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When public policy relies on "parentality". The case of autism.

Version imprimable
TitreWhen public policy relies on "parentality". The case of autism.
Type de publicationConference Proceedings
Année2011
AuteursBorelle, Céline
Autre titreIPA, panel 34
Lieu d'éditionCardiff
Pagination12
Date détaillée2011/06
Catégorie

Bibliographie thématique / réponses institutionnelles

Mots-clésSanté
Résumé

This paper is based on an ongoing PHD research concerning the trajectories of autistic children in terms of problems qualification and care arrangements. This research uses qualitative methods (ethnography, non participating observations, interviews, case analysis) and aims at intricating different actors’ points of views according their position in different worlds (school, medical, administrative, family), in order to understand the logic of the child’s trajectories. The research takes place in a French regional context. This paper focuses on the way parents position themselves towards public offer and access their rights through overcoming a series of obstacles.
The idea is to look at the people who access their rights or make use of the public offer to understand why other people may not. The issue of taking-up rights and/or public offer raises an empirical problem: people who don’t take up, whether it is because they don’t accept or access their rights and/or the public offer, are difficult to access for the researcher insofar as they are most of the time invisible in the public dispositives.
The first step in the processual access to public offer and rights is to get the problem defined. To get one’s child diagnosed as autistic opens possibilities of claims, as far as it includes the child in a public that is identified and targeted by a policy. Nevertheless, parents’s narratives express how it is difficult to get a health professional to talk about autism. Access to a diagnosis is preceded by a long trajectory made of multiple encounters with health professionals, appeals to associations of parents and researches on the Internet.
Once again, it is difficult for the researcher to analyze the cases of children who may be diagnosed as suffering from autistic disorders but aren’t because on the first hand, the researcher can’t use the medical qualification of the problems and arbitrary apply it to some children’ situations. On the second hand, it is difficult for the researcher to access a problem that is not identified and named. The issue of diagnosis is two-part folded: the problem may not be diagnosed by the health professionnals and/or the diagnosis upon which health professionnals act may not be told to the parents.
The issue of diagnosis is all the more problematic in the case of autism as French psychiatry is caracterized by a controversy about medical classifications and a plurality of positions towards diagnosis: psychiatrists inspired by the psychoanalytic approach, favor the clinical view, have internalized the anti-psychiatry criticisms and are reluctant to label a situation that may evolve; other psychiatrists, more open to educationnal and behavioural methods, favour early diagnosis, based on standardized tests, in order to implement adapted methods. Those conceptions of diagnosis rely on different logics of relationship with the parents: on one side, the psychiatrist evaluates to what extent parents are ready to accept a diagnosis and consider diagnosis announcement as a possible trauma; on the other side, psychiatrists are more open to the fact that parents may claim a right to get a diagnosis.
We can make the hypothesis that some parents can’t initiate a possibly conflictual process to access diagnosis or don’t realize the value of such a medical qualification in the administrative area.