Changes in the Diagnosis of Autism: How Parents and Professionals Act and React in France

Culture, Medicine and Psychiatry

Volumn 37, Issue 3, 2013, Pages 405-426

  Chamak, B ^a   Bonniau, B ^a  

^a EHESS Sciences   (France)

Author keywords

Autism; Child psychiatry; Diagnosis; France; Parents' experiences

Indexed keywords

ADULT; ARTICLE; AUTISM; CHILD PSYCHIATRY; CULTURAL FACTOR; DOCTOR PATIENT RELATION; FRANCE; HUMAN; PARENT; PATIENT SATISFACTION; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; STANDARD; STATISTICS;

ADULT; AUTISTIC DISORDER; CHILD PSYCHIATRY; CROSS-CULTURAL COMPARISON; FRANCE; HUMANS; PARENTS; PATIENT SATISFACTION; PHYSICIAN-PATIENT RELATIONS; QUALITATIVE RESEARCH;

EID: 84883445707     PISSN: 0165005X     EISSN: 1573076X     Source Type: Journal    
DOI: 10.1007/s11013-013-9323-1     Document Type: Article

References (79)

1. Aronowitz, Robert A. 2001 When do Symptoms Become a Disease? Annals of internal Medicine 134(9): 803-808.
2. Aronowitz, Robert A. 2008 Framing Disease: An Underappreciated Mechanism for the Social Patterning of Health. Social Science and Medicine 67: 1-9.
3. Autism and Developmental Disabilities Monitoring Network 2006 Prevalence of Autism Spectrum Disorders. MMWR Surveillance Summaries 58 (10): 1-20.
4. Autisme France 1994 Rapport sur le Vécu des Autistes et de Leurs Familles en France à l'aube du XXIe siècle. Limoges: Editions Autisme France.
5. Baker, Dana L. 2011 The Politics of Neurodiversity: Why Public Policy Matters. Boulder, Colorado: Lynne Rienner Publishers.
6. Baker, Helene C. 2002 A Comparison Study of Autism Spectrum Disorder Referrals 1997 and 1989. Journal of Autism and Developmental Disorders 32(2): 121-125.
7. Baron-Cohen, Simon 2009 The Short Life of a Diagnosis. The New York Times, November 10.
8. Blume, Stuart 2006 Anti-vaccination Movements and Their Interpretations. Social Science and Medicine 62(3): 628-642.
9. Bowker, Geoffrey C. and Susan L. Star 1999 Sorting Things Out: Classification and its Consequences. Cambridge, MA: MIT Press.
10. Brown, Phil, Mercedes Lyson, and Tania Jenkins 2011 From Diagnosis to Social Diagnosis. Social Science and Medicine 73(6): 939-943.
11. Bumiller, Kristin 2009 The Geneticization of Autism: From New Reproductive Technologies to the Conception of Genetic Normalcy. Signs: Journal of Women in Culture and Society 34(4): 875-899.
12. Caruso, Daniela 2010 Autism in the US: Social Movement and Legal Change. American Journal of Law and Medicine 36: 483-539.
13. Chamak, Brigitte 2008 Autism and Social Movements: French Parents' Associations and International Autistic Individuals' Organizations. Sociology of Health and Illness 30(1): 76-96.
14. Chamak, Brigitte 2010 Autism, Disability, and Social Movements. Alter, European Journal of Disability Research 4: 103-115.
15. Chamak, Brigitte, Béatrice Bonniau, Lila Oudaya, and Alain Ehrenberg 2011 The Autism Diagnostic Experiences of French Parents. Autism 15(1): 83-97.
16. Coffin, Jean-Christophe 2009 La Psychiatrie par Temps de Crise. Etudes 6: 751-761.
17. Daley, Tamara C. 2004 From Symptom Recognition to Diagnosis: Children with Autism in Urban India. Social Science and Medicine 58(7): 1323-1335.
18. Deer, Brian 2011 How the Case Against the MMR Vaccine was Fixed. British Medical Journal 342: 77-82.
19. Ehrenberg, Alain, and Anne Lovell 2001 La Maladie Mentale en Mutation [Changes in the Mental Disease]. Paris: Odile Jacob.
20. Eyal, Gil, Brendan Hart, Emine Onculer, Neta Oren, and Natasha Rossi 2010 The Autism Matrix: The Social Origins of the Autism Epidemic. Cambridge: Polity.
21. Farrugia, David 2009 Exploring Stigma: Medical Knowledge and the Stigmatisation of Parents of Children Diagnosed with Autism Spectrum Disorder. Sociology of Health and Illness 31(7): 1011-1027.
22. Fisher, Pamela 2008 Wellbeing and Empowerment: The Importance of Recognition. Sociology of Health and Illness 30(4): 583-598.
23. Fisher, Pamela, and Dan Goodley 2007 The Linear Medical Model of Disability: Mothers of Disabled Babies Resist with Counter-Narratives. Sociology of Health and Illness 29(1): 66-81.
24. Fombonne, Eric 2009 Epidemiology of Pervasive Developmental Disorders. Pediatric Research 65(6): 591-598.
