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What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms. 什么是自闭症倦怠?两个网络平台帖子的主题分析
Pub Date : 2022-03-01 DOI: 10.1089/aut.2021.0021
Jane Mantzalas, Amanda L Richdale, Achini Adikari, Jennifer Lowe, Cheryl Dissanayake

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.

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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引用次数: 27
The Night I Lost My Freedom, and Got It Back Again. 那一夜,我失去了自由,又重获自由。
Pub Date : 2022-03-01 DOI: 10.1089/aut.2021.0093
Rose Matthews
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引用次数: 1
Experiences of Sensory Overload and Communication Barriers by Autistic Adults in Health Care Settings. 自闭症成人在医疗环境中的感官超负荷和沟通障碍体验。
Pub Date : 2022-03-01 Epub Date: 2022-03-09 DOI: 10.1089/aut.2020.0074
Maria Strömberg, Lina Liman, Peter Bang, Kajsa Igelström

Background: Autistic adults have an elevated risk of many health problems compared with the general population, making health care access extra critical. Unfortunately, autistic people often find health care settings quite aversive, and many medical providers report feeling unsure about how to interact with autistic patients. We aimed at characterizing specific challenges regarding sensory experiences and communicative barriers in health care settings.

Methods: We recruited adults to complete an anonymous online questionnaire on the topic of improving health care experiences for everyone. The questions covered demographics, sensory experiences in medical settings, and communication with health care providers. We quantified the associations between autism diagnosis and experiences of sensory discomfort and communication barriers in health care settings. We also did a qualitative analysis of text responses to questions on how to improve sensory environments and communication with providers.

Results: Swedish adults (62 autistic and 36 nonautistic) participated in the study. The cohort was well educated, and autistic participants received their autism diagnosis late in life (median age 36 years, range 13-57). Compared with nonautistic participants, autistic participants reported greater discomfort with background sound levels in health care settings and felt more misunderstood by health care providers. Thematic analyses showed that auditory stimuli and proximity to other people were particularly bothersome for autistic participants, causing stress or avoidance and affecting the ability to interact with providers. Providers contributed to communication barriers by failing to recognize the need for individualized information, especially when respondents' difficulties were not visible or taken seriously. Participants requested greater clarity and supplementary written information. Providers also misunderstood autistic adults' body language or eye contact patterns, as they interpreted their clients through the lens of neurotypical expectations.

Conclusions: Our results extend previous research by emphasizing sensory aspects of health care settings and suggesting specific and reasonable adaptations. The results also highlight how the provider's implicit expectations of nonverbal communication caused misinterpretations of autistic people who were socially skilled but did not use typical body language. Based on the data, we suggest specific adaptations, many of which may also benefit nonautistic people.

背景:与普通人相比,自闭症成人出现许多健康问题的风险较高,因此获得医疗保健服务尤为重要。不幸的是,自闭症患者常常对医疗环境感到厌恶,许多医疗服务提供者表示不知道如何与自闭症患者交流。我们的目标是了解自闭症患者在医疗环境中感官体验和交流障碍方面的具体挑战:我们招募了成年人填写匿名在线问卷,主题是改善每个人的医疗保健体验。问题涉及人口统计学、医疗环境中的感官体验以及与医疗服务提供者的沟通。我们量化了自闭症诊断与医疗环境中感官不适和沟通障碍之间的关联。我们还对有关如何改善感官环境以及与医疗服务提供者沟通的问题的文本回答进行了定性分析:瑞典成年人(62 名自闭症患者和 36 名非自闭症患者)参与了研究。研究对象受过良好教育,自闭症患者确诊自闭症的时间较晚(中位年龄为 36 岁,年龄范围为 13-57 岁)。与非自闭症患者相比,自闭症患者对医疗环境中的背景声级更感不适,而且更容易被医疗服务提供者误解。主题分析表明,听觉刺激和与他人的接近对自闭症参与者来说尤其令人烦恼,会造成压力或逃避,影响与医疗服务提供者的互动能力。医疗服务提供者没有认识到个体化信息的需求,尤其是当受访者的困难不明显或不被重视时,就会造成沟通障碍。受访者要求提供更清晰的书面补充信息。服务提供者还误解了自闭症成人的肢体语言或眼神接触模式,因为他们是通过神经典型期望的视角来解释他们的客户:我们的研究结果扩展了之前的研究,强调了医疗环境的感官方面,并提出了具体合理的调整建议。研究结果还强调了医疗服务提供者对非语言交流的隐性期望是如何造成对社交能力强但不使用典型肢体语言的自闭症患者的误解的。基于这些数据,我们提出了具体的调整建议,其中许多建议可能也会使非自闭症患者受益。
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引用次数: 0
Adjustment Across the First College Year: A Matched Comparison of Autistic, Attention-Deficit/Hyperactivity Disorder, and Neurotypical Students. 大学一年级的调整:自闭症、注意缺陷/多动障碍和神经正常学生的匹配比较。
Pub Date : 2022-03-01 DOI: 10.1089/aut.2021.0012
Lauren M Baczewski, Maria Pizzano, Connie Kasari, Alexandra Sturm

