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The Relationship Between Autistic Traits and Quality of Life: Investigation of Indirect Effects Through Self-Determination. 自闭症特质与生活质量之间的关系:通过自我决定对间接影响的调查。
IF 9.5 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-06-17 eCollection Date: 2024-06-01 DOI: 10.1089/aut.2022.0117
Helen E Andrews, Darren Hedley, Simon M Bury

Background: Self-determination, described broadly as experiencing causal agency, is positively associated with quality of life (QoL) and increases through satisfaction of three basic psychological needs: autonomy (feeling able to make choices free from pressure), competence (perceived self-efficacy), and relatedness (social connection). Both unsupportive environments and challenges with social interaction can interfere with satisfaction of psychological needs. Social challenges are a key trait for autism diagnosis, and unsupportive environments are also known to adversely affect QoL for autistic people. Autistic people report, on average, lower self-determination than non-autistic people. Therefore, it is hypothesized that higher levels of autistic traits may reduce opportunities to develop self-determination, affecting QoL.

Methods: We tested a parallel indirect effects model where we hypothesized that the relationships between autistic traits and four domains of QoL (psychological, social, physical, and environmental) would be indirectly influenced through self-determination (represented through satisfaction of the basic psychological needs for autonomy, competence, and relatedness). This study drew participants from the general population (N = 262; M AGE = 37.6, standard deviation = 11.92; 1.9% reported an autism diagnosis and 2.7% identified as autistic without a diagnosis). Participants completed an online survey.

Results: Higher levels of autistic traits were associated with lower levels of self-determination and lower levels of QoL, and there was a significant indirect effect between autistic traits and QoL via self-determination. More specifically, we found a significant indirect effect between autistic traits and all QoL domains via competence; between autistic traits and the environmental, social, and psychological QoL domains via relatedness; and between autistic traits and the physical and environmental QoL domains through autonomy.

Conclusions: Our results suggest that supporting satisfaction of the needs for autonomy, competence, and relatedness may represent an important element in designing effective programs to support the development of self-determination in people with higher levels of autistic traits (potentially including autistic individuals) and also to support these people to improve their QoL.

背景:自我决定被广泛地描述为体验因果代理,它与生活质量(QoL)呈正相关,并通过满足三种基本心理需求来提高:自主性(感觉能够在没有压力的情况下做出选择)、能力(感知到的自我效能)和相关性(社会联系)。不支持的环境和社交挑战都会影响心理需求的满足。社交挑战是自闭症诊断的一个关键特征,不支持的环境也会对自闭症患者的生活质量产生不利影响。自闭症患者的自我决定能力平均低于非自闭症患者。因此,我们假设自闭症特征水平较高可能会减少发展自我决定能力的机会,从而影响 QoL:我们测试了一个平行间接效应模型,假设自闭症特质与 QoL 的四个领域(心理、社交、身体和环境)之间的关系将通过自我决定(通过满足自主性、能力和相关性等基本心理需求来体现)受到间接影响。本研究的参与者来自普通人群(人数=262;平均年龄=37.6,标准差=11.92;1.9%的人被诊断患有自闭症,2.7%的人被认为患有自闭症但未被诊断)。参与者完成了一项在线调查:较高的自闭症特质与较低的自我决定水平和较低的 QoL 水平相关,自闭症特质与 QoL 之间通过自我决定存在显著的间接影响。更具体地说,我们发现自闭症特质与所有 QoL 领域之间通过能力存在显著的间接效应;自闭症特质与环境、社会和心理 QoL 领域之间通过相关性存在显著的间接效应;自闭症特质与身体和环境 QoL 领域之间通过自主性存在显著的间接效应:我们的研究结果表明,支持自主性、能力和相关性需求的满足可能是设计有效计划的一个重要因素,以支持自闭症特质水平较高的人(可能包括自闭症患者)发展自我决定能力,并支持这些人改善其 QoL。
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引用次数: 0
Moving from Disorder to Difference: A Systematic Review of Recent Language Use in Autism Research. 从障碍到差异:自闭症研究中最新语言使用的系统回顾。
IF 9.5 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-06-17 eCollection Date: 2024-06-01 DOI: 10.1089/aut.2023.0030
Summer B Bottini, Hannah E Morton, Kelly A Buchanan, Kait Gould

Background: The neurodiversity paradigm positions autism as a neurological difference that is disabling in the societal context, shifting away from the traditional medical view of a disorder. Several recent publications recommend use of alternative neuro-affirming language (ANL) instead of traditional medical language (TML) with the aim to increase acceptance of autistic people and reduce prejudice. Examining language use within recent autism literature, including by journal and study characteristics, may offer insight into the influence of these recommendations and current disability discourse.

