The adult experience of being diagnosed with autism spectrum disorder: A qualitative meta-synthesis.

Publisher: Sage Publications In Association With The National Autistic Society Country of Publication: England NLM ID: 9713494 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1461-7005 (Electronic) Linking ISSN: 13623613 NLM ISO Abbreviation: Autism Subsets: MEDLINE

Publication: London : Sage Publications In Association With The National Autistic Society
Original Publication: London ; Thousand Oaks, CA : Sage Publications in association with the National Autistic Society, c1997-

Autism Spectrum Disorder*/psychology ; Autism Spectrum Disorder*/diagnosis ; Self Concept*; Humans ; Adult ; Qualitative Research ; Adaptation, Psychological

Lay Abstract: There is little research looking at the experience of individuals diagnosed with autism spectrum disorder as adults. Adults diagnosed with autism spectrum disorder face different challenges than children, and more research is needed to better understand those challenges. For this review, autistic and non-autistic researchers looked at research on the experience of receiving a diagnosis of autism spectrum disorder as an adult. We looked for themes in people's experience leading up to diagnosis, going through the diagnostic process, and living their life after diagnosis. We analyzed 24 studies and found three overarching themes that captured thirty-two themes describing the experience of diagnosis. The three overarching themes expressed issues with identity and relationships before and after the diagnosis and identified that the diagnosis of autism spectrum disorder in adulthood impacted people's adaptation to and assimilation (i.e. the making sense of and internalizing the diagnosis) of autism spectrum disorder. While the diagnostic process itself was confusing and disappointing for many, it often led to a sense of relief and clarity regarding past experiences and had effects on identity and self-esteem. It created opportunities to connect with other autistic individuals and to access services, though appropriate supports were widely lacking. Recommendations are made that the impact of the diagnosis on people's identity and choices about telling others about their diagnosis, and whether and how people want to make adaptations, should be discussed and thought through in the process of diagnosis.
Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Keywords: ASD; adult; autism; autism spectrum disorder; diagnosis; mental health; qualitative

Date Created: 20240215 Date Completed: 20240502 Latest Revision: 20240502

20240502

10.1177/13623613231220419

38360530