The autism diagnostic experiences of French parents

Abstract

This survey focused on French parents' views of the diagnostic process relating to their child with autism. Data were collected on the age at diagnosis, the time taken to obtain a diagnosis and the difficulties encountered. Questionnaires filled in by the parents (n = 248) and in-depth interviews (n = 43) were analyzed in order to obtain quantitative and qualitative results. The ages of the children ranged from 4 to 45. This approach enabled us to compare the practices of professionals now and in the past. The mean age of diagnosis was 10 ± 8 years from 1960 to 1990, 5 ± 3 years from 1990 to 2005 (3 ± 1 from 2003 to 2005). The results showed that the mean delays between first consultation and diagnosis were reduced. Regarding the way the diagnosis was announced, 63% of the parents of children with autism and 93% of the parents of adults with autism were dissatisfied. We discuss the parents' reactions and the changes in the diagnostic process.

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

“…The parental reports illustrated the tendency of some professionals to minimize problems and/or to enhance the feeling of guilt of the parents: (Chamak 2008;Farrugia 2009). The diagnosis provides a degree of explanation for a child"s behavior, and helps parents accept that they are not to blame for the condition (Chamak et al 2011). Many parents are relieved when a professional corroborates what they initially suspected (Midence and O"Neill 1999;Mansell and Morris 2004;Sullivan 1997), and they are often less upset by the term "autism" than by the phrase "mentally retarded".…”

“…Before the 1990s, the mean age at diagnosis was 10 (Chamak et al 2011). The diagnosis of Asperger"s syndrome was not given before the 1990s because the category did not exist in the French classification.…”

“…This approach enabled us to collect both quantitative and qualitative data and thus to compare diagnostic practices and parents" experiences for two periods (1960-1990 and 1990-2005). The quantitative data have been previously published (Chamak et al, 2011). In this study we analyzed the qualitative results obtained from the parents" interviews and the responses to the questionnaire regarding the diagnostic process.…”

“…For a long time, French psychiatrists were reluctant to give a diagnosis of autism to parents in an effort to avoid negative reactions from parents towards their child (Chamak 2008;Chamak et al 2011). In France, services are available even without diagnosis, the description of symptoms by professionals being enough to claim help and services.…”

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.…”