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How healthcare systems are experienced by autistic adults in the United Kingdom: A meta-ethnography. 英国自闭症成人对医疗系统的体验:元民族志。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-03-11 DOI: 10.1177/13623613241235531
Sarah Radev, Megan Freeth, Andrew R Thompson

Lay abstract: Autistic adults are more likely to experience mental and physical health difficulties, and yet can find it difficult to get the support that they need. A meta-ethnographic approach was used to review the existing research on autistic adults' experiences of accessing healthcare. Four databases were searched for qualitative and mixed-method studies which looked at the experiences of autistic adults who did not also have a learning disability when using healthcare services in the United Kingdom. Fifteen papers met the criteria to be included, and seven steps were used to analyse the information and develop new themes. Three main themes were identified: Professionals' lack of knowledge can be damaging, Need to reduce processing demands and Adaptation to improve engagement. This review highlights how damaging misdiagnosis, inappropriate treatment, overwhelming environments and systems that are difficult to access can have on the well-being of autistic adults. Limited knowledge and understanding about autism knowledge among healthcare professionals along with autistic adult's own communication and sensory differences indicate that there is a need for improved training developed with autistic adults and adaptations.

内容提要:自闭症成人更有可能遇到心理和生理健康方面的困难,但却很难获得所需的支持。我们采用了元人种学的方法来回顾现有的关于自闭症成人获得医疗保健的经历的研究。我们在四个数据库中搜索了有关英国非学习障碍自闭症成人在使用医疗保健服务时的经历的定性和混合方法研究。有 15 篇论文符合纳入标准,我们采用了七个步骤对信息进行分析,并确定了新的主题。最终确定了三大主题:专业人员缺乏知识可能会造成损害、需要减少处理需求以及进行调整以提高参与度。本综述强调了误诊、不恰当的治疗、难以承受的环境和难以使用的系统对成年自闭症患者的福祉有多大的损害。医疗保健专业人员对自闭症知识的了解和理解有限,加上自闭症成人自身在沟通和感官方面的差异,表明有必要改进针对自闭症成人的培训和适应。
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引用次数: 0
Remembering the future; prospective memory across the autistic adult's life span. 记住未来;自闭症成人一生中的前瞻性记忆。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-01-19 DOI: 10.1177/13623613231225489
Annabeth P Groenman, Carolien Torenvliet, Tulsi A Radhoe, Joost A Agelink van Rentergem, Wikke van der Putten, Mareike Altgassen, Hilde M Geurts

Lay abstract: What is already known: Prospective memory is an important function for daily living. It is the cognitive function that helps you remember that you are meeting your friend for coffee at 2 pm tomorrow, or that you need to take your vitamins after breakfast. This cognitive function is particularly important in autistic adults, but how prospective memory is associated with increasing age, we currently do not know.What this paper adds: Although performance on experimental tasks that measure prospective memory decreases with age, this pattern is similar in autistic and non-autistic adults. No age effects were found for tasks that were performed outside the lab. Autistic adults and non-autistic adults perform similarly on prospective memory, and this performance remains similar when autistic and non-autistic adults age.Implications for practice, research, or policy: While our results show that prospective memory decreased with increasing age, our results do point to parallel development of prospective memory in autistic and non-autistic adults. This finding serves as a reassurance for those individuals concerned that older autistic individuals might show quicker cognitive decline.

内容提要:众所周知:前瞻性记忆是日常生活中的一项重要功能。它是一种认知功能,可以帮助您记住明天下午 2 点要和朋友一起喝咖啡,或者早餐后需要服用维生素。这种认知功能对于患有自闭症的成年人尤为重要,但前瞻性记忆与年龄增长的关系如何,我们目前还不得而知:虽然测量前瞻性记忆的实验任务的成绩会随着年龄的增长而下降,但这种模式在自闭症和非自闭症成人中是相似的。在实验室外完成的任务没有发现年龄效应。自闭症成人和非自闭症成人在前瞻性记忆方面的表现相似,而且当自闭症成人和非自闭症成人的年龄增长时,这种表现仍然相似:虽然我们的研究结果表明,随着年龄的增长,前瞻性记忆力会下降,但我们的研究结果确实表明,自闭症成人和非自闭症成人的前瞻性记忆力发展是平行的。对于那些担心老年自闭症患者的认知能力会衰退得更快的人来说,这一发现无疑是一颗定心丸。
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引用次数: 0
Everyday executive function issues from the perspectives of autistic adolescents and their parents: Theoretical and empirical implications. 从自闭症青少年及其父母的角度看日常执行功能问题:理论与实证意义。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-01-19 DOI: 10.1177/13623613231224093
Lorcan Kenny, Anna Remington, Elizabeth Pellicano

