Faire le lien entre l’autisme, la science et la société : vers une approche éthiquement éclairée de la recherche sur l’autisme

Titre original en anglais : Bridging autism, science and society: moving toward an ethically informed approach to autism research

Sources de métadonnées utilisées pour cette référence

OpenAlex Crossref BibTeX OpenCitations
En savoir plus sur les sources utilisées

Pellicano, E. & Stears, M. (2011). Bridging autism, science and society: moving toward an ethically informed approach to autism research. Autism Research, 4(4), 271-282. https://doi.org/10.1002/aur.201

Date de publication: 12/05/2011 Ajout dans AutiHub: 17/07/2026 Type: Article Langue de l’article: Anglais
Source OpenAlex Source éditeur (DOI) Texte intégral

Cette publication est intégrée dans AutiHub via :

Auteurs

Auteur·ices des publications
2
Auteur·ices de la publication identifié·es comme autistes
0 / 2 (0,0 %)
  1. Elizabeth Pellicano
  2. Marc Stears

Résumé

Résumé Les évolutions récentes de la science de l’autisme ont suscité un malaise généralisé parmi les militants de l’autisme. S’appuyant sur les conclusions d’une importante rencontre internationale de chercheurs, d’éthiciens et de militants, cet article présente la première analyse majeure des questions éthiques découlant de ce malaise. Nous décrivons les évolutions scientifiques qui ont provoqué le plus d’inconfort, analysons la réponse à ces évolutions au sein et en dehors de la communauté de l’autisme, et retraçons l’état actuel du débat éthique. Cela fait, nous soutenons que ces questions éthiques ont peu de chances d’être résolues, car elles dépendent d’hypothèses fondamentalement contradictoires concernant la nature et la désirabilité de la différence neurocognitive. Nous concluons en plaidant pour une nouvelle gamme de mécanismes démocratiques qui pourraient permettre à la communauté scientifique, aux personnes autistes et à d’autres parties concernées de répondre collectivement à de tels différends éthiques profondément enracinés. Autism Res 2011,4:271–282. © 2011 International Society for Autism Research, Wiley Periodicals, Inc.

Abstract Recent developments in the science of autism have provoked widespread unease among autism activists. Drawing on the findings of a major international gathering of researchers, ethicists, and activists, this paper presents the first major analysis of the ethical questions arising from this unease. We outline the scientific developments that have provoked the most discomfort, analyze the response to these developments from within and without the autism community, and trace the current state of the ethical debate. Having done so, we contend that these ethical questions are unlikely to be resolved as they depend on fundamentally conflicting assumptions about the nature and desirability of neurocognitive difference. We conclude by arguing for a new range of democratic mechanisms that could enable the scientific community, autistics, and other concerned parties to respond collectively to such entrenched ethical disputes. Autism Res 2011,4:271–282. © 2011 International Society for Autism Research, Wiley Periodicals, Inc.

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.

  1. Morton Ann Gernsbacher (2007). The True Meaning of Research Participation. Association of Psychological Science (APS) Observer, 20(4), 12.
    Type: Article OpenAlex: https://openalex.org/W340594104
    Crossref OpenAlex
  2. AASPIRE Project. (2009). Academic autistic spectrum partnership in research and education. URL (Accessed August 20 2010): http://www.aaspireproject.org
    Type: Autre
    Crossref
  3. Mayada Elsabbagh , Mark H. Johnson (2010). Getting answers from babies about autism . Trends in Cognitive Sciences, 14(2), 81-87. Elsevier BV.
    Type: Article DOI: 10.1016/j.tics.2009.12.005 OpenAlex: https://openalex.org/W2110349819
    Crossref OpenAlex OpenCitations
  4. Donna Reilly Williams (1994). Somebody Somewhere: Breaking Free from the World of Autism .
    Type: Livre OpenAlex: https://openalex.org/W584370611
    Crossref OpenAlex
  5. Brett S. Abrahams , Daniel H. Geschwind (2008). Advances in autism genetics: on the threshold of a new neurobiology . Nature Reviews Genetics, 9(5), 341-355. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nrg2346 OpenAlex: https://openalex.org/W2080287250
    Crossref OpenAlex OpenCitations
  6. John Gastil , Peter Levine (2005). The deliberative democracy handbook: strategies for effective civic engagement in the twenty-first century . Works - Scholarship, Research, & Creative Expression (Swarthmore College), 27, 7.
