Déficit, différence, ou les deux ? Autisme et neurodiversité.

Titre original en anglais : Deficit, difference, or both? Autism and neurodiversity.

Kapp, S. K., Gillespie-Lynch, K., Sherman, L. E., & Hutman, T. (2012). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59-71. https://doi.org/10.1037/a0028353

Date de publication: 30/04/2012 Ajout dans AutiHub: 06/07/2026 Type: Article Langue de l’article: Anglais

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
4
Auteur·ices de la publication identifié·es comme autistes
1 / 4 (25,0 %)

Résumé

Le mouvement de la neurodiversité remet en question l'intérêt du modèle médical pour la causalité et la guérison, célébrant l'autisme comme un aspect indissociable de l'identité. À l'aide d'une enquête en ligne, nous avons examiné l'opposition perçue entre le modèle médical et le mouvement de la neurodiversité en évaluant les conceptions de l'autisme et de la neurodiversité chez des personnes ayant différentes relations avec l'autisme. Les participants (N = 657) comprenaient des personnes autistes, des proches et amis de personnes autistes, ainsi que des personnes sans relation spécifiée avec l'autisme. L'auto-identification comme personne autiste et la connaissance de la neurodiversité étaient associées au fait de considérer l'autisme comme une identité positive ne nécessitant aucune guérison, ce qui suggère des différences fondamentales entre le modèle médical et le mouvement de la neurodiversité. Néanmoins, les résultats suggéraient un chevauchement substantiel entre ces approches de l'autisme. La reconnaissance des aspects négatifs de l'autisme et l'adhésion à des pratiques parentales qui célèbrent et améliorent, sans toutefois éliminer, l'autisme ne différaient pas selon la relation avec l'autisme ou la connaissance de la neurodiversité. Ces résultats suggèrent une conception de l'autisme comme déficit en tant que différence, selon laquelle les conditions neurologiques peuvent représenter des voies également valables au sein de la diversité humaine. Des domaines potentiels de terrain d'entente dans la recherche et la pratique concernant l'autisme sont examinés.

The neurodiversity movement challenges the medical model's interest in causation and cure, celebrating autism as an inseparable aspect of identity. Using an online survey, we examined the perceived opposition between the medical model and the neurodiversity movement by assessing conceptions of autism and neurodiversity among people with different relations to autism. Participants (N = 657) included autistic people, relatives and friends of autistic people, and people with no specified relation to autism. Self-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure, suggesting core differences between the medical model and the neurodiversity movement. Nevertheless, results suggested substantial overlap between these approaches to autism. Recognition of the negative aspects of autism and endorsement of parenting practices that celebrate and ameliorate but do not eliminate autism did not differ based on relation to autism or awareness of neurodiversity. These findings suggest a deficit-as-difference conception of autism wherein neurological conditions may represent equally valid pathways within human diversity. Potential areas of common ground in research and practice regarding autism are discussed.

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
75
Nombre total de références citées intégrées pour cette publication.
Références citées avec un·e auteur·ice identifié·e comme autiste
3 / 75 (4,0 %)
Occurrences d’auteur·ices cité·es identifié·es comme autistes
6 / 225 (2,7 %)
Parmi les occurrences rattachées à des auteurices intégré·es à la base de données AutiHub : 6 / 42 (14,3 %). Auteurices cité·es distinct·es identifié·es comme autistes : 5 / 213 (2,3 %).
Occurrences citées rattachées à la base AutiHub
42 / 225 (18,7 %)
Auteurices cité·es distinct·es rattaché·es : 35 / 213 (16,4 %)
Occurrences rattachées, non identifiées comme autistes
36 / 42 (85,7 %)
Parmi les seules occurrences rattachées. Sur l’ensemble des occurrences d’auteurices cité·es : 36 / 225 (16,0 %). Auteurices cité·es distinct·es rattaché·es, non identifié·es comme autistes : 30 / 35 (85,7 %).
  1. Thomas Armstrong (2010). Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia, and Other Brain Differences .
    Type: Livre OpenAlex: https://openalex.org/W73173889
    OpenAlex
  2. C Silverman (2012). Understanding autism: parents, doctors, and the history of a disorder . Choice Reviews Online, 49(09), 49-5096-49-5096. American Library Association.
    OpenAlex
  3. Chloe J. Jordan (2010). Evolution of Autism Support and Understanding Via the World Wide Web . Intellectual and Developmental Disabilities, 48(3), 220-227. Informa UK Limited.