Background: Although the number of autistic students attending higher education has grown substantially in recent decades, little is known about factors that support their retention and persistence in college. First-year experiences and adaptability to the college environment greatly impact students' decisions to remain enrolled. Despite the importance of first-year adjustment to persistence and retention, few studies have examined the adjustment experiences of first-year autistic students compared to those of matched nonautistic students.

Methods: This study used national survey data to compare the first-year college adjustment experiences of 222 freshmen, including 74 self-identified autistic students, 74 students with attention-deficit/hyperactivity disorder (ADHD), and 74 students without diagnoses (referred to as neurotypical; NT), matched on mental health and demographic characteristics. Students were compared on measures of academic, social, emotional, and institutional adjustment at the end of freshman year. Separate general linear models were used to investigate predictors of positive self-reported first-year adjustment.

Results: Autistic students reported significantly lower levels of social self-confidence than their NT and ADHD peers at the end of freshman year. On all other adjustment domains, students in the autism, ADHD, and NT groups did not significantly differ. Autistic students were not significantly different from their ADHD and NT peers in terms of satisfaction with their college experience or sense of belonging to their institution. Social factors, including social self-confidence and ease of making friends, emerged as important contributors to positive first-year adjustment outcomes across all groups.

Conclusions: When controlling for demographic factors and mental health characteristics entering college, autistic students do not significantly differ from their NT and ADHD peers on several domains of college adjustment. Future studies should further investigate the impact of mental health and student characteristics on college trajectories and outcomes for autistic students.

背景:尽管近几十年来,接受高等教育的自闭症学生数量大幅增长,但人们对支持他们在大学里坚持学习的因素知之甚少。第一年的经历和对大学环境的适应能力极大地影响了学生是否继续入学的决定。尽管第一年的适应对坚持和保留很重要,但很少有研究将一年级自闭症学生的适应经历与匹配的非自闭症学生进行比较。方法:本研究采用全国调查数据,比较222名新生的大学一年级适应经历,其中包括74名自认为有自闭症的学生、74名有注意缺陷/多动障碍(ADHD)的学生和74名没有诊断的学生。在心理健康和人口特征方面相匹配。在大一结束时,学生们在学业、社会、情感和制度适应方面进行了比较。单独的一般线性模型用于调查积极的自我报告第一年调整的预测因子。结果:在大学一年级结束时,自闭症学生的社会自信水平明显低于NT和ADHD学生。在所有其他调整领域,自闭症组、ADHD组和NT组的学生没有显著差异。自闭症学生在对大学生活的满意度和对学校的归属感方面,与ADHD学生和NT学生没有显著差异。社会因素,包括社交自信和交朋友的便利性,在所有群体中都是第一年积极适应结果的重要贡献者。结论:在控制人口统计学因素和进入大学的心理健康特征后,自闭症学生在大学适应的几个领域与NT和ADHD同龄人没有显著差异。未来的研究应进一步探讨心理健康和学生特征对自闭症学生的大学发展轨迹和结果的影响。
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引用次数: 4
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: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)。
Pub Date : 2022-03-01 Epub Date: 2022-03-09 DOI: 10.1089/aut.2021.0016
Miriam Harmens, Felicity Sedgewick, Hannah Hobson

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.

