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

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.