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Parental distress, marital satisfaction, and functional impairments in autistic children: A family perspective from Türkiye. 自闭症儿童的父母痛苦、婚姻满意度和功能障碍:来自<s:1> rkiye的家庭视角。
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 Epub Date: 2025-08-05 DOI: 10.1177/13623613251362263
Nazlı Özoğuz, Mustafa Balkanas, Mahmut Cem Tarakçıoğlu

This study investigates the relationships between family dynamics, parental psychological distress, and functional impairment in Turkish autistic children. We recruited 100 families, including children aged 6-12 years diagnosed with autism and their parents. Autism severity was measured using the Childhood Autism Rating Scale. Parents completed validated tools, including the Brief Symptom Inventory and Weiss Functional Impairment Rating Scale-Parent Form, while mothers also completed the Multidimensional Perceived Social Support Scale and Marital Adjustment Test. Mothers reported higher functional impairment in their children (M = 0.90, SD = 0.50) than fathers (M = 0.82, SD = 0.46, p = 0.020). Maternal distress was significantly associated with greater functional impairment (β = 0.242, p = 0.028), while stronger marital relationships were linked to lower levels of impairment (β = -0.323, p = 0.001). Autism symptom severity and comorbid conditions were not significantly associated with functional impairment. These findings suggest that maternal mental health and marital satisfaction are related to functional impairments in autistic children. While fathers often have less direct caregiving roles, their supportive presence may also be important. These findings highlight the need for longitudinal studies to clarify whether reducing caregiver stress and supporting family resilience are linked to improved outcomes in autistic children.Lay AbstractRaising autistic children presents unique daily challenges for families. This study explored how family relationships and parents' mental health are linked to the daily functioning of autistic children in Türkiye. We included 100 families with children aged 6-12 years who had been diagnosed with autism. Mothers often reported more challenges in their child's daily life compared to fathers. Higher levels of maternal stress were associated with greater difficulties in children's daily functioning. In contrast, stronger and more supportive marriages were associated with fewer reported challenges. These results suggest that family dynamics and caregiver well-being are closely related to how autistic children experience daily life. Supporting parental mental health and strengthening family relationships may help promote better outcomes for autistic children and their families.

本研究探讨土耳其自闭症儿童的家庭动态、父母心理困扰与功能障碍之间的关系。我们招募了100个家庭,包括6-12岁的自闭症儿童和他们的父母。自闭症严重程度是用儿童自闭症评定量表来衡量的。父母完成了有效的工具,包括简短症状量表和韦斯功能障碍评定量表-父母表格,母亲还完成了多维感知社会支持量表和婚姻调整测试。母亲报告的孩子的功能障碍高于父亲(M = 0.82, SD = 0.46, p = 0.020) (M = 0.90, SD = 0.50)。母亲的痛苦与更严重的功能损害显著相关(β = 0.242, p = 0.028),而更牢固的婚姻关系与更低水平的功能损害相关(β = -0.323, p = 0.001)。自闭症症状严重程度和合并症与功能障碍无显著相关性。这些发现提示,母亲心理健康和婚姻满意度与自闭症儿童的功能障碍有关。虽然父亲通常不太直接照顾孩子,但他们的支持也很重要。这些发现强调了纵向研究的必要性,以澄清减轻照顾者压力和支持家庭弹性是否与改善自闭症儿童的预后有关。培养自闭症儿童对家庭来说是一项独特的日常挑战。这项研究探讨了家庭关系和父母的心理健康如何与 rkiye自闭症儿童的日常功能联系在一起。我们纳入了100个有6-12岁儿童被诊断为自闭症的家庭。与父亲相比,母亲在孩子的日常生活中经常遇到更多的挑战。母亲的压力水平越高,孩子的日常运作就越困难。相比之下,更牢固、更相互支持的婚姻所面临的挑战较少。这些结果表明,家庭动态和照顾者的幸福与自闭症儿童如何体验日常生活密切相关。支持父母的心理健康和加强家庭关系可能有助于促进自闭症儿童及其家庭的更好结果。
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引用次数: 0
Masking, social context and perceived stress in autistic adults: An ecological momentary assessment study. 孤独症成人的掩饰、社会环境和感知压力:一项生态瞬时评估研究。
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 Epub Date: 2025-07-09 DOI: 10.1177/13623613251353358
Anke M Scheeren, Smiddy Nieuwenhuis, Laura Crane, Yvette Roke, Sander Begeer

Masking may entail the suppression of autistic traits by autistic individuals. Thus far, research indicates a negative impact of autistic masking on mental health, but this is largely based on retrospective surveys. In this study, we used ecological momentary assessment to examine real-time associations between social context (i.e. presence of (non-)autistic others), masking, and perceived stress in everyday life among a sample of autistic adults. Ecological momentary assessment data were collected via a smartphone application for 87 autistic individuals (58 females; M age = 48; age range: 17-68). In line with the hypotheses, repeated measures analyses of variance and linear mixed models indicated that (1) participants reported masking significantly less when they were alone compared with when others were present, (2) participants masked significantly more when non-autistic others were present compared with autistic others, and (3) more masking was associated with a concurrent higher level of perceived stress. Autistic adults reported they could be more themselves among autistic peers and reduced masking was associated with reduced stress. These ecological momentary assessment study findings provide ecological validity to the potential stressful impact of masking in the daily lives of autistic adults.Lay abstractAutistic people may try to hide their autistic traits in order to fit in. This is called autistic masking. Survey research suggests that autistic masking may have a negative effect on the mental well-being of autistic people. Yet, survey research has limitations, because people may not remember or may not accurately report how much they masked and how they felt in the past. Therefore, in this study, we asked autistic adults to use a smartphone app to report with whom they were (with or without autistic people), if they could be themselves (degree of masking), and how stressed they felt during the past 4 h. Participants reported this information multiple times over a period of 28 days. In total, 87 autistic adults participated (58 females; age range: 17-68). In line with our expectations, (1) participants masked less when they were alone compared with when others were present, (2) participants masked more when non-autistic others were present compared with autistic others, and (3) more masking was linked with the experience of more stress in the same moment. Autistic adults reported they could be more themselves among other autistic individuals. Also, less masking was associated with less stress. Our study shows the everyday reality of stress during masking experienced by autistic adults.