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。
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引用次数: 0
The Strengths and Abilities of Autistic People in the Workplace. 自闭症患者在工作场所的优势和能力。
Pub Date : 2022-03-01 DOI: 10.1089/aut.2021.0037
Rosie Cope, Anna Remington

Introduction: At present, very few autistic people are employed, even though many want to be. It is important that their strengths are identified and valued to help them to find jobs that they enjoy, and that make good use of their skills. The aim of this study was to investigate what strengths autistic people have in the workplace, self-reported by autistic people themselves.

Methods: In this study, autistic participants (n = 66) completed an online questionnaire that asked their views about employment-related strengths that they experienced. We analyzed these data using thematic analysis to identify commonalities across participants' experiences, and areas where they felt that they could perform better than their nonautistic colleagues.

Results: The main strengths identified from these data revealed cognitive advantages such as superior creativity, focus, and memory; increased efficiency and personal qualities such as honesty and dedication; and the ability to offer a unique autism-specific perspective.

Conclusions: Overall, this study suggests that autistic people have many employment-related strengths that should be recognized and valued by autistic people and employers alike. By understanding the strengths that could be associated with autism in the workplace, autistic people may be better able to identify their own strengths in the workplace (with the help of support workers, where necessary). The results should also encourage employers to make an effort to recruit and retain autistic employees, making appropriate adjustments to interview processes and working conditions, and seeking out training when needed.

