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The Associations Between Clinical, Social, Financial Factors and Unmet Needs of Autistic Adults: Results from an Observational Study. 临床、社会、经济因素与自闭症成人未满足需求之间的关系:一项观察性研究的结果。
Pub Date : 2021-09-01 DOI: 10.1089/aut.2020.0027
Caroline Jose, Patricia George-Zwicker, Aaron Bouma, Louise Tardif, Darlene Pugsley, Mathieu Bélanger, Marc Robichaud, Jeffrey Gaudet

Background: Autism is a developmental disability that affects how individuals experience the world. Each Autistic individual experiences Autism in their own way, meaning that the level and type of assistance in their everyday lives vary widely. A shortage of programs and services tailored to Autistic adults exists worldwide, and the current gap between needs and services is likely to worsen as the growing number of Autistic children being diagnosed reach adulthood. This research sought to determine priorities in terms of health and social service needs of Autistic adults and to examine factors influencing whether or not these services were being received.

Methods: Through a multistakeholder approach, researchers and Autistic adults codeveloped the Maritime Provinces Needs Assessment Survey and collected data from August 2017 to February 2018. The research team engaged Autistic adult partners, including one that was project colead, as full partners. We recruited survey respondents from three Maritime Provinces using mainly social media and local Autism networks. We used Poisson regression analyses to identify factors most strongly associated with the number of unmet needs reported by Autistic adults.

Results: In total, 260 respondents completed the needs assessment survey: 77 self-reporting Autistic adults (aged 19-55 years), 87 Autistic adults (aged 18-63 years) whose information was provided by a proxy respondent, and 96 professionals working in the field of Autism. Autistic adults reported a mean of 2.1 ± 1.5 (self-reported) and 2.8 ± 2.1 (proxy-reported) services wanted but not received. The number of mental health and neurodevelopmental conditions, unemployment, and perception that government support is insufficient were positively related to unmet needs.

Conclusions: Overall, the results of this study highlight considerable gaps among the support needs of Autistic adults. The identification of factors associated with a higher number of unmet needs helps identify potential subgroups requiring more attention.

Lay summary: Why was this study done?: There is currently a shortage of programs and services for Autistic adults. Little is known about which services are most important to Autistic adults and which factors are associated with not receiving them.What was the purpose of this study?: Our goals were (1) to determine the service need priorities of Autistic adults and (2) to examine factors associated with unmet needs.What did the researchers do?: The researchers invited health professionals, service providers, policy makers, Autism advocates, as well as Autistic adults and caregivers of Autistic adults to participate as part of the project team. In the early phases of the project, we named an Autistic adult colead of the project. In doing so, we acknowledged that conducting relevant research on the Autistic adu

背景:自闭症是一种影响个体体验世界的发育障碍。每个自闭症患者都以自己的方式经历自闭症,这意味着他们日常生活中的帮助水平和类型差别很大。全球范围内,为自闭症成人量身定制的项目和服务都存在短缺,随着越来越多的自闭症儿童被诊断为成年,目前需求和服务之间的差距可能会加剧。这项研究旨在确定自闭症成年人的健康和社会服务需求方面的优先事项,并审查影响这些服务是否得到的因素。方法:通过多方利益相关者的方法,研究人员和自闭症成年人共同制定了《沿海省份需求评估调查》,并收集了2017年8月至2018年2月的数据。研究小组聘请了自闭症的成年伙伴,包括一位项目负责人,作为正式的合作伙伴。我们主要利用社交媒体和当地自闭症网络从三个沿海省份招募调查对象。我们使用泊松回归分析来确定与自闭症成年人报告的未满足需求数量最密切相关的因素。结果:共260名被调查者完成了需求评估调查:77名自报自闭症成人(年龄19-55岁),87名年龄18-63岁的自闭症成人(信息由代理被调查者提供),96名自闭症领域的专业人士。自闭症成人报告的平均服务数量为2.1±1.5(自我报告)和2.8±2.1(代理报告)。心理健康和神经发育问题的数量、失业以及认为政府支持不足与未满足的需求呈正相关。结论:总的来说,本研究的结果突出了自闭症成年人在支持需求方面存在相当大的差距。确定与大量未满足需求相关的因素有助于确定需要更多关注的潜在子群体。Lay summary:为什么要做这项研究?目前针对自闭症成人的项目和服务缺乏。对于哪些服务对自闭症成年人来说是最重要的,以及哪些因素与不接受这些服务有关,人们知之甚少。这项研究的目的是什么?我们的目标是:(1)确定自闭症成年人的服务需求优先级;(2)检查与未满足需求相关的因素。研究人员做了什么?研究人员邀请了健康专家、服务提供者、政策制定者、自闭症倡导者以及自闭症成年人和自闭症成年人的照顾者作为项目团队的一部分参与。在项目的早期阶段,我们任命了一位自闭症成年人作为项目的负责人。在这样做的过程中,我们认识到,对自闭症成人社区进行相关研究不仅意味着倾听他们的声音和关注,而且还意味着为研究本身提供平等发言权的机会。我们调整了以前使用的调查,使其与我们只关注自闭症成年人的目标保持一致。我们在网上发起了这项调查,并利用各种媒体和社区渠道进行推广,其中许多是来自自闭症成人团队成员的直接建议。我们提供了纸质副本,并为那些需要帮助填写调查问卷的人提供了电话号码。研究的结果是什么?超过25%的自闭症成年人确定了12种不同的服务作为优先需求。(1)报告心理健康和神经发育状况较差的自闭症成年人,(2)认为自己的心理健康状况较差的自闭症成年人,或(3)认为政府支持不足的自闭症成年人,其需求未得到满足的风险更大。这些发现对已知的知识有什么补充?与之前的研究类似,我们发现自闭症成年人的服务需求是多种多样的,许多人没有得到他们认为优先的服务。我们的研究还进一步确定了与大量未满足需求相关的因素。研究中有哪些潜在的弱点?我们的样本并不一定反映自闭症成人社区的整体情况,因为我们无法保证那些难以接触到的群体能够接触到我们的调查。此外,我们无法知道我们的结果会如何随着时间的推移而变化,因为我们的调查只填写了一次。最后,我们没有测量自闭症的特征,因此无法估计不同类型的特征是如何与特定的需求相关联的。这些发现将如何帮助现在或将来的自闭症成年人?我们的研究结果可能有助于引起人们对需要更多帮助以获得所需服务的自闭症成人亚群体的关注。
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引用次数: 4
Let's Talk About Autistic Autism Researchers. 让我们谈谈自闭症研究人员。
Pub Date : 2021-09-01 Epub Date: 2021-09-02 DOI: 10.1089/aut.2021.29012.scj
Sandra C Jones
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引用次数: 0
Preference to Eat Alone: Autistic Adults' Desire for Freedom of Choice for a Peaceful Space. 喜欢独自进餐:自闭症成人对自由选择和平空间的渴望。
Pub Date : 2021-09-01 Epub Date: 2021-09-02 DOI: 10.1089/aut.2020.0066
JungJa Park-Cardoso, Ana Paula Soares D Silva

Backgrounds: Autistic adults tend to prefer eating alone, which may result in further social isolation. This study aims to understand contexts of challenges autistic adults face when eating with other people outside home.

Methods: We explored autistic subjectivities actively situated in eating environments. We conducted follow-up individual email interviews with autistic adults diagnosed with an autism spectrum disorder in adulthood (n = 10) and autistic adults without a formal diagnosis (n = 6), both of whom had participated in our prior online survey with Brazilian autistic adults. We used a thematic analysis to gain an in-depth understanding of challenging characteristics of social situations in the eating space.

