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'Who, When, How to Share': Pilot study of a new disclosure decision-making programme for autistic adults. 谁、何时、如何分享":针对自闭症成人的新披露决策方案试点研究。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2024-02-10 DOI: 10.1177/13623613231221685
Emeline Han, Katrina Scior, Kana Grace, Eric Heath, Simone Dufresne, Laura Crane

Lay abstract: 'Who, When, How to Share' is a new programme that aims to support autistic adults in making decisions around sharing their autistic identity with others. The programme involves working through a self-help guide independently over 3 weeks with optional peer support. We wanted to find out if autistic adults would join the programme and find it useful. Thirty-two autistic adults took part in the programme and 19 of them completed it. Most participants who completed the programme liked the programme and found it helpful, but some felt that they needed more time and support to complete it. They suggested that the programme would be more accessible if it was more interactive, such as including videos and other ways to gain feedback on their progress. Surveys filled in by participants before and after the programme suggested that they became more confident and less stressed about sharing their autistic identity with others, but some felt they still needed to build more confidence in order to handle negative attitudes from others. More work is needed to improve and test the programme further.

内容提要:"与谁分享、何时分享、如何分享 "是一项新计划,旨在帮助患有自闭症的成年人做出与他人分享其自闭症身份的决定。该计划包括在 3 周内独立完成自助指南,并可选择同伴支持。我们希望了解成年自闭症患者是否愿意参加该计划,并认为该计划有用。32 名成年自闭症患者参加了该计划,其中 19 人完成了计划。大多数完成计划的参与者都喜欢该计划并认为它很有帮助,但有些人认为他们需要更多的时间和支持来完成计划。他们建议,如果该计划能有更多的互动,比如包括视频和其他获得进展反馈的方式,就会更容易接受。参与者在课程前后填写的调查表显示,他们在与他人分享自己的自闭症身份时变得更加自信,压力也更小了,但有些人认为他们仍然需要建立更多的自信,以应对他人的负面态度。还需要做更多的工作来进一步改进和测试该计划。
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引用次数: 0
Problems with "problem behavior": A secondary systematic review of intervention research on transition-age autistic youth. 问题行为 "的问题:对过渡年龄自闭症青少年干预研究的二次系统性回顾。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2024-02-22 DOI: 10.1177/13623613241229159
Kristen Bottema-Beutel, Rachael McKinnon, Sarah Mohiuddin, Shannon Crowley LaPoint, So Yoon Kim

Lay abstract: In a previous study, we looked at research done on strategies to support autistic people who were between 14 and 22 years old. For this study, we looked at all of the studies in our previous study that tried to decrease or stop autistic people from doing certain things-many researchers call these things "problem behavior." There were 48 studies that tried to reduce problem behavior, and most of them used strategies like prompting and reinforcement to try get autistic people to change their behavior. We found many things wrong with these studies. Most of them did not define the group of behaviors they were trying to stop autistic people from doing. None of the studies looked at whether any side effects happened when they tried the strategy they were studying. Also, most of the studies tried to stop autistic people from doing behaviors that probably were not harmful, like stereotypic behavior. Most of the studies did not say how they decided that the behaviors they tried to stop were a problem for the autistic people in the study, and most studies did not try to figure out why the autistic people in the study did the behaviors the researchers were trying to stop them from doing.

内容提要:在之前的一项研究中,我们考察了有关支持 14 至 22 岁自闭症患者的策略的研究。在这项研究中,我们考察了上一项研究中所有试图减少或阻止自闭症患者做某些事情的研究--许多研究人员称这些事情为 "问题行为"。共有 48 项研究试图减少问题行为,其中大部分都采用了提示和强化等策略,试图让自闭症患者改变他们的行为。我们发现这些研究存在很多问题。大多数研究都没有界定他们试图阻止自闭症患者做出的行为类别。没有一项研究关注在尝试所研究的策略时是否会产生副作用。此外,大多数研究试图阻止自闭症患者做出可能无害的行为,如刻板行为。大多数研究没有说明他们是如何判定他们试图阻止的行为对研究中的自闭症患者是个问题的,大多数研究也没有试图找出为什么研究中的自闭症患者会做出研究人员试图阻止他们做出的行为。
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引用次数: 0
Evaluating measures to assess loneliness in autistic adults. 评估自闭症成人孤独感的措施。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2023-12-25 DOI: 10.1177/13623613231217056
Kana Grace, Anna Remington, Jade Davies, Laura Crane