目前,自闭症患者很少被雇佣,尽管很多人想被雇佣。重要的是,他们的优势被识别和重视,以帮助他们找到他们喜欢的工作,并充分利用他们的技能。这项研究的目的是调查自闭症患者在工作场所的优势,由自闭症患者自己报告。方法:在本研究中,自闭症参与者(n = 66)完成了一份在线问卷,询问他们对自己经历过的与就业相关的优势的看法。我们使用主题分析来分析这些数据,以确定参与者经历的共同点,以及他们认为自己可以比非自闭症同事表现得更好的领域。结果:从这些数据中确定的主要优势揭示了认知优势,如卓越的创造力、注意力和记忆力;提高效率和个人素质,如诚实和敬业;以及提供独特的自闭症视角的能力。结论:总的来说,本研究表明自闭症患者有许多与就业相关的优势,这些优势应该得到自闭症患者和雇主的认可和重视。通过了解工作场所中可能与自闭症相关的优势,自闭症患者可能能够更好地识别自己在工作场所中的优势(在必要的情况下,在支持工作者的帮助下)。研究结果还应鼓励雇主努力招聘和留住自闭症员工,对面试流程和工作条件做出适当调整,并在需要时寻求培训。
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引用次数: 25
Investigating Markers of Rapport in Autistic and Nonautistic Interactions. 研究自闭症和非自闭症互动中融洽关系的标记。
Pub Date : 2022-03-01 DOI: 10.1089/aut.2021.0017
Olivia M Rifai, Sue Fletcher-Watson, Lorena Jiménez-Sánchez, Catherine J Crompton
Background: Autism is considered to entail a social impairment whereby autistic people experience difficulty interpreting others' mental states. However, recent research has shown that nonautistic people also have difficulty understanding the mental states of autistic people. This mismatch of understanding may explain lower rapport in interactions between autistic and nonautistic people. As mental states can be expressed externally through socially normed signals, it is important to investigate the role of such signals in autistic, nonautistic, and mixed interactions. This study explores variability in two social signals between autistic, nonautistic, and mixed interactions, and how their use may affect rapport within interactions. Methods: Videos from a previous study of autistic, nonautistic, and mixed pair interactions in a diffusion chain context in which participants were aware of others' diagnostic status were video coded for mutual gaze and backchanneling as candidate indicators of interactional rapport. Results: Although use of mutual gaze and backchanneling was lower in mixed pairs than in nonautistic pairs, corresponding to lower ratings of interactional rapport, less backchanneling in autistic pairs of both nonverbal and verbal subtypes corresponded to higher ratings of rapport. Conclusions: We observed differences in the use of candidate rapport markers between autistic, mixed, and nonautistic interactions, which did not map onto patterns of rapport scores, suggesting differences in reliance on these cues between autistic and nonautistic people. These results suggest that visible markers of rapport may vary by neurotype or pairing and give clues to inform future investigations of autistic interaction.
背景:自闭症被认为是一种社会障碍,自闭症患者难以理解他人的精神状态。然而,最近的研究表明,非自闭症患者也很难理解自闭症患者的精神状态。这种理解上的不匹配可能解释了自闭症患者和非自闭症患者之间互动的融洽程度较低。由于心理状态可以通过社会规范信号对外表达,因此研究这些信号在自闭症、非自闭症和混合互动中的作用是很重要的。本研究探讨了自闭症、非自闭症和混合互动之间两种社会信号的可变性,以及它们的使用如何影响互动中的融洽关系。方法:对先前研究的自闭症、非自闭症和混合配对在扩散链背景下的互动进行视频编码,其中参与者意识到他人的诊断状态,并将其作为相互凝视和反向通道的候选互动关系指标。结果:虽然在混合组中,相互凝视和反向通道的使用比非自闭症组低,对应于互动融洽的评分较低,但在非语言和语言亚型的自闭症组中,反向通道较少对应于更高的融洽评分。结论:我们观察到在自闭症、混合和非自闭症互动中,候选关系标记的使用存在差异,而这些差异并没有映射到关系得分的模式上,这表明自闭症和非自闭症人群对这些线索的依赖存在差异。这些结果表明,融洽关系的可见标记可能因神经类型或配对而异,并为自闭症互动的未来研究提供线索。
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引用次数: 16
Brief Report: Does Autistic Community Connectedness Moderate the Relationship Between Masking and Wellbeing? 简要报告:自闭症社区联系是否调节掩蔽与幸福感之间的关系?
Pub Date : 2021-12-07 DOI: 10.31234/osf.io/p6bt5
E. Cage, Rebekah Cranney, M. Botha
BackgroundMasking involves blending in or covering a stigmatized identity, to avoid discrimination and to "pass" within society. Autistic people often report masking, both intentionally and unintentionally, to get by in social situations. Autistic people who report high rates of masking also tend to experience poorer mental health. It is important we understand whether there are variables that can protect against the negative effects of masking. One such potential variable is autistic community connectedness (ACC)-being part of and belonging to the autistic community. Past research suggests there are benefits for autistic people socially connecting with other autistic people. We investigated whether ACC could moderate the relationship between masking and wellbeing.MethodsOne hundred ninety-six autistic people completed an online survey including measures of ACC, masking, and mental wellbeing. We used moderation analysis to test whether ACC acted as a buffer between masking and wellbeing.ResultsHigher self-reported masking related to poorer mental wellbeing. Higher ACC related to more positive wellbeing. Higher ACC correlated with more masking. However, there was no interaction effect, and ACC did not moderate the relationship between masking and wellbeing.ConclusionsAlthough ACC did relate to more positive mental wellbeing overall, it did not moderate the negative relationship between masking and wellbeing. If masking relates to the prejudice faced by autistic people, those with greater attachment to the autistic community may also be more aware of discrimination against their community. Furthermore, autistic people who are more connected might experience a higher salience of masking when moving between autistic and nonautistic settings. Tackling prejudice toward autistic people is critical in helping to reduce the negative effects associated with masking, and we must endeavor to change perceptions and increase inclusion of autistic people.
掩蔽包括混入或掩盖被污名化的身份,以避免歧视并在社会中“过关”。自闭症患者经常报告有意或无意地掩饰自己,以便在社交场合中生存。据报道,伪装率高的自闭症患者心理健康状况也往往较差。重要的是我们要了解是否有变量可以防止屏蔽的负面影响。其中一个潜在的变量是自闭症社区连通性(ACC)——成为自闭症社区的一部分并属于自闭症社区。过去的研究表明,自闭症患者与其他自闭症患者的社交联系是有好处的。我们调查了ACC是否可以调节掩蔽和幸福感之间的关系。方法196名自闭症患者完成了一项在线调查,包括对ACC、掩蔽和心理健康的测量。我们使用适度分析来测试ACC是否在掩蔽和幸福之间起到缓冲作用。结果较高的自我报告掩蔽与较差的心理健康有关。ACC越高,幸福感越高。较高的ACC与更多的掩蔽相关。然而,没有交互作用,ACC并没有调节掩蔽和幸福感之间的关系。结论虽然ACC总体上确实与更积极的心理健康有关,但它并不能缓和掩蔽与健康之间的负相关关系。如果掩蔽与自闭症患者所面临的偏见有关,那么那些与自闭症群体有更大联系的人也可能更容易意识到对他们社区的歧视。此外,在自闭症和非自闭症环境之间移动时,联系更紧密的自闭症患者可能会经历更高程度的掩蔽。消除对自闭症患者的偏见对于帮助减少与掩饰相关的负面影响至关重要,我们必须努力改变人们的看法,增加对自闭症患者的包容。
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引用次数: 5
Autistic Adults' Experiences of Camouflaging and Its Perceived Impact on Mental Health. 自闭症成人的伪装经历及其对心理健康的影响。
Pub Date : 2021-12-01 Epub Date: 2021-12-07 DOI: 10.1089/aut.2020.0071
Louise Bradley, Rebecca Shaw, Simon Baron-Cohen, Sarah Cassidy

