Research in Autism Spectrum Disorders最新文献

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Perspectives of autistic students and their teachers on self-determination and peer support 自闭症学生及其教师对自我决定和同伴支持的看法
IF 2.2 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-09-01 Epub Date: 2024-06-25 DOI: 10.1016/j.rasd.2024.102438
Jessie C. Kiblen , Karrie A. Shogren , LaRon Scott , Delia Kan , Barbara Bossen , Kara Hume
{"title":"Perspectives of autistic students and their teachers on self-determination and peer support","authors":"Jessie C. Kiblen ,&nbsp;Karrie A. Shogren ,&nbsp;LaRon Scott ,&nbsp;Delia Kan ,&nbsp;Barbara Bossen ,&nbsp;Kara Hume","doi":"10.1016/j.rasd.2024.102438","DOIUrl":"https://doi.org/10.1016/j.rasd.2024.102438","url":null,"abstract":"<div><p>Autistic students may need individualized supports to meet their academic, social, and self-determination needs in inclusive classrooms. However, few evidence-based interventions have been developed to provide these supports for autistic adolescents, and little is known about the perceptions of autistic youth about these interventions in use in high schools. This study aimed to explore the perspectives of autistic students and their teachers on self-determination and peer support, as well as their thoughts about two evidence-based interventions used in their classroom settings: the Self-Determined Learning Model of Instruction and Peer Supports. An overall theme of empowerment was identified from student and teacher data collected across the interventions, which highlighted the importance of enabling students to access these interventions in inclusive environments. Autistic students experienced growth in understanding their identity and role as students, peers, and learners, and many felt empowered to set and achieve goals important to their future success. Teachers noted increased self-confidence and assertiveness in students pursuing their goals, highlighting the need for inclusive interventions that address positive in-school and post-school outcomes for secondary autistic students.</p></div>","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"117 ","pages":"Article 102438"},"PeriodicalIF":2.2,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1750946724001132/pdfft?md5=19b767c4e356db581963fbeb39371f95&pid=1-s2.0-S1750946724001132-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141481402","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The effects of the COVID-19 pandemic on mental health in mothers of autistic children and mothers of children with fragile X syndrome COVID-19 大流行对自闭症儿童母亲和脆性 X 综合征儿童母亲心理健康的影响
IF 2.2 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-09-01 Epub Date: 2024-08-28 DOI: 10.1016/j.rasd.2024.102465
Carly Moser , Laura Friedman, Katherine Bangert , Alexandra Hickey , Jennifer Sun, Jessica Klusek
{"title":"The effects of the COVID-19 pandemic on mental health in mothers of autistic children and mothers of children with fragile X syndrome","authors":"Carly Moser ,&nbsp;Laura Friedman,&nbsp;Katherine Bangert ,&nbsp;Alexandra Hickey ,&nbsp;Jennifer Sun,&nbsp;Jessica Klusek","doi":"10.1016/j.rasd.2024.102465","DOIUrl":"10.1016/j.rasd.2024.102465","url":null,"abstract":"<div><h3>Background</h3><p>The COVID-19 pandemic adversely affected the mental health of American mothers and mothers of children with disabilities may have been disproportionately impacted. The present study characterized psychological well-being, social support, and caregiving responsibilities during the pandemic across mothers of children with autism, fragile X syndrome (FXS), and neurotypical children.</p></div><div><h3>Methods</h3><p>Participants were 54 mothers of children with FXS, 46 mothers of autistic children, and a control group of 80 mothers of neurotypical children. Mothers completed questionnaires on depressive and anxiety symptoms, perceived decline in psychological well-being due to the pandemic, pandemic-related changes in caregiving responsibilities, and levels of social support.