    Type: Article OpenAlex: https://openalex.org/W1487155075
    Crossref OpenAlex
  7. American Psychiatric Association. (2010). 299. 00 Autistic Disorder. URL (Accessed August 20 2010): http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94
    Type: Autre
    Crossref
  8. Jeffrey P. Baker (2008). Mercury, Vaccines, and Autism . American Journal of Public Health, 98(2), 244-253. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2007.113159 OpenAlex: https://openalex.org/W2137459999
    Crossref OpenAlex OpenCitations
  9. Developmental Disabilities (2010). Intellectual disability: definition, classification, and systems of supports .
    Type: Livre OpenAlex: https://openalex.org/W1487992973
    OpenAlex
  10. Bonnie Auyeung , Simon Baron-Cohen , Emma Ashwin , Rebecca Knickmeyer , Kevin Taylor , Gerald Hackett (2009). Fetal testosterone and autistic traits . British Journal of Psychology, 100(1), 1-22. Wiley.
    Type: Article DOI: 10.1348/000712608x311731 OpenAlex: https://openalex.org/W2151959687
    Crossref OpenAlex OpenCitations
  11. Simon Baron-Cohen , Svetlana Lutchmaya , Rebecca Knickmeyer (2004). Prenatal Testosterone in Mind . The MIT Press.
    Type: Livre DOI: 10.7551/mitpress/5522.001.0001 OpenAlex: https://openalex.org/W4240389659
    Crossref OpenAlex OpenCitations
  12. Emily Simonoff (1998). Genetic Counseling in Autism and Pervasive Developmental Disorders . Journal of Autism and Developmental Disorders, 28(5), 447-456. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1023/a:1026060623511 OpenAlex: https://openalex.org/W1491750081
    Crossref OpenAlex
  13. Nancy Bagatell (2010). From Cure to Community: Transforming Notions of Autism . Ethos, 38(1), 33-55. Wiley.
    Type: Article DOI: 10.1111/j.1548-1352.2009.01080.x OpenAlex: https://openalex.org/W2085448344
    Crossref OpenAlex OpenCitations
  14. Gillian Baird , Emily Simonoff , Andrew Pickles , Susie Chandler , Tom Loucas , David Meldrum et al. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP) . The Lancet, 368(9531), 210-215. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(06)69041-7 OpenAlex: https://openalex.org/W2151524361
    Crossref OpenAlex OpenCitations
  15. Fishkin J. (2010). When the people speak: deliberative democracy and the public consultation . Choice Reviews Online, 47(10), 47-5888-47-5888. American Library Association.
    Type: Article DOI: 10.5860/choice.47-5888 OpenAlex: https://openalex.org/W1498723358
    Crossref OpenAlex
  16. Baggs A. (2007). In my own language. URL (Accessed July 15 2010): http://www.youtube.com/watch?v=JnylM1hI2jc
    Type: Autre
    Crossref
  17. Kate Plaisted , Michelle O'Riordan , Simon Baron-Cohen (1998). Enhanced Visual Search for a Conjunctive Target in Autism: A Research Note . Journal of Child Psychology and Psychiatry, 39(5), 777-783. Wiley.
    Type: Article DOI: 10.1017/s0021963098002613 OpenAlex: https://openalex.org/W4238612812
    OpenCitations
  18. Éric Racine , Ofek Bar-Ilan , Judy Illes (2005). fMRI in the public eye . Nature Reviews Neuroscience, 6(2), 159-164. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nrn1609 OpenAlex: https://openalex.org/W1520786107
    Crossref OpenAlex OpenCitations
  19. Emily Simonoff , Andrew Pickles , Tony Charman , Susie Chandler , Tom Loucas , Gillian Baird (2008). Psychiatric Disorders in Children With Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample . Journal of the American Academy of Child & Adolescent Psychiatry, 47(8), 921-929. Elsevier BV.
    Type: Article DOI: 10.1097/chi.0b013e318179964f OpenAlex: https://openalex.org/W2158063953
    Crossref OpenAlex OpenCitations
  20. Bernard Williams (2010). Truth and Truthfulness . Truth and truthfulness: An essay in genealogy. Princeton University Press.
    Type: Article DOI: 10.1515/9781400825141 OpenAlex: https://openalex.org/W1533385474
    Crossref OpenAlex
  21. Nancy Shute (2010). Desperate for an Autism Cure . Scientific American, 303(4), 80-85. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/scientificamerican1010-80 OpenAlex: https://openalex.org/W2022809706
    OpenAlex OpenCitations
  22. Moore K (2008). Disrupting science: social movements, American scientists, and the politics of the military, 1945-1975 . Choice Reviews Online, 45(12), 45-6753-45-6753. American Library Association.
