/jbisrir-2016-2296 OpenAlex: https://openalex.org/W2272486312
    Crossref OpenAlex OpenCitations
  9. Imen Ben-Cheikh , Cécile Rousseau (2013). Autisme et soutien social dans des familles d’immigration récente: l’expérience de parents originaires du Maghreb . Santé mentale au Québec, 38(1), 189-205. Consortium Erudit.
    Type: Article DOI: 10.7202/1019192ar OpenAlex: https://openalex.org/W1883232560
    Crossref OpenAlex OpenCitations
  10. Brigitte Chamak (2010). Autismes: des représentations multiples, sources de controverses . Enfances & Psy, n° 47(2), 150-158. CAIRN.INFO.
    Type: Article DOI: 10.3917/ep.047.0150 OpenAlex: https://openalex.org/W2086279277
    Crossref OpenAlex OpenCitations
  11. Brinda Jegatheesan (2009). Cross-Cultural Issues in Parent-Professional Interactions: A Qualitative Study of Perceptions of Asian American Mothers of Children with Developmental Disabilities . Research and Practice for Persons with Severe Disabilities, 34(3-4), 123-136. SAGE Publications.
    Type: Article DOI: 10.2511/rpsd.34.3-4.123 OpenAlex: https://openalex.org/W1990682339
    Crossref OpenAlex OpenCitations
  12. Felicia Hill-Briggs , Kristina P. Schumann , Ogechi Dike (2012). Five-step Methodology for Evaluation and Adaptation of Print Patient Health Information to Meet the <5th Grade Readability Criterion . Medical Care, 50(4), 294-301. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/mlr.0b013e318249d6c8 OpenAlex: https://openalex.org/W2167615766
    Crossref OpenAlex OpenCitations
  13. Carolyn Speros (2005). Health literacy: concept analysis . Journal of Advanced Nursing, 50(6), 633-640. Wiley.
    Type: Article DOI: 10.1111/j.1365-2648.2005.03448.x OpenAlex: https://openalex.org/W2007650982
    Crossref OpenAlex OpenCitations
  14. Bottema-Beutel K. (2020). refg6/ref6 Autism in Adulthood.
    Type: Other
    Crossref
  15. Brigitte Chamak (2011). Autisme et stigmatisation . L'information psychiatrique, 87(5), 403. JLE.
    Type: Article DOI: 10.3917/inpsy.8705.0403 OpenAlex: https://openalex.org/W4252592804
    Crossref OpenAlex OpenCitations
  16. Hilary K. Brown , Hélène Ouellette‐Kuntz , Duncan Hunter , Elizabeth Kelley , Virginie Cobigo (2012). Unmet Needs of Families of School‐Aged Children with an Autism Spectrum Disorder . Journal of Applied Research in Intellectual Disabilities, 25(6), 497-508. Wiley.
    Type: Article DOI: 10.1111/j.1468-3148.2012.00692.x OpenAlex: https://openalex.org/W2024103154
    Crossref OpenAlex OpenCitations
  17. Sydney H. Kinnear , Bruce G. Link , Michelle S. Ballan , Ruth L. Fischbach (2016). Understanding the Experience of Stigma for Parents of Children with Autism Spectrum Disorder and the Role Stigma Plays in Families’ Lives . Journal of Autism and Developmental Disorders, 46(3), 942-953. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2637-9 OpenAlex: https://openalex.org/W2190003508
    Crossref OpenAlex OpenCitations
  19. Kristine Sørensen , Stephan Van den Broucke , James Fullam , Gerardine Doyle , Jürgen Pelikan , Zofia Slonska et al. (2012). Health literacy and public health: A systematic review and integration of definitions and models . BMC Public Health, 12(1), 80. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1471-2458-12-80 OpenAlex: https://openalex.org/W2101761001
    Crossref OpenAlex OpenCitations
  20. Isabelle Courcy (2019). refg11/ref11 Revue canadienne de service social/ Canadian Journal of Social Work, 35(2).
    Type: Other
    Crossref
  21. A.-L. Frisch , L. Camerini , N. Diviani , P. J. Schulz (2012). Defining and measuring health literacy: how can we profit from other literacy domains? Health Promotion International, 27(1), 117-126. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/heapro/dar043 OpenAlex: https://openalex.org/W2130944789
    Crossref OpenAlex OpenCitations
  22. Baudouin Forgeot d’Arc (2014). À la découverte de l'autisme . In À la découverte de l'autisme (pp. 8-14). Dunod.
    Type: Book chapter DOI: 10.3917/dunod.yvon.2014.01.0008 OpenAlex: https://openalex.org/W4206943525
    Crossref OpenAlex
  23. Forgeot d’Arc, B., Thermidor, G., Chrétien, M., Lajeunesse, S. et Laporte, L. Illustré et mis en page par L. Charrette. (2018). Moi, autiste? Communiquer autour du diagnostic. Bibliothèque et Archives nationales du Québec.
