Advances in Neurodevelopmental Disorders最新文献

{"title":"Equal Right to Decide: Introducing the Special Issue on Inclusive Research in Neurodevelopmental Disorders","authors":"Jeffrey Chan,&nbsp;Rhonda Faragher,&nbsp;Karen Nankervis","doi":"10.1007/s41252-026-00510-3","DOIUrl":"10.1007/s41252-026-00510-3","url":null,"abstract":"<div><h3>Objectives</h3><p>Inclusive research recognises that people with intellectual and developmental disabilities (IDD) have the right to participate in, contribute to, and access research that concerns their lives. In this article, we introduce a special issue on inclusive research and future directions for engaging people with IDD as co-researchers, authors, reviewers, and readers of research.</p><h3>Methods</h3><p>For this special issue, we sought original and conceptual papers from a range of disciplines that focused on inclusive research with people with IDD. Manuscripts addressed processes, resources, supports, and accessible formats, including Easy Read and plain English, that enable people with IDD to participate meaningfully in research and to access, receive, and share research information.</p><h3>Results</h3><p>Articles accepted for this special issue included papers focused on (a) preparing and supporting people with IDD to participate in research; (b) ethical, rights-based, and co-design considerations in inclusive research; (c) practical strategies and experiences from inclusive research teams, including the perspectives of self-advocates; (d) approaches for supporting understanding of complex research topics in health, behaviour support, quality assessment, and related areas; and (e) the use of Easy Read and plain English to make research more accessible.</p><h3>Conclusions</h3><p>Inclusive research continues to advance the rights of people with IDD to shape research priorities, participate in knowledge production, and access research findings. This special issue highlights current progress while also identifying the need for continued work to ensure that inclusive research reaches people with diverse support and communication needs.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"10 3","pages":"353 - 359"},"PeriodicalIF":2.0,"publicationDate":"2026-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148965494","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":"Learning From People With Disability in University Courses","authors":"Debbie Lobb,&nbsp;Benjamin Keely,&nbsp;Ashley Nelson,&nbsp;Eli Dickenson,&nbsp;Laura Jones","doi":"10.1007/s41252-026-00492-2","DOIUrl":"10.1007/s41252-026-00492-2","url":null,"abstract":"<div><h3>What this paper is about </h3><p>This Easy Read paper talks about two disability courses at Curtin University that were co-designed and co-developed with people with disability. The paper explains how lived experience of disability was prioritised in the design and teaching of the courses to reduce tokenism. Tokenism means including people in a small or non-meaningful way that does not give them real power or influence.</p><h3>What we did</h3><p>People with disability helped plan, write, and teach the learning content. Many lived experience educators were people with high communication and learning support needs. People with disability shared their lived experience and knowledge in authentic ways. The courses focus on what people with disability say matters to them in real life and on the practical skills they need from supporters.</p><h3>What we are doing now</h3><p>People with disability are leading a study on the impact of the courses. The study will explore the long-term effects of lived experience teaching on: Student knowledge and attitudes, and How students work in partnership with people with disability in meaningful and person-led ways. This study will help improve co-designed content creation and further identify examples of tokenism.</p><h3>Take-away messages</h3><p>Universities, and other forms of teaching, still have a long way to go to create learning and resources that are truly co-designed and led by people with disability. The authors, both with and without disability, suggest what needs to change.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"10 3","pages":"399 - 443"},"PeriodicalIF":2.0,"publicationDate":"2026-07-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-026-00492-2.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148965407","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":"Empowered Voices: A Self-Advocate’s Journey on Making an Impact on Inclusion in Singapore","authors":"Allan Cai,&nbsp;Shu Yun Li,&nbsp;Lenny Lai,&nbsp;Vimallan Manokara,&nbsp;Jeffrey Chan","doi":"10.1007/s41252-026-00504-1","DOIUrl":"10.1007/s41252-026-00504-1","url":null,"abstract":"<div><h3>Objectives</h3><p>The voices of people with intellectual disability are essential to the success of self-advocacy. When they speak up for themselves, their voices are authentic and can influence policy making, as well as promoting inclusion in society. The purpose of this paper is to provide a personal insight of a self-advocate’s impact on promoting inclusive participation in society.</p><h3>Methods</h3><p>The self-advocate uses a narrative method to share his personal insight and story. His self-advocacy journey is supported by his mother and a small team who have been supporting him over time. It is important to emphasize that the self-advocate developed the concept and initial writing of this paper. This paper also builds on previous research about “Our Lives, Our Voices” (OLOV), a self-advocacy programme in Singapore.</p><h3>Results</h3><p>The personal insight shows self-advocacy is effective in building a self-advocate’s confidence and communication skills in increasing disability awareness and promoting inclusion. When people with intellectual disability are provided the opportunity to be part of decision-making and exercise their citizenship responsibilities, their voices can positively impact on society and at an international level. This personal narrative of a self-advocate further shows the importance of inclusive research where these advocates take lead to share their stories.