Autistic Adults' Experiences of Camouflaging and Its Perceived Impact on Mental Health.
Autistic Adults' Experiences of Camouflaging and Its Perceived Impact on Mental Health.
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DOI：
10.1089/aut.2020.0071
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发表时间：
2021-12-01
期刊：
影响因子：
--
通讯作者：
Cassidy S
中科院分区：
文献类型：
--
作者：
Bradley L;Shaw R;Baron-Cohen S;Cassidy S
背景：伪装(又称伪装)是自闭症成年人在日常生活中常用的一种策略，以帮助他们应对社交情况。患有自闭症的成年人报告说，伪装会对心理健康和幸福感产生毁灭性的影响，但人们对伪装的真实经历及其影响知之甚少。方法：我们与自闭症成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。参与者自我报告了他们一生中伪装的经历，他们伪装了伪装的频率和时间长度。四个公开问题允许参与者详细说明他们对封闭问题的回答，包括频率和时间长度，以及随后他们伪装经历的任何积极和消极方面。277名自闭症成年人(128名女性，78名男性)或自我确认为自闭症(56名女性，15名男性)的自闭症成年人被纳入对开放式问题的定性回答分析中。研究结果：我们从公开问题中对参与者的回答进行了主题分析。出现了三个主要主题。首先，“伪装的危险”描述了伪装的时间长短如何导致疲惫、孤立、心理和身体健康状况不佳、失去认同感和对自我的接受、他人不真实的感知和期望，以及延迟诊断。第二，“伪装的积极方面”包括更多地进入社会空间，以及保护免受伤害。因此，伪装被认为是在一个为神经型大多数人设计的世界中生存所必需的。第三，自闭症成年人将被诊断和接受自己的身份描述为“为什么我不需要像过去那样伪装”的理由。结论：伪装的时间似乎对参与者的心理健康损害最大。据报道，需要花费这么多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报告说，他们需要伪装自己的自闭症行为，以帮助他们与非自闭症患者“融入”并应对社交场合。这是因为社会没有意识到和接受自闭症患者，这是它需要的。我们也知道，对于大多数患有自闭症的成年人来说，伪装是令人精疲力竭的，并对他们的心理健康造成损害。这项研究很重要，因为研究人员还没有对伪装进行足够的研究，无法了解自闭症成年人在日常生活中伪装是什么样子，也没有了解伪装对他们的心理健康的影响。我们想询问患有自闭症的成年人关于伪装的积极和消极经历。这一点很重要，因为它将帮助专业人士更好地理解为什么自闭症成年人会伪装，并更好地支持自闭症成年人的心理健康需求。这种增加的理解也可能有助于社会更多地意识到和接受自闭症。如果发生这种情况，患有自闭症的成年人将不需要伪装那么多。不需要太多的伪装也可以帮助预防和减少自闭症成年人的心理健康问题。我们要求有临床诊断的自闭症成年人和那些自我认定为自闭症的人完成一项在线调查。这项调查询问了一些关于心理健康、自我伤害、自杀念头和自杀行为的问题。调查的一部分询问了有关伪装的问题。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情况，那么他们将被问及何时和为什么伪装，以及伪装的积极和消极后果。我们发现，自闭症患者证实，他们伪装是因为社会对自闭症缺乏认识和接受。我们还发现，自闭症男性和女性都会伪装。虽然一些患有自闭症的成年人表示，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要多得多。花费大量时间伪装对自闭症成年人的心理健康最具破坏性。虽然大多数患有自闭症的成年人认为伪装对他们的心理健康有害，但也有一些人认为这对他们也有帮助。我们的结果表明，降低伪装压力是很重要的。这可能有助于防止自闭症患者出现高比例的心理健康问题。我们的结果表明，如果更广泛的社会变得更了解和接受自闭症患者，这一点是可以实现的。我们的结果还表明，减少伪装的压力可能会让社会上的每个人都受益。
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. 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. We wanted to ask autistic adults about their positive and negative experiences of camouflaging. This is important because it will help professionals better understand why autistic adults camouflage, and better support the mental health needs of autistic adults. This increased understanding may also help society become more aware and accepting of autism. If this happens, autistic adults will not need to camouflage as much. Not having to camouflage as much could also help prevent and reduce mental health problems in autistic adults. We asked autistic adults with a clinical diagnosis and those who self-identify as autistic to complete an online survey. The survey asked questions about mental health, self-injury, suicidal thoughts, and suicidal behaviors. One part of the survey asked questions about camouflaging. If research participants said they camouflaged or masked their autistic characteristics to cope with social situations, they would then be asked about when and why they camouflage, and about the positive and negative consequences of camouflaging. We found that autistic people confirmed that they camouflage because of a lack of awareness and acceptance of autism in society. We also found that both autistic males and females camouflage. Although some autistic adults said that “everyone” camouflages, they thought that autistic people spent much more time than non-autistic people camouflaging in their everyday lives. Spending lots of time camouflaging was what was most damaging for autistic adults' mental health. Although most autistic adults thought that camouflaging was damaging to their mental health, some thought that it helped them too. Our results suggest that it is important to reduce pressure to camouflage. This could help prevent high rates of mental health problems in autistic people. Our results suggest that this can be achieved if wider society becomes more aware and accepting of autistic people. Our results also suggest that reducing pressure to camouflage could benefit everyone in society.
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