</p></div><div><h3>Results</h3><p>Over half of the mothers of children with autism and over one-third of the mothers of children with FXS reported clinically significant symptoms of depression and anxiety, with rates significantly higher than the control mothers. Though all mothers reported a surge in caregiving responsibilities, mothers of children with FXS experienced greater increases in caregiving responsibilities and social support was lower in both disability groups. Caregiving responsibilities and social support were associated with psychological well-being due to the pandemic across all groups.</p></div><div><h3>Conclusions</h3><p>Findings highlight the harsh impact of the pandemic on the mental health of mothers of children with FXS and autism. The staggering rate of clinical depressive and anxiety symptoms reported by these groups underscores the urgent need for improved access to psychological services and family-centered supports, with increased caregiving responsibilities and inadequate social support representing important risk factors for mental health problems.</p></div>","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"117 ","pages":"Article 102465"},"PeriodicalIF":2.2,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142089039","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
A cross-linguistic examination of language measures in autism: A comparison between Dutch and English 自闭症语言测量的跨语言研究:荷兰语和英语的比较
IF 2.2 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-09-01 Epub Date: 2024-08-10 DOI: 10.1016/j.rasd.2024.102461
Marjolein Mues , Yanru Chen , Ellen Demurie , Maide Erdogan , Sarah Schaubroeck , Helen Tager-Flusberg , Herbert Roeyers
{"title":"A cross-linguistic examination of language measures in autism: A comparison between Dutch and English","authors":"Marjolein Mues ,&nbsp;Yanru Chen ,&nbsp;Ellen Demurie ,&nbsp;Maide Erdogan ,&nbsp;Sarah Schaubroeck ,&nbsp;Helen Tager-Flusberg ,&nbsp;Herbert Roeyers","doi":"10.1016/j.rasd.2024.102461","DOIUrl":"10.1016/j.rasd.2024.102461","url":null,"abstract":"<div><h3>Background</h3><p>Language abilities are highly heterogeneous in autism. While a multimodal assessment approach is recommended to capture the language variability, this is not always possible. Therefore, it is important to gain contextual information about different language assessments to determine which assessment is most appropriate for different research questions. As most current work is based on English-speaking populations, this paper compares three language assessment modalities (standardized assessment, parent survey, and a natural language sample) between English-speaking and Dutch-speaking autistic and neurotypical children.</p></div><div><h3>Method</h3><p>The Mullen Scales of Early Learning, the Vineland Adaptive Behavior Scales and a naturalistic language sample were employed to measure language in 100 preschool-aged participants. Correlation analyses and mixed-effect regressions were conducted, and Bland-Altman plots were created to examine the similarity between measures.</p></div><div><h3>Results</h3><p>English-speaking and Dutch-speaking parents rated their children’s expressive language higher than their receptive language. The best agreement between measures was for standardized language and parent report. Agreement was higher for children with low language scores. Primary language (English vs. Dutch) did not significantly affect the results, but age, nonverbal cognitive abilities and biological sex were shown to predict expressive and receptive language outcome.</p></div><div><h3>Conclusions</h3><p>For autistic children with low language levels, parent-reported and standardized language measures provide researchers with similar information. Depending on the available time and resources, researchers may choose to use one of these methods. However, for autistic children with (above) average language abilities, multiple modalities should be considered to gain a comprehensive understanding of their language abilities across different settings. A natural language sample is of most added value next to a standardized assessment or parent report.</p></div>","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"117 ","pages":"Article 102461"},"PeriodicalIF":2.2,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1750946724001363/pdfft?md5=c6b90b954f3115d68b528388f4bc6dd0&pid=1-s2.0-S1750946724001363-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141952541","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Identifying the functions of restricted and repetitive behaviours and interests in Autism: A scoping review. 识别自闭症患者限制性和重复性行为及兴趣的功能:范围综述。