    Type: Other
    Crossref
  24. Alena Valderrama , Isabelle Courcy , Lindsay Weis-Heitner , Baudouin Forgeot d’Arc (2020). Les enjeux de littératie dans la communication aux parents du diagnostic de trouble du spectre de l’autisme chez l’enfant . Santé mentale au Québec, 45(1), 127-145. Consortium Erudit.
    Type: Article DOI: 10.7202/1070244ar OpenAlex: https://openalex.org/W3044356592
    Crossref OpenAlex OpenCitations
  25. Barbara FC van Heijst , Hilde M. Geurts (2015). Quality of life in autism across the lifespan: A meta-analysis . Autism, 19(2), 158-167. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313517053 OpenAlex: https://openalex.org/W2150681219
    Crossref OpenAlex OpenCitations
  26. Hersh L. (2015). refg16/ref16 Am Fam Physician, 92(2), 118.
    Type: Other
    Crossref
  27. 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
  28. G. Thomas Couser (2005). Disability, Life Narrative, and Representation . PMLA/Publications of the Modern Language Association of America, 120(2), 602-606. Modern Language Association (MLA).
    Type: Article DOI: 10.1632/s0030812900167975 OpenAlex: https://openalex.org/W3097484048
    Crossref OpenAlex OpenCitations
  29. Honneth, A. (2007). La réification: Petit traité de théorie critique. Paris: Gallimard.
    Type: Other
    Crossref
  30. MARK OSTEEN (2010). Autism and Representation: A Comprehensive Introduction . In Autism and Representation (pp. 9-56). Routledge.
    Type: Book chapter DOI: 10.4324/9780203935088-5 OpenAlex: https://openalex.org/W2895318724
    OpenAlex
  31. Kivits, J., Blard, F., Fournier, C. et Winance M. (2016). Les recherches qualitatives en santé. Paris: Armand Colin.
    Type: Other
    Crossref
  32. Milton D. (2013). refg27/ref27 Journal of the BSA Medsoc Group, 7, 61.
    Type: Other
    Crossref
  33. Ofner, M., Coles, A., Decou, M. L., Do, M. T., Bienek, A., Snider, J. et Ugnat, A-M. (2018). Autism Spectrum Disorder among Children and Youth in Canada 2018. A Report of the National Autism Spectrum Disorder Surveillance System. Ottawa: Agence de la santé publique du Canada.
    Type: Other
    Crossref
  34. Organisation mondiale de la santé (OMS). (2013). Health Literacy: The Solid Facts. Genève, Suisse: Organisation mondiale de la santé.
    Type: Other
    Crossref
  35. Osteen, M. (2008). Autism and representation: A comprehensive introduction. Dans M. Osteen (dir.), Autism and Representation, (1–47). New York/Londres: Routledge.
    Type: Other
    Crossref
  36. Renaud, L., Caron-Bouchard, M., Valderrama, A., Thoër, C., Laquerre, M-E., Cherba, M. … Courcy, I. (2018). Analyse des besoins auprès de parents d’un enfant autiste en vue de développer une plateforme numérique leur offrant un soutien social Needs assessment to develop a digital platform offering social support to parents of an autistic child. Revue CNRIS, 9, 3.
    Type: Other
    Crossref
  37. Rootman, I. et Gordon-El-Bihbety, D. (2008). Vision for a Health Literate Canada: Report of the Expert Panel on Health Literacy. Ottawa, Canada: Canadian Association of Public Health.
    Type: Other
    Crossref
  38. Ruel, J., Allaire, C., Moreau A. C., Kassi, B., Brumagne, A., Delample, A. … Pinto da Silva, F. (2018). Communiquer pour tous: guide pour une information accessible. Saint-Maurice: Santé publique France.
    Type: Other
    Crossref
  39. Safeer R. S. (2005). refg37/ref37 Am Fam Physician, 72(3), 463.
    Type: Other
    Crossref