掩蔽可能导致自闭症个体对自闭症特征的抑制。到目前为止,研究表明自闭症掩盖对心理健康有负面影响,但这主要是基于回顾性调查。在这项研究中,我们使用生态瞬时评估来检查自闭症成人样本中日常生活中社会背景(即(非)自闭症他人的存在)、掩蔽和感知压力之间的实时关联。通过智能手机应用程序收集了87例自闭症患者(女性58例;M年龄= 48;年龄范围:17-68岁。与假设一致,方差和线性混合模型的重复测量分析表明:(1)与他人在场时相比,单独在场时受试者的掩蔽率显著降低;(2)与非自闭症人士在场时受试者的掩蔽率显著高于自闭症人士在场时受试者的掩蔽率;(3)更多的掩蔽与同时更高的感知压力水平相关。自闭症成年人报告说,他们在自闭症同龄人中更能表现自己,减少掩蔽与减少压力有关。这些生态瞬间评估研究结果为自闭症成人日常生活中掩蔽的潜在压力影响提供了生态有效性。自闭的人可能会试图隐藏他们自闭的特征,以适应社会。这被称为自闭掩蔽。调查研究表明,自闭症掩饰可能对自闭症患者的心理健康产生负面影响。然而,调查研究有局限性,因为人们可能不记得或可能不准确地报告他们掩盖了多少以及他们过去的感受。因此,在这项研究中,我们要求自闭症成年人使用智能手机应用程序报告他们和谁在一起(有或没有自闭症患者),他们是否可以做自己(掩饰程度),以及他们在过去4小时内感受到的压力。参与者在28天内多次报告这些信息。共有87名自闭症成年人参与其中(58名女性;年龄范围:17-68岁。与我们的预期一致,(1)与他人在场相比,参与者在独处时掩饰较少,(2)与非自闭症人士在场相比,参与者在自闭症人士在场时掩饰更多,(3)更多的掩饰与同一时刻更多的压力体验有关。自闭症成年人报告说,他们在其他自闭症患者中更能表现自己。此外,较少的掩蔽与较少的压力有关。我们的研究显示了自闭症成年人在掩蔽过程中所经历的日常压力现实。
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引用次数: 0
How well can commonly used anxiety scales detect treatment outcomes in the context of autism? 在自闭症的背景下,常用的焦虑量表能在多大程度上检测治疗结果?
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 Epub Date: 2025-07-05 DOI: 10.1177/13623613251349929
Huilin Chen, Jeffrey J Wood, Connor M Kerns, Eric A Storch, Philip C Kendall, Gaia Scerif, Cathy Creswell

Anxiety is one of the most prevalent mental health challenges in autistic children, yet there is limited evidence on effective tools to measure treatment outcomes. Previous research with non-autistic children has found that the Child Anxiety Impact Scale, Parent Version achieved good diagnostic accuracy when measuring treatment outcomes and performed better than a commonly used symptom measure. However, this has not been evaluated for autistic children. The present study examined the psychometric properties of the Child Anxiety Impact Scale, Parent Version in autistic children and compared its utility against other anxiety symptom measures, to detect treatment outcomes as assessed by a gold-standard diagnostic interview, the Anxiety and Related Disorders Interview Schedule, Child Version, Parent Interview with the Autism Spectrum Addendum. Data were used from 212 children (aged 7-13 years) who participated in a randomised controlled trial. Receiver-operating characteristic curve analyses were conducted, and subsequent subgroup analyses were conducted using DeLong tests. Results demonstrated that the Child Anxiety Impact Scale, Parent Version had strong psychometric properties, with total scores significantly outperforming other measures in predicting post-treatment recovery from anxiety diagnoses. These findings have implications for future choices of treatment outcome measures in research and clinical practice.Lay abstractStudy on the utility of anxiety scales to detect anxiety diagnostic treatment outcomes in autistic childrenWhy was the study done? The importance of having valid and reliable anxiety measures for autistic children has been highlighted as a research priority by professionals and people with lived experience. Yet, while anxiety has been frequently assessed in autistic children, we do not currently know much about how well commonly used anxiety measures work, especially parent reports, in this context. This has significant implications for care planning and resource allocation for autistic children who experience significant anxiety problems.What did the researchers do? The research team studied data collected in a previously published multi-centred randomised controlled trial (RCT) testing an adapted cognitive behavioural therapy for anxiety (Wood et al., 2020) to better understand how different anxiety measures did, compared to gold-standard anxiety diagnostic assessments, in detecting treatment outcomes. They focused in particular on the Child Anxiety Impact Scale, Parent Version (CAIS-P).What did the researchers find? This study found that the CAIS-P did better than conventional anxiety symptom measures in detecting treatment outcomes for anxiety problems in autistic children.What do the findings mean? This study adds to the current evidence base to inform choices of measurement of anxiety problems in the context of autism.

