Pub Date : 2025-12-01Epub Date: 2025-08-05DOI: 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。
{"title":"Parental distress, marital satisfaction, and functional impairments in autistic children: A family perspective from Türkiye.","authors":"Nazlı Özoğuz, Mustafa Balkanas, Mahmut Cem Tarakçıoğlu","doi":"10.1177/13623613251362263","DOIUrl":"10.1177/13623613251362263","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"3156-3165"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144783372","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-07-09DOI: 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.
{"title":"Masking, social context and perceived stress in autistic adults: An ecological momentary assessment study.","authors":"Anke M Scheeren, Smiddy Nieuwenhuis, Laura Crane, Yvette Roke, Sander Begeer","doi":"10.1177/13623613251353358","DOIUrl":"10.1177/13623613251353358","url":null,"abstract":"<p><p>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; <i>M</i> 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.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"3002-3013"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12618727/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144599236","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-07-05DOI: 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。
{"title":"How well can commonly used anxiety scales detect treatment outcomes in the context of autism?","authors":"Huilin Chen, Jeffrey J Wood, Connor M Kerns, Eric A Storch, Philip C Kendall, Gaia Scerif, Cathy Creswell","doi":"10.1177/13623613251349929","DOIUrl":"10.1177/13623613251349929","url":null,"abstract":"<p><p>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 abstract<b>Study on the utility of anxiety scales to detect anxiety diagnostic treatment outcomes in autistic children</b><b>Why was the study done?</b> 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.<b>What did the researchers do?</b> 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).<b>What did the researchers find?</b> This study found that the CAIS-P did better than conventional anxiety symptom measures in detecting treatment outcomes for anxiety problems in autistic children.<b>What do the findings mean?</b> This study adds to the current evidence base to inform choices of measurement of anxiety problems in the context of autism.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2991-3001"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12360284/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144567016","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-06-29DOI: 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.
{"title":"Outcomes of the World Health Organization's Caregiver Skills Training Program for Eritrean and Ethiopian parents of autistic children in the United States.","authors":"Sarah Dababnah, Waganesh A Zeleke, Yoonzie Chung, Rachel Antwi Adjei, Pamela Dixon, Erica Salomone","doi":"10.1177/13623613251351345","DOIUrl":"10.1177/13623613251351345","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2941-2954"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144526314","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-08-21DOI: 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.
{"title":"Potential association between altered oral microbiota and oxidative stress in individuals with autism.","authors":"Liyan Zhong, Pengcheng Ren, Haibo Wang, Chenghui Fu, Dingxia Feng, Min Wang, Liqin Zeng, Paul Yao, Tao Wang","doi":"10.1177/13623613251362259","DOIUrl":"10.1177/13623613251362259","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"3166-3179"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12618726/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144940286","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
<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
{"title":"What are we targeting when we support inclusive education for autistic students? A systematic review of 233 empirical studies and call for community partnerships.","authors":"Valentine Perrelet, Aline Veyre, Léa Chawki, Claire Margot, Émilie Cappe","doi":"10.1177/13623613251352223","DOIUrl":"10.1177/13623613251352223","url":null,"abstract":"<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","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2927-2940"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12618732/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144774601","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-09-09DOI: 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.
{"title":"Contextual factors influencing neuro-affirming practice: Identifying what helps or hinders implementation in health and social care.","authors":"Anna Gray, Donald Maciver, Eleanor Curnow, Lorna Johnston, Marion Rutherford","doi":"10.1177/13623613251360275","DOIUrl":"10.1177/13623613251360275","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"3111-3123"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12618718/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145028813","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-06-25DOI: 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
{"title":"Development of a Goal Attainment Scale (GAS) outcome measure for clinical interventional studies in paediatric autism.","authors":"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","doi":"10.1177/13623613251349904","DOIUrl":"10.1177/13623613251349904","url":null,"abstract":"<p><p>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 (<i>N</i> = 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","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"2975-2990"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12618709/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144482931","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01Epub Date: 2025-08-12DOI: 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.
{"title":"Consensus recommendations for usability and acceptability of mobile health autism screening tools.","authors":"Gabriella Tangkilisan, Luis Rivas Vazquez, Plyce Fuchu, Benjamin Sanders, Jill K Dolata, Steven Bedrick, Eric Fombonne, Sarabeth Broder-Fingert, Katharine E Zuckerman","doi":"10.1177/13623613251360276","DOIUrl":"10.1177/13623613251360276","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"3100-3110"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12411648/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144820455","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01DOI: 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
{"title":"Associations between child characteristics and parent response to emotion differ in young children with and without an autism diagnosis.","authors":"Jessie B Northrup, Soo Youn Kim, Carla A Mazefsky","doi":"10.1177/13623613251395122","DOIUrl":"https://doi.org/10.1177/13623613251395122","url":null,"abstract":"<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 ","PeriodicalId":8724,"journal":{"name":"Autism","volume":" ","pages":"13623613251395122"},"PeriodicalIF":5.6,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145647109","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}