Advances in Neurodevelopmental Disorders最新文献

{"title":"Identifying and Validating Indices of Happiness and Unhappiness in Autistic Children and Examining Them as Quality of Life Indicators During Presession Pairing","authors":"Tuhina Agarwal,&nbsp;Devon Ramey","doi":"10.1007/s41252-023-00352-3","DOIUrl":"10.1007/s41252-023-00352-3","url":null,"abstract":"<div><h3>Objectives</h3><p>Happiness is paramount to an improved quality of life (QoL), but there are barriers to assessing the happiness and overall QoL of autistic children using traditional measures. To address this, Study 1 aimed to identify and validate the idiosyncratic mood indices of three autistic children. In Study 2, these indices were measured as QoL indicators during discrete trial teaching (DTT) sessions that followed presession pairing. Task engagement was recorded as a secondary measure.</p><h3>Methods</h3><p>Three preschool boys on the autism spectrum participated in both studies. Their individualized indices of happiness and unhappiness were first identified and validated using an abbreviated procedure that extended previous research. The effects of presession pairing were then examined using a concurrent multiple baseline design across participants. The idiosyncratic mood indices were measured using 10-s partial interval recording, while task engagement was measured using 15-s whole interval recording.</p><h3>Results</h3><p>Study 1 demonstrated that the abbreviated procedure was efficient for identifying and validating the idiosyncratic mood indices of the participants. Study 2 found that presession pairing improved the mood of all three children during DTT, but there were minimal increases in task engagement. Percentage of nonoverlapping data (PND) scores initially revealed no effects for indices of happiness (<i>M</i> = 43.2%), large effects for indices of unhappiness (<i>M</i> = 76.4%), and no effects for task engagement (<i>M</i> = 37.6%). Contrary to this, omnibus Tau-U scores suggested large effects for indices of happiness (Tau-U = 0.7), very large effects for indices of unhappiness (Tau-U = 0.9), and moderate effects for task engagement (Tau-U = 0.5).</p><h3>Conclusions</h3><p>Individualized indices of happiness and unhappiness can and should be used as QoL indicators during behavioral interventions for autistic children.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"8 3","pages":"429 - 444"},"PeriodicalIF":1.3,"publicationDate":"2023-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00352-3.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90044016","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Prospective, Longitudinal Study of Caregiver-Reported Adaptive Skills and Function of Individuals with HNRNPH2-related Neurodevelopmental Disorder","authors":"Thomas J. Davis,&nbsp;Rachel Salazar,&nbsp;Sarah Beenders,&nbsp;Amelia Boehme,&nbsp;Nicole M. LaMarca,&nbsp;Jennifer M. Bain","doi":"10.1007/s41252-023-00346-1","DOIUrl":"10.1007/s41252-023-00346-1","url":null,"abstract":"<div><h3>Objectives</h3><p>This study presents a cohort of individuals in a natural history study with de novo pathogenic missense variants in <i>HNRNPH2</i> causative of <i>HNRNPH2</i>-related neurodevelopmental disorder (NDD) to describe individuals’ adaptive functional abilities.</p><h3>Methods</h3><p>We measured adaptive function using the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) and the Vineland Adaptive Behavior Scale (VABS-III). Results were compared using inferential statistics and regression analysis.</p><h3>Results</h3><p>Sixty-seven individuals carried known pathogenic or likely pathogenic variants in <i>HNRNPH2</i>. Thirty-five participants (2.89–42.04 years, 83% female) and caregivers completed PEDI-CAT assessments with 25 of these participants completing the VABS-III. Sixteen, three and two participants completed a follow-up PEDI-CAT assessment at one, two and three years respectively. Individuals had mean normative scores less than age-matched peers across all domains on both PEDI-CAT and VABS-III measures, with 91% participants &lt; 5^th percentile on both the PEDI- CAT and VABS-III. Verbal and ambulatory participants had significantly higher PEDI-CAT scores across all domains, using both raw and normative data. There was no significant change in PEDI-CAT scores over 3 years.</p><h3>Conclusions</h3><p>Overall scores, both raw and normative, are low across all individuals with <i>HNRNPH2</i>-related NDD using both the PEDI-CAT and VABS-III. PEDI-CAT normative scores do not likely represent the clinical variability, but raw scores may be able to capture functional variability. In a small sample, longitudinal data from the PEDI-CAT domain scores demonstrate stability in performance at 3 years.</p><p><b>Trial Registration</b>: ClinicalTrials.gov NCT03492060.