Methods: A systematic review was conducted using Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines in autism research from 2021 (n = 2322 articles; 394 journals). Articles were coded according to topic, participants, and use of self-report. Journals were coded by topic, geographic region, and language guidelines. Terminology use was extracted using QDA Miner software.

Results: Many articles primarily used TML with a smaller subset primarily using ANL. There was a positive correlation between ANL use and publication date. More ANL was associated with articles on topics of autistic traits, diversity, equity, and inclusion (DEI), or lifespan and that included autistic adults or autistic self-report. More ANL was also found in journals from Australasia or Europe or those that had identify-first language (IFL) guidelines. Less ANL (more TML) was associated with articles on biology/causes or treatment and that included autistic or non-autistic parents, autistic youth, siblings, or other clinical groups, and were published in medical journals.

Conclusion: TML continues to largely dominate language choices in autism research, with an emerging shift toward ANL in recent literature. Increased ANL may be facilitated by journal and article language recommendations. Neuro-affirming language was also more likely in articles on topics prioritized by the autistic community, that included autistic adults, and may also be driven by cultural differences. Researchers and practitioners should consider the potential for their language use to impact individual and societal views of autistic people.

背景:神经多样性范式将自闭症定位为一种在社会环境中致残的神经系统差异,改变了传统医学对自闭症的看法。最近的一些出版物建议使用替代性神经肯定语言(ANL)代替传统医学语言(TML),以提高人们对自闭症患者的接受度并减少偏见。研究近期自闭症文献中的语言使用情况,包括期刊和研究特点,可以帮助我们深入了解这些建议和当前残疾话语的影响:采用《系统综述和元分析首选报告项目》(PRISMA)指南对 2021 年以来的自闭症研究进行了系统综述(n = 2322 篇文章;394 种期刊)。文章根据主题、参与者和自我报告的使用情况进行编码。期刊按主题、地理区域和语言指南进行编码。使用 QDA Miner 软件提取术语使用情况:许多文章主要使用 TML,一小部分文章主要使用 ANL。ANL的使用与发表日期呈正相关。关于自闭症特征、多样性、公平与包容(DEI)或生命周期等主题的文章,以及包含自闭症成人或自闭症自我报告的文章,使用 ANL 的较多。来自澳大拉西亚或欧洲的期刊,或那些有识别第一语言(IFL)指南的期刊,也会发现更多的 ANL。在医学期刊上发表的有关生物学/病因或治疗的文章中,ANL较少(TML较多),且包含自闭症或非自闭症父母、自闭症青少年、兄弟姐妹或其他临床群体:在自闭症研究中,TML 仍在很大程度上主导着语言选择,而在最近的文献中,正逐渐转向 ANL。期刊和文章的语言建议可能会促进ANL的增加。在自闭症群体优先考虑的主题文章中,神经肯定语言也更有可能出现,其中包括自闭症成人,这也可能是文化差异造成的。研究人员和从业人员应考虑到他们的语言使用可能会影响个人和社会对自闭症患者的看法。
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引用次数: 0
“I Wish They'd Just Let Us Be.” Experiences of Indian Autistic Individuals Around Stimming Behaviors at the Workplace "我希望他们能让我们做自己"。印度自闭症患者在工作场所受到刺激行为影响的经历
IF 6.8 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2023-12-19 DOI: 10.1089/aut.2022.0096
Elixir Sagar, Shikha N. Khera, Naval Garg
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引用次数: 0
Examining Rates of Traumatic Events and Posttraumatic Stress Disorder Symptoms Among Autistic Adults 研究自闭症成人中创伤事件和创伤后应激障碍症状的发生率
IF 6.8 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2023-12-15 DOI: 10.1089/aut.2023.0022
Theresa Andrzejewski, Saily Gomez Batista, Tamara Abu-Ramadan, Kaitlyn E. Breitenfeldt, Alison U. Tassone, Ashley T. Winch, David C. Rozek, Christina G. McDonnell
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引用次数: 0
Burning Bridges and Building New Ones: A Story of Autistic Burnout in the Workplace 烧毁桥梁,建立新桥:职场自闭症倦怠的故事
IF 6.8 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2023-12-04 DOI: 10.1089/aut.2023.0087
Malorie Joy Feidner
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引用次数: 0