Lay abstract: Autism researchers have a long-time interest in a set of skills called executive function. These skills include planning, inhibition, and switching between one activity and another. There was a theory that these skills explained the social and thinking difficulties autistic people might have. After years of study into this, the evidence is confusing and contradictory. Autistic people tend to report struggling quite a lot with these skills. Yet, when researchers test these skills, they do not tend to find such big difficulties. In this study, we spoke to 12 autistic teenagers and seven of their mothers about this. We asked them what they thought about their own, or their child's, executive function skills. We wanted to know about things they were good at and things they struggled with. They told us that their skills were very changeable from one context to the next and from one time to the next. According to their reports, their skills depended on how motivated they were by doing the task. Another thing that influenced their skills were how anxious they felt at the time they needed to use the skill. Finally, they told us that sometimes they think differently about how best to perform a task. We discuss what these insights mean for autism researchers who study these skills. In future, research should ask people about their experiences alongside testing their abilities in different contexts. Combining these information sources will give us a better understanding of autistic people's everyday skills as well as how best to support them.

内容提要:自闭症研究人员长期以来一直对一组被称为执行功能的技能感兴趣。这些技能包括计划、抑制和在一项活动和另一项活动之间切换。有一种理论认为,这些技能可以解释自闭症患者可能存在的社交和思维困难。经过多年的研究,这方面的证据令人困惑且相互矛盾。自闭症患者往往表示在这些技能上有很大的困难。然而,当研究人员对这些技能进行测试时,他们并没有发现如此大的困难。在这项研究中,我们采访了 12 名自闭症青少年和他们的 7 位母亲。我们询问了他们对自己或孩子执行功能技能的看法。我们想知道他们擅长什么,以及在哪些方面有困难。她们告诉我们,她们的能力在不同的环境和不同的时间变化很大。根据他们的报告,他们的技能取决于他们完成任务的动力有多大。另一个影响他们技能的因素是他们在需要使用技能时的焦虑程度。最后,他们告诉我们,有时他们会以不同的方式思考如何更好地完成任务。我们讨论了这些见解对研究这些技能的自闭症研究人员的意义。今后,研究人员在测试自闭症患者在不同情境下的能力时,应询问他们的经历。将这些信息来源结合起来,我们就能更好地了解自闭症患者的日常技能,以及如何为他们提供最好的支持。
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引用次数: 0
Brushing away barriers: The healing touch of art as an intervention in children with autism. 扫除障碍:艺术作为干预自闭症儿童的治疗手段。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-08-22 DOI: 10.1177/13623613241274845
Sheffali Gulati, Gautam Kamila, Biju Hameed, Charles Rjc Newton
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引用次数: 0
Employment profiles of autistic people: An 8-year longitudinal study. 自闭症患者的就业概况:一项为期 8 年的纵向研究。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-01-19 DOI: 10.1177/13623613231225798
Simon M Bury, Darren Hedley, Mirko Uljarević, Xia Li, Mark A Stokes, Sander Begeer

Lay abstract: Autistic adults experience difficulties finding and keeping employment. However, research investigating reasons that might explain this difficulty produce mixed results. We gave a survey to 2449 autistic adults and used a statistic method to group them based on their employment status over 8 years. We identified four employment groups that best captured the experiences of autistic adults; this included a group that experienced stable unemployment, a group that experienced stable employment, a group that had high employment that reduced over time, and a group whose employment increased over the 8 years. Further analysis showed that those with fewer autistic traits, younger age, male gender, higher education, later diagnosis age and no co-occurring conditions were more likely to have stable employment. People whose employment changed over time were more likely to have a higher level of education than the stable unemployment group, and those in the increasing employment group were younger age and had no co-occurring conditions. These findings help us better understand that not all autistic adults' experiences of employment are the same, which helps focus where employment programmes and support may be most needed, for example, people who identify as women or have a co-occurring condition.