Background: Camouflaging (also referred to as "masking") is a commonly reported strategy used by autistic adults in everyday life to help them cope in social situations. Autistic adults report that camouflaging can have a devastating effect on mental health and well-being, yet little is known about the lived experiences of camouflaging and its impact.

Methods: We designed an online survey in partnership with autistic adults, to explore the experiences of camouflaging and its impact on mental health. Participants self-reported the lifetime experience of camouflaging, where they camouflaged the frequency and length of time spent camouflaging. Four open questions allowed participants to elaborate their answers to the closed questions on frequency and length of time, and subsequently any positive and negative aspects of their experience of camouflaging. Two hundred seventy-seven autistic adults who self-reported a diagnosis of an autism spectrum condition (128 female, 78 male) or self-identified as autistic (56 female, 15 male) were included in the analysis of qualitative responses to the open-ended questions.

Findings: We thematically analyzed participant answers from the open questions. Three main themes emerged. First, "dangers of camouflaging" described how the amount of time spent camouflaging led to exhaustion, isolation, poor mental and physical health, loss of identity and acceptance of self, others' unreal perceptions and expectations, and delayed diagnosis. Second, "positive aspects of camouflaging" included greater access to social spaces, and protection from harm. Camouflaging was, therefore, seen as necessary to survive in a world designed for the neurotypical majority. Third, autistic adults described being diagnosed and accepted for who they are as reasons for "why I don't need to camouflage like I used to."

Conclusions: Time spent camouflaging is what seems to be most damaging for the participants' mental health. The main reason reported for needing to spend so much time camouflaging is society's lack of awareness and acceptance of autism.

Lay summary: Why is this study being done?: Many autistic adults report that they need to camouflage their autistic behaviors to help them "fit in" and cope in social situations with non-autistic people. This is because society is not as aware and accepting of autistic people as it needs to be. We also know that for most autistic adults camouflaging is exhausting and damaging for their mental health. This study is important, because researchers have not studied camouflaging enough to know what it is like for autistic adults to camouflage in their everyday lives and to understand the impact that camouflaging has on their mental health.What was the purpose of this study?: We wanted to ask autistic adults about their positive and negative experiences of camouflaging. This is imp

