Evidence map›Paper›PMID 40357870›Full record

ArticleAutism : the international journal of research and practice2025

'Am I gonna regret this?': The experiences of diagnostic disclosure in autistic adults.

Sheena K Au-Yeung, Megan Freeth, Andrew R Thompson

Abstract read
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Article in Autism : the international journal of research and practice, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

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2 · The registry

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

3 authors.

Sheena K Au-YeungUniversity of Sheffield, UK.ORCID 0000-0002-0516-4755
Megan FreethUniversity of Sheffield, UK.ORCID 0000-0003-0534-9095
Andrew R ThompsonCardiff and Vale University Health Board, UK.ORCID 0000-0001-6788-7222

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

An increasing number of people receive autism diagnoses in adulthood, and there are few studies investigating autistic adults' experiences of disclosing their diagnosis. This study sought to understand autistic adults' experiences of diagnostic disclosure using interpretative phenomenological analysis. Twelve autistic adults, who received their diagnosis in adulthood, participated in one-to-one semi-structured interviews exploring their experiences of diagnostic disclosure. Quality control and reflexivity procedures were used to ensure rigour. Four group experiential themes and nine subthemes emerged: (1) 'Functions of Disclosure' (subthemes: i. Accessing Support; ii. Becoming Myself; iii. Activism and its Burden); (2) 'Approaching the Conversation' (Subthemes: i. Managing Disclosure and Reactions; ii. Disclosure Started Pre-Diagnosis; iii. Impact on Others); (3) 'Negative Effects of Preconceptions' (Subthemes: i. Disbelief and Imposter Syndrome; ii. Not Having My Needs Met; iii. Caution and Avoidance), and (4) 'Acceptance, Openness and Finding Community'. Disclosure served multiple functions for the autistic participants. There was variability in the support that autistic participants received in preparation for disclosing the diagnosis. More consistent post-diagnostic support is required to engage newly diagnosed autistic adults in considering the practicalities and potential consequences of disclosure, its benefits and challenges.Lay SummaryAn increasing number of people are receiving diagnoses of autism in adulthood. However, there are few studies investigating autistic adults' experiences of 'disclosure', that is, telling others about their autism diagnosis. The aim of this study is to understand autistic adults' experiences of telling other people that they are autistic after receiving a diagnosis during adulthood. Twelve autistic adults were interviewed about their experiences of disclosure. The interviews showed that autistic people disclose to access support, be themselves and to help others. To disclose, autistic people had to make decisions about what information to share and how to handle people's reactions. Some people started telling others about their potential diagnosis before being formally diagnosed. Disclosure has an impact on people receiving the news of disclosure. Many autistic people experienced not being believed, resulting in unmet needs. This led them to be more careful about future disclosure. However, disclosure also led to some positive experiences, where autistic people felt listened to and accepted by those they disclosed to. This led to receiving support and feeling part of a community. It is recommended that clinicians and autism service providers include discussions about disclosure as part of routine post-diagnostic support.

Indexed as

Autistic DisorderDisclosureEmotionsTruth DisclosureAdultFemaleHumansInterviews as TopicMaleMiddle AgedQualitative ResearchYoung AdultadultsautismdisclosureIPAqualitative

Identifiers

PMID40357870
PMCPMC12255832

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.