    Type: Article DOI: 10.5860/choice.45-6753 OpenAlex: https://openalex.org/W1940560567
    Crossref OpenAlex
  23. Simon Baron-Cohen (2000). Is Asperger syndrome/high-functioning autism necessarily a disability? Development and Psychopathology, 12(3), 489-500. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0954579400003126 OpenAlex: https://openalex.org/W2130225110
    Crossref OpenAlex OpenCitations
  24. Therese Jolliffe , Simon Baron-Cohen (1997). Are People with Autism and Asperger Syndrome Faster Than Normal on the Embedded Figures Test? Journal of Child Psychology and Psychiatry, 38(5), 527-534. Wiley.
    Type: Article DOI: 10.1111/j.1469-7610.1997.tb01539.x OpenAlex: https://openalex.org/W2147785803
    Crossref OpenAlex OpenCitations
  25. Roy Richard Grinker (2010). Commentary: On Being Autistic, and Social . Ethos, 38(1), 172-178. Wiley.
    Type: Article DOI: 10.1111/j.1548-1352.2010.01087.x OpenAlex: https://openalex.org/W1966658499
    Crossref OpenAlex OpenCitations
  26. Baron‐Cohen S. (2009a). Our research was not about prenatal screening for autism. The Guardian January 20 2009. URL (Accessed August 1 2010): http://www.guardian.co.uk/commentisfree/2009/jan/20/research‐autism‐health‐response‐comment
    Type: Autre
    Crossref
  27. Lou Townson , Sue Macauley , Elizabeth Harkness , Rohhss Chapman , Andy Docherty , John Dias et al. (2004). We are all in the same boat: doing ‘people‐led research’ . British Journal of Learning Disabilities, 32(2), 72-76. Wiley.
    Type: Article DOI: 10.1111/j.1468-3156.2004.00282.x OpenAlex: https://openalex.org/W2158076891
    Crossref OpenAlex OpenCitations
  28. Barbara A. Israel , Edith A. Parker , Zachary Rowe , Alicia Salvatore , Meredith Minkler , Jesús López et al. (2005). Community-Based Participatory Research: Lessons Learned from the Centers for Children’s Environmental Health and Disease Prevention Research . Environmental Health Perspectives, 113(10), 1463-1471. American Chemical Society (ACS).
    Type: Article DOI: 10.1289/ehp.7675 OpenAlex: https://openalex.org/W1968759223
    Crossref OpenAlex OpenCitations
  29. Baron‐Cohen S. (2009b). Studying autism genetics responsibly. URL (Accessed June 1 2010): http://www.bionews.org.uk/page_49423.asp
    Type: Autre
    Crossref
  30. Christina G. Selkirk , Patricia McCarthy Veach , Fengqin Lian , Lisa Schimmenti , Bonnie S. LeRoy (2009). Parents’ Perceptions of Autism Spectrum Disorder Etiology and Recurrence Risk and Effects of their Perceptions on Family Planning: Recommendations for Genetic Counselors . Journal of Genetic Counseling, 18(5), 507-519. Wiley.
    Type: Article DOI: 10.1007/s10897-009-9233-0 OpenAlex: https://openalex.org/W2093976142
    Crossref OpenCitations
  31. Holly K. Tabor , Mildred K. Cho (2007). Ethical implications of array comparative genomic hybridization in complex phenotypes: points to consider in research . Genetics in Medicine, 9(9), 626-631. Elsevier BV.
    Type: Article DOI: 10.1097/gim.0b013e3181485688 OpenAlex: https://openalex.org/W1976617177
    Crossref OpenAlex OpenCitations
  32. Chris Kiernan (1999). Participation in Research by People with Learning Disability: Origins and Issues . British Journal of Learning Disabilities, 27(2), 43-47. Wiley.
    Type: Article DOI: 10.1111/j.1468-3156.1999.tb00084.x OpenAlex: https://openalex.org/W1983886807
    Crossref OpenAlex OpenCitations
  33. Arthur L. Beaudet (2010). Which way for genetic-test regulation? Leave test interpretation to specialists . Nature, 466(7308), 816-817. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/466816a OpenAlex: https://openalex.org/W2088908026
    Crossref OpenAlex OpenCitations
  34. David B. Goldstein (2009). Common Genetic Variation and Human Traits . New England Journal of Medicine, 360(17), 1696-1698. Massachusetts Medical Society.
    Type: Article DOI: 10.1056/nejmp0806284 OpenAlex: https://openalex.org/W1987493079
    Crossref OpenAlex OpenCitations
  35. M BEHRMANN , C THOMAS , K HUMPHREYS (2006). Seeing it differently: visual processing in autism . Trends in Cognitive Sciences, 10(6), 258-264. Elsevier BV.
