Autism and social movements: French parents’ associations and international autistic individuals’ organisations

Abstract

The aim of this empirical investigation is to analyse the social movements brought about by autism-related issues. It is suggested that both the autism-category changes in the late 1980s, and the development of educational and behavioural methods in the United States, have given rise to a large-scale mobilisation around the changes in the definition of autism and interventions in many countries. The present paper highlights the historical dynamics of the mobilisation of French parents' associations and the engagement of autistic persons' organisations. The role of the French parents' associations has been studied over the last 40 years to show how they have contributed to shaping public policy in France and how they have favoured the American model of autism despite the French professionals' resistance. At the international level, the newly-born associations of autistic individuals have introduced new actors who sometimes reproach the parents' associations for speaking on their behalf. These new associations, such as self-help groups, have a political identity problem. Their members no longer want to be considered as patients but as individuals with a different cognitive mode of functioning. Their actions can be analysed in the broader context of the disability movement. If the disability movement is considered as the latest generation of social movements, the action of autistic persons can be viewed as the latest generation of the disability movements.

Cross-Cultural Autism Studies, Neurodiversity, and Conceptualizations of Autism

“…However, a broader cross-cultural literature is growing. Anthropologists and other scholars have investigated autism with particular attention to local particularity in Brazil (Block and Cavalcante 2012), Cuba (Sotgiu et al 2011), France (Chamak 2008;Chamak et al 2010;Chamak and Bonniau 2013;Orchard 2013), India (Daley 2002(Daley , 2004Daley and Sigman 2002;Mehrotra and Vaidya 2008;Sarrett 2015a), Israel (Bilu and Goodman 1997;Vogel andReiter 2003, 2004), Italy (Cola and Crocetti 2011;Sotgiu et al 2011), Morocco (Haldane and Crawford 2010;Hart 2014), Singapore (Poon 2011), South Africa (Grinker et al 2012), and South Korea (Grinker and Cho 2013;Grinker et al 2012;Kang-Yi, Grinker, and Mandell 2013). One goal of this special issue is to stimulate conversation about autism between researchers working in different countries, thereby internationalizing the conversation about autism.…”

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

“…The analysis of this process can cast light on variations according to era, country, culture, public awareness and training received by professionals. The example of autism is particularly illustrative since the category of autism has undergone huge changes over the past 20 years (Chamak 2008;Eyal 2010;Grinker 2007;Hacking 2002;Nadesan 2005; Silverman 2008Silverman , 2012. The aims of the study are: 1) to offer insight into French parents" experiences with the diagnosis of autism and related categories; 2) to document changes over time in policies and the diagnostic process; 3) to compare the situation in France with other countries and analyze why French psychiatrists were reluctant to adopt the broadening of the diagnostic criteria for autism.…”

“…The statistics contribute to lay and medical belief in the efficacy of early detection and treatment. Proponents of early and intensive interventions and associations of parents are working to change practices and to expand the broadened definition of autism even further (Chamak 2008). The associative movement interacts with the underlying political dynamics and is significantly affected by market forces (Caruso 2010).…”

“…The first epidemiological studies used narrow definitions of autism that excluded milder forms and omitted children diagnosed as "mentally retarded" who may have had autism (Chamak 2008;Grinker 2007;Hacking 2002;Silverman 2008).…”

Les associations de parents d’enfants autistes

“…Elles redéfinis-sent l'autisme comme une différence, un autre mode de fonctionnement cognitif. Pour elles, il ne s'agit pas seulement de défendre des intérêts mais d'en appeler à de nouvelles formes d'organisation de la société dans laquelle les différences ne seraient plus considérées comme des écarts à la norme, mais comme des formes d'identité à part entière [14]. ‡ Autism and social movements: French parents' associations and international autistic individuals' organizations RÉFÉRENCES …”