Illuminating autism: exploring identity transitions among adults diagnosed with autism

Abstract

Autism Spectrum Disorder (ASD) is a relatively new diagnostic label that has undergone some changes in the latest edition of the DSM. This research is a study of individuals diagnosed during adulthood with ASD. Its aim is to understand the impact of diagnostic labels on the identity of autistic adults and examine how these individuals negotiate the labels within their social environment. To this end, the study focuses on exploring four key aspects of the subject-matter in question: (1) the labelling process from informal labelling by peers, families, and institutions to formally acquiring a diagnostic label; (2) identity formation as a consequence of informal and formal labelling; (3) needs of autistic adults who are formally diagnosed; and (4) autism advocacy as a means of making life more inclusive for high functioning autistic adults. Given the study’s focus on the lived experiences of individuals diagnosed with ASD during adulthood, participants 18 years of age or older who were formally diagnosed with either AS or ASD were interviewed. The study’s findings show that for autistic adults receiving a diagnosis is often a positive experience that, in many cases, enables them to finally understand their “self” and develop a feeling of belonging; however, the lack of knowledge, services, resources and policies attuned to their needs is the main obstacle to removing barriers preventing autistic individuals from participating in social life as independent and autonomous members of society.