What Can We Learn about Autism from Autistic Persons?

Abstract

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.