Lay abstract: There has been increasing interest in research on loneliness in autistic adults. Much of this research has involved giving autistic adults widely-used questionnaires that are thought to measure how lonely people are. However, these questionnaires have been developed for the general public. We do not know whether these questionnaires accurately measure how lonely autistic adults are. We asked 203 autistic adults to complete an online survey that included two widely-used loneliness questionnaires: (1) the University of California, Los Angeles (UCLA) Loneliness Scale Version 3 and (2) the Social and Emotional Loneliness Scale for Adults (SELSA). We also asked participants to rate how lonely they were from 1 (often/always) to 5 (never). Participants were then asked to give their views on the questionnaires (e.g. what they thought was good, and what they thought was not so good about them). We found that the scores on the UCLA scale and the SELSA aligned with participants' ratings of how lonely they were, which suggests that these two questionnaires accurately measure loneliness in autistic people. However, our participants also identified several ways to improve the questionnaires. This included (1) better distinguishing the characteristics/experiences of loneliness from those of being autistic; (2) better reflecting how loneliness may change at different times and in different contexts and (3) making the phrasing of the questions clearer. Overall, our autistic participants tended to prefer the UCLA scale to the SELSA. Therefore, we present some recommendations about how the UCLA scale could be changed to be more suitable for autistic people.

内容提要:人们对自闭症成人孤独感的研究越来越感兴趣。这项研究的大部分内容是向自闭症成人发放广泛使用的调查问卷,这些问卷被认为可以衡量人们的孤独程度。然而,这些问卷是为普通大众开发的。我们不知道这些问卷是否能准确测量自闭症成年人的孤独程度。我们要求 203 名成年自闭症患者完成一项在线调查,其中包括两份广泛使用的孤独感问卷:(1)加州大学洛杉矶分校(UCLA)孤独感量表第 3 版;(2)成年人社交和情感孤独感量表(SELSA)。我们还要求参与者对自己的孤独程度进行评分,从 1(经常/总是)到 5(从不)。然后,我们还要求参与者就问卷发表意见(例如,他们认为问卷中哪些地方是好的,哪些地方是不好的)。我们发现,加州大学洛杉矶分校量表和 SELSA 的得分与参与者对自己孤独程度的评价一致,这表明这两份问卷能够准确测量自闭症患者的孤独感。不过,我们的参与者也提出了几种改进问卷的方法。这包括:(1)更好地区分孤独的特征/体验与自闭症的特征/体验;(2)更好地反映孤独感在不同时间和不同环境下的变化;(3)使问题的措辞更加清晰。总的来说,与 SELSA 相比,我们的自闭症参与者更倾向于使用 UCLA 量表。因此,我们就如何修改 UCLA 量表使其更适合自闭症患者提出了一些建议。
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引用次数: 0
Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood. 诊断是新的开始,而不是结束:关于成年后如何应对自闭症诊断的参与式摄影选题研究。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2024-01-17 DOI: 10.1177/13623613231220418
Eilidh Cage, Monique Botha, Lynsey McDevitt, Karis N King, Liz Biscoe, Kirsty Tucker, Amy Pearson

Lay abstract: Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone's identity and neurodivergence.

内容提要:很多人在成年后都会寻求自闭症的诊断,他们经常说,被诊断出来会积极地改变生活,但获得诊断的经历可能是困难的。我们常常听不到目前正在寻求诊断的人的意见,也没有与他们谈论诊断与他们的身份之间的关系。在我们的研究中,我们调查了英国目前正在寻求自闭症诊断的人们的经历。我们采用了参与式方法,让六位正在寻求诊断的人作为合作者参与研究。他们参加了四次不同的会议,帮助制定研究计划,参加有关其经历的访谈,并帮助分析所有访谈的模式。在访谈过程中,我们还使用了一种名为 "照片选择 "的方法,让他们用照片来表达自己在诊断过程中的感受。我们发现了四个共同的主题:(1)每个人在寻求诊断之前都经历过某种形式的危机;(2)当他们意识到自己是自闭症患者时,他们觉得自己被看见了;(3)诊断过程和标准不起作用,他们觉得自己被临床医生评判了;(4)诊断后可获得的支持有限。在另一场会议上,我们确定了需要采取的行动,这些行动对政策和实践都有影响,包括改进自闭症患者的诊断程序和标准,让全科医生和临床医生等人更多地倾听自闭症患者的心声,诊断服务需要更加灵活,并理解患者身份和神经差异的不同方面。
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引用次数: 0
No association between alexithymia and emotion recognition or theory of mind in a sample of adolescents enhanced for autistic traits. 在一个自闭症特征增强的青少年样本中,lexithymia 与情绪识别或心智理论之间没有关联。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2024-01-19 DOI: 10.1177/13623613231221928
Georgianna Moraitopoulou, Hannah Pickard, Emily Simonoff, Andrew Pickles, Rachael Bedford, Virginia Carter Leno

