When expectation meets experience: A qualitative analysis of serial interviews with adults before and after autism assessment

TL;DR

This study explores how adults experience the process of getting an autism diagnosis, finding that it's emotionally complex and can lead to greater self-understanding and community connection.

Contribution

The study provides new insights into the evolving lived experiences of adults during the autism diagnosis journey through serial interviews before and after assessment.

Findings

Adults often seek diagnosis to better understand themselves, with mixed emotions throughout the process.

Challenges in accessing resources and system deficiencies were common during the diagnostic journey.

Many participants transitioned from isolation to advocacy and community participation after diagnosis.

Abstract

With growing numbers of adults seeking and receiving autism diagnoses, understanding subjective experiences of this process is crucial for sensitive policy and practice. The route to diagnosis can be long and circuitous, yet most evidence on adults’ experiences of diagnosis relies on retrospective reports collected at a single point in time. The current study explores lived experiences of the diagnostic journey through serial qualitative interviews conducted in the weeks before and after adults’ autism diagnosis. Fourteen adults participated in online interviews over videoconferencing or email. Thematic analysis of the data suggested the diagnostic process could be characterised according to three themes. Journey to Self-Discovery identified the pursuit of diagnosis as rooted in a drive for self-understanding, propelled by anticipated benefits that were partially realised, and emotionally complex at all stages. Challenges with Navigating the Diagnostic Process highlighted how the process of acquiring and adjusting to a diagnosis was shaped by issues of resource access, system deficiencies, social inequalities and cognitive overwhelm. Isolation to Advocacy revealed how journeys that began in independent self-initiative evolved over time into community participation and advocacy. Providing original evidence of how lived experiences of adult autism diagnosis evolve across time, the current study offers valuable context for adults pursuing assessment, professionals performing assessments and policy-makers designing adult autism services.

Increasing numbers of people are receiving autism diagnoses in adulthood. Understanding their firsthand experience of diagnosis is crucial for improving supports for adults undergoing autism assessment. This study conducted interviews with adults at two time-points: one interview during the six weeks before their assessment, and a second interview within six weeks after their assessment. Fourteen people volunteered to participate in the study through videocall or email. The interview transcripts were analysed using a process called thematic analysis, with specialist software used to find patterns across people’s experiences. The analysis suggested that adults appreciated the role of diagnosis in helping develop a better understanding of themselves. Nevertheless, people had mixed emotions both leading up to the assessment and after their autism diagnosis. Adults experienced many challenges in arranging and undergoing the autism assessment. However, the process of getting a diagnosis helped many to move from feeling isolated to feeling part of a wider community. These findings will be useful to adults at different stages of the diagnosis process, and for professionals and policy-makers developing adult autism services.

Figures