Maria Vassos, Rhonda Faragher, Karen Nankervis, Radostina Breedt, Fran Boyle, Simon Smith, Jo Kelly
{"title":"The Ethical, Legal, and Social Implications of Genomics and Disability: Findings from a Scoping Review and Their Human Rights Implications","authors":"Maria Vassos, Rhonda Faragher, Karen Nankervis, Radostina Breedt, Fran Boyle, Simon Smith, Jo Kelly","doi":"10.1007/s41252-023-00362-1","DOIUrl":"10.1007/s41252-023-00362-1","url":null,"abstract":"<div><h3>Objectives</h3><p>Genomic advancements affect people with disabilities. This paper presents the findings of a scoping literature review on the ethical, legal, and social implications (ELSI) of genomic technologies for people with disability. The human rights implications of the ELSI findings are then discussed briefly with reference to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).</p><h3>Methods</h3><p>A systematic search of the ELSI literature was conducted. Via a process of abstract screening and full-text review, 288 sources of evidence were included in the review. Data extraction involved identifying the ELSI discussed in each source, which were thematically analysed to generate ELSI themes and to identify relevant linkages to the UNCRPD.</p><h3>Results</h3><p>Ten ELSI themes were identified as having relevant UNCRPD linkages including reproductive autonomy, issues related to cost and access, the downside of knowing about one’s genetic makeup, lagging legislation in light of the rapid advancement of genomic technologies, genetic discrimination, the stigmatisation and devaluation of people with disabilities, the potential resurgence of eugenics and the medical model of disability, and the involvement of people with disabilities in conversations about genomic technologies. These themes have relevant and direct linkages to several UNCRPD rights including equality, non-discrimination, diversity, accessibility, full participation, identity, and freedom of expression.</p><h3>Conclusions</h3><p>The review findings highlight that there is scope for the development of a charter on human rights specific to genomic technologies in the context of disability, which could guide ethical and socially appropriate developments in the field of genomic technologies in future.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00362-1.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135385204","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":"Current Status of Psychopharmacological, Neuromodulation, and Oxytocin Treatments for Autism: Implications for Clinical Practice","authors":"Vicki Bitsika, Christopher F. Sharpley","doi":"10.1007/s41252-023-00364-z","DOIUrl":"10.1007/s41252-023-00364-z","url":null,"abstract":"<div><h3>Objectives</h3><p>To provide an overview of the current literature regarding the neurobiological treatments of psychopharmacology, neuromodulation, oxytocin therapy, and psychological resilience, as treatments for autism-related difficulties, and to distil the research findings from those treatments for everyday clinical application.</p><h3>Methods</h3><p>Instead of producing another specific systematic summary of the efficacy of these treatments, this review took an overview of each field of research, identified its key research findings, and evaluated the treatment-ready status of each of them in terms of their evidence base. From this information, a set of recommendations were derived for their clinical applications, so as to inform practice in the field.</p><h3>Results</h3><p>These treatments represent relatively recent and neurobiologically based approaches to the challenges of autism, and are in the development stage. Each treatment is promising, and has some evidential basis for its success, but all need further research to establish their evidence-based validity for everyday clinical usage.</p><h3>Conclusions</h3><p>While most of these treatments can be applied with caution, clinicians should acknowledge their restrictive benefits and costs, that are described herein. Within those caveats, each of these treatments should be considered as an emerging therapy that clinicians should consider utilising in appropriate settings and with specific cases.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00364-z.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134885032","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}
Courtney L. Kane, Ruth M. DeBar, Tina M. Covington, Meghan A. Deshais
{"title":"Correction to: A Systematic Review of Vocational Preference Assessment Research by Individuals with Developmental Disabilities","authors":"Courtney L. Kane, Ruth M. DeBar, Tina M. Covington, Meghan A. Deshais","doi":"10.1007/s41252-023-00358-x","DOIUrl":"10.1007/s41252-023-00358-x","url":null,"abstract":"","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136154580","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}
Garrett Ellwood, Amy Voltz, Stephanie Howell, Lindsay Bly, Heather Hirst, James K. Luiselli
{"title":"Assessment of Data Recording Practices Among Direct Service Providers of Persons with Intellectual and Developmental Disabilities: Implications for Training and Supervision","authors":"Garrett Ellwood, Amy Voltz, Stephanie Howell, Lindsay Bly, Heather Hirst, James K. Luiselli","doi":"10.1007/s41252-023-00359-w","DOIUrl":"10.1007/s41252-023-00359-w","url":null,"abstract":"<div><h3>Objectives</h3><p>The study objective was to assess the attitudes and opinions of direct service providers (DSPs) about their data recording responsibilities, training, and supervision at a human services organization for children and adults with intellectual and developmental disabilities.</p><h3>Methods</h3><p>The DSPs (<i>n</i> = 42) completed a 10-item questionnaire with Likert-scale ratings and open-ended comments during in-person group meetings at program settings.</p><h3>Results</h3><p>Quantified ratings revealed that the DSPs generally understood and approved most facets of data recording but were more equivocal concerning the clarity of behavior definitions, process of data evaluation by clinicians, consistency among co-workers, and impact of competing activities. Some differences in average ratings were apparent between DSPs from child and adult programs.</p><h3>Conclusions</h3><p>Findings from the study suggested several strategies human services organizations can implement to train and supervise DSPs in data recording and the benefits of social validity assessment for addressing performance improvement among practitioners.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136307688","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":"Diagnosing Neurodevelopmental, Behavioral, and Mental Disorders Associated with Fragile X Syndrome with the ICD-11","authors":"Dejan Stevanovic","doi":"10.1007/s41252-023-00361-2","DOIUrl":"10.1007/s41252-023-00361-2","url":null,"abstract":"","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"134796367","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}