Lay abstract: Alexithymia is a sub-clinical condition characterised by difficulties identifying and describing one's own emotions, which is found in many, but not all autistic people. The alexithymia hypothesis suggests that certain aspects of socio-cognitive functioning typically attributed to autism, namely difficulties in emotion recognition, might be better explained by often co-occurring alexithymia. It is important to understand what is specific to autism and what is due to other co-occurring characteristics to develop appropriate support for autistic people. However, most research on this topic has been conducted in adults, which limits our knowledge about the relevance of this theory to younger autistic populations. This study tested whether difficulties in emotion recognition and theory of mind traditionally associated with autism might be better explained by alexithymia in a sample of adolescents with and without a diagnosis of autism. Results found that difficulties in emotion recognition and theory of mind were both associated with autistic traits, and this was not accounted for by individual differences in levels of alexithymia. This research suggests that more work is needed to understand the applicability of the alexithymia hypothesis in younger populations, but that at least in adolescents and when using parent-report measures, alexithymia may not account for emotion recognition or theory of mind difficulties associated with autistic traits.

内容提要:情感障碍是一种亚临床症状,其特点是难以识别和描述自己的情绪,许多自闭症患者都有这种症状,但并非所有自闭症患者都有这种症状。情感障碍假说认为,通常归因于自闭症的社会认知功能的某些方面,即情感识别方面的困难,可以通过经常并发的情感障碍得到更好的解释。要为自闭症患者提供适当的支持,了解哪些因素是自闭症特有的,哪些因素是其他共存特征造成的是非常重要的。然而,有关这一主题的大多数研究都是在成年人身上进行的,这限制了我们对这一理论与年轻自闭症人群相关性的了解。本研究测试了传统上与自闭症相关的情感识别和心智理论方面的困难是否可以更好地用自闭症来解释。研究结果发现,情感识别和心智理论方面的困难都与自闭症特征有关,而这并不能用情感淡漠程度的个体差异来解释。这项研究表明,还需要做更多的工作来了解情感缺失假说在年轻人群中的适用性,但至少在青少年中,如果使用家长报告的测量方法,情感缺失可能无法解释与自闭症特征相关的情感识别或心智理论困难。
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引用次数: 0
First things first: An exploration of the effects of psychoeducation for older autistic adults. 万事开头难:探讨对老年自闭症患者进行心理教育的效果。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2024-01-10 DOI: 10.1177/13623613231219745
Maartje Lenders, Machteld A Ouwens, Rosalien M H J Wilting, Arjan C Videler

Lay abstract: After receiving an autism diagnosis, psychoeducation (i.e. information regarding autism) is a first intervention. We adjusted a psychoeducation program that was originally developed by the Dutch Association for Autism for older adults to enhance its feasibility and efficacy in later life. We expected that participants would report an increase in knowledge and acceptance of the diagnosis and that people close to them would also observe this. Indeed, we found this and participants and those close to them agreed on this. Furthermore, we found some evidence that older autistic adults were better at coping with their autism. We found no positive intervention effects on psychological distress. The feedback of participants and informants about the psychoeducation program was largely positive. In future research, we advise using larger group samples and larger time scales and we also advise to further adjust the program to the needs and requirements of older adults, and to help older autistic adults to construct a new narrative of themselves, and the life they have lived, in the light of the recent autism diagnosis.

