什么是自闭症倦怠?两个网络平台帖子的主题分析

Jane Mantzalas, Amanda L Richdale, Achini Adikari, Jennifer Lowe, Cheryl Dissanayake
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引用次数: 27

摘要

背景:与普通人群中的成年人相比,自闭症成年人更有可能经历心理健康状况不佳,这可能导致自杀率上升。虽然自闭症社区长期以来一直认为自闭症倦怠是一种重大的心理健康风险,但迄今为止,只有一项研究被发表。早期的研究强调了自闭症倦怠对自闭症成年人的有害影响,迫切需要更好地理解这一现象。方法:为了了解自闭症成年人的生活体验,我们采用数据抓取的方法,从2005年至2019年的两个网络平台中提取有关自闭症倦怠的公开帖子,共获得1127篇。使用反思性专题分析和归纳“自下而上”的方法,我们试图了解自闭症倦怠的病因、症状和影响,以及预防和恢复策略。两位自我报告有过自闭症倦怠经历的自闭症研究人员回顾了这些主题,并提供了见解和反馈。结果:我们在数据中确定了八个主要主题和三个次要主题。(1)普遍缺乏对自闭症的认识。(1.1)歧视和污名化。(2)慢性或复发性疾病(3)对健康和福祉的直接影响。(4)没有生命的生活。塞翁失马焉知非福?(6)自我意识和个人控制影响风险。(6.1)“你需要足够的气球来承受岩石的重量。”(7)掩蔽:做也该死,不做也该死。(8)向专家请教。(8.1)团结起来更强大。最重要的主题是,普遍缺乏对自闭症的认识和耻辱感是自闭症倦怠的根本原因。结论:我们确定了一系列不同但相互关联的因素,这些因素将自闭症倦怠作为一种反复出现的状况,可以直接或间接地影响自闭症患者的功能、心理健康、生活质量和福祉。研究结果表明,提高对自闭症的认识和接受程度可能是预防和恢复倦怠的关键。
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What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms.

Background: Compared with adults in the general population, autistic adults are more likely to experience poor mental health, which can contribute to increased suicidality. While the autistic community has long identified autistic burnout as a significant mental health risk, to date, only one study has been published. Early research has highlighted the harmful impact of autistic burnout among autistic adults and the urgent need to better understand this phenomenon.

Methods: To understand the lived experiences of autistic adults, we used data scraping to extract public posts about autistic burnout from 2 online platforms shared between 2005 and 2019, which yielded 1127 posts. Using reflexive thematic analysis and an inductive "bottom-up" approach, we sought to understand the etiology, symptoms, and impact of autistic burnout, as well as prevention and recovery strategies. Two autistic researchers with self-reported experience of autistic burnout reviewed the themes and provided insight and feedback.

Results: We identified eight primary themes and three subthemes across the data. (1) Systemic, pervasive lack of autism awareness. (1.1) Discrimination and stigma. (2) A chronic or recurrent condition. (3) Direct impact on health and well-being. (4) A life unlived. (5) A blessing in disguise? (6) Self-awareness and personal control influence risk. (6.1) "You need enough balloons to manage the weight of the rocks." (7) Masking: Damned if you do, damned if you don't. (8) Ask the experts. (8.1) Stronger together. The overarching theme was that a pervasive lack of awareness and stigma about autism underlie autistic burnout.

Conclusions: We identified a set of distinct yet interrelated factors that characterize autistic burnout as a recurring condition that can, directly and indirectly, impact autistic people's functioning, mental health, quality of life, and well-being. The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery.

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