    Type: Article DOI: 10.1016/j.tics.2006.05.001 OpenAlex: https://openalex.org/W2048911223
    Crossref OpenAlex OpenCitations
  36. Chloe Silverman , Jeffrey P. Brosco (2007). Understanding Autism . Archives of Pediatrics & Adolescent Medicine, 161(4), 392. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archpedi.161.4.392 OpenAlex: https://openalex.org/W1990682095
    Crossref OpenAlex OpenCitations
  37. Begley S. (2009). Anatomy of a scare. Newsweek February 21 2009. URL (Accessed June 15 2010): http://www.newsweek.com/2009/02/20/anatomy‐of‐a‐scare.html
    Type: Autre
    Crossref
  38. Michael J. Sandel (2009). The Case against Perfection . Harvard University Press.
    Type: Livre DOI: 10.2307/j.ctvjz80mc OpenAlex: https://openalex.org/W4302945587
    OpenCitations
  39. Sharon R. Kaufman (2010). Regarding the Rise in Autism: Vaccine Safety Doubt, Conditions of Inquiry, and the Shape of Freedom . Ethos, 38(1), 8-32. Wiley.
    Type: Article DOI: 10.1111/j.1548-1352.2009.01079.x OpenAlex: https://openalex.org/W2017732622
    Crossref OpenAlex OpenCitations
  40. Bettelheim B. (1967). The empty fortress: infantile autism and the birth of the self . The empty fortress: infantile autism and the birth of the self.
    Type: Autre
    Crossref
  41. Jonathan Glover (2006). Choosing Children . Oxford University PressOxford.
    Type: Livre DOI: 10.1093/acprof:oso/9780199290925.001.0001 OpenAlex: https://openalex.org/W4206058673
    Crossref OpenAlex OpenCitations
  42. Lewis R. First , Virginia A. Moyer (2009). Editorial Transitions: Continuing to Build on the Strong Foundation of Our Predecessors . Pediatrics, 123(1), 164-165. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2008-3164 OpenAlex: https://openalex.org/W2018069930
    OpenAlex
  43. Bishop D. V. M. (2010). The difference betweenP<0. 05 and a screening test. URL (Accessed August 12 2010): http://deevybee.blogspot.com/2010/07/difference‐between‐p‐05‐and‐screening.html
    Type: Autre
    Crossref
  44. Nancy J. Minshew , Diane L. Williams (2007). The New Neurobiology of Autism . Archives of Neurology, 64(7), 945. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archneur.64.7.945 OpenAlex: https://openalex.org/W2159500608
    Crossref OpenAlex OpenCitations
  45. Boseley S. (2009). Is autism screening close to reality? The Guardian January 12 2009. URL (Accessed August 4 2010): http://www.guardian.co.uk/lifeandstyle/2009/jan/12/autism‐screening‐health .
    Type: Autre
    Crossref
  46. Jill Porter , Sarah Parsons , Christopher Robertson (2006). Time for review: supporting the work of an advisory group . Journal of Research in Special Educational Needs, 6(1), 11-16. Wiley.
    Type: Article DOI: 10.1111/j.1471-3802.2006.00055.x OpenAlex: https://openalex.org/W2032428117
    Crossref OpenAlex OpenCitations
  47. Bovell V. (2006). We don't need to wipe out autism … we need to care more. Mail Online June 19 2006. URL (Accessed June 3 2010): http://www.dailymail.co.uk/news/article‐391318/We‐dont‐need‐wipe‐autism‐‐need‐care‐more.html
    Type: Autre
    Crossref
  48. Yiping Shen , Kira A. Dies , Ingrid A. Holm , Carolyn Bridgemohan , Magdi M. Sobeih , Elizabeth B. Caronna et al. (2010). Clinical Genetic Testing for Patients With Autism Spectrum Disorders . Pediatrics, 125(4), e727-e735. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2009-1684 OpenAlex: https://openalex.org/W2114107709
    Crossref OpenAlex OpenCitations
  49. Adrienne Falcón (2006). Empowered Participation: Reinventing Urban Democracy . Contemporary Sociology: A Journal of Reviews, 35(1), 57-58. SAGE Publications.
    Type: Article DOI: 10.1177/009430610603500141 OpenAlex: https://openalex.org/W2033616484
    OpenAlex
  50. Tony Charman , Pippa Clare (2004). Mapping autism research: Identifying UK priorities for the future . Mapping autism research: Identifying UK priorities for the future.
