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.