焦虑是自闭症儿童最普遍的心理健康挑战之一,但关于衡量治疗结果的有效工具的证据有限。先前对非自闭症儿童的研究发现,在测量治疗结果时,儿童焦虑影响量表(家长版)具有良好的诊断准确性,比常用的症状测量方法表现得更好。然而,这还没有对自闭症儿童进行评估。本研究考察了自闭症儿童父母版儿童焦虑影响量表的心理测量特征,并将其与其他焦虑症状测量方法进行比较,以检测金标准诊断访谈、焦虑和相关障碍访谈时间表、儿童版、父母访谈和自闭症谱系附录评估的治疗结果。数据来自参加随机对照试验的212名儿童(7-13岁)。进行受者-工作特征曲线分析,随后采用DeLong试验进行亚组分析。结果表明,家长版儿童焦虑影响量表具有较强的心理测量特性,总分在预测焦虑诊断治疗后恢复方面显著优于其他测量方法。这些发现对未来在研究和临床实践中选择治疗结果指标具有启示意义。摘要焦虑量表在自闭症儿童焦虑诊断治疗效果检测中的应用研究为什么要进行这项研究?对自闭症儿童进行有效可靠的焦虑测量的重要性已经被专业人士和有生活经验的人强调为研究重点。然而,虽然自闭症儿童的焦虑经常被评估,但我们目前对常用的焦虑测量方法,特别是家长报告在这种情况下的效果知之甚少。这对患有严重焦虑问题的自闭症儿童的护理计划和资源分配具有重要意义。研究人员做了什么?研究小组研究了之前发表的一项多中心随机对照试验(RCT)收集的数据,该试验测试了一种针对焦虑的适应性认知行为疗法(Wood et al., 2020),以更好地了解与金标准焦虑诊断评估相比,不同的焦虑测量在检测治疗结果方面的作用。他们特别关注儿童焦虑影响量表,家长版(CAIS-P)。研究人员发现了什么?本研究发现CAIS-P在检测自闭症儿童焦虑问题的治疗结果方面优于传统的焦虑症状测量。这些发现意味着什么?这项研究增加了现有的证据基础,为自闭症背景下焦虑问题的测量选择提供了信息。
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引用次数: 0
Outcomes of the World Health Organization's Caregiver Skills Training Program for Eritrean and Ethiopian parents of autistic children in the United States. 世界卫生组织为在美国有自闭症儿童的厄立特里亚和埃塞俄比亚父母开展的照料者技能培训项目的结果。
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 Epub Date: 2025-06-29 DOI: 10.1177/13623613251351345
Sarah Dababnah, Waganesh A Zeleke, Yoonzie Chung, Rachel Antwi Adjei, Pamela Dixon, Erica Salomone

Autism intervention research has not adequately addressed the needs of Black autistic children and their families, particularly those who are also immigrants to the United States. The World Health Organization designed Caregiver Skills Training (CST), a parent-mediated intervention intended to improve child social communication and behavior, to fill in the global gap of services for caregivers of young children with autism and other neurodevelopmental conditions. While CST has been implemented in Ethiopia, it has not been evaluated for Ethiopian and Eritrean immigrant families in the United States. This single-arm pilot study of CST investigated pre- and post-intervention changes in parent and child outcomes within a sample of 25 mothers of autistic children (ages 2-9 years) in Maryland, Washington, DC, and Virginia. Eritrean and Ethiopian facilitators delivered CST remotely to five parent groups. We used Wilcoxon signed-rank tests and found statistically significant improvements in parents' knowledge, skills, self-efficacy, depression, and empowerment, as well as child communication, sociability, and sensory/cognitive awareness. There were no statistically significant changes in parents' anxiety, stress, and coping, nor some subscales of the empowerment and child outcome measures. We conclude CST is a promising intervention for Ethiopian and Eritrean immigrant families in the United States. Randomized controlled trials are needed to confirm study findings.Lay abstractAutism intervention research has often not included Black autistic children and families, including those who are also immigrants to the United States. The World Health Organization designed Caregiver Skills Training (CST) because there are not enough services for caregivers of young children with autism and other neurodevelopmental conditions. CST is an intervention in which parents receive information on how to support their own and their children's needs in nine group and three individual sessions. While CST has been adapted and piloted in Ethiopia, it has not been evaluated for Ethiopian and Eritrean immigrant families in the United States. In this study, five groups with a total of 25 mothers of autistic children (ages 2-9 years) all received CST from Eritrean and Ethiopian facilitators on Zoom. The participants completed surveys about themselves and their autistic children before and after they completed CST. We found that parents' knowledge, skills, self-efficacy, depression, and empowerment, as well as their children's communication, sociability, and sensory/cognitive awareness improved after they completed CST. We did not find changes in some areas we measured, such as parents' anxiety, stress, and coping. We believe that CST might be a promising intervention for Ethiopian and Eritrean immigrant families in the United States. We recommend that more research should be done to confirm what we found in this study.

自闭症干预研究没有充分解决黑人自闭症儿童及其家庭的需求,特别是那些移民到美国的儿童。世界卫生组织设计了照顾者技能培训(CST),这是一种父母介导的干预措施,旨在改善儿童的社会沟通和行为,以填补全球为患有自闭症和其他神经发育疾病的幼儿照顾者提供服务的空白。虽然埃塞俄比亚已经实施了CST,但尚未对在美国的埃塞俄比亚和厄立特里亚移民家庭进行评估。这项CST的单臂先导研究调查了马里兰州、华盛顿特区和弗吉尼亚州25名自闭症儿童(2-9岁)的母亲在干预前和干预后父母和儿童结局的变化。厄立特里亚和埃塞俄比亚的协调员远程向五个家长团体提供了CST。我们使用Wilcoxon sign -rank检验,发现在父母的知识、技能、自我效能、抑郁和授权以及儿童沟通、社交能力和感官/认知意识方面有统计学上显著的改善。在父母的焦虑、压力和应对方面没有统计学上的显著变化,也没有一些赋权和儿童结果测量的分量表。我们得出结论,CST是一个有希望的干预埃塞俄比亚和厄立特里亚移民家庭在美国。需要随机对照试验来证实研究结果。自闭症干预研究通常不包括黑人自闭症儿童和家庭,包括那些移民到美国的儿童和家庭。世界卫生组织设计了护理人员技能培训(CST),因为没有足够的服务来照顾患有自闭症和其他神经发育疾病的幼儿。CST是一项干预措施,父母在9个小组和3个个人会议中获得关于如何支持自己和子女需求的信息。虽然埃塞俄比亚已对CST进行了调整和试点,但尚未对在美国的埃塞俄比亚和厄立特里亚移民家庭进行评估。在本研究中,五组共25名自闭症儿童(2-9岁)的母亲在Zoom上接受了厄立特里亚和埃塞俄比亚辅导员的CST培训。参与者在完成CST之前和之后完成了关于他们自己和他们的自闭症孩子的调查。我们发现父母的知识、技能、自我效能、抑郁和赋权,以及孩子的沟通、社交和感官/认知意识在完成CST后都有所改善。在我们测量的一些领域,如父母的焦虑、压力和应对方面,我们没有发现变化。我们认为,CST可能是一个有希望的干预埃塞俄比亚和厄立特里亚移民家庭在美国。我们建议应该做更多的研究来证实我们在这项研究中的发现。
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引用次数: 0
Potential association between altered oral microbiota and oxidative stress in individuals with autism. 自闭症患者口腔微生物群改变与氧化应激之间的潜在关联。
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 Epub Date: 2025-08-21 DOI: 10.1177/13623613251362259
Liyan Zhong, Pengcheng Ren, Haibo Wang, Chenghui Fu, Dingxia Feng, Min Wang, Liqin Zeng, Paul Yao, Tao Wang