内容提要:在接受自闭症诊断后,心理教育(即有关自闭症的信息)是第一项干预措施。我们对荷兰自闭症协会最初为老年人开发的心理教育项目进行了调整,以提高其在晚年生活中的可行性和有效性。我们预计,参与者会表示对自闭症诊断的了解和接受程度有所提高,他们身边的人也会注意到这一点。事实上,我们发现了这一点,参与者和他们身边的人都同意这一点。此外,我们还发现一些证据表明,老年自闭症患者更善于应对自闭症。我们没有发现干预对心理困扰产生积极影响。参与者和信息提供者对心理教育计划的反馈大多是积极的。在今后的研究中,我们建议使用更大的群体样本和更长的时间尺度,我们还建议根据老年人的需要和要求进一步调整该计划,并根据最近的自闭症诊断结果,帮助老年自闭症患者对自己和自己的生活进行新的描述。
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引用次数: 0
Satisfaction with social connectedness is associated with depression and anxiety symptoms in neurodiverse first-semester college students. 对社交关系的满意度与神经多样化的大学一年级学生的抑郁和焦虑症状有关。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2024-02-21 DOI: 10.1177/13623613231216879
Erin E McKenney, Jared K Richards, Talena C Day, Steven M Brunwasser, Claudia L Cucchiara, Bella Kofner, Rachel G McDonald, Kristen Gillespie-Lynch, Jenna Lamm, Erin Kang, Matthew D Lerner, Katherine O Gotham

Lay abstract: How satisfied people feel with their social connections and support is related to mental health outcomes for many different types of people. People may feel less socially connected at some times in their life-like when they start college. Feeling disconnected from others could lead to depression or anxiety. The transition to college may be especially difficult for autistic students as they are more likely to have difficulties adjusting socially. In our study, we asked 263 college students to answer questions about their emotions and social satisfaction twice per week during their first semester of college. We found that students who reported being less satisfied with their social connectedness (either at the beginning or throughout the semester) tended to express more symptoms of depression and anxiety. This relationship between social satisfaction and anxiety was even stronger for people who had a strong desire for social interaction (i.e. were more socially motivated). Students with more autistic traits tended to report more mood concerns, and they also reported being less satisfied with friendships at the beginning of the semester. This information may help to support ongoing efforts to better address mental health in autistic college students by encouraging efforts to improve social satisfaction.

内容提要:人们对其社会关系和支持的满意程度与许多不同类型人群的心理健康结果有关。人在一生中的某些时候,比如刚上大学时,可能会感到社会联系较少。与他人脱节的感觉可能会导致抑郁或焦虑。对于患有自闭症的学生来说,向大学的过渡可能尤其困难,因为他们更有可能在社会适应方面遇到困难。在我们的研究中,我们要求 263 名大学生在大学第一学期每周两次回答有关他们的情绪和社交满意度的问题。我们发现,那些对自己的社交关系不太满意的学生(无论是在学期初还是在整个学期)往往会表现出更多的抑郁和焦虑症状。社交满意度与焦虑之间的这种关系对于那些有强烈社交欲望(即社交动机较强)的人来说更为明显。具有更多自闭症特征的学生往往会报告更多的情绪问题,他们也报告说在学期开始时对友谊的满意度较低。这些信息可能有助于通过鼓励提高社交满意度来支持目前为更好地解决自闭症大学生心理健康问题所做的努力。
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引用次数: 0
Examining the associations among knowledge, empowerment, and advocacy among parents of transition-aged youth with autism. 研究过渡期自闭症青少年家长的知识、能力和宣传之间的联系。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2024-01-25 DOI: 10.1177/13623613231221126
Chak Li, W Catherine Cheung, Meghan M Burke, Julie Lounds Taylor, Leann S DaWalt

Lay abstract: Parents of individuals with autism face many challenges in finding appropriate services and support for their children, and they also play an important role in advocating for their children's rights and needs. Despite the increasing availability of advocacy programs, it is still uncertain how to best encourage parents to advocate for their children. This study explored the connection between parents' knowledge and sense of empowerment, and how these factors relate to three types of advocacy activities (i.e. individual, peer, and systemic). The findings reveal that feeling empowered has a greater impact on advocacy than simply having knowledge. In addition, the study found that individual advocacy correlates to more peer advocacy, which also correlates to more systemic advocacy. These results can help researchers and professionals to better develop programs to increase parent advocacy and, in turn, help improve the lives of individuals with autism.

内容提要:自闭症患者的父母在为子女寻找合适的服务和支持时面临着许多挑战,他们在维护子女的权利和需求方面也发挥着重要作用。尽管宣传项目越来越多,但如何更好地鼓励家长为孩子进行宣传仍是一个未知数。本研究探讨了家长的知识和授权感之间的联系,以及这些因素与三种类型的倡导活动(即个人、同伴和系统)之间的关系。研究结果表明,感觉到自己有能力比仅仅拥有知识对宣传活动的影响更大。此外,研究还发现,个人宣传与更多的同伴宣传相关,而同伴宣传又与更多的系统宣传相关。这些结果可以帮助研究人员和专业人员更好地制定计划,提高家长的宣传力度,进而帮助改善自闭症患者的生活。
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引用次数: 0
Non-autistic observers both detect and demonstrate the double empathy problem when evaluating interactions between autistic and non-autistic adults. 非自闭症观察者在评估自闭症成人和非自闭症成人之间的互动时,都会发现并表现出双重移情问题。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2023-12-27 DOI: 10.1177/13623613231219743
Desiree R Jones, Monique Botha, Robert A Ackerman, Kathryn King, Noah J Sasson