IF 2.2 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-09-01 Epub Date: 2024-07-27 DOI: 10.1016/j.rasd.2024.102458
Stephanie Lock Man Lung , Ève Picard , Isabelle Soulières , Armando Bertone
{"title":"Identifying the functions of restricted and repetitive behaviours and interests in Autism: A scoping review.","authors":"Stephanie Lock Man Lung ,&nbsp;Ève Picard ,&nbsp;Isabelle Soulières ,&nbsp;Armando Bertone","doi":"10.1016/j.rasd.2024.102458","DOIUrl":"10.1016/j.rasd.2024.102458","url":null,"abstract":"<div><p>Restricted and repetitive behaviours and interests (RRBIs) are common and integral to the everyday living of autistic persons. While RRBIs are often seen as negative behaviours to be subdued, they may serve regulatory roles that are central to an autistic way of being. Moreover, RRBIs are often present in early childhood and are associated with developmental benefits. Therefore, the continued presence of RRBIs among autistic persons beyond early childhood suggests that RRBIs may serve adaptive functions. To inform and improve clinical decision-making and gain a deeper understanding of the adaptive roles of RRBIs, a scoping review methodology was used to identify the key functions of RRBIs in autism. Our results resulted in 21 studies from the PsycINFO and Medline databases among the 3162 studies on RRBIs published between 2010 and 2023 retrieved. Four themes of functions were identified and mapped onto the subdomains of RRBIs. Specifically, results indicated that RRBIs (i) help autistic persons regulate sensory experiences, (ii) cope with feelings of anxiety, (iii) introduce certainty to their environment, and (iv) make sense of their world. This paper highlights the constructive characteristics of RRBIs and presents an alternative perspective to understand them and help inform decisions about whether and how RRBIs should be managed. Future research should focus on gathering qualitative insights into RRBIs from the perspectives of autistic persons and developing nuanced approaches to managing RRBIs by considering their functions.</p></div>","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"117 ","pages":"Article 102458"},"PeriodicalIF":2.2,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141882526","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
“Education would be step number one”: Community mental health clinicians’ training and support needs to treat anxiety in autistic youth "教育是第一步社区心理健康临床医生治疗自闭症青少年焦虑症的培训和支持需求
IF 2.2 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-09-01 Epub Date: 2024-07-06 DOI: 10.1016/j.rasd.2024.102450
Shannon C. LaPoint , Grace Lee Simmons , Julia Heinly , Daylin Delgado , Whitney S. Shepherd , Lauren Brookman-Frazee , Eric A. Storch , Brenna B. Maddox
{"title":"“Education would be step number one”: Community mental health clinicians’ training and support needs to treat anxiety in autistic youth","authors":"Shannon C. LaPoint ,&nbsp;Grace Lee Simmons ,&nbsp;Julia Heinly ,&nbsp;Daylin Delgado ,&nbsp;Whitney S. Shepherd ,&nbsp;Lauren Brookman-Frazee ,&nbsp;Eric A. Storch ,&nbsp;Brenna B. Maddox","doi":"10.1016/j.rasd.2024.102450","DOIUrl":"https://doi.org/10.1016/j.rasd.2024.102450","url":null,"abstract":"<div><h3>Background</h3><p>Autistic youth experience high rates of anxiety, which has been treated with modified cognitive-behavioral therapy (CBT), often integrating exposure therapy. Such anxiety treatments are effective for this population; however, there remains a gap between these evidence-based mental health interventions and their implementation in community mental health (CMH) services where autistic youth receive care.</p></div><div><h3>Method</h3><p>This qualitative study conducted semi-structured interviews with four types of community members in the United States: 15 autistic youth with anxiety, 15 caregivers of autistic youth with anxiety, 11 CMH clinicians, and 8 CMH clinic leaders. Participants identified the training needs of CMH clinicians to support the delivery of CBT for autistic youth with anxiety.