Béatrice Bonniau

What Can We Learn about Autism from Autistic Persons

Background: To date, few studies have focused on the viewpoints of autistic persons themselves despite an increasing number of published autobiographies. The aim of this study is to highlight their personal experiences, and to compare them to scientific and medical knowledge and representations. Method: Adopting an anthropological approach, we analyzed 16 autobiographical writings and 5 interviews with autistic persons. We systematically screened this material and explored the writers’ sociodemographic characteristics, cognitive skills and interests with a focus on their sensory-perceptual experiences and their representations of autism. Results: The authors’ ages (22–67 years), their countries (n = 8) and backgrounds were varied, and most of them were high-functioning individuals with autism or Asperger syndrome. The most striking observations were that all of them pointed out that unusual perceptions and information processing, as well as impairments in emotional regulation, were the core symptoms of autism, whereas the current classifications do not mention them. Conclusions: Our results suggest that what has been selected as major signs by psychiatric nosography is regarded as manifestations induced by perceptive peculiarities and strong emotional reactions by the autistic persons who expressed themselves. These considerations deserve to be taken into account by professionals to better understand the behavior and needs of autistic persons. We propose to include this point in the reflection on the next psychiatric classifications.

The autism diagnostic experiences of French parents

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.

Trajectories, Long-Term Outcomes and Family Experiences of 76 Adults with Autism Spectrum Disorder.

The aim of this retrospective study was to retrace the trajectories and long-term outcomes of individuals with autism in France, and to explore the family experiences. Data obtained from parents enables us to follow the trajectories of 76 adults. Two-thirds of adults with severe autism had a very poor outcome. Those with moderate autism had a better outcome. In adulthood, the majority were in residential accommodation. None were living independently. The trajectories of people with Asperger syndrome or high-functioning autism were more positive since all of them attended school for a long time and some went to university. All of them had a good outcome but they remained dependent on aging parents who had few available supports.