    OpenAlex OpenCitations
  4. Jordynn Jack (2011). "The Extreme Male Brain?" Incrementum and the Rhetorical Gendering of Autism . Disability Studies Quarterly, 31(3). The Ohio State University Libraries.
    OpenAlex
  5. Susan W. White , Thomas H. Ollendick , Bethany C. Bray (2011). College students on the autism spectrum . Autism, 15(6), 683-701. SAGE Publications.
    OpenAlex OpenCitations
  6. James F. Leckman , John S. March (2011). Editorial: Developmental neuroscience comes of age . Journal of Child Psychology and Psychiatry, 52(4), 333-338. Wiley.
    OpenAlex OpenCitations
  7. C. Punshon , P. Skirrow , Glynis Murphy (2009). The `not guilty verdict' . Autism, 13(3), 265-283. SAGE Publications.
    OpenAlex OpenCitations
  8. Juanne Clarke , Gudrun Van Amerom (2008). Asperger's Syndrome . Social Work in Health Care, 46(3), 85-106. Informa UK Limited.
    OpenAlex OpenCitations
  9. Hedda Meadan , James W. Halle , Aaron T. Ebata (2010). Families with Children Who Have Autism Spectrum Disorders: Stress and Support . Exceptional Children, 77(1), 7-36. SAGE Publications.
    OpenAlex
  10. Brigitte Chamak (2008). Autism and social movements: French parents’ associations and international autistic individuals’ organisations . Sociology of Health & Illness, 30(1), 76-96. Wiley.
    OpenAlex OpenCitations
  11. Marc Woodbury‐Smith , Janine Robinson , S. Wheelwright , Simon Baron-Cohen (2005). Screening Adults for Asperger Syndrome Using the AQ: A Preliminary Study of its Diagnostic Validity in Clinical Practice . Journal of Autism and Developmental Disorders, 35(3), 331-335. Springer Science and Business Media LLC.
    OpenAlex OpenCitations
  12. Heather R. Hall , Susan L. Neely-Barnes , J. Carolyn Graff , Taylor E. Krcek , Ruth J. Roberts , Jane S. Hankins (2012). Parental Stress in Families of Children with a Genetic Disorder/Disability and the Resiliency Model of Family Stress, Adjustment, and Adaptation . Issues in Comprehensive Pediatric Nursing, 35(1), 24-44. Informa UK Limited.
    OpenAlex OpenCitations
  13. Pier Jaarsma , Stellan Welin (2012). Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement . Health Care Analysis, 20(1), 20-30. Springer Science and Business Media LLC.
    OpenAlex OpenCitations
  14. Edward Griffin , David Pollak (2009). Student experiences of neurodiversity in higher education: insights from the BRAINHE project . Dyslexia, 15(1), 23-41. Wiley.
    Type: Article DOI: 10.1002/dys.383 OpenAlex: https://openalex.org/W1996729686
    OpenAlex OpenCitations
  15. Timothy M. Krahn , Andrew Fenton (2012). The Extreme Male Brain Theory of Autism and the Potential Adverse Effects for Boys and Girls with Autism . Journal of Bioethical Inquiry, 9(1), 93-103. Springer Science and Business Media LLC.
    OpenAlex OpenCitations
  16. Shahaf Milshtein , Nurit Yirmiya , David Oppenheim , Nina Koren-Karie , Shlomit Levi (2010). Resolution of the Diagnosis Among Parents of Children with Autism Spectrum Disorder: Associations with Child and Parent Characteristics . Journal of Autism and Developmental Disorders, 40(1), 89-99. Springer Science and Business Media LLC.
    OpenAlex OpenCitations
  17. Anne C. Madeo , Barbara B. Biesecker , Campbell Brasington , Lori H. Erby , Kathryn F. Peters (2011). The relationship between the genetic counseling profession and the disability community: A commentary . American Journal of Medical Genetics Part A, 155(8), 1777-1785. Wiley.
    OpenAlex OpenCitations
  18. Gillian King , Tamzin Cathers , Elizabeth Brown , Jacqueline A. Specht , Colleen Willoughby , Janice Miller Polgar et al. (2003). Turning Points and Protective Processes in the Lives of People With Chronic Disabilities . Qualitative Health Research, 13(2), 184-206. SAGE Publications.
    OpenAlex OpenCitations
  19. Ted Hutman , Michael Siller , Marian Sigman (2009). Mothers’ narratives regarding their child with autism predict maternal synchronous behavior during play . Journal of Child Psychology and Psychiatry, 50(10), 1255-1263. Wiley.