Results: To eat out comfortably, many participants did not talk while eating, chose places without sensory overload, chose places with eatable foods, ate at off-peak hours, used sensory tools, and/or left places when stressed. Participants developed these coping strategies to negotiate incongruences between their autistic personal characteristics and their physical environments. However, there were incongruences between the coping strategies and social contexts with codiners. Participants often could not freely use the strategies-both in work and in casual social situations. This lack of freedom of choice often resulted in feeling uncomfortable, sick, or having meltdowns during or after social dining. Because of these experiences, many participants decided to avoid social dining.

Conclusions: The preference to eat alone in autistic adults may reflect their desire for freedom of choice to use coping strategies to eat in a peaceful food space. Creating a peaceful eating environment may be a feasible and humanistic approach to reduce unwanted aloneness and social isolation in autistic adults.

Lay summary: Why was this study done?: Eating together with other people is a common activity to socialize and feel a sense of belonging. But autistic adults often prefer to eat alone, though they have a desire to socialize.What was the purpose of this study?: To study challenging aspects of eating out with other people, to understand why some autistic adults prefer to eat alone.What did the researchers do?: We interviewed adults who considered themselves to be on the autism spectrum. Of the 16 interview participants, 10 were formally diagnosed with an autism condition and 6 were not. They once participated in our online survey with Brazilian autistic adults. The interviews were done by email. We asked about eating places and experiences in eating out. We looked for the common themes over all the interview responses.What were the results of the study?: When eating out alone, participants had strategies to eat comfortably. They could eat without talking, choose places without sensory overload, choos

背景:自闭症成年人往往喜欢独自进餐,这可能会导致他们进一步与社会隔离。本研究旨在了解自闭症成人在与他人外出就餐时所面临的挑战:我们探讨了自闭症患者在进餐环境中的主观能动性。我们对成年后被诊断患有自闭症谱系障碍的自闭症成年人(10 人)和未被正式诊断的自闭症成年人(6 人)进行了后续个人电子邮件访谈,他们都曾参与过我们之前对巴西自闭症成年人进行的在线调查。我们采用主题分析法深入了解了饮食空间社交情境的挑战性特征:为了舒适地外出就餐,许多参与者在就餐时不说话,选择没有过多感官刺激的地方,选择有可食用食物的地方,在非高峰时段就餐,使用感官工具,和/或在压力过大时离开就餐场所。参与者制定了这些应对策略,以解决自闭症个人特征与自然环境之间的不协调问题。然而,这些应对策略与编纂者的社会环境之间也存在不协调。无论是在工作中还是在闲暇的社交场合,参与者往往不能自由地使用这些策略。这种缺乏选择自由的情况常常导致他们在社交用餐时或用餐后感到不舒服、恶心或崩溃。由于这些经历,许多参与者决定避免社交进餐:结论:成人自闭症患者喜欢独自进餐,这可能反映了他们渴望自由选择,使用应对策略,在一个安静的饮食空间进餐。创造一个安静的进餐环境可能是减少自闭症成人不必要的孤独感和社会隔离感的一种可行的人性化方法。但患有自闭症的成年人虽然渴望社交,却往往喜欢独自进餐:研究人员做了什么?我们采访了自认为属于自闭症谱系的成年人。在 16 名采访参与者中,10 人被正式诊断为自闭症,6 人没有。他们曾经参加过我们与巴西自闭症成年人进行的在线调查。访谈通过电子邮件进行。我们询问了就餐地点和外出就餐的经历。我们在所有的访谈回答中寻找共同的主题:当独自外出就餐时,参与者有一些让自己吃得舒服的策略。他们可以在吃饭时不说话,选择没有感官负担的地方,选择有可吃食物的地方,在非高峰时段吃饭,使用耳机等工具,或在紧张时离开。但是,在工作和休闲社交场合,他们往往不能自如地做到这一点。他们知道自己的应对策略会被别人认为是不恰当的。例如,许多参与者感到有压力,不得不在吃饭时说话。此外,其他人对吃饭时间和地点的偏好也与参与者不同。如果不使用他们的应对策略,参与者就很难应对压力环境。因此,在与他人外出就餐时或就餐后,参与者经常会感到不舒服、恶心或崩溃。出于这些原因,他们中的很多人都避免与他人一起外出就餐:成人自闭症患者喜欢独自进餐,在涉及进餐的社交场合中遇到困难,这已被理解为自闭症患者的饮食问题。我们的研究结果表明,一些用餐同伴减少了自闭症患者在舒适的社交和物理环境中用餐的自由,而这种偏好表达了对这种自由的渴望:因为我们使用了电子邮件采访,所以研究中没有包括任何无法使用电子邮件的参与者,而且参与者都受过大学教育,这与大多数被诊断患有自闭症的巴西成年人不同:这些研究结果将帮助自闭症成人,让其他人了解用餐同伴可能会减少自闭症患者舒适用餐自由的方式,并鼓励他们不要这样做。研究结果还表明,社会应把重点放在创造一个和平的进餐环境上,而不是把重点放在寻找治疗自闭症孤独症的方法上,好像自闭症孤独症是由自闭症患者自身的问题造成的。
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引用次数: 0
"I'm Human After All": Autism, Trauma, and Affective Empathy. "我毕竟是人":自闭症、创伤和情感共鸣。
Pub Date : 2021-09-01 Epub Date: 2021-09-02 DOI: 10.1089/aut.2020.0013
Romy Hume, Henry Burgess

Academic literature has long associated autism with empathy deficits. Although this view has been attenuated over time to include only cognitive empathy, earlier perceptions continue to influence popular representations of autism and screening/diagnostic tools. As a result, empathetic autistics may be prevented from accessing diagnosis, and those with a diagnosis may experience internalized stigma or violence under the guise of therapy. There are, however, some autistics who do self-identify as having empathy difficulties. The purpose of this perspective piece was to first trouble the view of empathy "deficit" as intrinsic within autism and consider alternative explanations and, second, to more deeply consider post-traumatic stress disorder (PTSD) as a factor for autistic people who self-identify as having empathy difficulties. Using both literature and author narrative, we argue that autistics are more likely to experience trauma and more vulnerable to developing PTSD, but less likely to receive a diagnosis of PTSD than nonautistics, as their PTSD-related symptoms, such as a lack of affective empathy, may be conflated with autism traits. Our main recommendations are: (1) future studies should investigate the possible interactions between autism, trauma, PTSD, and affective empathy, determining whether autistic adults with PTSD may recover affective empathy following therapy; (2) clinicians should look beyond autism if their client identifies a lack of affective empathy as part of their challenges; (3) and clinicians should adapt diagnostic procedures for PTSD in autistic adults to accommodate those with alexithymia, and exercise caution when using screening tools for autism, allowing empathic autistic adults to access diagnosis.

Lay summary: What is the topic of this article and why is it important?: Many people believe that autism causes a lack of empathy. This belief is a problem because it denies the lived experience of autistic adults and makes them appear as less than human. It can also lead to violence against autistics, and it can mean that empathic autistic adults miss out on an autism diagnosis. As a result, they may not be able to access necessary supports. This situation may cause suffering for autistic adults.What is the perspective of the authors?: R.H. is an autistic woman diagnosed in adulthood, who is often overwhelmed by too much empathy. She worked as an employment mentor for autistics and is now a PhD candidate researching relationship-building between autistic service users and their support professionals. H.B. is an autistic man diagnosed in childhood. As a teenager, he was also diagnosed with post-traumatic stress disorder (PTSD), a mental disorder caused by trauma. He did not feel any empathy for most of his life and felt very distressed by this, as he thought that it was a permanent trait of his autism. However, he started feeling empathy after trauma therapy and falling in love.