    Type: Article OpenAlex: https://openalex.org/W2884024712
    Crossref OpenAlex
  51. Uta Frith , Francesca Happé (1994). Autism: beyond “theory of mind” . Cognition, 50(1-3), 115-132. Elsevier BV.
    Type: Article DOI: 10.1016/0010-0277(94)90024-8 OpenAlex: https://openalex.org/W2037759571
    Crossref OpenAlex
  52. H.M. Collins , Robert Evans (2002). The Third Wave of Science Studies . Social Studies of Science, 32(2), 235-296. SAGE Publications.
    Type: Article DOI: 10.1177/0306312702032002003 OpenAlex: https://openalex.org/W2150643376
    Crossref OpenAlex OpenCitations
  53. Bertrand R Jordan , Daniel Fu Chang Tsai (2010). Whole-genome association studies for multigenic diseases: ethical dilemmas arising from commercialization—the case of genetic testing for autism . Journal of Medical Ethics, 36(7), 440-444. BMJ.
    Type: Article DOI: 10.1136/jme.2009.031385 OpenAlex: https://openalex.org/W2159057513
    Crossref OpenAlex OpenCitations
  54. 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.
    Type: Article DOI: 10.1007/s10803-008-0685-0 OpenAlex: https://openalex.org/W2042889075
    Crossref OpenAlex OpenCitations
  55. Dawson M. (2004). The misbehavior of behaviourists. URL (Accessed August 2 2010): http://www.sentex.net/∼nexus23/naa_aba.html
    Type: Autre
    Crossref
  56. Paul A. Offit , Charlotte A. Moser (2009). The Problem With Dr Bob's Alternative Vaccine Schedule . Pediatrics, 123(1), e164-e169. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2008-2189 OpenAlex: https://openalex.org/W2159164496
    Crossref OpenAlex OpenCitations
  57. Francesca Happé , Angelica Ronald , Robert Plomin (2006). Time to give up on a single explanation for autism . Nature Neuroscience, 9(10), 1218-1220. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nn1770 OpenAlex: https://openalex.org/W2047485285
    Crossref OpenAlex OpenCitations
  58. Géraldine Dawson (2008). Early behavioral intervention, brain plasticity, and the prevention of autism spectrum disorder . Development and Psychopathology, 20(3), 775-803. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0954579408000370 OpenAlex: https://openalex.org/W2116697664
    Crossref OpenAlex OpenCitations
  59. Marshall B. Jones , Peter Szatmari (1988). Stoppage rules and genetic studies of autism . Journal of Autism and Developmental Disorders, 18(1), 31-40. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/bf02211816 OpenAlex: https://openalex.org/W2065961665
    Crossref OpenAlex OpenCitations
  60. Dawson G. (2009). An interview with Dr. Geri Dawson Chief Science Officer Autism Speaks about the organization's research funding and position on vaccines and autism. URL (Accessed July 29 2010): http://www.autismspeaks.org/science/science_news/geri_dawson_vaccines_autism_interview.php
    Type: Autre
    Crossref
  61. Christine Ecker , Andre Marquand , Janaina Mourão-Miranda , Patrick Johnston , Eileen M. Daly , Michael J. Brammer et al. (2010). Describing the Brain in Autism in Five Dimensions—Magnetic Resonance Imaging-Assisted Diagnosis of Autism Spectrum Disorder Using a Multiparameter Classification Approach . The Journal of Neuroscience, 30(32), 10612-10623. Society for Neuroscience.
    Type: Article DOI: 10.1523/jneurosci.5413-09.2010 OpenAlex: https://openalex.org/W2070231119
    Crossref OpenAlex OpenCitations
  62. Amitta Shah , Uta Frith (1983). AN ISLET OF ABILITY IN AUTISTIC CHILDREN: A RESEARCH NOTE . Journal of Child Psychology and Psychiatry, 24(4), 613-620. Wiley.
    Type: Article DOI: 10.1111/j.1469-7610.1983.tb00137.x OpenAlex: https://openalex.org/W2050093397
    Crossref OpenAlex OpenCitations
  63. David T. Miller , Margaret P. Adam , Swaroop Aradhya , Leslie G. Biesecker , Arthur R. Brothman , Nigel P. Carter et al. (2010). Consensus Statement: Chromosomal Microarray Is a First-Tier Clinical Diagnostic Test for Individuals with Developmental Disabilities or Congenital Anomalies . The American Journal of Human Genetics, 86(5), 749-764. Elsevier BV.