The Development and Evaluation of a Cross-Context Employment Program for Autistic Adolescents. 自闭症青少年跨情境就业项目的开发与评价
IF 6.8 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2023-12-01 Epub Date: 2023-12-12 DOI: 10.1089/aut.2022.0010
Briano Di Rezze, Irene O'Connor, Stelios Georgiades, Robin Brennan, Susan Honeyman, Anna DiFazio, Geoffrey B Hall, Lauren Chan, Robert Steele, Elizabeth Fallowfield, Terry Bennett

Vocational programs typically focus on building the skills of autistic youth. However, there is growing recognition that the supportive environment (or ecosystem) around an individual plays an important role in finding and maintaining work. Programs at the ecosystem-level can be established by coordinating support before high school ends. Cocreation of a vocational program by support providers can facilitate an integrated effort to prepare autistic youth for employment. In this study, we describe and evaluate the Job-Train Program (JTP), a vocational program for autistic high school students codesigned with educators and a community-based social services agency. A school board, community-based social services agency, and academics partnered to cocreate JTP. JTP combined skill teaching and paid supported employment on a university campus. This pilot study evaluated JTP using qualitative and quantitative data. Twelve autistic youth were recruited, aged 15-18 years (10 males, 2 females) with an average intelligence quotient of 101.9 (standard deviation = 14.4), from the Wechsler Abbreviated Scale of Intelligence-2. Youth and parents completed self-report measures (pre-post), including the primary outcome, Canadian Occupational Performance Measure (COPM). Post-JTP, interviews, focus groups, and surveys collected additional information from youth (n = 11), parents (n = 10), job coaches (n = 5), and employers (n = 8). Youth COPM scores indicated significant improvements in self-perceived ratings of skill performance (z = -2.5, p = 0.01) and satisfaction (z = -2.6, p = 0.01). Qualitative data corroborated COPM results noting youth skill improvements in self-esteem, independence, communication, and understanding work. Findings demonstrated a promising vocational training model for autistic high school students informing the development of integrated service pathways to support preparation for employment.

职业计划通常侧重于培养自闭症青少年的技能。然而,越来越多的人认识到,个人周围的支持性环境(或生态系统)在寻找和维持工作方面发挥着重要作用。在高中毕业之前,可以通过协调支持来建立生态系统层面的计划。由支持提供者共同创建一个职业项目,可以促进综合努力,为自闭症青少年就业做好准备。在本研究中,我们描述并评估了 "就业培训计划"(JTP),这是一项由教育工作者和社区社会服务机构共同设计的自闭症高中生职业计划。学校董事会、社区社会服务机构和学术界合作共同创建了 JTP。JTP 将技能教学与大学校园内的有偿辅助就业相结合。这项试点研究使用定性和定量数据对 JTP 进行了评估。研究招募了 12 名自闭症青少年,年龄在 15-18 岁之间(10 名男性,2 名女性),他们的平均智商为 101.9(标准差 = 14.4)。青少年和家长完成了自我报告测量(前-后),包括主要结果--加拿大职业表现测量(COPM)。JTP 结束后,通过访谈、焦点小组和调查等方式收集了来自青少年(11 人)、家长(10 人)、就业指导人员(5 人)和雇主(8 人)的更多信息。青少年的 COPM 分数表明,他们在技能表现(z = -2.5,p = 0.01)和满意度(z = -2.6,p = 0.01)方面的自我感觉评分有了明显改善。定性数据证实了 COPM 的结果,即青少年在自尊、独立、沟通和理解工作方面的技能有所提高。研究结果表明,针对自闭症高中生的职业培训模式大有可为,这为开发综合服务途径以支持就业准备工作提供了参考。
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引用次数: 0
An Examination of Perceived Stress and Emotion Regulation Challenges as Mediators of Associations Between Camouflaging and Internalizing Symptomatology 感知压力和情绪调节挑战作为伪装和内化症状之间关联的中介的研究
Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2023-11-03 DOI: 10.1089/aut.2022.0121
Goldie A. McQuaid, Lauren Y. Sadowski, Nancy Raitano Lee, Gregory L. Wallace