长期以来,学术文献一直将自闭症与移情缺陷联系在一起。尽管随着时间的推移,这种观点已被淡化,仅包括认知移情,但早期的观念仍影响着自闭症的流行表述和筛查/诊断工具。因此,具有移情能力的自闭症患者可能无法得到诊断,而那些得到诊断的自闭症患者可能会在治疗的幌子下经历内化的耻辱或暴力。不过,也有一些自闭症患者确实自我认同为有移情障碍。本视角文章的目的首先是对自闭症固有的移情 "缺失 "观点提出质疑,并考虑其他解释;其次是更深入地考虑创伤后应激障碍(PTSD)作为自闭症患者自我认定有移情困难的一个因素。通过文献和作者的叙述,我们认为自闭症患者更有可能经历创伤,也更容易患上创伤后应激障碍,但与非自闭症患者相比,他们被诊断为创伤后应激障碍的可能性较小,因为他们与创伤后应激障碍相关的症状,如缺乏情感共鸣,可能会与自闭症特征混为一谈。我们的主要建议是(1) 未来的研究应调查自闭症、创伤、创伤后应激障碍和情感移情之间可能存在的相互作用,确定患有创伤后应激障碍的自闭症成人是否可能在治疗后恢复情感移情;(2) 如果客户认为情感移情的缺乏是他们面临的挑战之一,临床医生应将目光投向自闭症以外的领域;(3) 临床医生应调整自闭症成人创伤后应激障碍的诊断程序,以适应有情感移情的自闭症成人,并在使用自闭症筛查工具时谨慎行事,允许有情感移情的自闭症成人获得诊断。铺垫摘要:本文的主题是什么,为什么重要?许多人认为自闭症会导致缺乏移情能力。这种观点是个问题,因为它否认了自闭症成年人的生活经历,使他们看起来不那么像人。它还可能导致针对自闭症患者的暴力行为,并可能意味着具有移情能力的自闭症成年人无法获得自闭症诊断。因此,他们可能无法获得必要的支持。作者的观点是什么?R.H. 是一名成年后才被诊断出患有自闭症的女性,她经常被过多的同情所淹没。她曾担任自闭症患者的就业指导师,现在是一名博士生,研究自闭症服务用户与其支持专业人员之间的关系建设。H.B. 是一名在童年时就被诊断出患有自闭症的男子。青少年时期,他还被诊断出患有创伤后应激障碍(PTSD),这是一种由创伤引起的精神障碍。在他生命的大部分时间里,他没有任何同理心,并为此感到非常痛苦,因为他认为这是他自闭症的永久特征。然而,在接受了创伤治疗并坠入爱河后,他开始产生移情。两位作者都认为,成年自闭症患者可以体验到各种形式的移情:作者引用了一些研究来说明自闭症-移情神话的其他原因:(1)非自闭症患者可能无法识别自闭症患者的移情,因为他们之间存在差异;(2)非自闭症患者可能不相信自闭症患者说他们有移情,因为以前的研究表明这是不可能的;(3)对自闭症患者的移情研究可能不正确,因为它使用了不恰当的方法。作者随后提出,未被发现的创伤后应激障碍可能是一些自闭症患者在这方面遇到困难的原因。他们之所以这么认为,是因为创伤后应激障碍会关闭情感共鸣。与非自闭症患者相比,自闭症患者更有可能经历创伤,更容易患上创伤后应激障碍,但得到创伤后应激障碍诊断的可能性却更小。作者有什么建议? 1.研究人员应与那些表示难以产生共鸣的成年自闭症患者合作,以确定他们是否可能患有创伤后应激障碍和/或在创伤治疗后恢复共鸣。3.临床医生在使用自闭症筛查/诊断工具时,应谨慎对待与移情有关的问题,使具有移情能力的自闭症成人能够获得诊断和适当的支持:我们希望这将为患有创伤后应激障碍的自闭症患者提供更好的支持,并为那些没有创伤后应激障碍的自闭症患者减少转诊和诊断程序的偏差。我们还希望,如果自闭症成人在移情方面有困难,可以建议他们将创伤后应激障碍而非自闭症作为根本原因,从而减少他们的耻辱感。
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引用次数: 0
Toward Empathetic Autism Research: Developing an Autism-Specific Research Passport. 开展富有同情心的自闭症研究:开发自闭症专用研究护照。
Pub Date : 2021-09-01 Epub Date: 2021-09-02 DOI: 10.1089/aut.2020.0026
Maria Ashworth, Laura Crane, Robyn Steward, Melissa Bovis, Elizabeth Pellicano

Autistic adults sometimes report negative experiences of research participation. People have developed passports or toolkits in other areas where community members report dissatisfaction (e.g., health care, criminal justice). We created a Research Passport that autism researchers and autistic adults could use to support the inclusion of autistic adults as research participants. We designed and developed the Research Passport via an iterative design process. First, we gathered ideas for a Research Passport via focus groups with autistic adults without an intellectual disability (ID) (n = 9) and autism researchers (n = 6; one of whom was autistic). We found that the Research Passport (1) was a useful idea, but not a panacea for all issues in autism research, (2) needed to be universal and flexible, and (3) could have a broad remit (e.g., to record scores on commonly used standardized tasks that could, with permission, be shared with different researchers). Next, we conducted a preliminary evaluation of a prototype Research Passport via usability testing in three ongoing research projects. Nine autistic participants without an ID provided feedback on the Research Passport (via a survey), as did three nonautistic researchers (via interviews). We found that the Research Passport (1) promoted positive participant-researcher relationships, (2) provided a structure and framework to support existing practices, and (3) needed to be adapted slightly to facilitate usability and manage expectations. Overall, the Research Passport was useful in promoting empathetic autism research. Further design and development of the Research Passport are warranted.

Lay summary: Why was this research developed?: Autistic adults taking part in research do not always have good experiences. An autistic member on our team thought that a Research Passport could help improve people's experiences. This idea was inspired by "passports" or "toolkits" that autistic people can use when visiting professionals such as doctors (so the doctor knows about the person and how to support them).What does the Research Passport do?: The Research Passport lets autistic people tell researchers about themselves before taking part in a research study. Autistic people can decide how much, or how little, they tell the researcher. Autistic and/or nonautistic researchers can use the Research Passport to try and make sure that their autistic participants have good experiences when taking part in research.How did the researchers evaluate the Research Passport?: First, nine autistic adults (who did not have an intellectual disability) and six autism researchers took part in group discussions. We asked what they thought about our Research Passport idea and what it should include. We made a Research Passport mock-up based on these discussions. Nine autistic participants who did not have an intellectual disability used

