Mapping the Autistic Advantage from the Accounts of Adults Diagnosed with Autism: A Qualitative Study
Mapping the Autistic Advantage from the Accounts of Adults Diagnosed with Autism: A Qualitative Study
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从被诊断患有自闭症的成年人的描述中绘制自闭症优势：一项定性研究
DOI：
10.1089/aut.2018.0035
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发表时间：
2019
影响因子：
6.8
通讯作者：
C. Owens
中科院分区：
文献类型：
--
作者：
Ginny Russell;Steven K. Kapp;Daisy Elliott;Chris Elphick;Ruth Gwernan;C. Owens
摘要背景：自闭症与特定的认知能力有关。优势和劣势传统上被认为是二分法。方法：我们进行了28个半结构式访谈自闭症成人。采用了最大变异抽样，以确保支助需求的多样性。我们询问成年人将哪些个人特征归因于他们的自闭症，以及这些特征如何在工作场所，人际关系和其他方面提供帮助。数据分两个阶段收集。使用内容和主题技术的反应进行了分析。结果：超聚焦能力，注意细节，良好的记忆力和创造力是最常见的描述特征。参与者还描述了与社会交往有关的具体品质，例如诚实，忠诚，对动物或其他自闭症患者的同情心。在主题分析中，我们发现，与自闭症相关的特征可以被认为是有利的或不利的，这取决于调节影响。调节影响包括行为发生的社会背景，控制行为的能力，以及特质表达的程度。结论：如果特质不能作为优势或缺陷的单独结构被隔离，那么将自闭症的优势与劣势分开可能是错误的二分法。如果试图将有问题的特征与有利的特征分离开来是考虑不周的，那么将减少自闭症特征作为主要结果指标的干预措施可能会产生影响。总结为什么要进行这项研究？这项研究是为了找出自闭症成年人可以告诉我们关于他们自己的能力。他们告诉我们他们的能力，以及这些能力如何在日常生活中帮助他们：在工作中，在与他人的关系中，在家里。这项研究的目的是什么？讲述一个故事，讲述他们的自闭症成年人认为在日常生活中哪些方面是有益的。研究人员做了什么？研究人员采访了24名患有自闭症的成年人。一些人住在寄宿照料机构，另一些人独自住在租来的公寓里。有些人被采访了两次。大多数人说他们很享受被采访的经历。一旦采访结束，他们就被打印出来，研究人员试图找出他们听到的所有故事的共同主题。他们思考了这些主题，然后对自闭症成年人进行了更多的采访，以检查他们是否在正确的路线上。在讨论之后，他们写了这个故事。研究的结果是什么？高度集中、注意细节和记忆力是自闭症患者认为最能让他们受益的能力。但是接受采访的自闭症成年人说，虽然他们的自闭症特征有时是有帮助的，但在其他时候，他们阻碍了他们的进步。因此，同样的特质在某些情况下可能有用，而在另一些情况下则毫无帮助。例如，过敏症导致一个人享受自然，但在拥挤的街道上很难应付。该研究强调了这种可解释性。这些发现对我们已经知道的有什么补充？以前，人们都知道自闭症患者既有优势，也有挑战，但研究往往把自闭症患者的优势和弱点分开。我们的理论认为，一些特征表现为行为，可能有助于改善或阻碍自闭症患者的进步，但这取决于他们的情况（上下文）。研究中的潜在弱点是什么？因为研究人员使用的是访谈，所以他们没有将任何非语言自闭症患者纳入研究。这些发现将如何帮助自闭症成年人现在或未来？以一种不关注缺陷的方式来思考自闭症可能是有用的，这项研究将帮助我们做到这一点。此外，如果自闭症特征可以给人们带来优势或劣势，那么旨在减少自闭症行为的干预措施可能会在他们寻求帮助解决困难时抑制有利特征。这意味着，自闭症成人和儿童可能会失去有用的能力时，如果他们接受治疗的特点，也可能是有问题的。研究人员希望他们的研究将导致更多关于这些类型的想法的讨论。
Abstract Background: Autism has been associated with specific cognitive strengths. Strengths and weaknesses have traditionally been conceptualized as dichotomous. Methods: We conducted 28 semi-structured interviews with autistic adults. Maximum variation sampling was used to ensure diversity in relation to support needs. We asked which personal traits adults attributed to their autism, and how these have helped in the workplace, in relationships, and beyond. Data were collected in two stages. Responses were analyzed using content and thematic techniques. Results: The ability to hyperfocus, attention to detail, good memory, and creativity were the most frequently described traits. Participants also described specific qualities relating to social interaction, such as honesty, loyalty, and empathy for animals or for other autistic people. In thematic analysis we found that traits associated with autism could be experienced either as advantageous or disadvantageous dependent on moderating influences. Moderating influences included the social context in which behaviors occurred, the ability to control behaviors, and the extent to which traits were expressed. Conclusions: Separating autistic strengths from weaknesses may be a false dichotomy if traits cannot be isolated as separate constructs of strengths or deficits. If attempts to isolate problematic traits from advantageous traits are ill conceived, there may be implications for interventions that have reduction in autistic traits as a primary outcome measure. Lay Summary Why was this study done? The study was done to find out what autistic adults could tell us about their own abilities. They told us about their abilities and how these abilities had helped them in their everyday lives: at work, in their relationships with other people, and at home. What was the purpose of this study? To tell a story about what aspects of their autism adults thought were of benefit, when going about their daily lives. What did the researchers do? The researchers interviewed 24 adults who had an autism diagnosis. Some lived in residential care and others lived alone in rented apartments. Some people were interviewed twice. Most people said they enjoyed the experience of being interviewed. Once the interviews were done, they were typed up and the researchers tried to figure out what were the common themes over all the stories they had heard. They thought about the themes, then did some more interviews with autistic adults to check they were on the right lines. After discussing them, they wrote the story. What were the results of the study? Hyper focus, attention to detail, and the ability to remember were the abilities that autistic people said benefitted them most often. But autistic adults who were interviewed said although their autistic traits were sometimes helpful, at other times they hindered their progress. So the same trait might be useful in some circumstances and unhelpful in other situations. For example, hypersensitivity led one person to enjoy nature, but was difficult to cope with in crowded streets. The study highlights this interchangeability. What do these findings add to what was already known? Before, autistic people were known to have both strengths and challenges, but studies tended to separate autistic strengths and weaknesses as different things. We theorize that some traits are expressed as behaviors that may serve to improve or hinder autistic people's progress, but this depends on their situation (context). What are potential weaknesses in the study? Because the researchers used interviews, they did not include any nonverbal autistic people in the study. How will these findings help autistic adults now or in the future? It could be useful to think about autism in a way that does not focus on deficits and this study will help us to do that. Plus, if an autistic trait can give people an advantage or a disadvantage, interventions aimed at reducing autistic behaviors might risk dampening advantageous traits as they seek to help with difficulties. That means, autistic adults and children might lose useful abilities when and if they are treated for traits that can also be problematic. The researchers hope their study will lead to more discussion about these types of ideas.