    Type: Article DOI: 10.1016/j.ajhg.2010.04.006 OpenAlex: https://openalex.org/W2131587128
    Crossref OpenAlex OpenCitations
  64. Naustin Deslauriers (1967). The Empty Fortress: Infantile Autism and the Birth of the Self. Archives of General Psychiatry, 17(4), 510. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archpsyc.1967.01730280126018 OpenAlex: https://openalex.org/W2050405400
    OpenAlex
  65. Rutter M. (1978). Autism . Springer US.
    Type: Livre DOI: 10.1007/978-1-4684-0787-7 OpenAlex: https://openalex.org/W4252444594
    Crossref OpenAlex OpenCitations
  66. Elizabeth Pellicano , Murray T. Maybery , KEVIN DURKIN , ALANA MALEY (2006). Multiple cognitive capabilities/deficits in children with an autism spectrum disorder: “Weak” central coherence and its relationship to theory of mind and executive control . Development and Psychopathology, 18(01), 77-98. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0954579406060056 OpenAlex: https://openalex.org/W2051372586
    Crossref OpenAlex OpenCitations
  67. Epstein S (1997). Impure science: AIDS, activism, and the politics of knowledge . Choice Reviews Online, 34(07), 34-3895-34-3895. American Library Association.
    Type: Article DOI: 10.5860/choice.34-3895 OpenAlex: https://openalex.org/W4300777287
    Crossref OpenAlex
  68. Chris Plauché Johnson , Scott M. Myers , and the Council on Children With Disabilities (2007). Identification and Evaluation of Children With Autism Spectrum Disorders . Pediatrics, 120(5), 1183-1215. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2007-2361 OpenAlex: https://openalex.org/W2145914632
    Crossref OpenAlex OpenCitations
  69. William M. McMahon , Bonnie Jeanne Baty , Jeffrey Botkin (2006). Genetic counseling and ethical issues for autism . American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 142C(1), 52-57. Wiley.
    Type: Article DOI: 10.1002/ajmg.c.30082 OpenAlex: https://openalex.org/W2054596744
    Crossref OpenAlex OpenCitations
  70. Liza Gross (2009). A Broken Trust: Lessons from the Vaccine–Autism Wars . PLoS Biology, 7(5), e1000114. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pbio.1000114 OpenAlex: https://openalex.org/W2166419037
    Crossref OpenAlex OpenCitations
  71. 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.
    Type: Article DOI: 10.1080/19460171003714989 OpenAlex: https://openalex.org/W2060574889
    Crossref OpenAlex OpenCitations
  72. Fung A. (2006). Empowered participation: reinventing urban democracy . Empowered participation: reinventing urban democracy.
    Type: Autre
    Crossref
  73. T Hutchison (1995). The classification of disability. Archives of Disease in Childhood, 73(2), 91-94. BMJ.
    Type: Article DOI: 10.1136/adc.73.2.91 OpenAlex: https://openalex.org/W2078796826
    Crossref OpenAlex OpenCitations
  74. JONATHAN WOLFF (2009). COGNITIVE DISABILITY IN A SOCIETY OF EQUALS . Metaphilosophy, 40(3-4), 402-415. Wiley.
    Type: Article DOI: 10.1111/j.1467-9973.2009.01598.x OpenAlex: https://openalex.org/W2083586580
    Crossref OpenAlex OpenCitations
  75. Susan E Levy , David S. Mandell , Robert T. Schultz (2009). Autism . The Lancet, 374(9701), 1627-1638. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(09)61376-3 OpenAlex: https://openalex.org/W4211261982
    Crossref OpenAlex OpenCitations
  76. Ilina Singh , Nikolas Rose (2009). Biomarkers in psychiatry . Nature, 460(7252), 202-207. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/460202a OpenAlex: https://openalex.org/W2087256811
    Crossref OpenAlex OpenCitations
  77. Paul Pierson (2000). Increasing Returns, Path Dependence, and the Study of Politics . American Political Science Review, 94(2), 251-267. Cambridge University Press (CUP).
    Type: Article DOI: 10.2307/2586011 OpenAlex: https://openalex.org/W2147111138
    Crossref OpenAlex OpenCitations
  78. Kara A. Withrow , Kelly A. Tracy , Sarah K. Burton , Virginia W. Norris , Hermine H. Maes , Kathleen S. Arnos et al. (2009). Impact of genetic advances and testing for hearing loss: Results from a national consumer survey . American Journal of Medical Genetics Part A, 149A(6), 1159-1168. Wiley.