</p></div><div><h3>Results</h3><p>Through inductive thematic analysis, three themes were found: presentation of autism and anxiety, intervention delivery, and training format. Participants highlighted the need for clinician education to understand the varying presentations of autism and co-occurring anxiety and how to effectively deliver a personalized mental health intervention for autistic youth. Clinicians also desired a clinician training program that includes engaging components and offers individualized, ongoing support while the intervention is delivered.</p></div><div><h3>Conclusions</h3><p>Findings from this study will inform the development of a clinician training program to deliver CBT modified for autistic youth with anxiety in CMH contexts.</p></div>","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"117 ","pages":"Article 102450"},"PeriodicalIF":2.2,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141593274","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Autism spectrum disorder (ASD) diagnosis: A biochemical investigation into the diagnostic utility of S-adenosylmethionine (SAM), S-adenosylhomocysteine (SAH) levels and the SAM/SAH ratio 自闭症谱系障碍(ASD)诊断:对 S-腺苷蛋氨酸(SAM)、S-腺苷高半胱氨酸(SAH)水平和 SAM/SAH 比值诊断效用的生化研究
IF 2.2 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-09-01 Epub Date: 2024-08-16 DOI: 10.1016/j.rasd.2024.102464
Tuğba Polat , Zafer Yönden , Amin Daemi , Yusuf Döğüş , Hülya Binokay , Perihan Çam Ray , Çağlar Charles Daniel Jaicks
{"title":"Autism spectrum disorder (ASD) diagnosis: A biochemical investigation into the diagnostic utility of S-adenosylmethionine (SAM), S-adenosylhomocysteine (SAH) levels and the SAM/SAH ratio","authors":"Tuğba Polat ,&nbsp;Zafer Yönden ,&nbsp;Amin Daemi ,&nbsp;Yusuf Döğüş ,&nbsp;Hülya Binokay ,&nbsp;Perihan Çam Ray ,&nbsp;Çağlar Charles Daniel Jaicks","doi":"10.1016/j.rasd.2024.102464","DOIUrl":"10.1016/j.rasd.2024.102464","url":null,"abstract":"&lt;div&gt;&lt;h3&gt;Background&lt;/h3&gt;&lt;p&gt;The balance between SAM and SAH ratios is critical for cellular methylation capacity such that a decrease in this ratio signals decrease the methylation potential, impacting cellular functions. In Autism Spectrum Disorder (ASD), impaired methylation processes are prominent, disrupting essential methyl group transfers crucial for DNA methylation, neurotransmitter synthesis, and detoxification. This disturbance affects gene expression and neural function, contributing to ASD development. This paper aims to explore ASD's pathogenesis by investigating biochemical parameters linked to the methylation cycle. For this purpose, some laboratory parameters are employed to aid in the understanding of potential laboratory abnormalities in ASD in children aged 2 to 8 years.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Materials and Methods&lt;/h3&gt;&lt;p&gt;This study included a cohort of 43 children aged 2 to 8 years diagnosed ASD, alongside a control group of 43 age-and gender-matched healthy subjects. The serum of blood samples taken was used to measure biochemical factors. Specimens were processed using ELISA instrumentation and hemogram auto analyzers. The study conducted a statistical comparison between the ASD-diagnosed subjects and healthy controls, focusing on levels of S-adenosyl methionine (SAM), S-adenosyl homocysteine (SAH), Glycine N-methyltransferase (GNMT), and platelet counts.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;RESULTS&lt;/h3&gt;&lt;p&gt;The levels of SAH and platelets were significantly higher in the case group compared to the control group. Conversely, levels of SAM, as well as the SAM/SAH ratio, were found to be significantly lower in the case group than in the control group (p &lt; 0.05). No statistically significant difference was observed in the levels of GNMT when compared (p &gt; 0.05). Receiver Operating Characteristic (ROC) analysis revealed that the diagnostic performance for SAM had an area under the curve (AUC) of 0.876, with a cut-off point determined at 286.9 ng/mL, yielding a sensitivity of 85 % and a specificity of 75 %. For SAH, the AUC was calculated to be 0.671, with a cut-off point set at 0.49 ng/mL, resulting in a sensitivity and specificity of 64 %. The SAM/SAH ratio demonstrated an AUC of 0.806, with the cut-off point established at 576.3, leading to a sensitivity and specificity of 72 %. A significant negative correlation was detected between the scores of the Modified Checklist for Autism in Toddlers (M-CHAT) and both SAM levels and the SAM/SAH ratio. The analysis indicated that an increase of one unit (1 ng/mL) in SAM levels is associated with a decreased autism risk by a factor of 1/0.914 = 1.1 %, whereas an increase of one unit (1 × 10&lt;sup&gt;3&lt;/sup&gt;/µL) in platelet count is associated with an increased autism risk by a factor of 1.019 %. Regarding glycine N-methyltransferase, no significant difference was observed between the two groups.