The Social World of Autism: Perspectives from Adults on the Autism Spectrum

Background: Despite the broad range of practices contributing to the understanding and meaning of autism, very little research has focused on the world as it is conceived, experienced and imagined by those on the autism spectrum. Rarely are narratives found in the literature that help scientist understand the heterogeneity within autism spectrum disorder (ASD) and the life experiences that contribute to how people with ASD come to understand this disorder. Furthermore, the construction and understanding of this disorder has been focused mainly on children and not necessarily adults. The extent to which adults with ASD experience the social world may be very different than those practices involved in understanding ASD as either a childhood disorder, a psychological disorder, a genetic disorder, a neurological disorder, or a combination there of.

Objectives: The purpose of this research is to better understand the social world of adults identified or diagnosed on the autism spectrum. It will reveal how individuals identified or diagnosed with high functioning autism or Asperger's disorder describe different levels of silencing and suffering base on their life experiences, and the survival mechanisms they have used to help them transition into adulthood.

Methods: The data collection consists of 18 in-depth interviews with adults (ages 18-55 years old) who are diagnosed or identify with high functioning autism or Asperger's disorder. The participants were asked what they know about autism spectrum disorders, their experiences with or without a diagnosis, and the major challenges they have experienced in life.

Results: The silencing mechanisms apparent in this sample centered around communication and social interaction issues. Consequently, this was a cause for much of the suffering experienced by these adults in the form of anxiety, isolation and misinterpretation. Other suffering occurred through different forms of depression, compulsive behavior, and sensory stimulation. Survival mechanisms were based on different ways of learning how to cognitively perform in social situations, the ability to identify strengths and weaknesses, and the diagnosis and disclosure of being on the autism spectrum.

Conclusions: This study offers insight to the silencing, suffering and survival processes of adults on the autism spectrum. The social world experienced by participants in this study are much more proximal to the day-to-day life experiences in social interaction rather than complex practices that describe autism based on different forms of scientific and technical knowledge. Their advise to scientists studying autism is to focus more on how they can be contributing members to society by addressing who they are “now” and focusing on the many differences that exists among people on the autism spectrum.