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.
Keywords: adults; autism spectrum disorders; diagnosis; health professionals; identification; supports.
Why is this an important issue?: The experience of being diagnosed as autistic as an adult is not well understood, particularly in Australia. Research from other places, such as New Zealand and the United Kingdom, suggests that receiving an autism diagnosis in adulthood is difficult and time-consuming, but brings relief. We do not know whether this is the same for adults in Australia.
What was the purpose of this study?: This study aimed at exploring the experience of seeking an autism diagnosis during adulthood in Australia.
What did the researchers do?: We conducted interviews with 13 adults who identified as autistic about their pathway to an autism diagnosis. Three sets of interview questions were used, depending on whether they had already obtained an autism diagnosis, were going through the assessment process, or were self-diagnosed. Adults completed the interview in their mode of choice. Spoken interviews were transcribed word-for-word, and the transcripts were analyzed to identify common themes.
What were the results of the study?: We identified six themes that described the experiences of adults seeking an autism diagnosis in Australia. These themes involved two related journeys that spanned before, during, and after the diagnostic process. The personal journey involved feeling different, considering autism, and living as autistic. The clinical journey involved missed opportunities, varied diagnostic experiences, and absent supports. Before starting the diagnostic process in adulthood, participants described always feeling different and many missed opportunities to receive an autism diagnosis in their younger years.During the diagnostic process, participants described beginning to consider whether they were autistic and the varied pathways they underwent to confirm this. After the diagnostic process, participants described their experiences of living as autistic and a lack of post-diagnostic supports tailored to their needs.
What do these findings add to what was already known?: Our findings were similar to previous research findings from other countries, including the complex journey to diagnosis, relief and understanding on identifying as autistic, and lack of post-diagnostic services. However, to our knowledge, this is the first qualitative study to explore the experiences of adults seeking an autism diagnosis in Australia. Further, we included participants who did not have a formal diagnosis of autism. This group of people is often excluded from autism research, and their experiences of seeking an autism diagnosis are largely unknown.
What are potential weaknesses in the study?: The weaknesses of our study included recruiting a relatively small sample of mostly Caucasian females, and we did not consult with our study participants or other autistic adults to see whether our final themes aligned well with their experience. However, no new findings emerged in later interviews and our findings were similar to international literature. Future research should recruit more diverse groups of autistic adults and involve greater levels of autistic input.
How will these findings help autistic adults now or in the future?: Our findings informed the development of the “National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorder in Australia,” a first step toward improving autism diagnosis in Australia.
Copyright 2022, Mary Ann Liebert, Inc., publishers.