Autism spectrum disorders are potentially associated with gastrointestinal dysfunction, although the underlying mechanisms remain unclear. Recently, the oral cavity has gained attention as the starting point of the digestive tract. We aim to explore the potential association between altered oral microbiota and oxidative stress in individuals with autism spectrum disorders. We conducted a case-control study involving 54 subjects with autism spectrum disorders and 46 typically developing participants. Oral epithelial cells and saliva samples were collected to analyze oxidative stress markers and oral microbiota composition using 16S rDNA sequencing. Compared with typically developing participants, individuals with autism spectrum disorders exhibited suppressed mRNA levels of superoxide dismutase 2 and RAR-related orphan receptor α, increased H3K9me2 modifications at superoxide dismutase 2 promoter, elevated levels of 8-oxo-dG in oral epithelial cells, and a reduced ratio of reduced glutathione/oxidized glutathione (GSH/GSSG) ratio in saliva. In addition, alpha and beta diversity analyses showed significant differences in microbial richness, evenness, and intersample variation between the autism spectrum disorder and typically developing groups. Statistical analyses confirmed marked distinctions in microbial diversity and community structure between the two groups. Individuals with autism spectrum disorders show increased oxidative stress and altered oral microbiota compared with typically developing participants. While the underlying mechanisms remain unclear, these findings suggest that altered oral microbiota may be linked to oxidative stress, providing insights into autism spectrum disorder pathology and potential avenues for clinical intervention.Lay AbstractAutism spectrum disorders are linked to gut-related issues, but the exact causes are still unclear. Recent research focuses on the mouth, the first part of the digestive system, to understand how it may play a role. This study looked at how the oral microbiome (the community of microorganisms in the mouth) and oxidative stress (an imbalance between harmful free radicals and antioxidants in the body) differ in people with autism spectrum disorders compared with typically developing individuals. Researchers studied 54 people with autism spectrum disorders and 46 typically developing individuals by analyzing their saliva and oral cells. Results showed that people with autism spectrum disorders had higher levels of oxidative stress markers and noticeable differences in their oral microbiota diversity and structure. These findings suggest a potential connection between changes in oral bacteria and oxidative stress in autism spectrum disorders, opening the door for new ways to study and treat autism spectrum disorders-related health issues.

