探索成年后被诊断为自闭症的生活经历：一项系统综述。
Exploring Lived Experiences of Receiving a Diagnosis of Autism in Adulthood: A Systematic Review.
作者信息
Nayyar Juwayriyah M, Stapleton Alison V, Guerin Suzanne, O'Connor Cliodhna
机构信息
School of Psychology, University College Dublin, Dublin, Ireland.
出版信息
Autism Adulthood. 2025 Feb 5;7(1):1-12. doi: 10.1089/aut.2023.0152. eCollection 2025 Feb.
BACKGROUND
Growing numbers of adults are seeking and receiving autism diagnoses. This systematic review collates, evaluates, and synthesizes evidence on the lived experiences of receiving a diagnosis of autism in adulthood.
METHODS
A keyword-search was performed on six databases, with results systematically screened to identify relevant studies. Data extracted from the studies were analyzed using thematic synthesis.
RESULTS
Initial searches produced 12,785 articles, 26 of which were included and subjected to thematic synthesis. We identified two meta-themes: , related to (1) events that prompted diagnosis, (2) struggling to get a diagnosis, (3) haphazard supports, (4) costs of a late diagnosis, and (5) stigma; and , involving (1) emotional reactions to diagnosis, and (2) forging an autistic identity.
DISCUSSION
While diagnosis can grant understanding, acceptance, and community, autistic adults continue to struggle with stigma, regret, and inadequate support post-diagnosis. Understanding the first-person perspectives of those who have acquired an autism diagnosis in adulthood is vital in developing sensitive and effective assessment and support services for adults.
背景
越来越多的成年人正在寻求并获得自闭症诊断。本系统综述整理、评估并综合了关于成年后获得自闭症诊断的生活经历的证据。
方法
对六个数据库进行了关键词搜索，并对结果进行系统筛选以确定相关研究。使用主题综合法对从研究中提取的数据进行分析。
结果
初步搜索产生了12785篇文章，其中26篇被纳入并进行了主题综合。我们确定了两个元主题：与（1）促使诊断的事件、（2）难以获得诊断、（3）随意的支持、（4）延迟诊断的代价以及（5）污名化相关；以及涉及（1）对诊断的情绪反应和（2）形成自闭症身份认同。
讨论
虽然诊断可以带来理解、接纳和社群，但成年自闭症患者在诊断后仍继续与污名化、遗憾和支持不足作斗争。了解成年后获得自闭症诊断者的第一人称视角对于为成年人开发敏感且有效的评估和支持服务至关重要。
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