寻求接纳:基于博客的自闭症女性在自闭症鉴定和诊断过程中的经历和幸福感研究》(A blog-based Study of Autistic Women's Experiences and Well-Being During Autism Identification and Diagnosis)。

Miriam Harmens, Felicity Sedgewick, Hannah Hobson
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引用次数: 0

摘要

背景:尽管研究发现女性自闭症患者的诊断率较低,自闭症女性的幸福指数也低于男性,但对于自闭症女性在自我认同或诊断方面的经历,以及她们认为这些经历会如何影响她们的心理健康,我们却知之甚少:我们探讨了自闭症女性认识和了解自己是自闭症患者的经历。我们从自闭症女性撰写的有关诊断或自我认同经历的博客中收集数据。我们尤其关注幸福感,以及幸福感如何促进、影响自闭症的识别和诊断过程,并与之相互作用。我们采用主题分析法探讨并记录了 20 个博客网站(代表 23 位自闭症女性的观点)的博客中描述的经历:接受是一个核心问题。我们提出了自我理解和自我接受、被他人(包括同伴、临床医生和自闭症社区中的其他人)理解和接受,以及因试图被接受和理解而产生的疲惫感等主题。这些问题既出现在诊断过程中,也出现在获得正式诊断之后:诊断和鉴定可能会对自闭症女性的福祉产生积极和消极的影响,女性通常将诊断后的困难归因于面对男性对自闭症的刻板印象。我们探讨了我们的研究结果对临床医生、研究人员以及自闭症女性工作者的影响。
本文章由计算机程序翻译,如有差异,请以英文原文为准。

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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.

Background: Although studies have found that autism is underdiagnosed in women and that autistic women have poorer well-being outcomes than men, less is known about autistic women's experiences with self-identification or diagnosis or how they feel such experiences affect their mental health.

Methods: We explored autistic women's experiences of coming to recognize and understand themselves as autistic. We used data collected from blogs written by autistic women about their diagnostic or self-identification experiences. We were particularly interested in well-being, and how this contributed to, was affected by, and interacted with the identification and diagnostic process. We used thematic analysis to explore and document experiences described in blogs from 20 blogsites (representing the views of 23 autistic women).

Results: Acceptance was a central issue. We developed themes of self-understanding and self-acceptance, being understood and accepted by others (including peers, clinicians, and others in the autism community), and the exhaustion resulting from trying to be accepted and be understood. These issues arose both when going through the diagnostic process, and after receiving a formal diagnosis.

Conclusions: Diagnosis and identification may have both positive and negative effects on autistic women's well-being, with women often describing difficulties after diagnosis as stemming from facing male stereotypes of autism. We consider the implications of our findings for clinicians, researchers, and those who work with autistic women.

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