自闭症谱系障碍可能与胃肠道功能障碍有关,尽管其潜在机制尚不清楚。近年来,口腔作为消化道的起点受到了人们的关注。我们的目的是探索自闭症谱系障碍患者口腔微生物群改变与氧化应激之间的潜在关联。我们进行了一项病例对照研究,涉及54名自闭症谱系障碍患者和46名正常发展的参与者。收集口腔上皮细胞和唾液样本,采用16S rDNA测序分析氧化应激标志物和口腔微生物群组成。与正常发育的参与者相比,自闭症谱系障碍个体表现出超氧化物歧化酶2和rar相关孤儿受体α mRNA水平的抑制,超氧化物歧化酶2启动子的H3K9me2修饰增加,口腔上皮细胞中8-oxo-dG水平升高,唾液中还原性谷胱甘肽/氧化性谷胱甘肽(GSH/GSSG)比例降低。此外,α和β多样性分析显示,自闭症谱系障碍组和正常发育组在微生物丰富度、均匀度和样本间变异方面存在显著差异。统计分析证实了两组之间微生物多样性和群落结构的显著差异。与正常发育的参与者相比,患有自闭症谱系障碍的个体表现出氧化应激增加和口腔微生物群改变。虽然潜在的机制尚不清楚,但这些发现表明口腔微生物群的改变可能与氧化应激有关,为自闭症谱系障碍的病理和临床干预提供了潜在的途径。自闭症谱系障碍与肠道相关问题有关,但确切原因尚不清楚。最近的研究集中在口腔,消化系统的第一部分,了解它是如何发挥作用的。这项研究着眼于自闭症谱系障碍患者的口腔微生物群(口腔中的微生物群落)和氧化应激(体内有害自由基和抗氧化剂之间的不平衡)与正常发育个体的差异。研究人员通过分析唾液和口腔细胞对54名自闭症谱系障碍患者和46名正常发育个体进行了研究。结果显示,自闭症谱系障碍患者的氧化应激标志物水平较高,口腔微生物群的多样性和结构也存在明显差异。这些发现表明,口腔细菌的变化与自闭症谱系障碍患者的氧化应激之间存在潜在的联系,为研究和治疗自闭症谱系障碍相关的健康问题开辟了新的途径。
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引用次数: 0
What are we targeting when we support inclusive education for autistic students? A systematic review of 233 empirical studies and call for community partnerships. 当我们支持自闭症学生的全纳教育时,我们的目标是什么?对233项实证研究的系统回顾,并呼吁建立社区伙伴关系。
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 Epub Date: 2025-08-04 DOI: 10.1177/13623613251352223
Valentine Perrelet, Aline Veyre, Léa Chawki, Claire Margot, Émilie Cappe
<p><p>Interventions to support mainstream schooling for autistic students involve multiple complex considerations. This systematic review, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses standards, aimed to describe inclusive education interventions, their outcomes, and the tools used to measure the outcomes. A total of 233 experimental studies were included in the review. Subsequent result interpretation was performed using a participatory approach. To this end, a group of consultants comprising lived experience experts participated in two consultation sessions. Most studies were randomized controlled trials, single-case experimental design studies, or other quasi-experimental design studies. The social interactions and social skills of autistic students were the most frequently targeted outcomes. Cognitive-behavioral interventions were the predominant intervention type. A wide, heterogeneous set of standardized instruments was used to measure outcomes, indicating a lack of consensus on how to measure school inclusion and participation. The most used measurement tools assessed core autism symptoms, intelligence quotient, and adaptive behaviors. Approximately half of the studies failed to measure implementation considerations. Participatory interpretation of the results through consultation sessions with lived experience experts enabled the highlighting of interactive processes and considerations involved in inclusive education.Lay abstractMultiple complex considerations are involved in supporting mainstream schooling for autistic students. This systematic review aimed to describe inclusive education interventions and outcome measures for autistic students. A total of 233 experimental studies were analyzed. Furthermore, consultation sessions with autistic people, parents, and inclusive education professionals were organized to enable in-depth interpretation of the results using a participatory approach. Cognitive-behavioral interventions were the most common intervention type in the international scientific literature, and social interactions of autistic children were the most frequently targeted outcomes. A lack of consensus on how to measure school inclusion and participation was found. Although some studies considered perspectives on the acceptability of interventions, most of them failed to evaluate implementation aspects. The lived experience experts highlighted tensions between the systematic review findings and the practical realities of inclusive education; this led to discussions about the possible application of the United Nations' definition of inclusion. Overall, empirical research supporting the inclusion of autistic students aligns more closely with the concept of integration, which requires students to adapt to the school context. The focus of inclusion has been shifting from minimizing the unique traits of students with special needs to adapting the environment for them to take a greater part in sc
支持自闭症学生主流学校教育的干预措施涉及多种复杂的考虑。本系统评价遵循系统评价和荟萃分析标准的首选报告项目,旨在描述全纳教育干预措施、其结果以及用于测量结果的工具。本综述共纳入233项实验研究。随后的结果解释采用参与式方法进行。为此目的,由生活经验专家组成的一组顾问参加了两次协商会议。大多数研究为随机对照试验、单例实验设计研究或其他准实验设计研究。自闭症学生的社交互动和社交技能是最常见的目标结果。认知行为干预是主要的干预类型。一套广泛的、异构的标准化工具被用来衡量结果,这表明在如何衡量学校包容和参与方面缺乏共识。最常用的测量工具评估核心自闭症症状、智商和适应行为。大约一半的研究未能衡量执行方面的考虑。通过与生活经验专家的协商会议对结果进行参与式解释,突出了全纳教育所涉及的互动过程和考虑因素。支持自闭症学生的主流教育涉及多种复杂的考虑。本系统综述旨在描述全纳教育干预措施和自闭症学生的结果测量。共分析了233项实验研究。此外,组织了与自闭症患者、家长和全纳教育专业人员的咨询会议,以便使用参与式方法对结果进行深入解释。认知行为干预是国际科学文献中最常见的干预类型,自闭症儿童的社会互动是最常见的目标结果。调查发现,在如何衡量学校包容和参与方面缺乏共识。虽然一些研究考虑了干预措施可接受性的观点,但大多数研究未能评价实施方面的问题。生活经验专家强调了系统审查结果与全纳教育的实际现实之间的紧张关系;这导致了关于可能适用联合国包容定义的讨论。总体而言,支持自闭症学生融入的实证研究与整合的概念更为一致,整合要求学生适应学校环境。包容的重点已经从最大限度地减少有特殊需要的学生的独特特征转变为适应环境,使他们更多地参与学校活动。
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引用次数: 0
Contextual factors influencing neuro-affirming practice: Identifying what helps or hinders implementation in health and social care. 影响神经确认实践的环境因素:确定在健康和社会护理中帮助或阻碍实施的因素。
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 Epub Date: 2025-09-09 DOI: 10.1177/13623613251360275
Anna Gray, Donald Maciver, Eleanor Curnow, Lorna Johnston, Marion Rutherford

There has been limited research to date into contextual factors hindering or supporting the successful implementation of neuro-affirming practice in support for Autistic and otherwise neurodivergent adults. We used a Realist Evaluation approach to explore key contexts affecting neuro-affirming practice. A preliminary programme theory of key aspects of support was developed. Views on current practice were sought through structured interviews with 32 senior professionals in leadership roles within Health and Social Care services in Scotland. This study identified important contexts shaping the implementation of neuro-affirming practice for adults. Results indicate widespread professional support for modifying practice to better accommodate neuro-affirming ideas, and scope to achieve this. However, some contexts, including limited resources, restrictive eligibility criteria and rigid service structures, hinder progress. Growing demand for services was often viewed as a restrictive context, but it also offered a chance to rethink conventional, one-size-fits-all models and adopt neuro-affirming approaches. The study is important in addressing a current gap in research into professional perspectives of the contexts required to develop transdiagnostic, neuro-affirming approaches and pathways for Autistic and neurodivergent adults. The insights from this study may offer transferable practice approaches, applicable across different countries with similar healthcare contexts.Lay abstractDelivery of neuro-affirming adult support pathways for Autistic and other neurodivergent adults by Health and Social Care institutions can be affected by different contexts. However, there is limited research to date into the most supportive contexts for effective neuro-affirming practice. This study aimed to explore the most beneficial contexts for neuro-affirming approaches, and barriers to this. We did this by using existing research to develop a theory about the most helpful approaches to support for Autistic adults, then gathering the views of 32 senior professionals in leadership roles within Health and Social Care services to explore supports and challenges they experience in implementing these approaches. The study identified important contexts for delivery of neuro-affirming practice and how these might be achieved. Some contexts, such as limited resources, restrictive eligibility criteria and inflexible service structures, could limit progress. However, although these were often seen as barriers, they also offered a chance to rethink one-size-fits-all models and adopt neuro-affirming approaches. This study is important in addressing a current gap in research into professional perspectives of the ways neuro-affirming approaches can be developed in practice, to support Autistic and neurodivergent adults. The insights from this study may offer transferable lessons, applicable across different regions and countries.