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"8 3","pages":"445 - 456"},"PeriodicalIF":1.3,"publicationDate":"2023-08-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11358239/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87974096","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Rights Are Necessary but Insufficient for the Achievement of the Full Inclusion of People with Intellectual and Developmental Disabilities","authors":"Trevor R. Parmenter","doi":"10.1007/s41252-023-00351-4","DOIUrl":"10.1007/s41252-023-00351-4","url":null,"abstract":"<div><h3>Objectives</h3><p>Two forces which are in juxtaposition have been impacting upon the achievement of full inclusion and emancipation of people with intellectual and related developmental disabilities into society. The first is the history of the United Nations human rights declarations and conventions. While human rights initiatives have supported grassroots movements such as choice, self-determination, and person-centred supports, the second force, neoliberal philosophy, has commandeered these concepts into a culture of managerialism and individualism. Whether rights are necessary but insufficient for the achievement of the full inclusion of people with intellectual and developmental disabilities needed to be addressed.</p><h3>Methods</h3><p>The history of the human rights movement was explored leading up to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). The impact of countervailing forces of neoliberal policies were explored. The ongoing development of models of disability were examined, as were threats to implementation and the realisation of outcomes.</p><h3>Results</h3><p>The impact of neoliberal policies by member nations and the juridical nature of the CRDP were found to be limiting factors for genuine community acceptance and inclusion of people with disabilities, especially those with intellectual disabilities.</p><h3>Conclusions</h3><p>Member nations conforming to human rights imperatives also need to encourage the building an ethical community in which reciprocal relationships are fostered and celebrated. Individualism and the market-based economies have failed to recognise the important role communality has played in the history of the human species.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"8 1","pages":"97 - 107"},"PeriodicalIF":1.3,"publicationDate":"2023-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00351-4.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79150662","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Neurodiversity in Practice: a Conceptual Model of Autistic Strengths and Potential Mechanisms of Change to Support Positive Mental Health and Wellbeing in Autistic Children and Adolescents","authors":"Megan Cherewick,&nbsp;Michael Matergia","doi":"10.1007/s41252-023-00348-z","DOIUrl":"10.1007/s41252-023-00348-z","url":null,"abstract":"<div><h3>Objectives</h3><p>Neurodiversity affirming frameworks are a paradigm shift from a deficit-focused approach to autism to recognizing autism as a heterogeneous constellation of differences in abilities and strengths. This article completed a literature review and data synthesis to (1) identify autistic strengths used in the design of psychosocial interventions, (2) propose mechanisms of change that explain strength-based psychosocial intervention effects on mental health and wellbeing outcomes, and (3) integrate findings in a conceptual model for testing in future research studies.</p><h3>Methods</h3><p>A search for articles was completed in June 2023 and resulted in 24 articles that met the inclusion criteria. The Distillation and Matching Model methods were used to code articles and subsequent conceptual groupings generated categorical domains included in the conceptual model.</p><h3>Results</h3><p>Autistic strengths identified in the design of psychosocial interventions were grouped into four domains: (1) perceptual, (2) reasoning, (3) expertise, and (4) character strengths. Mechanisms of change were grouped into four domains: (1) affective, (2) behavioral, (3) cognitive, and (4) physiological. The resulting conceptual model presents autistic strengths that can be leveraged in psychosocial interventions and potential mechanisms of change that explain intervention effects on mental health and wellbeing.</p><h3>Conclusions</h3><p>Growing focus on the translation of positive psychology has resulted in strength-based psychosocial intervention programs. However, intervention strategies have not leveraged the diverse array of autistic strengths identified by autistic individuals, their families, and their communities. Furthermore, research is needed to determine mechanistic paths by which strength-based interventions achieve positive effects on mental health outcomes in autistic children and adolescents.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"8 3","pages":"408 - 422"},"PeriodicalIF":1.3,"publicationDate":"2023-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00348-z.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83167950","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advanced Language Models: Potential to Improve Augmentative and Alternative Communication for Individuals with Intellectual and Developmental Disabilities","authors":"Russell Lang,&nbsp;Laurie McLay,&nbsp;Mandy Rispoli","doi":"10.1007/s41252-023-00350-5","DOIUrl":"10.1007/s41252-023-00350-5","url":null,"abstract":"<div><h3>Objective</h3><p>This paper explores the potential of advanced language models (ALMs) in enhancing augmentative and alternative communication (AAC) options for individuals with intellectual and developmental disabilities (IDDs).</p><h3>Method</h3><p>Possibilities and limitations of utilizing ALMs, such as ChatGPT, to address the communication challenges faced by individuals with IDDs are considered. Potential strategies for leveraging ALM-based technologies in promoting social communication are discussed while emphasizing the need for careful consideration and research.