背景:伪装(又称 "掩饰")是自闭症成人在日常生活中常用的一种策略,以帮助他们应对社交场合。自闭症成年人表示,伪装会对心理健康和幸福感造成破坏性影响,但人们对伪装的生活经历及其影响却知之甚少:我们与自闭症成年人合作设计了一项在线调查,以探索伪装的经历及其对心理健康的影响。参与者自我报告了一生中的伪装经历、伪装的地点、伪装的频率和时间长度。四个开放式问题允许参与者详细阐述他们对有关伪装频率和时间长度的封闭式问题的回答,以及伪装经历的积极和消极方面。对开放式问题的定性分析包括 277 名自闭症成年人,他们自我报告诊断患有自闭症谱系障碍(女性 128 人,男性 78 人)或自我认同为自闭症患者(女性 56 人,男性 15 人):我们对参与者对开放式问题的回答进行了专题分析。出现了三大主题。首先,"伪装的危险 "描述了伪装所花费的时间是如何导致疲惫、孤独、身心健康状况不佳、丧失对自我的认同和接受、他人不真实的看法和期望以及诊断延迟的。其次,"伪装的积极方面 "包括有更多机会进入社会空间,以及免受伤害。因此,伪装被认为是在为大多数神经典型设计的世界中生存的必要条件。第三,成年自闭症患者将被诊断出患有自闭症并被接受作为 "为什么我不需要像以前那样伪装 "的原因:伪装所花费的时间似乎对参与者的心理健康损害最大。需要花大量时间伪装的主要原因是社会对自闭症缺乏认识和接受:许多患有自闭症的成年人表示,他们需要伪装自己的自闭症行为,以帮助他们 "融入 "社会,并应对与非自闭症患者的社交场合。这是因为社会对自闭症患者的认识和接纳程度不够。我们还知道,对于大多数成年自闭症患者来说,伪装会让他们疲惫不堪,损害他们的心理健康。这项研究非常重要,因为研究人员对伪装的研究还不够,无法了解自闭症成年人在日常生活中伪装的情况,也无法了解伪装对他们心理健康的影响:我们希望向成年自闭症患者了解他们在伪装方面的积极和消极经历。这一点很重要,因为它将帮助专业人员更好地理解自闭症成人伪装的原因,并更好地支持自闭症成人的心理健康需求。加深了解也有助于社会更好地认识和接受自闭症。如果这样的话,成年自闭症患者就不需要再伪装了。无需过多伪装也有助于预防和减少成年自闭症患者的心理健康问题:我们请有临床诊断和自我认同为自闭症患者的成年自闭症患者完成一份在线调查。调查询问了有关心理健康、自伤、自杀想法和自杀行为的问题。调查的一部分是关于伪装的问题。如果研究参与者说他们伪装或掩盖自己的自闭症特征以应对社交场合,他们就会被问及何时和为何伪装,以及伪装的积极和消极后果:我们发现,自闭症患者确认,他们之所以伪装,是因为社会对自闭症缺乏认识和接受。我们还发现,男性和女性自闭症患者都会伪装。虽然一些成年自闭症患者说 "每个人 "都会伪装,但他们认为自闭症患者在日常生活中伪装的时间比非自闭症患者多得多。花大量时间伪装对成年自闭症患者的心理健康伤害最大。虽然大多数自闭症成人认为伪装会损害他们的心理健康,但也有一些人认为伪装对他们也有帮助:我们的研究结果表明,减少伪装的压力非常重要。这有助于防止自闭症患者出现高发的心理健康问题。我们的研究结果表明,如果社会能更多地了解和接纳自闭症患者,就能实现这一目标。我们的研究结果还表明,减少伪装的压力可以使社会中的每个人受益。
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引用次数: 0
Advancing the Personalization of Assessment and Intervention in Autistic Adolescents and Young Adults by Targeting Self-Determination and Executive Processes. 以自我决定和执行过程为目标,推进对自闭症青少年的个性化评估和干预。
Pub Date : 2021-12-01 Epub Date: 2021-12-07 DOI: 10.1089/aut.2021.0010
Karrie A Shogren, Matthew W Mosconi, Sheida K Raley, Evan E Dean, Ben Edwards, Anna Wallisch, Brian Boyd, Jessie C Kiblen

As autistic adolescents and young adults navigate the transition to adulthood, there is a need to partner with them to identify strengths and needed supports to enable goal-directed actions. This article conceptually integrates research on self-determination, defined by Causal Agency Theory, and executive processes in autism to provide direction for future research and practice. We describe how integrating research on self-determination and executive processes could enable autistic adolescents and young adults to be engaged in the process of assessing executive processes and self-determination. We discuss how this can better inform personalization of supports for self-determination interventions by focusing on support needs related to executive processes, including inhibitory control and cognitive flexibility, from a strengths-based perspective. We discuss how this can enable self-determination interventions that promote outcomes aligned with the values of the autistic community.

在自闭症青少年和年轻成人向成年过渡的过程中,有必要与他们合作,找出他们的长处和所需的支持,使他们能够以目标为导向采取行动。本文从概念上整合了因果代理理论所定义的自我决定和自闭症执行过程的研究,为未来的研究和实践提供了方向。我们描述了如何通过整合自我决定和执行过程的研究,让自闭症青少年和年轻成年人参与到评估执行过程和自我决定的过程中。我们讨论了如何从基于优势的角度出发,关注与执行过程(包括抑制控制和认知灵活性)相关的支持需求,从而更好地为自决干预提供个性化支持。我们还讨论了这将如何使自决干预措施能够促进与自闭症群体价值观相一致的结果。
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引用次数: 0
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Autism in adulthood : challenges and management
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