&lt;/p&gt;&lt;/div&gt;&lt;div&gt;&lt;h3&gt;Conclusion&lt;/h3&gt;&lt;p&gt;Follow-up studies with larger samples will be needed to better understand the poten","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"117 ","pages":"Article 102464"},"PeriodicalIF":2.2,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141998484","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
A systematic review of cardiac autonomic reactivity to face-to-face social stressor stimuli in children and adolescents with autism spectrum disorder 自闭症谱系障碍儿童和青少年面对面社交压力刺激时心脏自律神经反应的系统性综述
IF 2.2 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-09-01 Epub Date: 2024-07-31 DOI: 10.1016/j.rasd.2024.102459
Agnes S.K. Wong , Samantha Burns , Selena Chen, Earl Woodruff
{"title":"A systematic review of cardiac autonomic reactivity to face-to-face social stressor stimuli in children and adolescents with autism spectrum disorder","authors":"Agnes S.K. Wong ,&nbsp;Samantha Burns ,&nbsp;Selena Chen,&nbsp;Earl Woodruff","doi":"10.1016/j.rasd.2024.102459","DOIUrl":"10.1016/j.rasd.2024.102459","url":null,"abstract":"<div><h3>Background</h3><p>Research suggests that individuals with autism spectrum disorder (ASD) exhibit heightened responses to social stressors, putting them at higher risk to psychopathology. However, the findings are inconsistent. Considering the unavoidable social interactions in daily life, synthesizing the literature on physiological reactivity to social stressor stimuli in individuals with ASD is crucial.</p></div><div><h3>Aims</h3><p>To investigate the cardiac autonomic reactivity to face-to-face social stressor stimuli in children and adolescents with ASD.</p></div><div><h3>Methods</h3><p>Literature was identified from four databases and grey literature. The inclusion criteria were children and youth with ASD aged 18 or below, social stimuli that occurred face-to-face, and physiological measures of cardiac autonomic reactivity.</p></div><div><h3>Results</h3><p>Twenty studies were included, with a sample size of 1064 (548 ASD samples). Five unique measures were reported. A preliminary pattern of blunted respiratory sinus arrhythmia (RSA) reactivity was found in ASD compared to the typically developing (TD) individuals. Interestingly, a pattern of higher or no significant differences in heart rate (HR) responses in ASD compared to TD was noted when a familiar person was used, but blunted when a novel person was used.</p></div><div><h3>Conclusions</h3><p>Atypical cardiac autonomic reactivity in ASD was demonstrated with contrasting responses depending on familiarity. Implications for interventions are discussed.</p></div>","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"117 ","pages":"Article 102459"},"PeriodicalIF":2.2,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141882525","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Development of a standardized set of outcomes for autism spectrum disorder: The International Consortium for Health Outcomes Measurement (ICHOM) 为自闭症谱系障碍制定一套标准化结果:国际健康结果衡量联合会 (ICHOM)
IF 2.2 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-09-01 Epub Date: 2024-07-27 DOI: 10.1016/j.rasd.2024.102451
Andria Joseph , Ivy Chong , Zofia Das-Gupta , Claudia Bandeira de Lima , Dennis Dixon , Svyatoslav Dovbnya , Ellen Fittro , Peter Gerhardt , Weihe Huang , Braden Josephson , Dan Li , Neil Martin , Shaneel Mukerji , Kristine Rodriguez , Hanna Rue , Kim Strunk , Jonathan Tarbox , Yagnesh Vadgama , Amber Valentino , Javier Virues-Ortega , Sandra Willis