    OpenAlex OpenCitations
  20. Emilie Cappe , Marion Wolff , René Bobet , Jean-Louis Adrien (2011). Quality of life: a key variable to consider in the evaluation of adjustment in parents of children with autism spectrum disorders and in the development of relevant support and assistance programmes . Quality of Life Research, 20(8), 1279-1294. Springer Science and Business Media LLC.
    OpenAlex OpenCitations
  21. Robert S.P. Jones , Tor Ole Meldal (2001). Social Relationships and Asperger's Syndrome . Journal of Learning Disabilities, 5(1), 35-41. SAGE Publications.
    OpenAlex
  22. Brian Reichow , Jason I. Halpern , Timothy B. Steinhoff , Nicole Letsinger , Adam Naples , Fred R. Volkmar (2012). Characteristics and Quality of Autism Websites . Journal of Autism and Developmental Disorders, 42(6), 1263-1274. Springer Science and Business Media LLC.
    OpenAlex
  23. Vasiliki Totsika , Richard P. Hastings , Eric Emerson , Gillian A. Lancaster , Damon M. Berridge (2011). A population‐based investigation of behavioural and emotional problems and maternal mental health: associations with autism spectrum disorder and intellectual disability . Journal of Child Psychology and Psychiatry, 52(1), 91-99. Wiley.
    OpenAlex OpenCitations
  24. Laura Gilmour , P. Melike Schalomon , Veronica Smith (2012). Sexuality in a community based sample of adults with autism spectrum disorder . Research in Autism Spectrum Disorders, 6(1), 313-318. Elsevier BV.
    OpenAlex
  25. David Oppenheim , Nina Koren-Karie , Smadar Dolev , Nurit Yirmiya (2009). Maternal Insightfulness and Resolution of the Diagnosis Are Associated With Secure Attachment in Preschoolers With Autism Spectrum Disorders . Child Development, 80(2), 519-527. Oxford University Press (OUP).
    OpenAlex OpenCitations
  26. Laurie A. Vismara , Sally J. Rogers (2010). Behavioral Treatments in Autism Spectrum Disorder: What Do We Know? Annual Review of Clinical Psychology, 6(1), 447-468. Annual Reviews.
    OpenAlex OpenCitations
  27. David C. Giles , Julie Newbold (2011). Self- and Other-Diagnosis in User-Led Mental Health Online Communities . Qualitative Health Research, 21(3), 419-428. SAGE Publications.
    OpenAlex OpenCitations
  28. Kevin Callahan , Smita Shukla-Mehta , Sandy Magee , Min Wie (2010). ABA Versus TEACCH: The Case for Defining and Validating Comprehensive Treatment Models in Autism . Journal of Autism and Developmental Disorders, 40(1), 74-88. Springer Science and Business Media LLC.
    OpenAlex OpenCitations
  29. Karen Beauchamp‐Pryor (2011). Impairment, cure and identity: ‘where do I fit in?’ . Disability & Society, 26(1), 5-17. Informa UK Limited.
    OpenAlex
  30. Henrik Anckarsäter (2010). Beyond categorical diagnostics in psychiatry: Scientific and medicolegal implications . International Journal of Law and Psychiatry, 33(2), 59-65. Elsevier BV.
    OpenAlex OpenCitations
  31. Ginny Russell , Brahm Norwich (2012). Dilemmas, diagnosis and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders . Clinical Child Psychology and Psychiatry, 17(2), 229-245. SAGE Publications.
    OpenAlex
  32. Jennifer Singh , Judy Illes , Laura Lazzeroni , Joachim Hallmayer (2009). Trends in US Autism Research Funding . Journal of Autism and Developmental Disorders, 39(5), 788-795. Springer Science and Business Media LLC.
    OpenAlex OpenCitations
  33. Neil Humphrey , Sarah Lewis (2008). `Make me normal' . Autism, 12(1), 23-46. SAGE Publications.
    OpenAlex OpenCitations
  34. Mary Langan (2011). Parental voices and controversies in autism . Disability & Society, 26(2), 193-205. Informa UK Limited.
    OpenAlex
  35. Christina Samios , Kenneth I. Pakenham , Kate Sofronoff (2008). The nature of sense making in parenting a child with Asperger syndrome . Research in Autism Spectrum Disorders, 2(3), 516-532. Elsevier BV.