Jorge Pérez-Rey, Pablo Fanlo-Mazas, Marina Gil-Calvo
{"title":"Effects of an Exercise Program Based on Rhythmic Movements on Coordination, Motor Control, and Reading Ability in Dyslexic Children: a Case Series","authors":"Jorge Pérez-Rey, Pablo Fanlo-Mazas, Marina Gil-Calvo","doi":"10.1007/s41252-023-00357-y","DOIUrl":"10.1007/s41252-023-00357-y","url":null,"abstract":"<div><h3>Objectives</h3><p>Dyslexia is a learning disability with a prevalence of between 5 and 10% in Spain. There is a relationship between the cognitive and motor aspects, which is manifested in dyslexic children due to deficits in coordination, motor control, and balance, caused by a lack of integration of inputs from the cerebellum. Rhythmic movement therapy (RMT) seems to improve not only motor deficits in dyslexic children but also educational skills. The aim of the present study was to apply an exercise programme based on RMT and to analyse the effects on coordination, motor control, and reading ability in children diagnosed with dyslexia.</p><h3>Method</h3><p>A prospective, longitudinal, and descriptive case series (<i>n</i> = 6) intra-subject intervention study was conducted. Tests assessing motor control, balance, coordination, reading ability, and primitive asymmetric tonic neck reflex (ATNR), symmetric tonic neck reflex (STNR), and tonic labyrinthine reflex (TLR) were performed. An 11-week home exercise programme based on RMT was prescribed, and a post-intervention assessment was performed.</p><h3>Results</h3><p>Improvements in stability and reading ability were found, as well as a negativisation of several primitive reflexes. No statistically significant differences were found in motor control and coordination.</p><h3>Conclusions</h3><p>RMT-based exercise programme appears to be effective in improving balance and reading skills in dyslexic children.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136310967","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}
Cooper Woodard, Janette Baird, Kaitlyn Anderson, June Groden
{"title":"Trends and Normative Data for a Sample of Adults with Autism and Related Developmental Disabilities on the Stress Survey Schedule (SSS)","authors":"Cooper Woodard, Janette Baird, Kaitlyn Anderson, June Groden","doi":"10.1007/s41252-023-00360-3","DOIUrl":"10.1007/s41252-023-00360-3","url":null,"abstract":"<div><h3>Objectives</h3><p>The purpose of this research was to expand upon the available normative data on the Stress Survey Schedule (SSS) for a group of adults with intellectual disabilities and autism spectrum disorder (ASD). This scale was originally designed in 2001 to measure stress in persons with ASD. Normative data were previously collected for a group of children and adolescents, and a secondary aim of this study was to compare the present adult data set to the historical child/adolescent data set.</p><h3>Methods</h3><p>This was a retrospective observational study that utilized SSS collected between 2021 and 2023. Survey response data were collected on 89 adults with intellectual disability and ASD, ages 22 to 66. Normative data were generated and explored and then compared to the historic child/adolescent sample.</p><h3>Results</h3><p>The average “Ritual-related” subscale score was significantly higher and the “Pleasant Events” subscale score was significantly lower compared to all other average subscale scores in the overall adult group. There were very few differences in the average subscale, average total, or raw total scores by age group or autism diagnosis status. Survey items frequently scored as high or low stress were consistent with these results. In comparing younger and older participant data, significant differences were found in average subscale scores in a number of areas, mainly with higher scores for the adult sample.</p><h3>Conclusions</h3><p>For adults, high stress often stems from events related to ritualized behavior, and events that are pleasant are typically endorsed as low stress for both adult and child samples. Stress levels appear to peak in early adulthood and then slowly diminish. There are significant differences between the child and adult samples, but social and environmental changes since the SSS was created in 2001 suggest the need for separate and revised versions of the survey.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135151962","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}
Justine O’Neill, Anthony Mulholland, Len Robinson, Kerry Watson, Basak Batmaz, Nicole Meikle