    Type: Article DOI: 10.1002/ajmg.a.32800 OpenAlex: https://openalex.org/W2093872386
    Crossref OpenAlex OpenCitations
  79. Heneghan C. (2010). Why autism can't be diagnosed with brain scans. URL (Accessed August 12 2010): http://www.guardian.co.uk/science/blog/2010/aug/12/autism‐brain‐scan‐statistics
    Type: Autre
    Crossref
  80. Dawn Eddings Prince (2010). An Exceptional Path: An Ethnographic Narrative Reflecting on Autistic Parenthood from Evolutionary, Cultural, and Spiritual Perspectives . Ethos, 38(1), 56-68. Wiley.
    Type: Article DOI: 10.1111/j.1548-1352.2009.01081.x OpenAlex: https://openalex.org/W2098468961
    Crossref OpenAlex OpenCitations
  81. Neil Humphrey , Sarah Lewis (2008). `Make me normal' . Autism, 12(1), 23-46. SAGE Publications.
    Type: Article DOI: 10.1177/1362361307085267 OpenAlex: https://openalex.org/W2119717901
    Crossref OpenAlex OpenCitations
  82. Martín Knapp , Renée Romeo , Jennifer Beecham (2009). Economic cost of autism in the UK . Autism, 13(3), 317-336. SAGE Publications.
    Type: Article DOI: 10.1177/1362361309104246 OpenAlex: https://openalex.org/W2099729797
    Crossref OpenAlex OpenCitations
  83. Sally J. Rogers , Sally Ozonoff (2005). Annotation: What do we know about sensory dysfunction in autism? A critical review of the empirical evidence . Journal of Child Psychology and Psychiatry, 46(12), 1255-1268. Wiley.
    Type: Article DOI: 10.1111/j.1469-7610.2005.01431.x OpenAlex: https://openalex.org/W2108333292
    Crossref OpenAlex OpenCitations
  84. Insel T. (2007). The combating autism act. Paper presented at the International Meeting for Autism Research Seattle WA.
    Type: Autre
    Crossref
  85. C Lintas , Antonio M. Persico (2009). Autistic phenotypes and genetic testing: state-of-the-art for the clinical geneticist . Journal of Medical Genetics, 46(1), 1-8. BMJ.
    Type: Article DOI: 10.1136/jmg.2008.060871 OpenAlex: https://openalex.org/W2127038438
    Crossref OpenAlex OpenCitations
  86. Robert J. McGrath , David J. Laflamme , Amy P. Schwartz , Michelle Stransky , John B. Moeschler (2009). Access to Genetic Counseling for Children With Autism, Down Syndrome, and Intellectual Disabilities . Pediatrics, 124(Supplement_4), S443-S449. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2009-1255q OpenAlex: https://openalex.org/W2122014509
    Crossref OpenAlex OpenCitations
  87. Michael D. Kogan , Stephen J. Blumberg , Laura A. Schieve , Coleen A. Boyle , James M. Perrin , Reem M. Ghandour et al. (2009). Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder Among Children in the US, 2007 . Pediatrics, 124(5), 1395-1403. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2009-1522 OpenAlex: https://openalex.org/W2125776341
    Crossref OpenAlex OpenCitations
  88. Kalb C. (2010). Ari Ne'eman and the controversy over the autism cure. Newsweek March 29 2010. URL (Accessed September 24 2010): http://www.newsweek.com/blogs/the‐human‐condition/2010/03/29/ari‐ne‐eman‐and‐the‐controversy‐over‐an‐autism‐cure.html
    Type: Autre
    Crossref
  89. Kate Plaisted , Michelle O'Riordan , Simon Baron-Cohen (1998). Enhanced Visual Search for a Conjunctive Target in Autism: A Research Note . Journal of Child Psychology and Psychiatry, 39(5), 777-783. Wiley.
    Type: Article DOI: 10.1111/1469-7610.00376 OpenAlex: https://openalex.org/W2127200496
    Crossref OpenAlex
  90. Desmond King (1999). In The Name of Liberalism . Oxford University Press.
    Type: Livre DOI: 10.1093/0198296290.001.0001 OpenAlex: https://openalex.org/W2506245050
    Crossref OpenAlex OpenCitations
  91. Beth A. Tarini , Dianne Singer , Sarah J. Clark , Matthew M. Davis (2009). Parents' Interest in Predictive Genetic Testing for Their Children When a Disease Has No Treatment . Pediatrics, 124(3), e432-e438. American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2008-2389 OpenAlex: https://openalex.org/W2150471054
    Crossref OpenAlex OpenCitations
  92. S J Stern , K S Arnos , L Murrelle , K Oelrich Welch , W E Nance , A Pandya (2002). Attitudes of deaf and hard of hearing subjects towards genetic testing and prenatal diagnosis of hearing loss . Journal of Medical Genetics, 39(6), 449-453. BMJ.