自闭症成年人有时会报告参与研究的负面经历。在社区成员表示不满的其他领域(如医疗保健、刑事司法),人们已经开发了护照或工具包。我们制作了一本研究护照,自闭症研究人员和成年自闭症患者可以使用它来支持将成年自闭症患者作为研究参与者。我们通过迭代设计流程设计并开发了 "研究护照"。首先,我们通过与非智障 (ID) 自闭症成人(n = 9)和自闭症研究人员(n = 6;其中一人是自闭症患者)的焦点小组讨论,收集了关于 "研究护照 "的想法。我们发现,"研究护照"(1)是一个有用的想法,但不是解决自闭症研究中所有问题的灵丹妙药;(2)需要具有通用性和灵活性;(3)可以有广泛的职权范围(例如,记录常用标准化任务的得分,经许可后可与不同的研究人员共享)。接下来,我们在三个正在进行的研究项目中通过可用性测试对研究护照原型进行了初步评估。九名没有身份证明的自闭症参与者(通过调查)和三名非自闭症研究人员(通过访谈)对 "研究护照 "提供了反馈意见。我们发现,"研究护照"(1)促进了参与者与研究人员之间的积极关系,(2)提供了支持现有实践的结构和框架,(3)需要稍作调整,以提高可用性和管理期望值。总的来说,研究护照对促进移情自闭症研究很有帮助。研究护照的进一步设计和开发是有必要的:成人自闭症患者参与研究的经历并不总是美好的。我们团队中的一名自闭症成员认为,研究护照可以帮助改善人们的体验。这个想法受到了 "护照 "或 "工具包 "的启发,自闭症患者在看医生等专业人士时可以使用 "护照 "或 "工具包"(以便医生了解患者的情况以及如何为他们提供支持):研究护照 "让自闭症患者在参与研究前向研究人员介绍自己。自闭症患者可以决定告诉研究人员多少信息。研究人员如何评估研究护照?首先,九名成年自闭症患者(无智力障碍)和六名自闭症研究人员参加了小组讨论。我们询问了他们对 "研究护照 "想法的看法,以及 "研究护照 "应包括哪些内容。我们根据这些讨论制作了研究护照模型。九名没有智力障碍的自闭症参与者在三个大学研究项目中使用了该模拟护照。自闭症参与者填写了一份调查问卷,告诉我们 "研究护照 "的优点和缺点。此外,我们还就研究护照的使用情况采访了三位研究人员(询问他们喜欢什么,哪些地方可以做得更好):参与设计 "研究护照 "的成年自闭症患者和研究人员认为 "研究护照":(1)可能有用,但不能解决自闭症研究中的所有问题;(2)需要适合许多不同的人群;(3)可能有许多不同的益处(例如,收集参与者在测试中的分数,以便研究人员进行研究)、自闭症成人和研究人员在正在进行的研究中使用了 "研究护照",并告诉我们:(1) 使参与者和研究人员建立了良好的关系;(2) 帮助研究人员确保他们的研究方式是可以接受的;(3) 非常有用。不过,需要告诉参与者《研究护照》能/不能帮助他们做什么:本研究只涉及一小部分自闭症成人和研究人员,研究结果可能与具有不同需求的自闭症成人和研究人员的研究结果不同。此外,参与者认为研究护照不太容易填写,而且有点长。我们需要修改《研究护照》,以便更多自闭症患者(如智障人士)可以使用:研究护照需要经过专业设计,以便更多自闭症患者使用。对 "研究护照 "进行更大规模的评估可以让我们在更多的参与者和更多的研究中对其进行测试:使用《研究护照》可以改善自闭症成人参与研究的体验,只要做出一些改变,并配合其他支持措施即可。
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引用次数: 0
Interpersonal Trauma and Posttraumatic Stress in Autistic Adults. 自闭症成人的人际创伤和创伤后应激。
Pub Date : 2021-09-01 DOI: 10.1089/aut.2020.0073
Katherine E Reuben, Christopher M Stanzione, Jenny L Singleton

Background: Many autistic adults report interpersonal traumas (IPTs) such as physical or sexual assault, which are often associated with posttraumatic stress and dissociation. Factors such as gender might make autistic individuals particularly vulnerable to experiencing IPT and negative posttraumatic symptoms.

Methods: In this study, 687 self-identified autistic adults completed an online survey on their traumatic experiences and mental health symptoms.

Results: Seventy-two percent of participants reported experiencing sexual assault, other unwanted or uncomfortable sexual experiences, or physical assault. Forty-four percent of participants met the criteria for posttraumatic stress disorder (PTSD), including 50% of those who had experienced IPT and 28% of those who had not (odds ratio = 2.50; 95% confidence interval 1.74-3.60). IPT was also significantly associated with higher levels of psychoform (p < 0.001) and somatoform (p < 0.001) dissociation. Autistic cisgender women and gender minorities experienced a significantly higher number of traumas (p = 0.004) and were significantly more likely than cisgender men to experience sexual IPT (p < 0.001) and meet the criteria for PTSD (p < 0.001). There were no significant differences between autistic individuals with and without a professional autism spectrum disorder (ASD) diagnosis.

Conclusions: IPT is associated with potentially severe mental health outcomes for autistic adults. Autistic women and gender minorities may be particularly vulnerable to sexual IPT and adverse outcomes. Increased screening for a history of IPT and posttraumatic symptoms is recommended for all autistic adults regardless of ASD diagnosis status.

Lay summary: Why was this study done?: Many autistic people experience interpersonal traumas (IPTs) such as sexual or physical assault. These can lead to mental health challenges such as posttraumatic stress disorder (PTSD) or dissociation (a disconnection between individuals and aspects of their perceptions or sense of self). We wanted to better understand what might make autistic adults more likely to experience trauma and how it affects them.What was the purpose of this study?: The purpose was to understand what might make autistic people more at risk of experiencing IPT and PTSD. We also wanted to know if IPT is associated with a higher risk of PTSD or dissociation.What did the researchers do?: Six hundred eighty-seven autistic adults filled out an online survey about their traumatic experiences, PTSD symptoms, and dissociation symptoms. We analyzed their responses to see how often participants reported experiencing different types of trauma and whether they met the criteria for PTSD and clinical dissociation. We then compared trauma experiences and PTSD rates across genders and those with and without a professio