内容提要:患有自闭症的成年人在找工作和保住工作方面都会遇到困难。然而,对可能解释这种困难的原因的研究结果不一。我们对 2449 名成年自闭症患者进行了调查,并使用统计方法根据他们 8 年来的就业状况对他们进行了分组。我们确定了最能反映成年自闭症患者经历的四个就业群体,其中包括经历过稳定失业的群体、经历过稳定就业的群体、高就业率但随着时间推移就业率下降的群体,以及在 8 年中就业率上升的群体。进一步的分析表明,自闭症特征较少、年龄较小、性别为男性、受教育程度较高、确诊年龄较晚以及没有并发症的人更有可能获得稳定就业。与稳定失业组相比,就业随时间发生变化的人更有可能拥有更高的教育水平,而就业增加组中的人年龄更小,也没有并发症。这些发现有助于我们更好地了解,并非所有自闭症成年人的就业经历都是相同的,这有助于将重点放在最需要就业计划和支持的人群上,例如,女性自闭症患者或有并发症的自闭症患者。
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引用次数: 0
The Gestalt of functioning in autism revisited: First revision of the International Classification of Functioning, Disability and Health Core Sets. 重新审视自闭症的功能格式塔:国际功能、残疾和健康分类核心集的首次修订。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-13 DOI: 10.1177/13623613241228896
Sven Bölte, Lovisa Alehagen, Melissa H Black, John Hasslinger, Elina Wessman, Karl Lundin Remnélius, Peter B Marschik, Emily D'Arcy, Susanna Crowson, Megan Freeth, Andreas Seidel, Sonya Girdler, Eric Zander

Lay abstract: Autistic people experience individual strengths and challenges as well as barriers and facilitators in their environment. All of these factors contribute to how well autistic people can cope in everyday life, fulfill the roles they choose, and meet their needs. The World Health Organization has developed a system aiming to capture the many factors within people (like how someone thinks and feels) and outside of people (things around a person) that influence their daily living, called the International Classification of Functioning, Disability and Health. The International Classification of Functioning, Disability and Health can be used for different purposes in research and practice to assess people's situations and plan support measures. Previously in 2019, the International Classification of Functioning, Disability and Health was adapted to autism by developing so-called Core Sets, which are shorter International Classification of Functioning, Disability and Health versions for use in specific conditions. Here, we present the first revisions of the International Classification of Functioning, Disability and Health Core Sets for autism, based on research, development results, and community feedback. Some factors influencing daily life for autistic people were added to the Core Sets, and other factors deemed less relevant were removed. Changes were also made in Core Sets designed for different age groups (0-5, 6-16, and ⩾17 years). Particularly, contents for sensory processing (like smell, touch, seeing, hearing) were added. We recommend these updated Core Sets for future use in autism research and practice. These changes to the Core Sets after 4 years indicate that there should be ongoing updates based on research and experience from practice and involvement of stakeholders.

内容提要:自闭症患者会遇到个人的优势和挑战,以及环境中的障碍和促进因素。所有这些因素都会影响自闭症患者在日常生活中的应对能力、履行他们所选择的角色以及满足他们的需求。世界卫生组织开发了一套系统,旨在捕捉人体内(如一个人的想法和感受)和人体外(一个人周围的事物)影响其日常生活的诸多因素,即《国际功能、残疾和健康分类》。国际功能、残疾和健康分类》可用于研究和实践中的不同目的,以评估人们的状况并规划支持措施。在此之前的 2019 年,《国际功能、残疾和健康分类》通过开发所谓的 "核心集"(Core Sets)对自闭症进行了调整,这些核心集是更简短的《国际功能、残疾和健康分类》版本,用于特定条件。在此,我们根据研究、开发结果和社区反馈,介绍自闭症国际功能、残疾和健康分类核心集的首次修订。核心内容中增加了一些影响自闭症患者日常生活的因素,同时删除了其他被认为不太相关的因素。为不同年龄段(0-5 岁、6-16 岁和⩾17 岁)设计的核心内容也有所变化。特别是增加了感官处理(如嗅觉、触觉、视觉和听觉)的内容。我们推荐将这些更新的核心内容用于今后的自闭症研究和实践。4 年后核心内容的这些变化表明,应根据研究、实践经验和利益相关者的参与不断更新。
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引用次数: 0
Prevalence of autism in first-episode psychosis in two Hong Kong teaching hospitals. 香港两家教学医院首次发病的精神病患者中自闭症的患病率。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-06-13 DOI: 10.1177/13623613241259062
Terence Ty Kwok, Melody My Chan, Flora Ym Mo, Se-Fong Hung, Patrick Wl Leung, Kelly Yc Lai, Caroline Ks Shea

Lay abstract: Autistic features are commonly observed in children and adolescents with first-episode psychosis, but they are sometimes overlooked by clinicians and caregivers. By comprehensively examining the clinical profiles of 103 children and adolescents (below 18 years old) with first-episode psychosis and conducting the Autism Diagnostic Interview-Revised (the 'gold standard' autism diagnostic tool) with their primary caregivers, we showed that around 28% of patients with first-episode psychosis had a comorbid autism diagnosis, and boys were 3.57 times more likely to have first-episode psychosis-autism spectrum disorder comorbidity than girls. After administering the Autism Diagnostic Interview-Revised, we also observed that an additional 30% of patients with first-episode psychosis met the autism spectrum disorder diagnostic cut-off; their autism spectrum disorder symptoms were probably overshadowed by prodromal psychotic symptoms and left undetected before this study. The co-occurrence of autism and first-episode psychosis might be more common than we previously thought. Careful autism screening and assessment is highly recommended for clinicians working with patients with psychosis.

