Abstract
Pathways to diagnosis in adulthood are poorly understood. Even less is known about undiagnosed adults who believe they may be autistic. This mixed-methods online survey examined adults’ journeys from initial concern to receiving the diagnosis. Quantitative findings showed the diagnostic process to be highly heterogeneous. Qualitative analysis identified desires for explanation and support as motives for seeking diagnosis. Cost and fear of not being taken seriously were major barriers, echoed by qualitative responses that described the process as confusing, expensive and time-consuming. While most participants were satisfied with the diagnosis, their emotional reactions were complex. Findings support the need for thoroughly implementing national guidelines, and for improved knowledge and communication in mainstream clinicians encountering clients with possible autism characteristics.
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Notes
Following initial use of the term autism spectrum disorder, we use Identity-first (“autistic person”) and neutral (“on the autism spectrum”) terminology throughout based on participants’ preferences.
Due to sample size and complexity of non-binary gender categories, only male and female participants were included in analyses involving gender.
Missing data was excluded.
Excluded one participant with self-reported age of first suspicion older than age of diagnosis.
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Acknowledgments
This work was supported by the Cooperative Research Centre for Living with Autism (Autism CRC), established and supported under the Australian Government’s Cooperative Research Centres Program. The authors also acknowledge the financial support of the Australian Government Research Training Program. We thank Michael and Sharon Bartels, Jen Harland, Julianne Higgins, Michael Knight, Joanne Mahony, and Chris Tanner for their advisory input into this project.
Funding
This work was supported by the Cooperative Research Centre for Living with Autism (Autism CRC), established and supported under the Australian Government’s Cooperative Research Centres Program. The authors also acknowledge the financial support of the Australian Government Research Training Program.
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All authors contributed to the study conception and design. Questionnaire design, data collection and analysis were performed by Yunhe Huang with guidance from all authors. The first draft of the manuscript was written by Yunhe Huang and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
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Huang, Y., Arnold, S.R.C., Foley, KR. et al. Choose your Own Adventure: Pathways to Adulthood Autism Diagnosis in Australia. J Autism Dev Disord 52, 2984–2996 (2022). https://doi.org/10.1007/s10803-021-05169-4
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DOI: https://doi.org/10.1007/s10803-021-05169-4