Background: Camouflaging involves the masking of autism traits, potentially creating an outer impression of “non-autisticness.” Although associations of camouflaging with anxiety and depression in autistic adults are widely reported, factors that mediate these associations are unclear. We examined two potential mediators of the association between camouflaging and anxiety/depression: perceived stress and emotion regulation (ER) challenges. Methods: Seven hundred eighty-seven autistic adults (18.2–78.2 years) recruited through Simons Powering Autism Research (SPARK) Research Match completed questionnaires, including the Camouflaging Autistic Traits Questionnaire (CAT-Q), and measures of autistic traits, depressive and anxious symptomatology, perceived stress, and ER challenges. Four moderated mediation models were tested. In all models the independent variable was CAT-Q total score, and the moderator variable was sex designated at birth. The dependent variable was depressive or anxious symptomatology, and the mediator variable was perceived stress or ER challenges. Results: We found that more camouflaging, increased ER challenges, and higher levels of perceived stress were associated with greater depressive and anxious symptomatology. We also found that perceived stress and ER challenges significantly mediated the associations between camouflaging and both depression and anxiety. In the model with perceived stress and anxiety, sex moderated the mediation, with females showing a stronger mediation. There was no significant moderation in any of the other models. Conclusion: We contextualize the findings within the broader literature on camouflaging as a response to stigma and other facets of minority stress. We discuss how the results of this study support the idea that the day-to-day stress of living in a neurotypical world, the cognitively demanding nature of camouflaging, and the constraints that camouflaging place on autistic people's behaviors in social contexts (e.g., contributing to suppressing ER strategies such as stimming), create a cycle that contributes to elevated rates of anxiety and depression in autistic people. Why is this an important issue? Camouflaging describes behaviors that can mask social differences. Camouflaging includes things such as “copying” other people's hand movements or facial expressions. Some autistic people say camouflaging feels like they are “pretending” to be someone they are not. Camouflaging is associated with depression and anxiety. We do not know exactly what other factors may be related to these associations between camouflaging and depression and anxiety. Autistic adults have high rates of depression and anxiety. It is important to understand factors that might make autistic adults more vulnerable to depression and anxiety. What was the purpose of this study? The purpose of this study was to look at possible factors related to associations between camouflaging and anxiety and depression. We looked at two
背景:伪装包括对自闭症特征的掩盖,潜在地制造一种“非自闭症”的外部印象。尽管自闭症成人的伪装与焦虑和抑郁的关联被广泛报道,但介导这些关联的因素尚不清楚。我们研究了伪装与焦虑/抑郁之间关联的两个潜在中介:感知压力和情绪调节(ER)挑战。方法:通过Simons Powering Autism Research (SPARK) Research Match招募787名成年自闭症患者(18.2-78.2岁),完成问卷调查,包括伪装自闭症特征问卷(CAT-Q),以及自闭症特征、抑郁和焦虑症状、感知压力和ER挑战的测量。对四个有调节的中介模型进行了检验。在所有模型中,自变量为CAT-Q总分,调节变量为出生时的性别。因变量为抑郁或焦虑症状,中介变量为感知压力或内质网挑战。结果:我们发现更多的伪装、更多的内质网挑战和更高水平的感知压力与更大的抑郁和焦虑症状相关。我们还发现,感知压力和内质网挑战显著调节了伪装与抑郁和焦虑之间的关联。在感知压力和焦虑模型中,性别调节了中介作用,女性表现出更强的中介作用。在其他模型中没有明显的缓和。结论:我们将研究结果置于更广泛的文献中,将伪装作为对耻辱和少数民族压力的其他方面的反应。我们讨论了这项研究的结果如何支持这样一种观点,即生活在一个典型的神经世界中的日常压力,伪装的认知要求的本质,以及伪装对自闭症患者在社会环境中的行为的限制(例如,有助于抑制刺激等ER策略),形成了一个循环,导致自闭症患者焦虑和抑郁的发生率升高。为什么这是一个重要的问题?伪装描述了可以掩盖社会差异的行为。伪装包括“模仿”他人的手部动作或面部表情。