{"title":"Development of a standardized set of outcomes for autism spectrum disorder: The International Consortium for Health Outcomes Measurement (ICHOM)","authors":"Andria Joseph ,&nbsp;Ivy Chong ,&nbsp;Zofia Das-Gupta ,&nbsp;Claudia Bandeira de Lima ,&nbsp;Dennis Dixon ,&nbsp;Svyatoslav Dovbnya ,&nbsp;Ellen Fittro ,&nbsp;Peter Gerhardt ,&nbsp;Weihe Huang ,&nbsp;Braden Josephson ,&nbsp;Dan Li ,&nbsp;Neil Martin ,&nbsp;Shaneel Mukerji ,&nbsp;Kristine Rodriguez ,&nbsp;Hanna Rue ,&nbsp;Kim Strunk ,&nbsp;Jonathan Tarbox ,&nbsp;Yagnesh Vadgama ,&nbsp;Amber Valentino ,&nbsp;Javier Virues-Ortega ,&nbsp;Sandra Willis","doi":"10.1016/j.rasd.2024.102451","DOIUrl":"10.1016/j.rasd.2024.102451","url":null,"abstract":"<div><h3>Background</h3><p>Autism spectrum disorder (ASD) is characterized by persistent deficits in reciprocal social interaction, communication, and restricted, repetitive, behaviour, that are atypical or excessive for the individual’s age and sociocultural context (Diagnostic and Statistical Manual 5th ed TR.; 2022). The rate of ASD continues to increase and remains a concern due to inequitable access to diagnosis and quality services. A lack of standardization in assessment and treatment presents further difficulty in benchmarking and improving care.</p></div><div><h3>Method</h3><p>The International Consortium for Health Outcomes Measurement (ICHOM) recruited a Working Group (WG) of 20 subject matter experts, including researchers, clinicians, policy makers, and lived-experience experts to identify a minimum set of measurable outcomes along with case mix variables (i.e., risk adjustment factors). A proposed set of Patient Centered Outcome Measures (henceforth known as the ASD Set) was identified and endorsed using a modified Delphi process to reach consensus.</p></div><div><h3>Results</h3><p>The WG took into consideration variation in global health, social care and educational systems were considered to ensure implementation of the ASD Set is feasible. The Set includes a core set of measurable outcomes (i.e., domains) that include core symptoms, daily functioning, accessibility, and support.</p></div><div><h3>Conclusions</h3><p>The ICHOM ASD Set is a scientifically-sound, internationally vetted tool that will enable assessment of care for individuals with ASD that can facilitate targeted, person-centered clinical and social inclusion strategies. Large scale implementation and use should generate standardized data describing the individual's health and wellbeing that can inform decision-making, quality improvement and best-practices insights.</p></div>","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"117 ","pages":"Article 102451"},"PeriodicalIF":2.2,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141882463","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Telehealth-delivered behavioral sleep interventions for Autistic children: An evaluation of an enhanced stepped-care approach 针对自闭症儿童的远程医疗行为睡眠干预:对增强型阶梯护理方法的评估
IF 2.2 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-09-01 Epub Date: 2024-07-05 DOI: 10.1016/j.rasd.2024.102456
Monique Clarke , Laurie McLay , Karyn France , Neville Blampied
{"title":"Telehealth-delivered behavioral sleep interventions for Autistic children: An evaluation of an enhanced stepped-care approach","authors":"Monique Clarke ,&nbsp;Laurie McLay ,&nbsp;Karyn France ,&nbsp;Neville Blampied","doi":"10.1016/j.rasd.2024.102456","DOIUrl":"https://doi.org/10.1016/j.rasd.2024.102456","url":null,"abstract":"<div><h3>Background</h3><p>Sleep problems are common among Autistic children and can have adverse effects on their development, well-being and quality of life. Telehealth offers a cost-effective and accessible model of delivering evidence-based sleep support. This study used a single-case design to evaluate the efficacy of telehealth-delivered behavioral sleep intervention (TDBSI), with intervention phases designed based according to a stepped-care approach.</p></div><div><h3>Method</h3><p>Fourteen Autistic children (3–17 years) and their parents participated in a 12-week program consisting of three sequential intervention phases: 1) self-directed online parent education supplemented with individualized intervention tip sheets, 2) group parent coaching via video conferencing, and 3) individualized parent coaching via video conferencing. The appropriateness of parent strategy selection and implementation fidelity was rated throughout. Sleep problem severity (SPS) scores are reported for each child as a measure of effect across intervention phases. The Children's Sleep Habits Questionnaire (CSHQ) and CSHQ-Autism are reported as measures of change from baseline to post-intervention.