背景:许多自闭症成人报告人际创伤(ipt),如身体或性侵犯,这通常与创伤后应激和分离有关。性别等因素可能使自闭症患者特别容易经历IPT和消极的创伤后症状。方法:在本研究中,687名自认为自闭症的成年人完成了一项关于他们的创伤经历和心理健康症状的在线调查。结果:72%的参与者报告说经历过性侵犯,其他不想要的或不舒服的性经历,或身体攻击。44%的参与者符合创伤后应激障碍(PTSD)的标准,包括50%经历过IPT的参与者和28%没有经历过IPT的参与者(优势比= 2.50;95%置信区间1.74-3.60)。IPT还与较高的精神形态水平显著相关(p p p = 0.004),并且与顺性男性相比,IPT更有可能经历性IPT (p p结论:IPT与自闭症成人潜在的严重心理健康结果相关。自闭症妇女和性别少数群体可能特别容易受到性IPT和不良后果的影响。对于所有自闭症成人,无论其诊断状态如何,都建议增加对IPT史和创伤后症状的筛查。Lay summary:为什么要做这项研究?许多自闭症患者都经历过人际创伤(ipt),比如性侵犯或身体攻击。这些可能导致精神健康方面的挑战,如创伤后应激障碍(PTSD)或分离(个人与其感知或自我意识的各个方面之间的脱节)。我们想更好地了解是什么让自闭症成年人更容易经历创伤,以及创伤是如何影响他们的。这项研究的目的是什么?目的是了解是什么使自闭症患者更容易经历IPT和PTSD。我们还想知道IPT是否与PTSD或分离的高风险相关。研究人员做了什么?: 687名自闭症成年人填写了一份关于他们的创伤经历、创伤后应激障碍症状和分离症状的在线调查。我们分析了他们的反应,看看参与者报告经历不同类型创伤的频率,以及他们是否符合PTSD和临床分离的标准。然后,我们比较了不同性别的创伤经历和创伤后应激障碍的发病率,以及那些有和没有专业自闭症谱系障碍(ASD)诊断的人,并比较了有和没有经历过IPT的参与者的创伤后应激障碍的发病率和分离率。研究的结果是什么?在这项研究中,72%的自闭症成年人报告说他们经历过性侵犯,另一种不想要的性经历,或身体攻击。几乎一半(44%)符合PTSD的标准。大多数参与者(93%)还报告了高水平的基于精神的分离,32%的人报告了高水平的基于身体的分离(分离导致负面情绪被体验为身体问题,如头痛或行动困难)。经历过IPT的参与者几乎有两倍的可能符合创伤后应激障碍的标准,并且在分离的两项测量中得分更高。与顺性男性相比,顺性女性和性别少数群体更有可能经历IPT并符合PTSD的标准。有和没有专业ASD诊断的参与者没有差异。这些发现对已知的知识有什么补充?先前大多数关于自闭症患者创伤和PTSD的研究都是在儿童身上进行的,并没有专门研究IPT,也没有根据性别或ASD诊断对患者进行比较。据我们所知,这是第一个关于自闭症成人创伤后分离的研究。研究中有哪些潜在的弱点?这项研究的结果可能并不适用于所有的自闭症成年人。本来可以参与的人可能对这个话题不感兴趣,可能没有看到研究广告,因此不知道这项研究,或者可能没有时间或精力参与。如果不同群体的自闭症患者参与得更多,结果可能会有所不同。这些发现将如何帮助现在或将来的自闭症成年人?如果帮助自闭症患者的专业人士不与他们谈论创伤,受创伤的自闭症成年人可能得不到正确的支持。这项研究可以鼓励专业人士对更多的自闭症患者进行心理创伤筛查,尤其是女性和少数性别群体。
{"title":"Interpersonal Trauma and Posttraumatic Stress in Autistic Adults.","authors":"Katherine E Reuben,&nbsp;Christopher M Stanzione,&nbsp;Jenny L Singleton","doi":"10.1089/aut.2020.0073","DOIUrl":"https://doi.org/10.1089/aut.2020.0073","url":null,"abstract":"<p><strong>Background: </strong>Many autistic adults report interpersonal traumas (IPTs) such as physical or sexual assault, which are often associated with posttraumatic stress and dissociation. Factors such as gender might make autistic individuals particularly vulnerable to experiencing IPT and negative posttraumatic symptoms.</p><p><strong>Methods: </strong>In this study, 687 self-identified autistic adults completed an online survey on their traumatic experiences and mental health symptoms.</p><p><strong>Results: </strong>Seventy-two percent of participants reported experiencing sexual assault, other unwanted or uncomfortable sexual experiences, or physical assault. Forty-four percent of participants met the criteria for posttraumatic stress disorder (PTSD), including 50% of those who had experienced IPT and 28% of those who had not (odds ratio = 2.50; 95% confidence interval 1.74-3.60). IPT was also significantly associated with higher levels of psychoform (<i>p</i> < 0.001) and somatoform (<i>p</i> < 0.001) dissociation. Autistic cisgender women and gender minorities experienced a significantly higher number of traumas (<i>p</i> = 0.004) and were significantly more likely than cisgender men to experience sexual IPT (<i>p</i> < 0.001) and meet the criteria for PTSD (<i>p</i> < 0.001). There were no significant differences between autistic individuals with and without a professional autism spectrum disorder (ASD) diagnosis.</p><p><strong>Conclusions: </strong>IPT is associated with potentially severe mental health outcomes for autistic adults. Autistic women and gender minorities may be particularly vulnerable to sexual IPT and adverse outcomes. Increased screening for a history of IPT and posttraumatic symptoms is recommended for all autistic adults regardless of ASD diagnosis status.</p><p><strong>Lay summary: </strong><b>Why was this study done?:</b> Many autistic people experience interpersonal traumas (IPTs) such as sexual or physical assault. These can lead to mental health challenges such as posttraumatic stress disorder (PTSD) or dissociation (a disconnection between individuals and aspects of their perceptions or sense of self). We wanted to better understand what might make autistic adults more likely to experience trauma and how it affects them.<b>What was the purpose of this study?:</b> The purpose was to understand what might make autistic people more at risk of experiencing IPT and PTSD. We also wanted to know if IPT is associated with a higher risk of PTSD or dissociation.<b>What did the researchers do?:</b> Six hundred eighty-seven autistic adults filled out an online survey about their traumatic experiences, PTSD symptoms, and dissociation symptoms. We analyzed their responses to see how often participants reported experiencing different types of trauma and whether they met the criteria for PTSD and clinical dissociation. We then compared trauma experiences and PTSD rates across genders and those with and without a professio","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"3 3","pages":"247-256"},"PeriodicalIF":0.0,"publicationDate":"2021-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992908/pdf/aut.2020.0073.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10489788","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}
引用次数: 19
"They looked at me as a person, not just a diagnosis": A qualitative study of patient and parent satisfaction with a specialized primary care clinic for autistic adults. “他们把我看作是一个人,而不仅仅是一个诊断”:一项对自闭症成人专门初级保健诊所患者和家长满意度的定性研究。
Pub Date : 2021-06-14 DOI: 10.1089/AUT.2020.0082
Brittany N. Hand, Daniel Gilmore, Lauren Harris, A. Darragh, C. Hanks, D. Coury, S. Moffatt-Bruce, J. Garvin
BackgroundAutistic adults have complex physical and mental healthcare needs that necessitate specialized approaches to healthcare. One promising approach is to embed providers with specialized training or specialty clinics for autistic adults within general primary care facilities. We previously found that autistic adults who received their healthcare through one specialty clinic designed with and for autistic adults had better continuity of care and more preventive service utilization than national samples of autistic adults.ObjectiveTo characterize factors that increased or decreased satisfaction with healthcare received through a specialty clinic for autistic adults.MethodsWe conducted 30-60-minute semi-structured interviews with autistic adults (N=9) and parents of autistic adults (N=12). We conducted an inductive thematic analysis, using a phenomenological approach.ResultsFactors that increased participants' satisfaction included: (1) receiving personalized care from the provider; (2) spending quality time with the provider; and (3) having strong, positive patient-provider relationships. Factors that decreased participants' satisfaction included: (1) lack of access to services due to scarcity of trained providers; (2) difficulty at times communicating with the provider; and (3) system-level barriers such as policies, practices, or procedures.ConclusionOur findings highlight the importance of providers using personalized approaches to care that meet patients' sensory and communication needs and spending quality time with patients to establish strong, positive patient-provider relationships. Our findings also underscore the critical scarcity of healthcare providers who are trained to deliver care for the growing population of autistic adults.
自闭症成人有复杂的生理和心理保健需求,需要专门的保健方法。一个很有希望的方法是在普通初级保健机构中为自闭症成人提供专业培训或专业诊所。我们之前发现,通过一家专门为自闭症成人设计的诊所接受医疗保健的自闭症成人比全国自闭症成人样本有更好的护理连续性和更多的预防服务利用率。目的探讨提高或降低成人自闭症患者专科诊所医疗服务满意度的因素。方法对自闭症成人(N=9)和自闭症成人家长(N=12)进行30-60分钟的半结构化访谈。我们使用现象学方法进行了归纳性主题分析。结果提高被试满意度的因素包括:(1)接受提供者的个性化护理;(2)与提供者共度美好时光;(3)建立牢固、积极的医患关系。降低参与者满意度的因素包括:(1)由于缺乏训练有素的提供者而缺乏获得服务的机会;(2)有时与提供商沟通困难;(3)系统级障碍,如政策、实践或程序。结论:我们的研究结果强调了提供者使用个性化的方法来满足患者的感官和沟通需求,并花时间与患者建立牢固、积极的医患关系的重要性。我们的研究结果还强调了医疗保健提供者的严重短缺,这些医疗保健提供者受过培训,可以为不断增长的自闭症成年人提供护理。
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引用次数: 4
Clarifying Self-Report Measures of Social Anxiety and Obsessive-Compulsive Disorder to Improve Reporting for Autistic Adults. 澄清社交焦虑和强迫症的自我报告测量,以改善自闭症成人的报告。
Pub Date : 2021-06-01 DOI: 10.1089/aut.2019.0064
Xie Yin Chew, Dawn-Joy Leong, Kuan Min Khor, Giles Ming Yee Tan, Ker-Chiah Wei, Iliana Magiati

Background: Phenotypic similarities exist between autism-related experiences and anxiety (especially social anxiety and obsessive-compulsive disorder [OCD]), making it difficult for autistic people to self-report their experiences using existing measures developed for nonautistic adults. We examined whether clarifications aiming to tease out autism-related experiences from social anxiety or OCD in self-report questionnaires would influence autistic and nonautistic participants' ratings.

