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本文引用的文献

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Post-diagnostic support for adults diagnosed with autism in adulthood in the UK: A systematic review with narrative synthesis.英国成年后被诊断为自闭症的成年人的诊断后支持:一项叙述性综合的系统评价
Autism. 2025 Feb;29(2):284-309. doi: 10.1177/13623613241273073. Epub 2024 Sep 10.
2
Is There a Bias Towards Males in the Diagnosis of Autism? A Systematic Review and Meta-Analysis.自闭症诊断中是否存在对男性的偏见?一项系统综述与荟萃分析。
Neuropsychol Rev. 2025 Mar;35(1):153-176. doi: 10.1007/s11065-023-09630-2. Epub 2024 Jan 29.
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Understanding the post-diagnostic support priorities of autistic adults in the United Kingdom: A co-produced modified Delphi study.了解英国自闭症成年人的诊断后支持重点:一项共同制定的改良德尔菲研究。
Autism. 2024 Apr;28(4):854-865. doi: 10.1177/13623613231196805. Epub 2023 Sep 30.
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The Quest for Acceptance: A Blog-Based Study of Autistic Women's Experiences and Well-Being During Autism Identification and Diagnosis.寻求接纳:一项基于博客的关于自闭症女性在自闭症识别与诊断过程中的经历及幸福感的研究。
Autism Adulthood. 2022 Mar 1;4(1):42-51. doi: 10.1089/aut.2021.0016. Epub 2022 Mar 9.
5
Autistic Adults' Experiences of Camouflaging and Its Perceived Impact on Mental Health.自闭症成年人的伪装经历及其对心理健康的感知影响。
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6
'It's being a part of a grand tradition, a grand counter-culture which involves communities': A qualitative investigation of autistic community connectedness.“这是参与一个宏大的传统、一个宏大的反文化的一部分,其中包括社区”:对自闭症社区联系的定性研究。
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7
Autistic Adults' Experiences of Diagnosis Disclosure.自闭症成年人的诊断信息披露体验。
J Autism Dev Disord. 2022 Dec;52(12):5301-5307. doi: 10.1007/s10803-021-05384-z. Epub 2022 Jan 3.
8
Intense connection and love: The experiences of autistic mothers.强烈的联系和爱:自闭症母亲的体验。
Autism. 2021 Oct;25(7):1973-1984. doi: 10.1177/13623613211005987. Epub 2021 Apr 12.
9
"Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew": Defining Autistic Burnout.“耗尽所有内部资源且无人清理残局”:定义自闭症倦怠。
Autism Adulthood. 2020 Jun 1;2(2):132-143. doi: 10.1089/aut.2019.0079. Epub 2020 Jun 10.
10
Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme.支持新识别或诊断的自闭症成年人:自闭症主导项目的初步评估。
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“我会为此后悔吗?”:成年自闭症患者的诊断披露经历

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

作者信息

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

机构信息

University of Sheffield, UK.

Cardiff and Vale University Health Board, UK.

出版信息

Autism. 2025 Aug;29(8):2181-2192. doi: 10.1177/13623613251337504. Epub 2025 May 13.

DOI:10.1177/13623613251337504
PMID:40357870
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12255832/
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.

摘要

越来越多的人在成年后被诊断为自闭症,而针对成年自闭症患者披露其诊断情况的经历进行调查的研究却很少。本研究旨在通过解释现象学分析来了解成年自闭症患者披露诊断情况的经历。12名成年后被诊断为自闭症的患者参与了一对一的半结构化访谈,探讨他们披露诊断情况的经历。采用了质量控制和反思程序以确保严谨性。出现了四个群体体验主题和九个子主题:(1)“披露的作用”(子主题:i. 获得支持;ii. 成为自己;iii. 维权行动及其负担);(2)“开启对话”(子主题:i. 管理披露与反应;ii. 在诊断前就开始披露;iii. 对他人的影响);(3)“先入之见的负面影响”(子主题:i. 怀疑与冒名顶替综合症;ii. 需求未得到满足;iii. 谨慎与回避),以及(4)“接受、开放与找到社群”。披露对自闭症参与者起到了多种作用。自闭症参与者在准备披露诊断情况时所获得的支持存在差异。需要更持续的诊断后支持,以使新诊断的成年自闭症患者考虑披露的实际情况和潜在后果、其益处和挑战。

简要概述

越来越多的人在成年后被诊断为自闭症。然而,很少有研究调查成年自闭症患者“披露”的经历,即告诉他人自己的自闭症诊断情况。本研究的目的是了解成年自闭症患者在成年后被诊断后告诉他人自己患有自闭症的经历。12名成年自闭症患者接受了关于他们披露经历的访谈。访谈表明,自闭症患者披露是为了获得支持、做自己并帮助他人。为了披露,自闭症患者必须决定分享哪些信息以及如何应对他人的反应。一些人在正式诊断之前就开始告诉他人自己可能患有自闭症。披露会对听到披露消息的人产生影响。许多自闭症患者经历了不被相信的情况,导致需求未得到满足。这使他们在未来的披露中更加谨慎。然而,披露也带来了一些积极的经历,自闭症患者感到向其披露的人倾听并接受了他们。这导致他们获得了支持并感觉自己是社群的一部分。建议临床医生和自闭症服务提供者将关于披露的讨论作为诊断后常规支持的一部分。