内容提要:自闭症特征常见于首次发病的精神病儿童和青少年,但有时会被临床医生和护理人员忽视。通过全面研究103名首次发病的精神病儿童和青少年(18岁以下)的临床特征,并与他们的主要照顾者一起进行自闭症诊断访谈-修订版("金标准 "自闭症诊断工具),我们发现约28%的首次发病的精神病患者合并有自闭症诊断,而男孩首次发病的精神病与自闭症谱系障碍合并的可能性是女孩的3.57倍。在进行《自闭症诊断访谈-修订版》(Autism Diagnostic Interview-Revised)后,我们还观察到,另有30%的首发精神病患者符合自闭症谱系障碍的诊断标准;他们的自闭症谱系障碍症状可能被前驱精神病症状所掩盖,在本研究之前未被发现。自闭症和首发精神病同时出现的情况可能比我们之前想象的更为普遍。强烈建议临床医生对精神病患者进行仔细的自闭症筛查和评估。
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引用次数: 0
School participation of autistic youths: The influence of youth, family and school factors. 自闭症青少年的学校参与:青少年、家庭和学校因素的影响。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-04 DOI: 10.1177/13623613231225490
Boya Li, David Heyne, Anke Scheeren, Els Blijd-Hoogewys, Carolien Rieffe

Lay abstract: School-aged youths have a basic human right to participate in educational and recreational activities at school. Yet, autistic youths are at high risk of being excluded from school and from school-based activities. It is important to understand how this occurs, to ensure that all autistic youths have opportunities to participate in school activities that are equal to the opportunities of their non-autistic peers. The present study investigated multiple influences on the school participation of autistic youths, including youth factors (age and autistic traits), family factors (parent education level and parental self-efficacy for supporting their child's schoolwork) and school factors (the impact of problems autistic youths experienced with the physical and social environments of school). Using an online survey, we gathered the views and experiences of the parents of 200 autistic youths aged between 4 and 16 years, in the Netherlands. We found that among the factors, only the impact of problems that autistic youths experienced with the physical environment of school was associated with their school participation. In particular, autistic youths who experienced greater difficulties with the physical environment of school had lower levels of school participation. Our findings highlight the pressing need to modify school environments to better accommodate the needs of autistic youths so that they can participate easily and comfortably.

内容提要:学龄青少年享有参加学校教育和娱乐活动的基本人权。然而,自闭症青少年被排斥在学校和校内活动之外的风险很高。为了确保所有自闭症青少年都能获得与非自闭症同龄人同等的参与学校活动的机会,我们有必要了解这种情况是如何发生的。本研究调查了自闭症青少年参与学校活动的多种影响因素,包括青少年因素(年龄和自闭症特征)、家庭因素(父母的教育水平和父母支持孩子完成学业的自我效能感)和学校因素(自闭症青少年在学校的物质和社会环境中遇到的问题的影响)。通过在线调查,我们收集了荷兰 200 名 4-16 岁自闭症青少年家长的观点和经验。我们发现,在这些因素中,只有自闭症青少年所经历的学校物理环境问题的影响与他们的学校参与度有关。特别是,在学校物质环境方面遇到困难较多的自闭症青少年的学校参与度较低。我们的研究结果突出表明,迫切需要改造学校环境,以更好地满足自闭症青少年的需求,使他们能够轻松自如地参与学校活动。
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引用次数: 0
The Broad Autism Phenotype-International Test (BAP-IT): A two-domain-based test for the assessment of the broad autism phenotype. 广泛自闭症表型国际测试(BAP-IT):基于两个领域的测试,用于评估广泛的自闭症表型。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-17 DOI: 10.1177/13623613241228887
Marta Godoy-Giménez, Ángel García-Pérez, Fernando Cañadas, Angeles F Estévez, Pablo Sayans-Jiménez

Lay abstract: The broad autism phenotype refers to a group of behaviors related to autism spectrum disorder, but that appear to a lesser extent. Its assessment has been performed through outdated broad autism phenotype/autism spectrum disorder definitions and tests. To address this problem, this study presents the development of a new test, the Broad Autism Phenotype-International Test, a 20-item measure consisting of two dimensions, SOCIAL-BAP and RIRE-BAP, targeting the two-domain operationalization of autism spectrum disorder in Spain and the United Kingdom. Unlike the Broad Autism Phenotype Questionnaire, this test received empirical support as a quick and effective broad autism phenotype measure that can facilitate both broad autism phenotype/autism spectrum disorder research and interventions. This is the first step to studying the BAP in several Spanish and English-speaking countries.