25. Gillberg, Christopher, Suzanne Steffenburg, and Helen Schaumann 1991 Is Autism More Common Now than Ten Years Ago? British Journal of Psychiatry 158(3): 403-409.
26. Goin-Kochel, Robin P., Virginia H. Mackintosh, and Barbara J. Myers 2006 How Many Doctors Does it Take to Make an Autism Spectrum Diagnosis? Autism 10(5): 439-451.
27. Gray, David E. 1993 Perception of Stigma: The Parents of Autistic Children. Sociology of Health and Illness 15(1): 102-120.
28. Gray, David E. 1994 Coping with Autism: Stresses and Strategies. Sociology of Health and Illness 16 (3): 275-300.
29. Gray, David E. 2003 Gender and Coping: The Parents of Children with High Functioning Autism. Social Science and Medicine 56(3): 631-642.
30. Grinker, Roy R. 2007 Unstrange Minds: Remapping the World of Autism. Cambridge, MA: Basic Books.
31. Hacking, Ian 1995 The Looping Effects of Human Kinds. In Causal Cognition: A Multi-disciplinary Debate. D. Sperber, D. Premack, and A. J. Premack, eds. pp. 351-383. Cambridge, MA: Harvard University Press.
32. Hacking, Ian 1999 The Social Construction of What? Cambridge, MA: Harvard University Press.
33. Hacking, Ian 2002 Historical Ontology. Cambridge, MA: Harvard University Press.
34. Honda, Hideo, Yasuo Shimizu, Kimiko Misumi, Miyuki Niimi, and Yasuo Ohashi 1996 Cumulative Incidence and Prevalence of Childhood Autism in Children in Japan. British Journal of Psychiatry 169: 228-235.
35. Horwitz, Allan V. 2002 Creating Mental Illness, Chicago: The University of Chicago Press.
36. Howlin, Patricia, and Anna Asgharian 1999 The Diagnosis of Autism and Asperger Syndrome: Findings from a Survey of 770 families. Developmental Medicine and Child Neurology 41 (12): 834-839.
37. Howlin, Patricia, and Anna Moore 1997 Diagnosis of Autism: A Survey of Over 1200 Patients in the UK. Autism 1(2): 135-162.
38. Howlin, Patricia, Goode Susan, Hutton Jane, and Michael Rutter 2004 Adult Outcome for Children with Autism. Journal of Child Psychology and Psychiatry 45 (2): 212-229.
39. Keen, Daphne, and Stephanie Ward 2004 Autistic Spectrum Disorder: A Child Population Profile. Autism 8(1): 39-48.
40. Kelly, Susan E. 2005 "A different Light": examining Impairment Through Parent Narratives of Childhood Disability. Journal of Contemporary Ethnography 34(2): 180-205.
41. Kielinen, Marko, Sirkka-Liisa Linna, and Irma Moilanen 2000 Autism in Northern Finland. European Child and Adolescent Psychiatry 9(3): 162-167.
42. Kim, Young Shin, Bennett Leventhal, Yun-Joo Koh, Eric Fombonne, Eugene Laska, Eun-Chung Lim, Keun-Ah Cheon, Soo-Jeong Kim, Young-Key Kim, HyunKyung Lee, Dong-Ho Song, and Roy Richard Grinker 2011 Prevalence of Autism Spectrum Disorders in a Total Population Sample. American Journal of Psychiatry 168 (9): 904-912.
43. Kirk, Stuart A., and Herb Kutchins 1992 The Selling of DSM: The Rhetoric of Science in Psychiatry. Hawthorne, New York: Aldine de Gruyter.
44. Landsman, Gail 2003 Emplotting Children's Lives: developmental Delay vs. Disability. Social Science and Medicine 56(9): 1947-1960.
45. Latif, Abbas Hassan Abdul, and W. Robert Williams 2007 Diagnostic Trends in Autistic Spectrum Disorders in the South Wales Valleys. Autism 11(6): 479-487.
46. Liu, Ka-Yuet, Marissa King, and Peter S. Bearman 2010 Social Influence and the Autism Epidemic. American Journal of Sociology 115(5): 1387-1434.
47. Magnússon, Páll, and Evald Sæmundsen 2001 Prevalence of Autism in Iceland. Journal of Autism and Developmental Disorders 31(2): 153-163.
48. Mandell, David S., Maytali M. Novak, and Cynthia D. Zubritsky 2005 Factors Associated with Age of Diagnosis among Children with Autism Spectrum Disorders. Pediatrics 116(6): 1480-1486.
49. Mansell, Warren, and Kathleen Morris 2004 A Survey of Parents' Reactions to the Diagnosis of an Autistic Spectrum Disorder by a Local Service: Access to Information and Use of Services. Autism 8(4): 387-407.
50. McPartland, James, Brian Reichow, and Fred Volkmar 2012 Sensitivity and Specificity of Proposed DSM-5 Diagnostic Criteria for Autism Spectrum Disorder. Journal of the American Academy of Child and Adolescent Psychiatry 51(4): 368-383.
51. Midence, Kenny, and Meena O'Neill 1999 The Experience of Parents in the Diagnosis of Autism: A Pilot Study. Autism 3(3): 273-85.