Methods: Two autistic consultants and two experienced clinicians were consulted to develop item clarifications aiming to disentangle autistic from anxiety experiences for two questionnaires: the Social Anxiety Questionnaire (SAQ) and the Padua Inventory (PI) for OCD. Autistic adults (n = 50) and nonautistic university students with higher (n = 81) and lower autistic traits (ATs; n = 104) completed the original questionnaire followed by the clarified questionnaire items online.

Results: For social anxiety, there were few significant differences between the original and clarified item and total SAQ scores. For OCD, participants reported significantly lower scores for the OCD-clarified PI items than for the original items and the autism-clarified items. Larger original-clarified PI mean item differences were noted in items describing repetitive behaviors, "obsessional" thoughts, and contamination fears. Similar patterns of differences were found in autistic and nonautistic participants with higher and lower ATs, but differences were often larger in the autistic group.

Conclusion: The SAQ in its original form appears to be an appropriate measure for autistic people to self-report social anxiety. However, autistic people appeared to complete the original PI items to reflect, to some extent, their autism-related experiences, rather than the originally intended OCD symptoms. Thus, the original OCD self-report ratings were inflated using the PI. Professionals should therefore clarify the intended meanings of different items of the PI to ensure more accurate and relevant ratings of OCD symptoms in autistic people.

Lay summary: Why was this study done?: Autistic people and people with higher autistic traits (ATs) often experience higher rates of anxiety. Anxiety measures developed for the general population may not be appropriate or accurate for measuring anxiety in autistic people. We investigated whether clarifying items in existing self-report questionnaires to tease out anxiety from autistic experiences would influence the way autistic adults self-report their social anxiety and obsessive-compulsive disorder (OCD) symptoms, and if so in what ways. We also wanted to know whether providing these item clarifications would affect the ratings of nonautistic individuals with varying rates of ATs to the same extent.What did the research

背景:自闭症相关经历与焦虑(尤其是社交焦虑和强迫症[OCD])之间存在表型相似性,这使得自闭症患者很难使用现有的针对非自闭症成年人的测量方法来自我报告他们的经历。我们研究了在自我报告问卷中从社交焦虑或强迫症中梳理出自闭症相关经历的澄清是否会影响自闭症和非自闭症参与者的评分。方法:通过咨询2名自闭症咨询师和2名经验丰富的临床医生,对社交焦虑问卷(SAQ)和强迫症帕多瓦量表(PI)两份问卷进行项目澄清,旨在帮助自闭症患者摆脱焦虑体验。自闭症成人(n = 50)和非自闭症大学生(n = 81)具有较高和较低的自闭症特征(ATs;N = 104)先完成原始问卷,然后在线完成澄清后的问卷项目。结果:在社交焦虑方面,原题与澄清题与总分之间差异不显著。对于OCD,参与者报告的OCD澄清PI项目的得分明显低于原始项目和自闭症澄清项目。在描述重复行为、“强迫性”思想和污染恐惧的项目中,更大的原始澄清PI平均项目差异被注意到。在自闭症和非自闭症参与者中也发现了类似的差异模式,但自闭症组的差异通常更大。结论:原始形式的SAQ似乎是自闭症患者自我报告社交焦虑的合适方法。然而,自闭症患者完成最初的PI项目似乎在一定程度上反映了他们与自闭症相关的经历,而不是最初预期的强迫症症状。因此,原始的强迫症自我报告等级被PI夸大了。因此,专业人员应澄清个人情感指数不同项目的预期含义,以确保对自闭症患者的强迫症症状进行更准确和相关的评分。Lay summary:为什么要做这项研究?自闭症患者和具有更高自闭症特征的人通常会经历更高的焦虑率。为一般人群开发的焦虑测量方法可能不适合或不准确地测量自闭症患者的焦虑。我们调查了澄清现有自我报告问卷中的条目以梳理自闭症经历中的焦虑是否会影响自闭症成年人自我报告其社交焦虑和强迫症(OCD)症状的方式,如果会的话,会以何种方式影响。我们还想知道,提供这些项目的澄清是否会在相同程度上影响具有不同at率的非自闭症个体的评分。研究人员做了什么?我们最初咨询了两名自闭症成年人和两名具有治疗自闭症成年人和同时出现精神健康问题经验的临床医生。我们选择了两种测量方法:社交焦虑问卷(SAQ)用于社交焦虑症状和帕多瓦量表用于强迫症症状。咨询师确定了社交焦虑和强迫症项目,这些项目可能会被自闭症患者以不同的方式解释或体验,并提出了澄清它们的方法,使它们的含义更清晰。接下来,50名自闭症患者和185名非自闭症大学生参加了我们的在线研究。非自闭症参与者被分为高智商组和低智商组。参与者先完成原始的社交焦虑和强迫症问卷,然后再完成两份问卷的澄清版。研究的结果是什么?对于社交焦虑,我们发现,当参与者使用有或没有澄清的测量方法时,他们的评分只有很小的差异。这在自闭症和非自闭症参与者中都是正确的。对于强迫症症状,在我们提供了解释之后,自闭症患者对许多项目的强迫症评分明显降低,特别是对描述重复行为、“强迫性”想法和污染恐惧的项目。这一发现表明,在最初的问卷中,自闭症患者可能也在评估他们与自闭症相关的经历,而不仅仅是问卷试图测量的强迫症经历或症状。我们发现,在ATs较高和较低的非自闭症参与者中,原始项目和澄清项目评分之间也存在类似的差异。然而,这种差异在自闭症参与者中更为普遍和明显。这些发现对已知的知识有什么补充?这些发现表明,最初的自我报告焦虑测量可能需要澄清,以便自闭症成年人能够更好地捕捉和评估他们的焦虑,而不是他们与自闭症相关的经历。研究中有哪些潜在的弱点?我们只使用了两份焦虑问卷,所以这些发现可能适用于也可能不适用于其他可用的强迫症或社交焦虑问卷。 此外,我们提供的解释可能并不代表所有自闭症患者的经历,可能还有其他更好的方法来解释这些问题。在本研究中我们也进行了很多项目比较,所以有可能有些发现是偶然的。这些发现将如何帮助现在或将来的自闭症成年人?我们的研究结果可以帮助改善临床访谈和焦虑问卷的使用,使其更准确。他们还可以帮助临床医生认识到提出澄清性问题的重要性,以确保他们更好地捕捉自闭症成年人的焦虑经历。
{"title":"Clarifying Self-Report Measures of Social Anxiety and Obsessive-Compulsive Disorder to Improve Reporting for Autistic Adults.","authors":"Xie Yin Chew,&nbsp;Dawn-Joy Leong,&nbsp;Kuan Min Khor,&nbsp;Giles Ming Yee Tan,&nbsp;Ker-Chiah Wei,&nbsp;Iliana Magiati","doi":"10.1089/aut.2019.0064","DOIUrl":"https://doi.org/10.1089/aut.2019.0064","url":null,"abstract":"<p><strong>Background: </strong>Phenotypic similarities exist between autism-related experiences and anxiety (especially social anxiety and obsessive-compulsive disorder [OCD]), making it difficult for autistic people to self-report their experiences using existing measures developed for nonautistic adults. We examined whether clarifications aiming to tease out autism-related experiences from social anxiety or OCD in self-report questionnaires would influence autistic and nonautistic participants' ratings.</p><p><strong>Methods: </strong>Two autistic consultants and two experienced clinicians were consulted to develop item clarifications aiming to disentangle autistic from anxiety experiences for two questionnaires: the Social Anxiety Questionnaire (SAQ) and the Padua Inventory (PI) for OCD. Autistic adults (<i>n</i> = 50) and nonautistic university students with higher (<i>n</i> = 81) and lower autistic traits (ATs; <i>n</i> = 104) completed the original questionnaire followed by the clarified questionnaire items online.</p><p><strong>Results: </strong>For social anxiety, there were few significant differences between the original and clarified item and total SAQ scores. For OCD, participants reported significantly lower scores for the OCD-clarified PI items than for the original items and the autism-clarified items. Larger original-clarified PI mean item differences were noted in items describing repetitive behaviors, \"obsessional\" thoughts, and contamination fears. Similar patterns of differences were found in autistic and nonautistic participants with higher and lower ATs, but differences were often larger in the autistic group.</p><p><strong>Conclusion: </strong>The SAQ in its original form appears to be an appropriate measure for autistic people to self-report social anxiety. However, autistic people appeared to complete the original PI items to reflect, to some extent, their autism-related experiences, rather than the originally intended OCD symptoms. Thus, the original OCD self-report ratings were inflated using the PI. Professionals should therefore clarify the intended meanings of different items of the PI to ensure more accurate and relevant ratings of OCD symptoms in autistic people.</p><p><strong>Lay summary: </strong><b>Why was this study done?:</b> Autistic people and people with higher autistic traits (ATs) often experience higher rates of anxiety. Anxiety measures developed for the general population may not be appropriate or accurate for measuring anxiety in autistic people. We investigated whether clarifying items in existing self-report questionnaires to tease out anxiety from autistic experiences would influence the way autistic adults self-report their social anxiety and obsessive-compulsive disorder (OCD) symptoms, and if so in what ways. We also wanted to know whether providing these item clarifications would affect the ratings of nonautistic individuals with varying rates of ATs to the same extent.<b>What did the research","PeriodicalId":72338,"journal":{"name":"Autism in adulthood : challenges and management","volume":"3 2","pages":"129-146"},"PeriodicalIF":0.0,"publicationDate":"2021-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1089/aut.2019.0064","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10494348","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}
引用次数: 2
A Cognitive Behavioral Intervention for Driving for Autistic Teens and Adults: A Pilot Study. 自闭症青少年和成人驾驶的认知行为干预:一项试点研究。
Pub Date : 2021-06-01 DOI: 10.1089/aut.2020.0009
Mary J Baker-Ericzén, Lauren Smith, Anh Tran, Kathleen Scarvie