</p><h3>Results</h3><p>The paper presents an overview of the potential capabilities of AAC with integrated ALM for supporting social communication for individuals with IDDs. Directions for future research are identified, including evaluating message authenticity, enhancing customization options, addressing ethical considerations, exploring long-term adaptation and learning, and conducting user-centered design studies.</p><h3>Conclusion</h3><p>The integration of ALMs into AAC holds promise for promoting social communication and empowering individuals with IDDs, but careful consideration and research are necessary to ensure their effectiveness, ethical use, and user satisfaction.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"7 3","pages":"481 - 484"},"PeriodicalIF":0.0,"publicationDate":"2023-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"50510552","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Dennis H. Reid and Mary Rosswurm: Promoting Desired Lifestyles Among Adults with Severe Autism and Intellectual Disabilities: Person-centered Applications of Behavior Analysis. Elsevier, 2023, 322 pp","authors":"Cooper R. Woodard","doi":"10.1007/s41252-023-00347-0","DOIUrl":"10.1007/s41252-023-00347-0","url":null,"abstract":"","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"7 3","pages":"488 - 489"},"PeriodicalIF":0.0,"publicationDate":"2023-07-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"50504821","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Technological Innovations in the Education and Treatment of Persons with Intellectual and Developmental Disabilities","authors":"Russell Lang,&nbsp;Laurie McLay","doi":"10.1007/s41252-023-00349-y","DOIUrl":"10.1007/s41252-023-00349-y","url":null,"abstract":"<div><h3>Objectives</h3><p>As technological innovations continue to emerge, the range of potential applications for people with intellectual and developmental disabilities (IDD) is widening. In this article, we introduce a special issue on technological innovations in the education and treatment of persons with IDD.</p><h3>Method</h3><p>For this special issue, we sought empirical studies, literature reviews, and program descriptions that focused on the use of technology (e.g., artificial intelligence, virtual reality, telehealth, portable smart devices, advanced language models) to improve the quality of life of people with IDD.</p><h3>Results</h3><p>Articles accepted for this special issue included (a) intervention studies and systematic reviews focused on applications of technology to improve daily living skills, social interactions, and communication, as well as mobility and occupational skills; (b) program descriptions involving telehealth service delivery to support families and train clinicians; (c) an empirical study utilizing technology to measure biophysical variables (heart rate variability) to inform behavioral assessment; and (d) a commentary on the potential of advanced language models.</p><h3>Conclusion</h3><p>Technological advances continue to inspire research aimed at improving the quality of life of people with IDD.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"7 3","pages":"311 - 313"},"PeriodicalIF":0.0,"publicationDate":"2023-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"50496255","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Remote Intensive Intervention for Young Children on the Autism Spectrum During COVID-19: the Experience of Caregivers and Service Providers","authors":"Hilary Wood de Wilde,&nbsp;Nada Kojovic,&nbsp;Céline Robertson,&nbsp;Catherine Karr,&nbsp;Leyla Akman,&nbsp;Florence Caccia,&nbsp;Astrid Costes,&nbsp;Morgane Etienne,&nbsp;Martina Franchini,&nbsp;Edouard Gentaz,&nbsp;Marie Schaer","doi":"10.1007/s41252-023-00339-0","DOIUrl":"10.1007/s41252-023-00339-0","url":null,"abstract":"<div><h3>Objectives</h3><p>Community-based early autism intervention programs in Geneva, Switzerland, converted their in-person services to a telehealth format during the COVID-19 home confinement period. The current study was aimed at measuring the engagement and satisfaction of service providers and caregivers as they experienced telehealth services for the first time and at monitoring child progress.</p><h3>Methods</h3><p>Forty-five families from diverse backgrounds and their 45 service providers had daily videoconferencing sessions of primarily parent-mediated intervention. Satisfaction questionnaires were completed at three time points over a 2-month period. Session frequency and program participation were recorded. Caregiver and service provider’s answers were compared. Results were also analyzed by family annual income. Child progress was monitored using the Early Start Denver Model Curriculum Checklist.</p><h3>Results</h3><p>Caregivers and service providers maintained high levels of participation and satisfaction throughout the telehealth service period and appreciated how the telehealth format allowed them to meet more frequently. Lower-income families tended to be more unanimously positive about the services when compared with mid- and high-income families. We found significant group differences in service providers’ and caregivers’ perceptions of each other’s comfort level with the remote sessions. Child progress followed a pattern of continued significant improvement across most developmental domains during the telehealth service period.