迄今为止,关于阻碍或支持成功实施神经肯定练习以支持自闭症和其他神经分化成人的背景因素的研究有限。我们使用现实主义评估方法来探索影响神经肯定实践的关键背景。拟订了支助关键方面的初步方案理论。通过与32名在苏格兰保健和社会保健服务部门担任领导职务的高级专业人员进行结构化访谈,寻求对目前做法的看法。本研究确定了影响成人实施神经肯定练习的重要背景。结果表明,广泛的专业支持修改实践,以更好地适应神经肯定的想法,以及实现这一目标的范围。然而,一些情况,包括有限的资源、限制性的资格标准和僵化的服务结构,阻碍了进展。不断增长的服务需求通常被视为一种限制性环境,但它也提供了一个机会,让我们重新思考传统的、一刀切的模式,并采用肯定神经的方法。该研究对于解决目前在发展自闭症和神经分化成人的跨诊断、神经确认方法和途径所需的专业背景研究方面的差距非常重要。本研究的见解可能提供可转移的实践方法,适用于具有类似医疗保健背景的不同国家。摘要健康和社会护理机构对自闭症和其他神经分化成人的神经肯定成人支持通路的传递可能受到不同环境的影响。然而,迄今为止,对有效的神经肯定练习的最支持性背景的研究有限。本研究旨在探索神经确认方法最有益的环境和障碍。为此,我们利用现有的研究,提出了一个关于支持自闭症成年人的最有帮助的方法的理论,然后收集了32位在卫生和社会保健服务部门担任领导角色的高级专业人员的观点,以探索他们在实施这些方法时所经历的支持和挑战。该研究确定了传递神经确认实践的重要背景以及如何实现这些目标。某些情况,例如有限的资源、限制性的资格标准和不灵活的服务结构,可能会限制进展。然而,尽管这些通常被视为障碍,但它们也提供了一个重新思考一刀切模式并采用神经肯定方法的机会。这项研究对于解决目前在专业角度研究神经肯定方法在实践中发展的方法方面的差距是重要的,以支持自闭症和神经分化的成年人。本研究的见解可能提供可转移的经验教训,适用于不同地区和国家。
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引用次数: 0
Development of a Goal Attainment Scale (GAS) outcome measure for clinical interventional studies in paediatric autism. 儿童自闭症临床干预研究目标实现量表(GAS)结果测量的发展。
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 Epub Date: 2025-06-25 DOI: 10.1177/13623613251349904
Hannah Staunton, Tammy McIver, Julian Tillmann, Susanne Clinch, Vivienne Hanrahan, Bethany Ewens, Caroline Averius, Alexandra I Barsdorf, Aurelie Baranger, Elizabeth Berry Kravis, Tony Charman, Haraldt Neerland, Alison T Singer, Pamela Ventola, Zackary Jk Williams, Louise Barrett

Existing clinical outcome assessments (COAs) have limitations in capturing treatment effects in autism for those who choose to enrol in clinical research. Some COAs include items that are not relevant or equally important to all autistic people; others are not sufficiently comprehensive. Goal Attainment Scaling (GAS), which measures individual experiences against personalised goals, has been proposed as a more individualised and change-sensitive approach to assess outcomes in clinical studies. We developed a novel GAS measure for use in paediatric autism studies based on qualitative interviews with autistic adolescents, parents and clinicians. Applying a methodologically robust approach, concept elicitation interviews (N = 40) were first conducted to understand and generate a bank of personalised goals, followed by cognitive debriefing interviews (N = 39) to provide feedback on a draft GAS manual. Twenty-five personalised goals were generated for core autistic characteristics (communication, socialisation, restrictive and repetitive behaviours), as well as associated characteristics and impacts. In debriefing interviews, adolescents and parents supported the use of personalised goals and clinicians recommended using such goals in clinical studies and practice. In conclusion, GAS measures may overcome some of the challenges with existing outcome measures and complement future outcome measurement strategies for clinical studies in paediatric autism.Lay AbstractAutistic children and adolescents and their parents support the use of personalised goals as a way of measuring the effects of new treatments for those who choose to enrol in clinical research. Health professionals also recommend using personalised goals in both their research and in treatment plans. Establishing personalised goals, a process known as Goal Attainment Scaling (GAS), means identifying goals according to the needs of the individual, as opposed to using standardised outcomes for all participants. Autism is a condition with many different characteristics and degrees of impact, and the tools commonly used to measure treatment effects, known as clinical outcome assessments (COAs), have limitations. Some COAs, for example, include outcomes that are not relevant to all autistic people; others do not include enough outcomes to represent the experience of all autistic people. GAS, which measures individual experiences against personalised goals, may be complementary to existing COAs to provide an individualised or tailor-made tool to evaluate outcomes as a result of an intervention. We developed a GAS measure for researchers/health professionals to use in studies with autistic children and adolescents. Our research was based on a total of 40 interviews with adolescents, parents and clinicians, asking open-ended questions about how children and adolescents experience autism in order to understand and create a bank of potential personalised goals. We then conducted 39 further