一些自闭症患者说,伪装感觉就像他们在“假装”自己不是别人。伪装与抑郁和焦虑有关。我们并不确切地知道还有哪些其他因素可能与伪装与抑郁和焦虑之间的关联有关。患有自闭症的成年人抑郁和焦虑的比例很高。了解可能使自闭症成年人更容易抑郁和焦虑的因素是很重要的。这项研究的目的是什么?这项研究的目的是研究伪装与焦虑和抑郁之间可能存在的关联因素。我们研究了两个因素:感知压力和情绪调节挑战。感知压力是一个人在日常生活中感受到的压力。情绪调节是指一个人在不同情况下如何处理自己的情绪。我们着眼于感知压力和情绪调节挑战有三个主要原因。首先,自闭症成年人报告了高水平的感知压力和情绪调节方面的挑战。其次,感知压力和情绪调节挑战都与自闭症患者的抑郁和焦虑有关。第三,伪装与自闭症患者的压力增加有关。研究人员做了什么?我们要求生活在美国的787名自闭症成年人完成调查。参与者回答了有关伪装的问题。参与者对他们的焦虑和抑郁进行评分。参与者报告了他们感受到的压力以及他们如何处理自己的情绪。我们研究了伪装与抑郁和焦虑之间的联系。我们还研究了不同程度的感知压力或处理情绪的不同挑战是否与伪装、抑郁和焦虑有关。我们测试了出生时被指定为男性的自闭症患者与出生时被指定为女性的自闭症患者之间是否存在所有这些关联。研究的结果是什么?我们发现,更多的伪装、更多的情绪调节挑战和更高水平的感知压力都与更多的抑郁和焦虑有关。我们还发现,感知压力和情绪调节挑战都与伪装与抑郁和焦虑之间的关联显著相关。在大多数情况下,这些关联在出生时被指定为男性的自闭症患者与出生时被指定为女性的自闭症患者之间没有区别。
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引用次数: 0
“I'm Trying to Reach Out, I'm Trying to Find My People”: A Mixed-Methods Investigation of the Link Between Sensory Differences, Loneliness, and Mental Health in Autistic and Nonautistic Adults “我试图接触,我试图找到我的人”:一项关于自闭症和非自闭症成年人感官差异、孤独感和心理健康之间联系的混合方法调查
Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2023-11-02 DOI: 10.1089/aut.2022.0062
Lisa Quadt, Gemma Williams, James Mulcahy, Dennis E.O. Larsson, Marta Silva, Andrew J. Arnold, Hugo D. Critchley, Sarah N. Garfinkel
Background: Rates of loneliness are substantially higher among autistic compared with nonautistic individuals. This observation refutes the persistent stereotype that autistic individuals are not motivated to seek meaningful social relationships. More plausibly, social environments systematically exclude people with higher levels of sensory differences, impeding on opportunities for autistic individuals to form meaningful relationships. In this study, we sought to quantify the level of distress associated with loneliness (Study A) and provide complementary qualitative insight into experiences of loneliness in relationship to sensory differences in autistic adults (Study B). Methods: In Study A, N = 209 participants completed a range of self-report questionnaires. In Study B, nine autistic adults took part in 10-minute unstructured dyadic conversations around the topic of loneliness. We derived a qualitative understanding of autistic individuals' experience of loneliness, enriched by inductive and deductive analyses. Results: In Study A, the autistic group showed significantly higher levels of loneliness, loneliness distress, anxiety, depression, and sensory reactivity. We found significant positive correlations between variables, but no group differences in differential relationships. The effect of sensory reactivity on anxiety and depression was mediated by levels of loneliness in both groups. In Study B, autistic participants described the pain of feeling lonely and socially disconnected, while simultaneously experiencing a need for restorative solitude after social overstimulation. Discussion: Our results indicate that sensory differences are related with higher loneliness and associated poor mental health in both autistic and nonautistic adults. This effect was exacerbated in autistic adults due to higher levels of sensory reactivity. First-hand reports from autistic adults on intense loneliness and the obstructive role of sensory environments refute stereotypes about a lack of social motivation in autistic adults. We conclude that to enable meaningful and inclusive social interaction, a societal effort is needed to create spaces that consider the sensory needs of all neurotypes. Research shows that autistic people experience loneliness more often than