    Type: Article DOI: 10.1136/jmg.39.6.449 OpenAlex: https://openalex.org/W2136153529
    Crossref OpenAlex OpenCitations
  94. Paddy Ladd (2003). Understanding Deaf Culture . Multilingual Matters.
    Type: Livre DOI: 10.21832/9781853595479 OpenAlex: https://openalex.org/W3216633854
    Crossref OpenAlex OpenCitations
  95. Michael Oliver , HUGH M. BOCHEL (1990). The Politics of Disablement . Macmillan Education UK.
    Type: Livre DOI: 10.1007/978-1-349-20895-1 OpenAlex: https://openalex.org/W2086675844
    Crossref OpenCitations
  96. Medical Research Council (2002). Review of autism research: Epidemiology and causes . Review of autism research: Epidemiology and causes.
    Type: Autre
    Crossref
  97. Medical Research Council. (2010a). Autism in adults diagnosed by quick new brain scan. URL (Accessed August 12 2010): http://www.mrc.ac.uk/Newspublications/News/MRC007083
    Type: Autre
    Crossref
  98. Medical Research Council (2010). Review of mental health research: Report of the Strategic Review Group 2010 . Review of mental health research: Report of the Strategic Review Group 2010.
    Type: Autre
    Crossref
  99. Moore C. (2010). Parent's view on genetic link to autism: “I don't want it to be eradicated”. The Guardian June 10 2010. URL (Accessed August 4 2010): http://www.guardian.co.uk/lifeandstyle/2010/jun/10/autism‐parents‐view‐genetics
    Type: Autre
    Crossref
  100. National Institute of Mental Health. (2008). National Institute of Mental Health strategic plan. URL (Accessed August 3 2010): http://www.nimh.nih.gov/about/strategic‐planning‐reports/index.shtml .
    Type: Autre
    Crossref
  101. Nussbaum M. (2006). Frontiers of justice: disability, nationality, and species membership . Frontiers of justice: disability, nationality, and species membership.
    Type: Autre
    Crossref
  102. Cheryl A. Leighty , Joseph P. Shapiro (1994). No Pity: People with Disabilities Forging a New Civil Rights Movement . Michigan Law Review, 92(6), 1953. JSTOR.
    Type: Article DOI: 10.2307/1289622 OpenAlex: https://openalex.org/W3022730379
    OpenAlex
  103. Michael J. Sandel (2007). The Case against Perfection . Harvard University Press.
    Type: Livre DOI: 10.4159/9780674043060 OpenAlex: https://openalex.org/W4207082673
    Crossref OpenAlex
  104. Rudacille D. (2010). Diagnostic scans for autism not imminent experts say. URL (Accessed August 25 2010): https://sfari.org/news/‐/asset_publisher/6Tog/content/diagnostic‐scans‐for‐autism‐not‐imminent‐experts‐say?redirect=%2Fnews
    Type: Autre
    Crossref
  105. Schalock R.L. (2010). Intellectual disability: Definition, classification, and systems of supports . Intellectual disability: Definition, classification, and systems of supports.
    Type: Autre
    Crossref
  106. Shapiro J.P. (1994). No pity: People with disabilities forging a new civil rights movement . No pity: People with disabilities forging a new civil rights movement.
    Type: Autre
    Crossref
  107. Shute N. (2010). Desperation drives parents to dubious autism treatments. Scientific American October 7 2010. URL (Accessed October 12 2010): http://www.scientificamerican.com/article.cfm?id=desperate‐for‐an‐autism‐cure
    Type: Autre
    Crossref
  108. Sinclair J. (1993). Don't mourn for us. First published in the Autism Network International newsletter Our Voice 1. URL (Accessed August 5 2010): http://www.jimsinclair.org/dontmourn.htm
    Type: Autre
    Crossref
  109. Sinclair J. (1999). Why I dislike “person first” language. URL (Accessed August 3 2010): http://www.autcom.org/articles/defeated.html
    Type: Autre
    Crossref
  110. Singer J. (1999). Disability discourse . Disability Discourse, 56.
    Type: Autre
    Crossref
  111. Wellcome Trust. (2010). Wellcome Trust strategic plan 2010‐20: Extraordinary opportunities. URL (Accessed August 3 2010): http://www.wellcome.ac.uk/About‐us/Strategy/index.htm .
    Type: Autre
    Crossref
  112. Wright S. &Wright B. (no date). A message from Suzanne and Bob Wright co‐founders Autism Speaks™. URL (Accessed August 4 2010): http://www.autismspeaks.org/founders.php
    Type: Autre
    Crossref