Vécu des familles d’enfants autistes de 1960 à 2005 : une étude rétrospective.

In order to analyse the difficulties encountered by the parents of autistic children, in 2005 we undertook a retrospective study aiming to compare the experiences of the families for the period from 1960 to 1990 with the period from 1990 to 2005. A questionnaire specially designed to capture the experiences of these parents was widely circulated – 248 questionnaires were returned for a population of 200 autistic people aged 4 to 45 at the time of the survey. In-depth interviews were conducted with 36 mothers and 6 fathers. The results show that the diagnoses of autism are obtained earlier today – at the age of 10 ± 8 years from 1960 to 1990 and at the age of 5 ± 3 years between 1990 and 2005. Alongside, the percentage of parental discontent fell from 93% to 63%. The diagnostic process caused dissatisfaction among parents because of long delay in obtaining it and/or blunt announcement without care or consideration. For care provision, parental satisfaction was 62% for the care of autistic individuals who were adults at the time of the survey, and 47% for the children. The parents were satisfied when they finally found appropriate solution for their adult children. For the young children, there were many reasons for dissatisfaction: lack of educational and care services, not enough school hours, fragmented services, requests of intensive behavioral methods unmet. The shortage of places in facilities, territorial inequalities and unfavorable psycho-socio-economic indicators leave many families in situations of distress. [ABSTRACT FROM AUTHOR]