nonautistic adults. It also shows that sensory differences contribute to higher loneliness, and that both sensory differences and loneliness are related to poor mental health, such as anxiety and depression. However, we do not know if this is unique to autistic adults, or something that also occurs in nonautistic adults. There are also not many studies where autistic people themselves describe loneliness, and how they link their loneliness to sensory differences. Finding out about whether there are differences in autistic and nonautistic people regarding loneliness, and letting autistic people put their thoughts about loneliness into their own words is important to learn more about how we can s
我们希望我们的发现能够支持这样一种观点,即孤独对自闭症患者来说确实是一种痛苦的经历,整个社会都认识到需要创造温馨的感官环境,帮助克服许多自闭症成年人所经历的脱节。
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引用次数: 0
“I Wish This Tool Was Available to Me Sooner”: Piloting a Workplace Autism Disclosure Decision-Aid Tool for Autistic Youth and Young Adults “我希望我能早点得到这个工具”:为自闭症青年和年轻人试用一个工作场所自闭症披露决策辅助工具
Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2023-10-23 DOI: 10.1089/aut.2023.0054
Vanessa Tomas, Shauna Kingsnorth, Evdokia Anagnostou, Bonnie Kirsh, Sally Lindsay
Background: For autistic youth and young adults, deciding whether to disclose their autism at work may be complex since they are newly entering the workforce and are at an impressionable developmental period. Decision-aid tools can help someone make a choice regarding a topic/situation. We developed a workplace autism disclosure decision-aid tool called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up, and REveal?) to support autistic youth and young adults navigate disclosure decision-making. In this study, we aimed to assess the DISCLOSURE tool's (1) impact on decision-making and self-determination capabilities and (2) usability, feasibility, and acceptability. Methods: This was a single-arm pre–post pilot study. The DISCLOSURE tool comprises three interactive PDF documents and videos. Thirty participants (mean age of 23.5 years) completed online surveys before and after interacting with the DISCLOSURE tool. We used descriptive statistics for usability, feasibility, and acceptability. We calculated the Wilcoxon signed rank and paired t-tests to determine pre–post changes in decision-making and self-determination capabilities (Decisional Conflict Scale–Low Literacy Version [DCS-LL]; adapted Arc's Self-Determination Scale). We analyzed open-ended data using conventional (inductive) content analysis. Results: There were significant decreases in DCS-LL total and subscale scores (p < 0.0001) and a significant increase in Arc's total score (p = 0.01), suggesting important improvements. There were no significant increases for Arc's psychological empowerment and self-realization subscales (p = 0.05; p = 0.09). Median scores (4.0/5.0) indicate that participants agreed that the DISCLOSURE tool is acceptable, feasible, and meets the usability criteria. We developed four categories to describe the open-ended data: (1) disclosure capabilities, (2) the role of others, (3) positive tool impact and feedback, and (4) minimal tool impact and constructive feedback. Discussion: Findings are suggestive of the DISCLOSURE tool's ability to support workplace autism disclosure decision-making. Future studies should ascertain the DISCLOSURE tool's effectiveness, explore others' feedback (e.g., employers), and how to incorporate the tool into relevant employment and vocational programs. Autistic