Announcing the diagnosis of autism to the parents in France: Past and Present

Background: French psychiatrists used to be reluctant to announce the diagnosis of autism to parents. Nowadays, the families still deplore how difficult it is to obtain the diagnosis despite the recent recommendations of the Haute Autorité de Santé (HAS) published in June 2005 in France.

Objectives: This study was performed: 1°) to analyse the difficulties encountered by the French parents in obtaining a diagnosis; 2°) to compare the practices of the professionals in the past and today; 3°) to evaluate the improvements but also the problems which persist.

Methods: A questionnaire was conceived for the parents and diffused in France by the associations, the psychiatrists, various structures and on the Internet (http://www.cesames.org/spip/IMG/Qparents8.pdf): 248 questionnaires were collected. All the questionnaires were computerized using Modalisa software and data were analysed both with a quantitative and a qualitative approach.

Results: The mean age for obtaining the diagnosis was 6 ± 5 years: 5 ± 3 for the children and teenagers and 10± 6 for the adults (≥ 18 year-old) showing a real improvement. However, 62% of the parents of autistic children and 92% of the parents of autistic adults declared being unsatisfied by the way the diagnosis was announced. They deplored the delay in obtaining a diagnosis (85% of the parents would prefer to get the diagnosis earlier), as well as the lack of information and help and sometimes the blunt way the diagnosis was given.

Conclusions: Progress remains to be made to improve the way the diagnosis is announced. Autism is not simply a disease or a handicap; it is also a social and human problem. The lack of help and services and the pessimistic prognostic expressed by psychiatrists seem to play a role in the parents’ feeling of hopelessness when they get the diagnosis of autism for their children.