    OpenAlex
  36. Thomas Frazier , Eric A. Youngstrom , Leslie Speer , Rebecca Embacher , Paul Law , John Constantino et al. (2012). Validation of Proposed DSM-5 Criteria for Autism Spectrum Disorder . Journal of the American Academy of Child & Adolescent Psychiatry, 51(1), 28-40.e3. Elsevier BV.
    OpenAlex OpenCitations
  37. Philip J Landrigan (2010). What causes autism? Exploring the environmental contribution . Current Opinion in Pediatrics, 22(2), 219-225. Ovid Technologies (Wolters Kluwer Health).
    OpenAlex OpenCitations
  38. Luisa Ruiz Calzada , Nancy Pistrang , Will Mandy (2012). High-Functioning Autism and Asperger’s Disorder: Utility and Meaning for Families . Journal of Autism and Developmental Disorders, 42(2), 230-243. Springer Science and Business Media LLC.
    OpenAlex OpenCitations
  39. Jennifer Stephenson , Mark Carter , Coral Kemp (2012). Quality of the information on educational and therapy interventions provided on the web sites of national autism associations . Research in Autism Spectrum Disorders, 6(1), 11-18. Elsevier BV.
    OpenAlex
  40. Traolach Brugha , Sally McManus , John Bankart , Fiona Scott , Susan Purdon , Jane Smith et al. (2011). Epidemiology of Autism Spectrum Disorders in Adults in the Community in England . Archives of General Psychiatry, 68(5), 459. American Medical Association (AMA).
    OpenAlex OpenCitations
  41. Nina C. Di Pietro , Louise Whiteley , Judy Illes (2012). Treatments and Services for Neurodevelopmental Disorders on Advocacy Websites: Information or Evaluation? Neuroethics, 5(2), 197-209. Springer Science and Business Media LLC.
    OpenAlex
  42. Jaci C. Huws , Robert S. P. Jones (2008). Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism . Journal of Intellectual & Developmental Disability, 33(2), 99-107. Informa UK Limited.
    OpenAlex OpenCitations
  43. Michael Orsini , Miriam Smith (2010). Social movements, knowledge and public policy: the case of autism activism in Canada and the US . Critical Policy Studies, 4(1), 38-57. Informa UK Limited.
    OpenAlex
  44. Ginny Russell , S. Kelly , J. Golding (2010). A qualitative analysis of lay beliefs about the aetiology and prevalence of autistic spectrum disorders . Child: Care, Health and Development, 36(3), 431-436. Wiley.
    OpenAlex OpenCitations
  45. J.C. Huws , R.S.P. Jones (2010). ‘They just seem to live their lives in their own little world’: lay perceptions of autism . Disability & Society, 25(3), 331-344. Informa UK Limited.
    OpenAlex
  46. Elizabeth Baltus Hebert , Christina Koulouglioti (2010). Parental Beliefs About Cause and Course of their Child's Autism and Outcomes of their Beliefs: A Review of the Literature . Issues in Comprehensive Pediatric Nursing, 33(3), 149-163. Informa UK Limited.
    OpenAlex OpenCitations
  47. Penny Benford , P Standen (2009). The internet: a comfortable communication medium for people with Asperger syndrome (AS) and high functioning autism (HFA)? Journal of Assistive Technologies, 3(2), 44-53. Emerald.
    OpenAlex
  48. Gillian Baird (2012). 2.64% of South Korean children aged 7 to 12 have autism spectrum disorders . Evidence Based Mental Health, 15(1), 11-11. BMJ.
    OpenCitations
  49. Andrea MacLeod , Paula Johnston (2007). Standing out and fitting in: a report on a support group for individuals with Asperger syndrome using a personal account . British Journal of Special Education, 34(2), 83-88. Wiley.
    OpenAlex
  50. Karen Wachtel , Alice S. Carter (2008). Reaction to diagnosis and parenting styles among mothers of young children with ASDs . Autism, 12(5), 575-594. SAGE Publications.
    OpenAlex OpenCitations
  51. Nancy Bagatell (2010). From Cure to Community: Transforming Notions of Autism . Ethos, 38(1), 33-55. Wiley.
    OpenAlex
  52. Charlotte Brownlow (2010). Presenting the self: Negotiating a label of autism . Journal of Intellectual & Developmental Disability, 35(1), 14-21. Informa UK Limited.
    OpenAlex OpenCitations
  53. Harlan D. Hahn , Todd L. Belt (2004). Disability Identity and Attitudes Toward Cure in a Sample of Disabled Activists . Journal of Health and Social Behavior, 45(4), 453-464. SAGE Publications.