youth and young adults face a dilemma when starting their first jobs: should they disclose their autism at work? This is a complicated decision and involves considering many factors, benefits, and risks. Our team developed a decision-aid tool to help with this decision-making process called DISCLOSURE (Do I Start the Conversation and Let On, Speak Up and REveaL?). This study is important because it is the first to assess the DISCLOSURE tool and explore if it may be helpful. This study had two main goals. First, we assessed if the DISCLOSURE tool helps to build self-determination and decision-making knowledge, skills, and confidence. Second, we explored if participants
背景:对于自闭症青少年和青壮年来说,由于他们刚进入职场,处于易受影响的发展期,决定是否在工作中披露自己的自闭症可能是一件复杂的事情。决策辅助工具可以帮助人们对一个话题/情况做出选择。我们开发了一种工作场所自闭症披露决策辅助工具,名为disclosure(我是否开始对话,让自己说出来,说出来,揭示出来?),以帮助自闭症青年和年轻人做出披露决策。在本研究中,我们旨在评估披露工具(1)对决策和自决能力的影响,以及(2)可用性、可行性和可接受性。方法:这是一项单臂前-后先导研究。披露工具包括三个交互式PDF文件和视频。30名参与者(平均年龄23.5岁)在与披露工具互动之前和之后完成了在线调查。我们对可用性、可行性和可接受性使用描述性统计。我们计算了Wilcoxon签名秩和配对t检验来确定决策和自决能力的前后变化(决策冲突量表-低识字率版本[DCS-LL];改编自Arc的自决量表)。我们使用传统的(归纳)内容分析来分析开放式数据。结果:两组患者DCS-LL总分和亚量表评分均显著降低(p < 0.0001), Arc总分均显著升高(p = 0.01),均有显著改善。Arc的心理授权和自我实现分量表无显著升高(p = 0.05;P = 0.09)。中位数得分(4.0/5.0)表明参与者同意披露工具是可接受的、可行的,并且符合可用性标准。我们开发了四个类别来描述开放式数据:(1)披露能力,(2)他人的角色,(3)积极的工具影响和反馈,以及(4)最小的工具影响和建设性的反馈。讨论:研究结果暗示了披露工具支持工作场所自闭症披露决策的能力。未来的研究应确定披露工具的有效性,探索他人的反馈(如雇主),以及如何将该工具纳入相关的就业和职业计划。自闭症青年和年轻人在开始他们的第一份工作时面临着一个困境:他们应该在工作中透露自己的自闭症吗?这是一个复杂的决定,需要考虑许多因素、利益和风险。我们的团队开发了一个决策辅助工具来帮助这个决策过程,它被称为DISCLOSURE(我是否应该开始对话并让它继续,说出来并揭示出来?)这项研究很重要,因为它是第一个评估披露工具并探索它是否有用的研究。这项研究有两个主要目标。首先,我们评估了披露工具是否有助于建立自我决定和决策知识、技能和信心。其次,我们探讨了参与者是否认为披露工具是可用的、可接受的,并且可以在现实世界中使用(可行)。我们招募了30名参与者(平均年龄23.5岁)来完成两份在线调查——一份在使用DISCLOSURE工具之前,一份在使用之后。我们分析数据来观察是否有决策和自决知识,技能和信心的变化。我们还探讨了参与者如何评价披露工具的可接受性、可行性和可用性。我们通读开放式的答案,将它们分类。我们发现参与者的决策知识、技能和信心都有了很大的提高。“披露”工具显示出提高自我决定能力的希望。与会者一致认为披露工具是可用的、可接受的和可行的。许多与会者说,披露工具可以帮助他们在工作中作出披露决定。一些参与者表示,该工具对他们没有多大帮助。这是因为他们已经有了披露的知识和经验。总的来说,研究结果表明,该工具可能支持一些自闭症年轻人的披露决策过程。支持信息披露决策的工具很少。研究还表明,年轻的自闭症患者发现很难在工作中做出披露自闭症的决定,可能需要帮助。这项研究首次评估了一种工具,这种工具可能会缩小重要的差距,帮助自闭症年轻人做出披露信息的选择。我们需要继续测试DISCLOSURE工具,因为这是我们第一次对它进行评估。在这项研究中,我们也错过了一些重要的观点。大多数参与者是来自加拿大安大略省的白人、顺性女性或非二元性别,需要互联网和科技设备才能参加。结果表明,该工具可以帮助自闭症青少年和青壮年在工作中做出披露选择。我们将继续评估披露工具以确保其有效性。 自闭症青年和年轻人可以在未来使用披露工具来帮助指导他们在工作中披露的选择。相关的服务提供者也可以对他们的自闭症客户使用披露工具。
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引用次数: 0
Autistic People's Experience of Empathy and the Autistic Empathy Deficit Narrative 自闭症患者共情体验与自闭症共情缺失叙事
Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2023-09-11 DOI: 10.1089/aut.2023.0001
Lesley Kimber, Diarmuid Verrier, Stephen Connolly
Background: There is a dominant discourse, both in clinical texts and throughout the academic literature, that autistic people lack empathy; however, over the past decade, both clinicians and academics have increasingly rejected deficit-based descriptions of autism in favor of more nuanced explanations of the experience of autistic individuals in a social world. Methods: This study asked 76 autistic individuals about their own experience of empathy and the oft-cited empathy deficit. Data were thematically analyzed and revealed a wide array of empathic self-concepts among respondents. Results: Notably, there was a high proportion of hyper-empathic experiences. Many respondents reported their empathic responses to be overwhelming, or even distressing. These different experiences of empathy contrast with societal expectations of empathy, which often result in additional labor for autistic people as