Background: For many autistic individuals approaching adulthood, interventions to promote skills toward independence are lacking. Driving is an important ability to cultivate as it may be a critical step to attaining independence, securing and maintaining work, and fostering relationships. Only about one third of able autistic individuals drive independently, and fear to drive is a common reason for not driving.

Methods: This initial pilot study was a 3-month open trial to investigate the feasibility, acceptability, and initial estimates of outcomes for the newly developed Cognitive Behavioral Intervention for Driving (CBID) intervention, a manualized curriculum to enhance executive functioning (EF) and emotional regulation (ER) skill development for driving, combined with individualized commentary-based driving simulator practice, in autistic teens and adults within a community research environment. Nineteen participants received the CBID intervention in 1.5-hour group sessions for 10 weeks, across two cohorts, with approximately five individualized driving simulator sessions. Data were collected on anxiety symptoms, driving cognitions, driving attitudes, and simulated driving performance at pre- and post-intervention assessments.

Results: Program completion rate was 81%. Participants and parents rated both the intervention and simulator practice sessions with high satisfaction. All the participants (100%) reported both a positive attitude change (interest toward driving) and a desire to drive in the future at the post-intervention assessment. Significant changes occurred for driving cognitions, attitudes, and behaviors, and 47% of participants obtained a driver's permit or license by 2 months post-intervention.

Conclusions: For autistic individuals, the CBID intervention appeared to directly impact the pursuit toward driving goals by both increasing driving attitudes and behaviors and reducing anxiety/apprehension. This highlights the need for driving intervention programs designed specific to autistic teens/adults that focus on EF and ER skills coupled with individualized simulator practice. CBID could be provided in community services to increase the number of autistic individuals driving.

Lay summary: Why was this study done?: Driving contributes greatly to independence in many teens and adults. Anxiety can act as a barrier to that independence by affecting driving attitudes, ability and performance. Autistic individuals are often affected by anxiety, executive functioning, and emotion regulation challenges. Previous studies show that virtual reality training and Cognitive Behavioral Therapy (CBT), separately, can reduce driving anxiety in autistic individuals and support driving skills. However, to date, no studies have developed and tested a manualized intervention specific to driving that combines such methods.W

背景:对于许多接近成年的自闭症个体,缺乏促进独立技能的干预措施。驾驶是一项需要培养的重要能力,因为它可能是获得独立、确保和维持工作以及培养人际关系的关键一步。只有大约三分之一有能力的自闭症患者能独立开车,害怕开车是他们不开车的一个常见原因。方法:这项初步的试点研究是一项为期3个月的开放试验,旨在调查新开发的驾驶认知行为干预(CBID)干预的可行性、可接受性和初步估计结果。CBID是一种手动课程,旨在提高驾驶执行功能(EF)和情绪调节(ER)技能的发展,结合个性化的基于评论的驾驶模拟器练习,在社区研究环境中针对自闭症青少年和成人。19名参与者在两个队列中接受了为期10周的1.5小时的CBID干预,其中大约有5个个性化的驾驶模拟器。在干预前和干预后评估中收集焦虑症状、驾驶认知、驾驶态度和模拟驾驶表现的数据。结果:项目完成率为81%。参与者和家长对干预和模拟练习的满意度都很高。在干预后的评估中,所有参与者(100%)都报告了积极的态度变化(对驾驶的兴趣)和未来驾驶的愿望。在驾驶认知、态度和行为方面发生了显著的变化,47%的参与者在干预后2个月获得了驾驶执照。结论:对于自闭症个体,CBID干预似乎通过增加驾驶态度和行为以及减少焦虑/忧虑来直接影响对驾驶目标的追求。这突出了针对自闭症青少年/成人的干预项目的必要性,这些项目注重EF和ER技能,并结合个性化的模拟器实践。可以在社区服务中提供CBID,以增加自闭症患者驾驶的数量。Lay summary:为什么要做这项研究?对于许多青少年和成年人来说,开车极大地促进了他们的独立性。焦虑会影响驾驶态度、能力和表现,从而成为这种独立性的障碍。自闭症患者经常受到焦虑、执行功能和情绪调节挑战的影响。先前的研究表明,虚拟现实训练和认知行为疗法(CBT)分别可以减少自闭症患者的驾驶焦虑,并提高驾驶技能。然而,到目前为止,还没有研究开发和测试一种针对驾驶的人工干预,将这些方法结合起来。这项研究的目的是什么?本研究的目的是开发和测试一种小组干预,称为驾驶认知行为干预(CBID),结合个性化,有指导的驾驶模拟器练习,以帮助减少恐惧,提高对驾驶的认知,态度和表现。该研究调查了以下问题:1)自闭症患者是否积极参与CBID?2)自闭症参与者是否喜欢CBID?3)自闭症参与者在参加CBID后是否比参加项目前更愿意开车?研究人员做了什么?在开发了社区成员参与的CBID干预后,研究人员对19名注册参与者进行了2个干预组和个性化驾驶模拟器课程。小组干预的重点是在10周内进行1.5小时的训练,以及5.1小时的驾驶模拟器训练,以加强执行功能和情绪调节技能。研究人员比较了干预前后参与者的焦虑水平、驾驶认知、态度和表现。研究的结果是什么?大多数参与者完成了该计划(81%),所有参与者(100%)对小组和模拟器实践感到满意。所有(100%)的参与者都改变了对驾驶的态度。完成CBID后,参与者在驾驶模拟器上对驾驶有了更高的积极想法,对驾驶的态度也更好了,驾驶错误(如超速、碰撞、过马路)也更少了。几乎一半(47%)的参与者在干预后2个月获得了驾驶执照或执照。这些发现对已知的知识有什么补充?本研究增加了一种新的综合方法,CBID,用于解决驾驶焦虑或忧虑。它提供了将执行功能技能与传统认知行为疗法相结合的价值的初步发现,以提高驾驶准备。 研究中潜在的弱点是什么?这项研究的样本量很小,主要是白人男性参与者。这限制了将结果推广到具有代表性的不同人群。它也没有对照组,也没有使用随机化,这意味着目前的结果不能被解释为因果关系。没有关于参与者在CBID后2个月之后获得许可证/执照的信息,因此不清楚是否有些参与者需要更多的时间来获得许可证。没有后续研究来了解参与者是否继续感到加班驾驶很舒服。这些发现将如何帮助现在或将来的自闭症成年人?这项研究表明,将虚拟现实训练和认知行为疗法结合到一个驾驶准备项目中是可能的。新的CBID计划可以通过解决自闭症成年人需要准备驾驶的多个方面来帮助他们。由于该研究采用了以前测试过的策略,招募了一个社区样本,对程序进行了手动操作,并使用了服务方法,因此它的设计目的是为了在其他社区环境中广泛推广。
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引用次数: 5
#Bias: The Opportunities and Challenges of Surveys That Recruit and Collect Data of Autistic Adults Online. 偏见:在线招募和收集自闭症成年人数据的调查的机遇和挑战。
Pub Date : 2021-06-01 Epub Date: 2021-06-07 DOI: 10.1089/aut.2020.0031
Eric Rubenstein, Sarah Furnier