    OpenAlex OpenCitations
  54. Stephen P. Hinshaw , Andrea Stier (2008). Stigma as Related to Mental Disorders . Annual Review of Clinical Psychology, 4(1), 367-393. Annual Reviews.
    OpenAlex OpenCitations
  55. Simon Baron-Cohen , Sally Wheelwright , Richard Skinner , Joanne Martin , Emma Clubley (2001). The Autism-Spectrum Quotient (AQ): Evidence from Asperger Syndrome/High-Functioning Autism, Males and Females, Scientists and Mathematicians . Journal of Autism and Developmental Disorders, 31(1), 5-17. Springer Science and Business Media LLC.
    OpenAlex
  56. Matt Tincani , Jason Travers , Amanda Boutot (2009). Race, Culture, and Autism Spectrum Disorder: Understanding the Role of Diversity in Successful Educational Interventions . Research and Practice for Persons with Severe Disabilities, 34(3-4), 81-90. SAGE Publications.
    OpenAlex
  57. Amanda Mossman Steiner (2011). A Strength-Based Approach to Parent Education for Children With Autism . Journal of Positive Behavior Interventions, 13(3), 178-190. SAGE Publications.
    OpenAlex
  58. Emily Thornton Savarese , Ralph James Savarese (2009). "The Superior Half of Speaking": An Introduction . Disability Studies Quarterly, 30(1). The Ohio State University Libraries.
    OpenAlex
  59. Gemma M. Griffith , Vasiliki Totsika , Susie Nash , Richard P. Hastings (2012). ‘I just don’t fit anywhere’: support experiences and future support needs of individuals with Asperger syndrome in middle adulthood . Autism, 16(5), 532-546. SAGE Publications.
    OpenAlex
  60. M. Palmer , D. Harley (2012). Models and measurement in disability: an international review . Health Policy and Planning, 27(5), 357-364. Oxford University Press (OUP).
    OpenAlex
  61. Suzannah M Portway , Barbara Johnson (2005). Do you know I have Asperger's syndrome? Risks of a non-obvious disability . Health, Risk & Society, 7(1), 73-83. Informa UK Limited.
    OpenAlex
  62. Meng-Chuan Lai , Michael Lombardo , Greg Pasco , Amber Ruigrok , Sally J. Wheelwright , Susan A. Sadek et al. (2011). A Behavioral Comparison of Male and Female Adults with High Functioning Autism Spectrum Conditions . PLoS ONE, 6(6), e20835. Public Library of Science (PLoS).
    OpenAlex
  63. Young Shin Kim , Bennett L. Leventhal , Yun-Joo Koh , Éric Fombonne , Eugene Laska , Eun-Chung Lim et al. (2011). Prevalence of Autism Spectrum Disorders in a Total Population Sample . American Journal of Psychiatry, 168(9), 904-912. American Psychiatric Association Publishing.
    OpenAlex
  64. Francisco Ortega (2009). The Cerebral Subject and the Challenge of Neurodiversity . BioSocieties, 4(4), 425-445. Springer Science and Business Media LLC.
    OpenAlex
  65. Janet B W Williams , Michael First (2013). Diagnostic and Statistical Manual of Mental Disorders . Encyclopedia of Social Work. Oxford University PressNew York, NY.
    OpenAlex
  66. Johnny L. Matson , Alison M. Kozlowski (2011). The increasing prevalence of autism spectrum disorders . Research in Autism Spectrum Disorders, 5(1), 418-425. Elsevier BV.
    OpenAlex
  67. T D Clevenger (1997). Personal accounts. Where do I fit in? Psychiatric Services, 48(8), 1007-1008. American Psychiatric Association Publishing.
    OpenAlex
  68. Gary B. Mesibov , Victoria Shea , Eric Schopler , Lynn Adams , Elif Merkler , Sloane Burgess et al. (2004). The Teacch Approach to Autism Spectrum Disorders . Springer US.
    OpenAlex
  69. Cecilia Ann Winters (2012). The Politics of Neurodiversity: Why Public Policy Matters . The Social Science Journal, 49(1), 114-115. Informa UK Limited.
    OpenAlex
  70. Dana Lee Baker (2011). The Politics of Neurodiversity . Lynne Rienner Publishers.
    OpenAlex
  71. Thomas A. Widiger (2000). Diagnostic and Statistical Manual of Mental Disorders. Dans Encyclopedia of Psychology, Vol. 3. (pp. 32-35). Oxford University Press.
    Type: Chapitre de livre DOI: 10.1037/10518-009 OpenAlex: https://openalex.org/W3196369884
    OpenAlex