Exploring the Experience of Seeking an Autism Diagnosis as an Adult

Abstract

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 postdiagnostic 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.

Women seeking an autism diagnosis in Australia: A qualitative exploration of factors that help and hinder

“…In addition, women carefully researched and selected a diagnostician to maximise their chance of experiencing validation. While past research has found that an autism diagnosis can result in validation and self-understanding (de Broize et al, 2021;Harmens et al, 2022;Leedham et al, 2020), this study has identified that efforts to allow validation are an important part of the diagnostic process itself. For some women, their pre-diagnosis personal narrative involved internalised shame and the assessment helped them take a more self-compassionate stance.…”

“…Several communication facilitators were highlighted, including preparing notes, taking notes during the assessment process and online assessment using email and videoconferencing. Communication has been identified as playing an important role in experiences of both the diagnostic process and healthcare access generally in previous research (de Broize et al, 2021;Nicolaidis et al, 2015;Raymaker et al, 2016), and this study builds on this by exploring communicatory facilitators.…”

“…Third, participants suggested that diagnosis was more difficult to access as the diagnostic criteria and tools were not based on women (Kirkovski et al, 2013;Young et al, 2018). This builds on recent qualitative research that found women were concerned that diagnostic criteria would not identify them, which deterred them from seeking diagnosis (de Broize et al, 2021;Harmens et al, 2022). Assessment tools tailored to autistic women are being developed (e.g.…”

Perspective Chapter: Rethinking Autism Assessment, Diagnosis, and Intervention within a Neurodevelopmental Pathway Framework

“…With the understanding that we live in a neurodiverse society and that diversity is to be welcomed-a key question is then why do we need diagnosis at all? The reason is that autistic people tell us that it does matter, whether diagnosed early in childhood [25], or in adulthood [26]. In societies constructed to provide resources to meet needs according to diagnosis, lack of diagnosis is an immediate barrier to accessing support and information.…”

“Peas in a pod”: Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults

“…This Australian project opens up many areas for future research, including the extent to which late-diagnosed autistic adults in other cultural contexts actively build a shared Autistic identity based in family and community and whether or not that identity is, at times, contested. Given the growing phenomenon of self-diagnosis (Sarrett, 2016 ), in part prompted by numerous barriers to formal adult autism diagnosis, both within Australia (de Broize et al, 2021 ) and elsewhere (Lewis, 2017b ), further research with these adults may illuminate aspects of the active creation of neurocommunities in the absence of clinical identification. Our focus on the processes of shared Autistic identity building highlights the value of participatory approaches, co-designed and co-produced by autistic and non-autistic researchers (see den Houting et al, 2021 ; Pellicano & den Houting, 2021 ), that privilege autistic perspectives and experience.…”