现有的临床结果评估(COAs)在捕捉那些选择参加临床研究的自闭症患者的治疗效果方面存在局限性。一些coa包含的项目并非与所有自闭症患者相关或同等重要;其他的则不够全面。目标实现量表(GAS)是一种针对个性化目标来衡量个人经历的方法,已被提议作为一种更加个性化和变化敏感的方法来评估临床研究的结果。基于对自闭症青少年、父母和临床医生的定性访谈,我们开发了一种用于儿科自闭症研究的新型GAS测量方法。采用方法学上稳健的方法,首先进行概念启发访谈(N = 40),以了解并生成个性化目标库,然后进行认知汇报访谈(N = 39),以提供对GAS手册草案的反馈。针对核心自闭症特征(沟通、社交、限制性和重复性行为)以及相关特征和影响,制定了25个个性化目标。在汇报访谈中,青少年和家长支持使用个性化目标,临床医生建议在临床研究和实践中使用这些目标。总之,气体测量可以克服现有结果测量的一些挑战,并补充未来儿童自闭症临床研究的结果测量策略。【摘要】自闭症儿童和青少年及其父母支持使用个性化目标作为衡量新疗法对那些选择参加临床研究的人的影响的一种方式。卫生专业人员还建议在他们的研究和治疗计划中使用个性化目标。建立个性化目标,这一过程被称为目标实现缩放(GAS),意味着根据个人需求确定目标,而不是对所有参与者使用标准化的结果。自闭症是一种具有许多不同特征和影响程度的疾病,通常用于衡量治疗效果的工具,即临床结果评估(COAs),具有局限性。例如,一些coa包括与所有自闭症患者无关的结果;其他的没有包括足够的结果来代表所有自闭症患者的经历。GAS根据个人目标衡量个人经历,可以作为现有coa的补充,提供个性化或量身定制的工具来评估干预结果。我们为研究人员/卫生专业人员开发了一种用于自闭症儿童和青少年研究的GAS测量方法。我们的研究基于对青少年、父母和临床医生的总共40次访谈,询问关于儿童和青少年如何经历自闭症的开放式问题,以了解和创建一个潜在的个性化目标库。然后,我们进行了39次进一步的访谈,询问他们对该措施初稿的反馈。最后,我们列出了25个与自闭症儿童和青少年的核心和相关特征相关的个性化目标,包括与沟通、社交、限制和重复行为相关的目标。我们希望这些发现将有助于在未来的研究中改善对自闭症儿童和青少年有意义的结果的测量。
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引用次数: 0
Consensus recommendations for usability and acceptability of mobile health autism screening tools. 关于移动健康自闭症筛查工具的可用性和可接受性的共识建议。
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 Epub Date: 2025-08-12 DOI: 10.1177/13623613251360276
Gabriella Tangkilisan, Luis Rivas Vazquez, Plyce Fuchu, Benjamin Sanders, Jill K Dolata, Steven Bedrick, Eric Fombonne, Sarabeth Broder-Fingert, Katharine E Zuckerman

Mobile health (mHealth; online phone or tablet-based) screening tools for autism are being increasingly used by parents, health care, and educational providers. However, it is unclear whether mHealth autism screening will improve the inequalities in autism or further help individuals already advantaged in autism care. To try to improve equity in mHealth autism screening, we conducted a modified Delphi consensus panel process with 14 panelists who were medical providers, parents, tool developers, and educational providers. Panelists participated in three asynchronous online voting rounds followed by online discussions. Panelists were provided a preliminary list of 28 recommendations for autism-screening tools that were compiled from previous qualitative interviews in the larger project. In each round, panelists were asked to vote for up to 10 recommendations from the preliminary list and discuss the voting results. After the third round of asynchronous voting, a final round of discussion with all the panelists was held live through Zoom to discuss the final asynchronous voting results. All voting and discussion took place on an online app called Slack. Voting and discussion yielded 19 recommendations in five conceptual categories: transparency, equity, access, product design and user experience, and development process. Tools adhering to these recommendations may increase equitable service use after screening.Lay abstractFamilies may use information online to learn more about autism. Families, health care, and educational providers may use online tools like checklists or web apps to screen for autism (measure whether a young child has autism symptoms or behaviors). However, we do not know whether the online autism-screening tools can be easily used by families and providers. It is possible that families who are culturally diverse, have lower education, or have lower income have trouble using online autism-screening tools. We conducted an online consensus panel with medical/educational providers, parents, and tool developers, asking them to vote and have discussions on suggestions for online screening tools for autism. The voting and discussions resulted in 19 suggestions for changes to make the tools easier to use. The top recommendations included directly linking to sources of information about autism, reading level that is less than or equal to fifth grade, and focusing on the diverse behavior/needs/strengths associated with autism.

