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

Céline Borelle (1)

1 PACTE - Pacte, Laboratoire de sciences sociales

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. Secondly, analyzing the parents' narratives allows to understand the way an ambivalent public action ends up in dualizing the child's trajectories, according the parents' ressources. Autism has a limineal place: it stands in between disability and mental health. It has been recognized as implying disability that must be compensated but at the same time; it has a special place within the disability field as long as it is not that fixed and seems to offer possibilities of evolution. The public action towards autism is ambiguous: it hasn't chosen between psychiatry and medico-social structures, disability and mental disease, therapy and education. Parents who manage to get considered as "competent" and who can rely on different ressources (social, financial, cultural) may have the possibility to avoid specialized structures and to access their rights (schooling their child in an ordinary institution, and getting their child's disability compensated). They may also implement alternative arrangements of care, that are, at least partially, financed by the public dispositive of disability compensation. But other parents don't get a diagnosis for their child's situation and don't have the possibility to consider an alternative to medico-social structures or psychiatric institutions. Parents don't have the capacity to claim a right to diagnosis, to prove they are not responsible for their child's problems, to contest a given proposition of care, to conceive and implement alternative arrangements of care, to get involved and prove their competence in following-up their child's schooling, to explain their needs and to argue their demand of public aids... Eventually, this paper raises the following question: As the principle of individual responsability is becoming predominant in a lot of public health and social issues, to what extent individuals' uses of a public offer become an implicit regulatory mecanism of a public policy? We may argue that public policy towards autism relies on the parents' capacity to make use of the possibilities that it opens. Making parents responsible of their child's becoming triggers social unequalities and opens a lot of intermediary spaces of selection in different fields (school, administrative and medical), which questions the political delegation of the problems'qualification and debunks the myth of the user's choice.

Mots clés: autism; parentality; rights

Domaines: Sociologie

Céline Borelle. When public policy relies on parentality. The case of autism.. Interpretative Policy Analysis 6th Conference, Jun 2011, Cardiff, United Kingdom. ⟨halshs-00629202⟩