52. Molloy, Harvey, and Latika Vasil 2002 The Social Construction of Asperger Syndrome: The Pathologising of Difference? Disability and Society 17(6): 659-669.
53. Montiel-Nava, Cecilia and Peña, Joaquin 2008 Epidemiological Findings of Pervasive Developmental Disorders in a Venezuelan Study. Autism 12: 191-202.
54. Nadesan, Majia 2005 Constructing Autism. Unravelling the 'Truth' and Understanding the Social. London, NY: Routledge.
55. Orsini, Michael, and 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.
56. Ortega, Fernando 2009 The Cerebral Subject and the Challenge of Neurodiversity. Biosocieties 4: 425-445.
57. Paula, Cristiane, Ribeiro, Sabrina, Fombonne, Eric, and Marcos Mercadante 2011 Brief Report: Prevalence of Pervasive Developmental Disorder in Brazil: A Pilot Study. Journal of Autism and Developmental Disorders 41: 1738-1742.
58. Poirier, Annie, and Georgette Goupil 2008 Diagnostic Process of Persons with Pervasive Developmental Disorders in Quebec: Parents' Experience. Journal on Developmental Disabilities 14(3): 19-28.
59. Poltorak, Mike, Melissa Leach, James Fairhead, and Jackie Cassell 2005 'MMR talk' and Vaccination Choices: An Ethnographic Study in Brighton. Social Science and Medicine 61: 709-719.
60. Read, Janet 2000 Disability, the Family, and Society: Listening to Mothers. Buckingham: Open University Press.
61. Rimland, Bernard 1964 Infantile Autism: the Syndrome and its Implications for a Neural Theory of Behavior. New York: Appleton-Century-Crofts.
62. Rose, Nikolas 2003 Neurochemical Selves. Society 41(1): 46-59.
63. Rosenberg, Charles E. 2002 The Tyranny of Diagnosis: Specific Entities and Individual Experience. The Milbank Quarterly 80 (2): 237-260.
64. Samadi, Sayyed Ali, Mahmoodizadeh, Ameneh, and McConkey, Roy 2012 A National Study of the Prevalence of Autism among Five-Year-Old Children in Iran. Autism 16 (1): 5-14.
65. Scott, Susie 2006 The Medicalisation of Shyness: From Social Misfits to Social Fitness. Sociology of Health and Illness 28(2): 133-153.
66. Scott, Fiona J., Simon Baron-Cohen, Patrick Bolton, and Carol Brayne 2002 Prevalence of Autism Spectrum Conditions in Children aged 5-11 years in Cambridgeshire, UK. Autism 6(3): 231-237.
67. Senecky, Yehuda, Gabriel Chodick, Gary Diamond, Danielle Lobel, Raphael Drachman, and Dov Inbar 2009 Time Trends in Reported Autistic Spectrum Disorders in Israel, 1972-2004. Israel Medical Association Journal 11(1): 30-33.
68. Shaked, Michal, and Yoram Bilu 2006 Grappling with Affliction: Autism in the Jewish Ultraorthodox community in Israel. Culture, Medicine, and Psychiatry 30(1): 1-27.
69. Siklos, Susan, and Kimberly A. Kerns 2007 Assessing the Diagnostic Experiences of a Small Sample of Parents of Children with Autism Spectrum Disorders. Research in Developmental Disabilities 28(1): 9-22.
70. Silverman, Chloe 2008 Fieldwork on Another Planet: Social Science Perspectives on the Autism Spectrum. Biosocieties 3: 325-341.
71. Silverman, Chloe 2012 Understanding Autism: Parents, Doctors, and the History of a Disorder. New Jersey: Princeton University Press.
72. Sinclair, Jim 1992 Bridging the Gaps: an Inside-out View of Autism. In High-functioning individuals with autism. E. Schopler, and G. Mesibov, eds. Pp. 266-275. New York: Plenum Press.
73. Singer, Judy 2003 Travels in Parallel Space: An Invitation. In Women From Another Planet? Our Lives in the Universe of Autism. Jean Kearns Miller, ed. pp. xi-xiii. Bloomington: 1st Books Library.
74. Singh, Ilina 2008 Beyond Polemics: Science and Ethics of ADHD. Nature Reviews Neurosciences 9: 957-964.
75. Sullivan, Ruth Christ 1997 Diagnosis Autism: You Can Handle It! In Handbook of Autism and Pervasive Developmental Disorder. D. J. Cohen, and F. R. Volkmar, eds., pp. 1007-1020. New York: Wiley.
76. Wallis, Claudia 2009 A Powerful Identity, a Vanishing Diagnosis. New York Times, November 2.
77. WHO 2005 Mental Health Atlas 2005. World Health Organization, Geneva.
78. Williams, Jo, Higgins, Julian, and Brayne, Carol 2006 Systematic Review of Prevalence Studies of Autism Spectrum Disorders. Archives of Disease in Childhood 91: 8-15.
79. Zhang, Xin, and Cheng-Ye Ji 2005 Autism and Mental Retardation of Young Children in China. Biomedical and Environmental Sciences 18 (5): 334-340.