移动医疗(mHealth;父母、医疗保健和教育提供者越来越多地使用在线(手机或平板电脑)自闭症筛查工具。然而,目前尚不清楚移动健康自闭症筛查是否会改善自闭症中的不平等现象,或进一步帮助已经在自闭症护理中处于优势的个体。为了提高移动健康自闭症筛查的公平性,我们进行了一个改进的德尔菲共识小组程序,由14名小组成员组成,他们是医疗服务提供者、家长、工具开发人员和教育提供者。小组成员参加了三轮异步在线投票,随后进行了在线讨论。小组成员被提供了一份初步清单,其中包括28项自闭症筛查工具的建议,这些建议是根据之前在更大项目中的定性访谈编制的。在每一轮中,小组成员被要求从初步名单中投票选出最多10项建议,并讨论投票结果。在第三轮异步投票后,通过Zoom与所有小组成员进行最后一轮讨论,讨论最终的异步投票结果。所有的投票和讨论都是在一个名为Slack的在线应用程序上进行的。投票和讨论产生了5个概念类别的19条建议:透明度、公平、访问、产品设计和用户体验以及开发过程。遵循这些建议的工具可能会增加筛查后服务的公平使用。家庭可以利用网上的信息来了解更多关于自闭症的信息。家庭、医疗保健和教育提供者可能会使用在线工具,如检查表或网络应用程序来筛查自闭症(测量幼儿是否有自闭症症状或行为)。然而,我们不知道在线自闭症筛查工具是否可以被家庭和提供者轻松使用。有可能是文化多样化、受教育程度较低或收入较低的家庭在使用在线自闭症筛查工具方面存在困难。我们与医疗/教育提供者、家长和工具开发者进行了一个在线共识小组,请他们投票并讨论关于自闭症在线筛查工具的建议。投票和讨论产生了19条修改建议,以使工具更易于使用。最重要的建议包括直接链接到有关自闭症的信息来源,阅读水平低于或等于五年级,以及关注与自闭症相关的各种行为/需求/优势。
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引用次数: 0
Associations between child characteristics and parent response to emotion differ in young children with and without an autism diagnosis. 儿童特征与父母对情绪的反应之间的联系在患有和未患有自闭症的幼儿中有所不同。
IF 5.6 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL Pub Date : 2025-12-01 DOI: 10.1177/13623613251395122
Jessie B Northrup, Soo Youn Kim, Carla A Mazefsky
<p><p>This study examined how parents of children with and without an autism diagnosis respond to their children's negative emotions. Specifically, we (1) compared levels of supportive, non-supportive, and distress reactions; (2) tested whether child characteristics (autism traits and emotion dysregulation) predicted parent responses; and (3) explored whether autism diagnosis moderated these associations. Participants were 1780 parents of 2- to 5-year-old children from the United States (812 with an autism diagnosis). Parents completed the Coping with Children's Negative Emotions Scale and reported on children's autism traits and emotion dysregulation. Results indicated that parents of autistic children reported slightly more supportive and less non-supportive and distress responses than parents of children without a diagnosis. Associations between child characteristics and parent responses differed by diagnostic group: parents of children without a diagnosis who had more autism traits reported more non-supportive and distress responses, while these associations were weaker or non-existent for parents of children with a diagnosis. Emotion dysregulation was also associated with parent responding, with subtle differences between groups. Findings suggest an autism diagnosis may shape how parents interpret and respond to children's emotions.Lay AbstractThis study looked at how parents of 2- to 5-year-old children with and without an autism diagnosis respond when their children are upset. A total of 1780 parents completed a questionnaire about how likely they were to respond to their child's negative emotions in ways that were supportive (e.g. comforting the child) and non-supportive (e.g. saying the child is over-reacting, punishing the child). The goal was to see if parents of children with autism respond differently compared to parents of children without autism, and to understand if certain traits of the child, like social-communication and emotional challenges, affect how parents respond. Parents of autistic children generally reported more supportive responding and less non-supportive responding compared to parents of children with a diagnosis, though these differences were very small. For parents of children without an autism diagnosis, having a child with more social or emotional challenges was linked to more non-supportive responses. In contrast, for parents of children with an autism diagnosis, their responses were less strongly associated with these child characteristics. Importantly, some of the young children in this study who did not have an autism diagnosis had significant social-communication challenges consistent with autism and may in fact be autistic children who haven't been diagnosed yet. These results suggest that how parents of children <i>with</i> an autism diagnosis respond to their child's emotions may not be as impacted by their child's challenges as parents of children <i>without</i> a diagnosis, perhaps because the autism
这项研究调查了患有自闭症和没有自闭症的孩子的父母如何应对孩子的负面情绪。具体来说,我们(1)比较了支持、非支持和痛苦反应的水平;(2)检验儿童特征(自闭症特征和情绪失调)是否能预测家长的反应;(3)探究自闭症诊断是否调节了这些关联。参与者是来自美国的1780名2至5岁儿童的父母(其中812名被诊断为自闭症)。家长填写《应对儿童消极情绪量表》,报告儿童自闭症特征和情绪失调情况。结果表明,自闭症儿童的父母比无自闭症儿童的父母表现出更多的支持和更少的不支持和痛苦反应。儿童特征和父母反应之间的联系因诊断组而异:未确诊儿童的父母有更多的自闭症特征,他们报告了更多的不支持和痛苦反应,而这些联系在确诊儿童的父母中较弱或不存在。情绪失调也与父母的反应有关,两组之间存在细微差异。研究结果表明,自闭症诊断可能会影响父母对孩子情绪的理解和反应。这项研究观察了2到5岁的孩子的父母在他们的孩子心烦意乱时,有自闭症和没有自闭症的孩子的父母是如何反应的。共有1780名父母完成了一份调查问卷,调查内容是他们以支持(例如安慰孩子)和不支持(例如说孩子反应过度,惩罚孩子)的方式回应孩子负面情绪的可能性有多大。目的是观察自闭症儿童的父母与非自闭症儿童的父母的反应是否不同,并了解儿童的某些特征,如社交沟通和情感挑战,是否会影响父母的反应。与确诊儿童的父母相比,自闭症儿童的父母通常报告了更多的支持性反应,而较少的非支持性反应,尽管这些差异非常小。对于没有自闭症诊断的孩子的父母来说,孩子有更多的社交或情感挑战与更多的不支持反应有关。相比之下,对于被诊断为自闭症的孩子的父母,他们的反应与孩子的这些特征的联系不那么强烈。重要的是,在这项研究中,一些没有被诊断为自闭症的幼儿有明显的与自闭症一致的社交障碍,实际上可能是尚未被诊断出的自闭症儿童。这些结果表明,自闭症儿童的父母对孩子情绪的反应可能不会像没有自闭症儿童的父母那样受到孩子挑战的影响,也许是因为自闭症诊断为父母提供了对这些挑战的理解和支持。这突出了早期识别自闭症和为所有父母提供支持的重要性,特别是那些有社交和情感障碍的孩子的父母。
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Autism
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