Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism

Abstract

Background  Although there is extensive research examining parental experiences of assessment and diagnosis of autism, there is a paucity of research from the perspective of individuals with autism.

Method  Semi‐structured interviews were conducted with nine young people with high functioning autism who were capable of providing a verbal account of their perceptions of autism and diagnosis experiences. Data were analysed using interpretative phenomenological analysis.

Results  Diagnosis, and the disclosure of the diagnosis of autism, were embedded in respondents' perceptions of “having” autism. This superordinate theme included five themes: (i) disclosure delay, (ii) providing explanations, (iii) potential effects of labelling, (iv) disruptions and opportunities, and (v) acceptance and avoidance.

Conclusion  In relation to the existing literature, it is suggested that the effects of diagnosis, or disclosure of diagnosis, from the perspective of the person with autism be given greater consideration.

Keywords:

• autism
• diagnosis disclosure
• diagnosis delay
• interpretative phenomenological analysis