they navigate the non-autistic centered world. Conclusion: Although the academic literature is, in some areas, slowly moving away from a deficit perspective, more broadly there is still a negative impact from misconceptions around autistic people and empathy. Further work needs to be done to not only explore this misconception at a societal (rather than academic) level, but also better bridge the gap around the changing ideas of empathy and real-world understanding of autistic empathy. There is a stereotype that autistic people lack empathy, which can potentially lead to negative perceptions and biased behaviors. This stereotype has roots in earlier academic literature around autism. However, although this literature has become more nuanced over time, the stereotype persists among the general population. This study directly asked autistic people about their own experience of empathy and of the empathy deficit narrative to provide a richer description than is afforded by traditional studies that typically use questionnaire measures. We asked a diverse group of 76 autistic adults to tell us how they experience empathy and what their views were of the autistic empathy deficit narrative via an online survey. These data were then analyzed, and themes created, using qualitative content analysis. The first theme, heterogeneity of empathic experiences, captured the diverse ways in which autistic people experience empathy. Some did report a lack of empathy, whereas others did not, and some reported experiencing extreme emotional responses (hyper-empathy). The second theme, empathy as an effortful process, captured some of the challenges experienced during the empathy process and the strategies used to overcome these. The third theme, conditional empathy, captured the features of others that made it more or less likely that empathy would be experienced. Some participants found it easier to empathize with close others, animals, and other autistic people. The fourth theme, challenging the empathy deficit narrative, captured participants' perspectives on the empathy d
背景:在临床文献和整个学术文献中,有一种主流话语认为自闭症患者缺乏同理心;然而,在过去的十年里,临床医生和学术界越来越多地拒绝以缺陷为基础的自闭症描述,而倾向于对自闭症患者在社会中的经历进行更细致入微的解释。方法:本研究询问了76名自闭症患者的共情经历和常被提及的共情缺陷。对数据进行了主题分析,揭示了受访者中广泛的共情自我概念。结果:值得注意的是,高共情体验的比例很高。许多受访者表示,他们的移情反应是压倒性的,甚至是痛苦的。这些不同的共情体验与社会对共情的期望形成对比,这往往导致自闭症患者在非自闭症中心的世界中导航时需要额外的劳动。结论:虽然在某些领域,学术文献正在慢慢地从缺陷的角度出发,但更广泛地说,对自闭症患者和同理心的误解仍然会产生负面影响。进一步的工作不仅需要在社会(而不是学术)层面探索这种误解,还需要更好地弥合共鸣观念的变化和现实世界对自闭症共鸣的理解之间的差距。有一种刻板印象认为自闭症患者缺乏同理心,这可能会导致消极的看法和偏见的行为。这种刻板印象源于早期关于自闭症的学术文献。然而,尽管随着时间的推移,这些文献变得更加细致入微,但这种刻板印象在普通人群中仍然存在。这项研究直接询问了自闭症患者关于他们自己的同理心经历和同理心缺失的叙述,提供了比传统研究更丰富的描述,这些研究通常使用问卷调查的方法。我们通过一项在线调查询问了76名不同类型的自闭症成年人,让他们告诉我们他们是如何体验共情的,以及他们对自闭症共情缺陷叙事的看法。然后对这些数据进行分析,并使用定性内容分析创建主题。第一个主题,共情体验的异质性,抓住了自闭症患者体验共情的不同方式。有些人确实报告缺乏同理心,而另一些人则没有,有些人报告经历了极端的情绪反应(超同理心)。第二个主题,同理心作为一个努力的过程,捕捉了在同理心过程中遇到的一些挑战以及克服这些挑战的策略。第三个主题是条件共情,它捕捉到他人的特征,这些特征或多或少会让人产生共情。一些参与者发现,与亲近的人、动物和其他自闭症患者产生共鸣更容易。第四个主题,挑战共情缺失叙事,捕捉了参与者对共情缺失叙事的观点,从坚定的同意到坚定的不同意,以及这种叙事带来的伤害感知,如人际偏见或不良的临床实践。先前使用自我报告测量的定量研究发现,自闭症患者和非自闭症患者在共情方面存在各种差异。这项研究为这些发现增加了质的细微差别;描述了自闭症患者不同的共情生活经历,特别是与超共情经历有关;并阐明了自闭症患者对基于同理心缺失叙事的有害刻板印象的抵制。由于我们的招募方法,参与者样本只包括那些活跃的在线自闭症社区。因此,这里的研究结果可能在多大程度上反映了广泛的经验方面是有限的。此外,尽管在线调查允许从相对较多的人那里收集数据进行定性研究,但这也意味着,与更典型的定性数据收集方法不同,不可能要求参与者详细阐述或澄清他们的观点。我们希望这项研究能够强调对自闭症患者共情体验给予更多关注的必要性。这些问题的清晰表达可能有助于自闭症患者反思自己的经历,并感到“被看到”。同时,需要在社会一级进行教育,以提高对这些问题的认识,减少非自闭症人群中的非人化、陈规定型和偏见。
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Autism in Adulthood
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