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

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Abstract

The category of autism has undergone huge changes over the past 20 years. This study was undertaken to analyze the changes and how parents have experienced the diagnostic process in France. Data were obtained from in-depth interviews with parents and psychiatrists, and from 248 questionnaires with open-ended questions filled in by parents. We compared the experiences of parents with adult autistic children to those of parents with young autistic children. Progressively earlier age at diagnosis was evidenced. These changes occurred later than in North America and the UK, due to the reluctance of French professionals to adopt the new classifications of diseases which they viewed as undervaluing both the physician’s holistic clinical skills, and psychoanalytical interpretations. Parents’ experiences and interviews with psychiatrists were analyzed in order to document changes over time in the diagnostic process following tensions between parents and professionals, and intra-professional debates in psychiatry. Our data support the notion that the diagnosis of autism is historically and nationally contingent. The interactions between changes in the diagnostic process, policy, and parental experiences have led to changes in the way autism is defined, understood, and experienced.

Résumé

Au cours des 20 dernières années, la catégorie “autisme” a subi d’importantes transformations. Cette étude vise à analyser ces changements et le vécu des parents qui ont fait l’expérience du processus diagnostique en France. Les données ont été obtenues à partir d’entretiens approfondis réalisés avec des parents et des psychiatres, et 248 questionnaires remplis par les parents. Nous avons comparé les témoignages de parents d’enfants adultes et de parents de jeunes enfants autistes. L’âge du diagnostic est plus précoce aujourd’hui. Les changements sont apparus plus tardivement qu’en Amérique du Nord ou au Royaume-Uni compte-tenu de la réticence des professionnels français à adopter les nouvelles classifications des maladies qui, selon eux, sous-estiment les compétences cliniques des praticiens et l’apport des interprétations psychanalytiques. L’expérience des parents et les entretiens avec les psychiatres ont permis d’analyser les changements du processus diagnostique, résultats des tensions entre parents et professionnels et des débats au sein de la psychiatrie. Nos données illustrent l’instabilité du diagnostic d’autisme qui change avec le temps et différemment d’un pays à l’autre. Les interactions entre les changements subis par le processus diagnostique, les politiques publiques et l’expérience parentale se concrétisent par des changements dans la manière dont l’autisme est défini, compris et vécu.

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Acknowledgments

This research was supported by the ‘Institut National de la Santé et de la Recherche Médicale’ (INSERM), Paris Descartes University, the Centre National de la Recherche Scientifique (CNRS), and the Fondation de France. We wish to thank Pr A. Danion and Dr V. Pascal from Louis Pasteur University (IRIST-Strasbourg) for their participation in the design and the distribution of the questionnaire, as well as Pr. David Cohen from the Pitié-Salpêtrière Hospital. We are grateful to the parents’ associations and the professionals who distributed the questionnaire, and the parents who took the time to fill it in and answer our questions. We would also like to thank also Christine Calderon for her transcriptions of interviews, as well as Angela Swaine Verdier for rereading the manuscript.

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  1. CERMES3, INSERM U988, CNRS UMR 8211, EHESS, Paris Descartes University, 45 rue des Saints-Pères, 75270, Paris Cedex 06, France

    B. Chamak & B. Bonniau

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  1. B. Chamak
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Correspondence to B. Chamak.

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Chamak, B., Bonniau, B. Changes in the Diagnosis of Autism: How Parents and Professionals Act and React in France. Cult Med Psychiatry 37, 405–426 (2013). https://doi.org/10.1007/s11013-013-9323-1

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