Internet-based online surveys are a crucial tool for researchers to learn about the understudied and often overlooked population of autistic adults. The recruitment and administration of online surveys can be cheaper, quicker, and have a wider reach compared with more traditional in-person methods. As online surveys become more prevalent, it is important to place strengths in the context of limitations and biases that can arise when recruiting and administering surveys online. In this perspective, we discuss two common issues that often appear in studies that use online tools to recruit and administer surveys to autistic adults and nonautistic volunteers: selection bias and sample identifiability. Selection bias is the distortion in effect estimates (e.g., relative risk, risk ratio, incidence rate) resulting from the factors that influence why a person chose to participate or how the researcher recruits and selects participants in a study. Sampling identifiability is the ability (or inability) to quantify and define the population of interest. We use a case example of an online survey study of suicidal ideation in autistic adults and describe how issues in selection bias and sample identifiability arise and may lead to challenges unique to studying autistic adults. We conclude with recommendations to improve the quality and utility of online survey research in autistic adults. Using online resources to recruit and collect data on autistic adults is an incredible tool with great potential; yet, authors need to consider the limitations, potential biases, and tools to overcome systematic error at each stage of the study.

Lay summary: What is the purpose of this article?: Our purpose was to describe challenges in conducting and analyzing data from surveys of autistic adults, recruited and completed online.What is already known on the topic?: Health outcomes for autistic adults are understudied by crucial areas of autism research. While researchers are interested in the outcomes of autistic adults, this type of research is difficult because many autistic adults are not formally diagnosed, so not available to recruit for studies through clinic registries. Furthermore, study participation can be a long, inconvenient, and stressful process. It is not surprising then that we are seeing internet surveys of autistic adults become a popular tool to reach this population. We wanted to offer an overview and recommendations of these issues to researchers and people who read research about topics pertaining to autistic adults.What are the perspectives of the authors?: We are epidemiologists at Boston University and the University of Wisconsin-Madison. We both conduct research centered in improving health and well-being for autistic people across the life span. As people who study research methods, we have seen a lot of new research using survey methods. This research is intriguing, but all too often the articles

基于互联网的在线调查是研究人员了解研究不足且经常被忽视的自闭症成年人群体的重要工具。与更传统的面对面调查方法相比,在线调查的招聘和管理可以更便宜、更快、覆盖面更广。随着在线调查越来越普遍,重要的是要将优势放在招聘和管理在线调查时可能出现的局限性和偏见的背景下。从这个角度来看,我们讨论了在使用在线工具招募和管理自闭症成年人和非自闭症志愿者调查的研究中经常出现的两个常见问题:选择偏见和样本可识别性。选择偏差是指影响一个人为什么选择参与或研究人员如何招募和选择研究参与者的因素导致的效果估计(如相对风险、风险比、发病率)的失真。抽样可识别性是指能够(或不能)量化和定义感兴趣的群体。我们以一项关于自闭症成年人自杀意念的在线调查研究为例,描述了选择偏见和样本可识别性问题是如何产生的,并可能导致研究自闭症成年人特有的挑战。最后,我们提出了提高自闭症成年人在线调查研究质量和实用性的建议。利用在线资源招募和收集自闭症成年人的数据是一种极具潜力的令人难以置信的工具;然而,作者需要考虑研究的每个阶段的局限性、潜在的偏见和克服系统错误的工具。概述:这篇文章的目的是什么?:我们的目的是描述在进行和分析在线招募和完成的自闭症成年人调查数据方面面临的挑战。关于这个话题已经知道了什么?:自闭症研究的关键领域对自闭症成年人的健康结果研究不足。虽然研究人员对自闭症成年人的结果感兴趣,但这类研究很困难,因为许多自闭症成年人没有被正式诊断,因此无法通过临床登记招募进行研究。此外,参与学习可能是一个漫长、不方便、压力大的过程。因此,我们看到对自闭症成年人的互联网调查成为接触这一人群的流行工具也就不足为奇了。我们想向研究人员和阅读有关自闭症成年人主题研究的人提供这些问题的概述和建议。作者的观点是什么?:我们是波士顿大学和威斯康星大学麦迪逊分校的流行病学家。我们都进行了以改善自闭症患者一生的健康和福祉为中心的研究。作为研究研究方法的人,我们看到了许多使用调查方法的新研究。这项研究很有趣,但文章往往需要更多的信息,这样我们才能确信研究是高质量的。我们希望分享改进这类研究的方法,并帮助人们了解在线调查研究的优势和局限性。作者推荐什么?:我们为这一领域的研究人员提供了一些考虑因素。(1) 尽可能清楚地说明你为进行研究所采取的步骤。(2) 具体说明你打算学习谁以及你最终学习了谁。(3) 介绍参与者的人口统计和特点。(4) 如果可能的话,考虑使用数据分析方法来解释选择偏差和样本可识别性问题。(5) 不要发表不支持你的研究结果的言论。(6) 承认我们正处于研究自闭症成年人的开端。(7) 倡导为自闭症成年人的研究提供更多资金。这些建议现在或将来将如何帮助自闭症成年人?:在线调查是研究人员产生假设并与更广泛参与者联系的重要工具。然而,在线调查具有独特的方法挑战。我们希望这一观点在在线调查中引发偏见和误解的话题,研究人员继续开展有效和有意义的工作,这对改善自闭症成年人的生活至关重要。
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引用次数: 14
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Autism in adulthood : challenges and management
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