{"title":"Equal Right to Decide","authors":"Justine O’Neill, Anthony Mulholland, Len Robinson, Kerry Watson, Basak Batmaz, Nicole Meikle","doi":"10.1007/s41252-023-00345-2","DOIUrl":"10.1007/s41252-023-00345-2","url":null,"abstract":"<div><h3>Objectives</h3><p>People with intellectual disability are not always included in research or able to access academic research articles. This study has been co-conducted with people with intellectual disability about human rights and decision-making in the Australian context. The purpose of the article is to understand the perspectives of people with intellectual disability about decision-making, specifically (1) how people feel about making decisions, (2) what happens when they make decisions, and (3) the right to support for decision-making.</p><h3>Methods</h3><p>Participants shared their lived experience of decision-making as a person with intellectual disability. Responses were acquired from participants followed by a recording process, identifying common themes, and organising ideas. A team of authors with and without intellectual disability wrote the article using easy words, short sentences, and pictures to make the information easy to understand. The Easy Read article was tested with other participants with lived experience of intellectual disability to ensure it was accessible.</p><h3>Results</h3><p>The research shares (1) what is hard about making decisions and (2) what would make life better for people with intellectual disability. People with intellectual disability talked about the burden of having to prove their disability and not getting information that is easy to understand or support for decision-making.</p><h3>Conclusions</h3><p>There is action Australia can take to respect the human rights of people with intellectual disability to be involved in decisions about their own lives, including making a law that says people with disability have the right to support for decision-making.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-09-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86015144","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}
Erin S. Leif, Pearl Subban, Umesh Sharma, Russell Fox
{"title":"“I Look at Their Rights First”: Strategies Used by Australian Behaviour Support Practitioners’ to Protect and Uphold the Rights of People with Disabilities","authors":"Erin S. Leif, Pearl Subban, Umesh Sharma, Russell Fox","doi":"10.1007/s41252-023-00355-0","DOIUrl":"10.1007/s41252-023-00355-0","url":null,"abstract":"<div><h3>Objectives</h3><p>Positive behaviour support (PBS) is a values-based framework for supporting people with disabilities who display challenging behaviour. In Australia, behaviour support practitioners are now responsible for delivering PBS services to people with disabilities in ways that protect and uphold their human rights. However, no research to date has examined the specific strategies that Australian behaviour support practitioners employ in their professional practice to protect and uphold the rights of the people they serve.</p><h3>Methods</h3><p>We used an open-ended online survey to explore strategies that 98 Australian behaviour support practitioners reported using to respect and uphold the rights of the people they support. Their responses were analysed using inductive thematic analysis.</p><h3>Results</h3><p>Six overarching themes were identified following the coding of participant responses to the open-ended questions. These included the following: using a person-centred approach, facilitating frequent two-way communication with the person and their support team, implementing a range of personalised behaviour support strategies, establishing organisational policies and procedures that protect and uphold rights, educating others about rights, and adopting a holistic approach to behaviour support that focuses on improving quality of life outcomes.</p><h3>Conclusions</h3><p>Findings underscore the importance of including people with disabilities and their families as partners across all phases of the behaviour support process to ensure positive behaviour support strategies are safe, effective, and acceptable, and the goals and outcomes are meaningful. We use the findings of this study to propose a RIGHTS-based model of PBS that might be used to guide practitioners to deliver services in ways that are consistent with the principles described in the United Nations Convention on the Rights of Persons with Disabilities.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00355-0.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75023280","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}
Noémie Treichel, Daniel Dukes, Koviljka Barisnikov, Andrea C. Samson
{"title":"Appreciation of Slapstick Humour and Expressivity in Response to Amusing Stimuli in Individuals with Williams Syndrome","authors":"Noémie Treichel, Daniel Dukes, Koviljka Barisnikov, Andrea C. Samson","doi":"10.1007/s41252-023-00356-z","DOIUrl":"10.1007/s41252-023-00356-z","url":null,"abstract":"<div><h3>Objectives</h3><p>Previous studies on the comprehension and appreciation of humour in individuals with Williams syndrome (WS) have only included complex types of humour that required complex cognitive abilities. Additionally, although individuals with WS have been described as having a bias towards positive emotions, no study has investigated their expressive responses to humour.</p><h3>Methods</h3><p>The present study examined basic humour processing skills, as well as expressive responses to simple humorous and non-humorous stimuli in individuals with WS (N = 8) compared to mental-age matched typically developing (TD) children (N = 9). Participants were shown short funny and non-funny excerpts of the movies “Ice Age” and “Madagascar” and were asked to rate their level of amusement. Their expressive responses, namely smiles and laughs, were coded and analysed.</p><h3>Results</h3><p>Individuals with WS seem to be able to discriminate between humorous and non-humorous conditions and appreciate simple humorous content as much as TD individuals. As such, they are equally able to process simple types of humour as their mental-age matched counterparts. Additionally, and in line with their positivity bias, individuals with WS expressed more frequent and more intense laughter than the control group.</p><h3>Conclusion</h3><p>Individuals with WS appreciate simple humour as much as TD individuals, and they seem to display a particularly high expressivity in response to humorous stimuli.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-08-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-023-00356-z.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77361658","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}