内容提要:广义自闭症表型是指与自闭症谱系障碍有关的一组行为,但其程度较轻。对广义自闭症表型/自闭症谱系障碍的评估一直通过过时的广义自闭症表型/自闭症谱系障碍定义和测试来进行。为了解决这一问题,本研究开发了一种新的测试--广义自闭症表型国际测试,该测试由 20 个项目组成,包括两个维度,即社会-自闭症表型(SOCIAL-BAP)和睿智-自闭症表型(RIRE-BAP),针对的是西班牙和英国自闭症谱系障碍的双领域操作化。与广义自闭症表型问卷不同的是,该测试作为一种快速有效的广义自闭症表型测量方法得到了实证支持,有助于广义自闭症表型/自闭症谱系障碍的研究和干预。这是在多个西班牙语和英语国家研究 BAP 的第一步。
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引用次数: 0
Feasibility of the Autism Navigator® JumpStart to Coaching in Everyday Activities course in South Africa. 自闭症领航者®日常活动辅导课程在南非的可行性。
IF 5.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2024-09-01 Epub Date: 2024-02-08 DOI: 10.1177/13623613231223784
Nola Chambers, Petrus J de Vries, Amy M Wetherby

Lay abstract: In low-resource settings, non-profit organisations play an essential role in providing services and support for families with young children with autism, including in Africa. However, non-profit organisation service providers may not have access to quality training in proven intervention methods. Web-based or online courses may help to meet this need. In this study, we invited a group of specialist (10) and non-specialist (16) non-profit organisation providers in South Africa to complete a web-based course, Autism Navigator® JumpStart to Coaching in Everyday Activities, a 20-h self-paced course that provides training in an evidence-based parent coaching intervention called Early Social Interaction. We evaluated acceptability, appropriateness, and feasibility of the training. Of the 26 who enrolled, 16 completed the course (7 specialists and 9 non-specialists). All providers found it difficult to find time to do the course until the lockdown restrictions due to COVID-19, when most completed the course. Those whose first language was not English experienced more difficulties with two of six learner assessments and those who were not clinical specialists had more difficulty with the coaching strategies learner assessment. Most providers rated the course highly feasible, acceptable, and appropriate stating that the course content was very valuable and helpful in equipping them to serve their families. They felt the extensive video clips and regular meetings with a local trainer helped them engage with and understand the material. They suggested that including South African video clips would make the course more relatable. The fact that the course was web-based was identified as a strong benefit, especially during COVID-19 restrictions.

内容提要:在资源匮乏的环境中,非营利组织在为自闭症幼儿家庭提供服务和支持方面发挥着至关重要的作用,包括在非洲。然而,非营利组织的服务提供者可能无法获得经过验证的干预方法方面的高质量培训。网络课程或在线课程可能有助于满足这一需求。在本研究中,我们邀请了南非的一组专家(10 名)和非专家(16 名)非营利组织服务提供者完成了一门网络课程,即自闭症导航仪® 日常活动指导入门课程,这是一门 20 小时的自定进度课程,提供名为 "早期社交互动 "的循证家长指导干预培训。我们对培训的可接受性、适宜性和可行性进行了评估。在 26 名报名者中,16 人完成了课程(7 名专家和 9 名非专家)。所有医疗服务提供者都认为很难抽出时间来完成课程,直到 COVID-19 导致封锁限制时,大多数医疗服务提供者才完成了课程。母语不是英语的医疗服务提供者在完成六项学习者评估中的两项时遇到了更多困难,而非临床专家的医疗服务提供者在完成辅导策略学习者评估时遇到了更多困难。大多数服务提供者对课程的可行性、可接受性和适当性都给予了很高的评价,认为课程内容非常有价值,有助于他们为家庭提供服务。他们认为,大量的视频剪辑和与当地培训师的定期会面有助于他们参与和理解教材。他们建议,加入南非的视频剪辑会使课程更加贴近生活。课程基于网络这一事实被认为是一个很大的优势,尤其是在 COVID-19 限制期间。
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引用次数: 0
期刊
Autism
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