Lay abstract: The "double empathy problem" refers to breakdowns in communication and understanding that frequently occur between autistic and non-autistic people. Previous studies have shown that autistic people often establish better rapport and connection when interacting with other autistic people compared to when interacting with non-autistic people, but it is unclear whether this is noticeable to non-autistic observers. In this study, 102 non-autistic undergraduate students viewed and rated video recordings of "get to know you" conversations between pairs of autistic and non-autistic adults. Sometimes the pairs were two autistic people, sometimes they were two non-autistic people, and sometimes they were "mixed" interactions of one autistic and one non-autistic person. Observers tended to rate non-autistic participants and their interactions the most favorably, but-consistent with the "double empathy problem"-they rated mixed interactions between autistic and non-autistic people as the least successful. They also perceived that only non-autistic people disclosed more when interacting with a non-autistic conversation partner. Autistic participants' partners in the conversations tended to evaluate them more favorably than did outside observers, suggesting that personal contact may facilitate more positive evaluations of autistic people. Furthermore, observers expressed less social interest in participants than did the autistic and non-autistic participants in the interactions. Together, these findings suggest that non-autistic observers both detect and demonstrate some aspects of the double empathy problem.

内容提要:"双重移情问题 "是指自闭症患者和非自闭症患者之间经常出现的沟通和理解障碍。以往的研究表明,与非自闭症患者相比,自闭症患者在与其他自闭症患者互动时往往能建立更好的默契和联系,但目前尚不清楚非自闭症观察者是否能注意到这一点。在这项研究中,102 名非自闭症本科生观看了一对自闭症和非自闭症成年人之间的 "认识你 "对话录像,并对录像进行了评分。有时是两个自闭症患者,有时是两个非自闭症患者,有时是一个自闭症患者和一个非自闭症患者的 "混合 "互动。观察者对非自闭症参与者及其互动的评价往往最高,但与 "双重移情问题 "相一致的是,他们对自闭症患者和非自闭症患者之间的混合互动评价最低。他们还认为,只有非自闭症患者在与非自闭症对话伙伴互动时才会透露更多信息。自闭症参与者的对话伙伴对他们的评价往往比外部观察者更积极,这表明个人接触可能会促进对自闭症患者更积极的评价。此外,与自闭症和非自闭症参与者相比,观察者对参与者的社交兴趣较低。这些发现共同表明,非自闭症观察者既能发现也能表现出双重移情问题的某些方面。
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引用次数: 0
Scene construction ability in neurotypical and autistic adults. 神经畸形和自闭症成人的场景构建能力。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-08-01 Epub Date: 2023-12-28 DOI: 10.1177/13623613231216052
Marchella Smith, Lindsey Cameron, Heather J Ferguson

Lay abstract: People with autism spectrum conditions (ASC) have difficulties imagining events, which might result from difficulty mentally generating and maintaining a coherent spatial scene. This study compared this scene construction ability between autistic (N = 55) and neurotypical (N = 63) adults. Results showed that scene construction was diminished in autistic compared to neurotypical participants, and participants with fewer autistic traits had better scene construction ability. ASC diagnosis did not influence the frequency of mentions of the self or of sensory experiences. Exploratory analysis suggests that scene construction ability is associated with the ability to understand our own and other people's mental states, and that these individual-level preferences/cognitive styles can overrule typical group-level characteristics.

研究摘要:自闭症谱系障碍(ASC)患者难以想象事件的发生,这可能是由于他们难以在头脑中生成并维持一个连贯的空间场景。本研究比较了自闭症成人(55 人)和神经畸形成人(63 人)的场景构建能力。结果显示,与神经畸形的参与者相比,自闭症参与者的场景构建能力较弱,而自闭症特征较少的参与者的场景构建能力较强。自闭症诊断并不影响提及自我或感官体验的频率。探索性分析表明,场景构建能力与我们理解自己和他人心理状态的能力有关,而这些个体层面的偏好/认知风格可以压倒典型的群体层面特征。
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引用次数: 0
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Autism
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