When Expectation Meets Experience: A Qualitative Analysis of Serial Interviews with Adults before and after Autism Assessment
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| Title: | When Expectation Meets Experience: A Qualitative Analysis of Serial Interviews with Adults before and after Autism Assessment |
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| Language: | English |
| Authors: | Maria Downey, Juwayriyah Nayyar, Suzanne Guerin (ORCID |
| Source: | Autism: The International Journal of Research and Practice. 2026 30(2):402-411. |
| Availability: | SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com |
| Peer Reviewed: | Y |
| Page Count: | 10 |
| Publication Date: | 2026 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Interviews, Adults, Autism Spectrum Disorders, Clinical Diagnosis, Disability Identification, Self Concept, Discovery Learning, Adjustment (to Environment), Advocacy, Experience |
| DOI: | 10.1177/13623613251384436 |
| ISSN: | 1362-3613 1461-7005 |
| 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 video-conferencing 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. |
| Abstractor: | As Provided |
| Entry Date: | 2026 |
| Accession Number: | EJ1494576 |
| Database: | ERIC |
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| 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 video-conferencing 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. |
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| ISSN: | 1362-3613 1461-7005 |
| DOI: | 10.1177/13623613251384436 |
