Exploring the Experience of Seeking an Autism Diagnosis as an Adult

Matthew de Broize, Kiah Evans, Andrew J. O. Whitehouse, John Wray, Valsamma Eapen, Anna Urbanowicz

Research output: Contribution to journalArticlepeer-review

7 Citations (Scopus)


Background: Emerging research suggests that seeking an autism diagnosis as an adult is usually difficult and time-consuming but brings relief once a diagnosis is made. This study explored the experience of the pathway to an autism diagnosis during adulthood for adults living in Australia.

Methods: We conducted a qualitative phenomenological study and interviewed 13 adults who identified as autistic about their pathway to autism diagnosis in their mode of choice. Spoken interviews were transcribed verbatim, and transcripts were analyzed by using a thematic approach.

Results: Data analysis resulted in 6 themes and 20 meaning units that described the experiences of adults seeking an autism diagnosis in Australia. These themes involved two interwoven journeys that spanned before, during, and after the diagnostic process. The personal journey involved feeling different, considering autism, and living as autistic, whereas the clinical journey involved missed opportunities, varied diagnostic experiences, and absent supports.

Conclusions: Given the potential benefits for adults obtaining a formal autism diagnosis and accessing post-diagnostic supports, it is important that health professionals and governments collaborate to reduce access barriers and ensure adequate services are available. The findings from this study informed the development of Australia's national guideline for autism diagnosis.
Original languageEnglish
Pages (from-to)130-140
Number of pages11
JournalAutism in Adulthood
Issue number2
Early online date23 Dec 2021
Publication statusPublished - 1 Jun 2022


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