Pub Date : 2024-06-17eCollection Date: 2024-06-01DOI: 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; MAGE = 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。
{"title":"The Relationship Between Autistic Traits and Quality of Life: Investigation of Indirect Effects Through Self-Determination.","authors":"Helen E Andrews, Darren Hedley, Simon M Bury","doi":"10.1089/aut.2022.0117","DOIUrl":"10.1089/aut.2022.0117","url":null,"abstract":"<p><strong>Background: </strong>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: <i>autonomy</i> (feeling able to make choices free from pressure), <i>competence</i> (perceived self-efficacy), and <i>relatedness</i> (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.</p><p><strong>Methods: </strong>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 <i>autonomy</i>, <i>competence</i>, and <i>relatedness</i>). This study drew participants from the general population (<i>N</i> = 262; <i>M</i> <sub>AGE</sub> = 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.</p><p><strong>Results: </strong>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 <i>competence</i>; between autistic traits and the environmental, social, and psychological QoL domains via <i>relatedness</i>; and between autistic traits and the physical and environmental QoL domains through <i>autonomy</i>.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"1 1","pages":"177-191"},"PeriodicalIF":9.5,"publicationDate":"2024-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11317804/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60803270","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-06-17eCollection Date: 2024-06-01DOI: 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.
{"title":"Moving from Disorder to Difference: A Systematic Review of Recent Language Use in Autism Research.","authors":"Summer B Bottini, Hannah E Morton, Kelly A Buchanan, Kait Gould","doi":"10.1089/aut.2023.0030","DOIUrl":"10.1089/aut.2023.0030","url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>A systematic review was conducted using Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines in autism research from 2021 (<i>n</i> = 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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"1 1","pages":"128-140"},"PeriodicalIF":9.5,"publicationDate":"2024-06-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11319857/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"60803597","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"“I Wish They'd Just Let Us Be.” Experiences of Indian Autistic Individuals Around Stimming Behaviors at the Workplace","authors":"Elixir Sagar, Shikha N. Khera, Naval Garg","doi":"10.1089/aut.2022.0096","DOIUrl":"https://doi.org/10.1089/aut.2022.0096","url":null,"abstract":"","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"108 30","pages":""},"PeriodicalIF":6.8,"publicationDate":"2023-12-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138959153","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Theresa Andrzejewski, Saily Gomez Batista, Tamara Abu-Ramadan, Kaitlyn E. Breitenfeldt, Alison U. Tassone, Ashley T. Winch, David C. Rozek, Christina G. McDonnell
{"title":"Examining Rates of Traumatic Events and Posttraumatic Stress Disorder Symptoms Among Autistic Adults","authors":"Theresa Andrzejewski, Saily Gomez Batista, Tamara Abu-Ramadan, Kaitlyn E. Breitenfeldt, Alison U. Tassone, Ashley T. Winch, David C. Rozek, Christina G. McDonnell","doi":"10.1089/aut.2023.0022","DOIUrl":"https://doi.org/10.1089/aut.2023.0022","url":null,"abstract":"","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"70 5","pages":""},"PeriodicalIF":6.8,"publicationDate":"2023-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138999399","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Burning Bridges and Building New Ones: A Story of Autistic Burnout in the Workplace","authors":"Malorie Joy Feidner","doi":"10.1089/aut.2023.0087","DOIUrl":"https://doi.org/10.1089/aut.2023.0087","url":null,"abstract":"","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"2 1","pages":""},"PeriodicalIF":6.8,"publicationDate":"2023-12-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138603743","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-12-01Epub Date: 2023-12-12DOI: 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.
{"title":"The Development and Evaluation of a Cross-Context Employment Program for Autistic Adolescents.","authors":"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","doi":"10.1089/aut.2022.0010","DOIUrl":"10.1089/aut.2022.0010","url":null,"abstract":"<p><p>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 (<i>n</i> = 11), parents (<i>n</i> = 10), job coaches (<i>n</i> = 5), and employers (<i>n</i> = 8). Youth COPM scores indicated significant improvements in self-perceived ratings of skill performance (<i>z</i> = -2.5, <i>p</i> = 0.01) and satisfaction (<i>z</i> = -2.6, <i>p</i> = 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.</p>","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"1 1","pages":"457-467"},"PeriodicalIF":6.8,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10726198/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43830711","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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。
{"title":"An Examination of Perceived Stress and Emotion Regulation Challenges as Mediators of Associations Between Camouflaging and Internalizing Symptomatology","authors":"Goldie A. McQuaid, Lauren Y. Sadowski, Nancy Raitano Lee, Gregory L. Wallace","doi":"10.1089/aut.2022.0121","DOIUrl":"https://doi.org/10.1089/aut.2022.0121","url":null,"abstract":"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","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"20 25","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135818194","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
{"title":"“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","authors":"Lisa Quadt, Gemma Williams, James Mulcahy, Dennis E.O. Larsson, Marta Silva, Andrew J. Arnold, Hugo D. Critchley, Sarah N. Garfinkel","doi":"10.1089/aut.2022.0062","DOIUrl":"https://doi.org/10.1089/aut.2022.0062","url":null,"abstract":"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","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"41 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135934609","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
{"title":"“I Wish This Tool Was Available to Me Sooner”: Piloting a Workplace Autism Disclosure Decision-Aid Tool for Autistic Youth and Young Adults","authors":"Vanessa Tomas, Shauna Kingsnorth, Evdokia Anagnostou, Bonnie Kirsh, Sally Lindsay","doi":"10.1089/aut.2023.0054","DOIUrl":"https://doi.org/10.1089/aut.2023.0054","url":null,"abstract":"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","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"30 3","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135413009","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
{"title":"Autistic People's Experience of Empathy and the Autistic Empathy Deficit Narrative","authors":"Lesley Kimber, Diarmuid Verrier, Stephen Connolly","doi":"10.1089/aut.2023.0001","DOIUrl":"https://doi.org/10.1089/aut.2023.0001","url":null,"abstract":"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","PeriodicalId":29965,"journal":{"name":"Autism in Adulthood","volume":"9 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135938866","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}