</p></div><div><h3>Results</h3><p>Online parent education and tip sheets facilitated early success in parent strategy selection and implementation fidelity. SPS scores demonstrated large and statistically significant improvements in child sleep following the self-directed phase. Parent implementation fidelity and child sleep outcomes were further improved with group and individualized coaching. Post-intervention, the CSHQ and CSHQ-Autism revealed large and statistically significant improvements across subscales and participants compared to baseline.</p></div><div><h3>Conclusions</h3><p>Online parent education supplemented with individualized tip sheets demonstrates potential for addressing sleep problems in Autistic children. Therapist-led group and individualized parent coaching via videoconferencing show promise as higher intensity support for parents who do not achieve satisfactory results initially.</p></div>","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"117 ","pages":"Article 102456"},"PeriodicalIF":2.2,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S1750946724001314/pdfft?md5=9b53d8d7b698492a70a760f7ab30d463&pid=1-s2.0-S1750946724001314-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141541410","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Sleep patterns of children with Cri du Chat syndrome before and during the COVID-19 pandemic: An observational study Cri du Chat 综合征患儿在 COVID-19 大流行之前和期间的睡眠模式:观察研究
IF 2.5 4区 医学
Research in Autism Spectrum Disorders Pub Date : 2024-08-01 Epub Date: 2024-06-08 DOI: 10.1016/j.rasd.2024.102439
Sandra D. Xavier , Vinícius Dokkedal-Silva , Guilherme L. Fernandes , Gabriel N. Pires , Sergio Tufik , Monica L. Andersen
{"title":"Sleep patterns of children with Cri du Chat syndrome before and during the COVID-19 pandemic: An observational study","authors":"Sandra D. Xavier ,&nbsp;Vinícius Dokkedal-Silva ,&nbsp;Guilherme L. Fernandes ,&nbsp;Gabriel N. Pires ,&nbsp;Sergio Tufik ,&nbsp;Monica L. Andersen","doi":"10.1016/j.rasd.2024.102439","DOIUrl":"https://doi.org/10.1016/j.rasd.2024.102439","url":null,"abstract":"<div><h3>Background</h3><p>Sleep patterns in children with Cri du Chat syndrome (CDC) remain understudied. The pandemic and isolation disrupted routines, potentially affecting their sleep.</p></div><div><h3>Methods</h3><p>We compared the sleep characteristics of 53 children with CDC before and during the COVID-19-related social isolation periods with that of 106 children with autism spectrum disorder (ASD) and 160 without either condition (comparison group), using the adapted Brief Infant Sleep Questionnaire (BISQ). The variables wake after sleep onset (WASO), awakenings, environment, strategies, and sleep latency were dichotomized based on relevant outcomes. Binomial logistic models were used for binomial outcomes and the lowest Akaike Information Criteria determined total sleep time distribution. Generalized estimating equations examined pandemic effects and intergroup differences. Multinomial regressions assessed pandemic and disorder impact on child and caregiver sleep quality.</p></div><div><h3>Results</h3><p>Children with CDC had higher WASO, awakenings, and poorer sleep compared with the ASD and comparison groups in the pre-pandemic assessment</p></div><div><h3>Discussion</h3><p>These findings emphasize the importance of addressing sleep impairment in children with CDC to improve their overall well-being, both during exceptional circumstances like the pandemic and in their daily routines. The study provides valuable insights into sleep patterns and highlights the impact of the pandemic on sleep quality in different neurodevelopmental populations.</p></div>","PeriodicalId":48255,"journal":{"name":"Research in Autism Spectrum Disorders","volume":"116 ","pages":"Article 102439"},"PeriodicalIF":2.5,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141290381","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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