</p><h3>Conclusions</h3><p>These findings underscore the potential of telehealth as a promising and appreciated approach for delivering intensive early autism interventions in community settings. Further research is needed to determine optimal session frequency for remote parent-mediated intervention and to determine ways to make telehealth services more accessible for low-income families.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"8 2","pages":"338 - 354"},"PeriodicalIF":1.3,"publicationDate":"2023-07-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00339-0.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82258924","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Impact of Legislation and Conventions on Disability Employment Outcomes in Australia","authors":"Peter J. Smith","doi":"10.1007/s41252-023-00343-4","DOIUrl":"10.1007/s41252-023-00343-4","url":null,"abstract":"<div><h3>Objectives</h3><p>This paper examines the impact of legislation on the employment of people with neurodevelopmental disorders within Australia with reference to the Australian and International Conventions. It examines options for employment support that respect the human rights and dignity of persons with a disability.</p><h3>Methods</h3><p>An examination of disability employment data, legislation and policy that underpins disability employment in Australia was conducted. This was compared to outcome data from a select number of the Organization for Economic Cooperation and Development countries (OECD) to understand the current state of employment for people with a disability.</p><h3>Results</h3><p>Disability employment data highlights little long-term change in employment rates. This is despite significant legislation supporting employment and the rights of persons with a disability to engage in employment. It suggests that legislation does not support policies and practices that promote open employment opportunities and economic citizenship for persons with a disability.</p><h3>Conclusions</h3><p>Despite significant government investment to improve employment rates for persons with a disability, there is a disconnect between the legislation, policy and practice methods that supports the rights of persons with a disability to pursue employment justice. Measured against selected data from OECD countries, disability employment falls short of the expectations of people with a disability. There is a need to align disability employment policy and practice to ensure that disability employment systems focus on individual success rather than system outputs.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"8 1","pages":"35 - 41"},"PeriodicalIF":1.3,"publicationDate":"2023-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82047874","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The SOOTHE eQuilt of Mental Health and Wellbeing: Supporting Voice","authors":"Fintan K. Sheerin,&nbsp;Silvia Angel Buil,&nbsp;Jose Duran Salguero,&nbsp;Desiree Ferrer Lopez,&nbsp;Eadaoin Foden,&nbsp;Edward McCann,&nbsp;Wolter Paans,&nbsp;Gloria Mpundu,&nbsp;Carlos Peña-Salazar,&nbsp;Philip McCallion,&nbsp;Sandra M. Fleming","doi":"10.1007/s41252-023-00342-5","DOIUrl":"10.1007/s41252-023-00342-5","url":null,"abstract":"<div><h3>Objectives</h3><p>People with intellectual disabilities are more vulnerable to and experience mental health concerns at a higher incidence than their peers without intellectual disabilities. This may be directly related to the aetiology of their intellectual disability but also occur because of negative psychological and social factors that affect their lives, such as loss of self-esteem or lack of meaningful opportunities. The SOOTHE project, sought to understand the meaning that adults with intellectual disabilities attribute to mental health and wellbeing, the factors influencing good and poor mental health, and the strategies they utilised to maintain good mental health and wellbeing. Using an online anonymous survey, participants were invited to electronically submit an image that represented their perspectives on what mental health and wellbeing meant to them.</p><h3>Methods</h3><p>This study, which took place in 2020 during the first year of the Covid-19 pandemic, employed an anonymous survey approach which resulted in individual images being received from 329 people with intellectual disabilities living in Spain, the Netherlands, and Ireland. These were analysed thematically and brought together in an electronic quilt/mosaic.</p><h3>Results</h3><p>Images were classified into seven potential themes: (1) Covid-19 and mental health; (2) maintaining good mental health; (3) activities that promote good mental health; (4) nature and mental health; (5) perspectives on self; (6) the importance of relationships; and (7) home and feeling safe.</p><h3>Conclusions</h3><p>This paper explores the possible meaning of the images and seeks alignment of those meanings with the rights and freedoms enshrined in the UNCRPD. The project supports the belief that persons with intellectual disabilities have an understanding of mental health and wellbeing and are able to identify ways of maintaining positive mental health.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"8 1","pages":"180 - 191"},"PeriodicalIF":1.3,"publicationDate":"2023-07-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00342-5.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77979555","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}