</p><h3>Conclusions</h3><p>Empowering people with intellectual disability to share their stories builds not only their confidence and independence, but their voices can inspire understanding and strengthen communities by reminding everyone that should be included in society. This personal narrative provides a level of authenticity in inclusive research.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"10 3","pages":"568 - 581"},"PeriodicalIF":2.0,"publicationDate":"2026-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148965371","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":"Inclusive Research in Genomics and Disability: Findings from the “We Need to Talk” Project","authors":"Rhonda Faragher,&nbsp;Maria Vassos,&nbsp;Karen Nankervis,&nbsp;Ruth Faragher","doi":"10.1007/s41252-026-00496-y","DOIUrl":"10.1007/s41252-026-00496-y","url":null,"abstract":"<div><h3>Objectives</h3><p>Advances in genomics are reshaping how disability is understood, raising complex ethical, legal, and social issues for people with disabilities. This makes it essential to understand how people with disabilities perceive genomics and how they can be included in co-design approaches to genomics research.</p><h3>Methods</h3><p>The <i>We Need to Talk</i> project explored how people with disabilities, including those with intellectual and developmental disabilities, view the impacts of genomic technologies and their role in inclusive genomics research. This paper outlines how we involved people with intellectual disabilities in the project and what they shared with us. We used a co-design approach for the <i>We Need to Talk</i> project where people with different types of disabilities were included in the governance of the project as well as the design and implementation of the research. Surveys were developed in different formats to make them accessible (online with text reading and voice recording, plain-language videos, interviews with easy read information). Two face-to-face national roundtables were held as well.</p><h3>Results</h3><p>Key considerations for genomics researchers were identified by people with intellectual disability. These included the value they bring to genomics research, their desire to be active participants rather than merely research subjects, and the supports they need to engage in inclusive genomics research.</p><h3>Conclusions</h3><p>These findings are important to guide future inclusive research, policy, and implementation of genomics.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"10 3","pages":"502 - 521"},"PeriodicalIF":2.0,"publicationDate":"2026-05-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-026-00496-y.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148965304","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 Australian Psychotropic Medicines Training Program for Disability Support Workers: A Study Protocol in Easy Read","authors":"Michelle Bellon,&nbsp;Tim Cahalan,&nbsp;Shoumitro Deb,&nbsp;Kathryn Speer,&nbsp;Mary Bushell,&nbsp;Bharati Limbu,&nbsp;Andrea Simpson,&nbsp;Rebecca Koncz,&nbsp;Macey Barratt","doi":"10.1007/s41252-026-00483-3","DOIUrl":"10.1007/s41252-026-00483-3","url":null,"abstract":"<div><h3>Objectives</h3><p>This study aims to develop and evaluate an Australian training program for disability support workers about psychotropic medicines, with a focus on supporting people with intellectual disability in safe and person-centred ways.</p><h3>Methods</h3><p>A co-design approach will be utilised, underscored by a participatory action framework. The training program developed will follow Universal Design for Learning and person-centred focuses. Co-design will include people with intellectual disabilities, family members, members of the disability workforce, healthcare professionals, and educational designers.</p><h3>Conclusions</h3><p>The development of the training program will include a learning needs analysis, rapid review, the development of a consumer advisory committee, expert panel group, focus groups, co-design events, pilot testing, feasibility testing, implementation of the training program, and evaluation of the training program. This training program will aim to improve the knowledge and confidence of psychotropic medicines for disability support workers, provide education on supportive decision-making, and reduce inappropriate use of psychotropic medicines.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"10 3","pages":"522 - 548"},"PeriodicalIF":2.0,"publicationDate":"2026-05-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-026-00483-3.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148965240","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":"Embedding Assent and Compassion: Reframing Positive Behaviour Support Through an Autistic Practitioner’s Lived Experience","authors":"Lauren Jakeway,&nbsp;Jeffrey Chan","doi":"10.1007/s41252-026-00494-0","DOIUrl":"10.1007/s41252-026-00494-0","url":null,"abstract":"<div><h3>Objectives</h3><p>This paper explores how Positive Behaviour Support (PBS) can be reframed through the lens of an autistic practitioner’s lived experience. It focuses on embedding the values of assent and compassion into PBS practice and how these values align with the human rights of people with neurodevelopmental disabilities.</p><h3>Methods</h3><p>Using a narrative methodology, the author draws on personal lived experience as both an autistic individual and a PBS practitioner. The paper also engages with inclusive research and co-design literature to examine how lived experience can inform ethical and effective support practices.</p><h3>Results</h3><p>The paper identifies three key messages:</p><p>Assent must be actively sought and respected as a fundamental human right.</p><p>Compassion is a measurable and teachable skill that is essential for ethical behaviour support.</p><p>Lived experience must guide the development of support systems, research, and policy. These findings challenge traditional models that exclude the voices of those most affected and highlight the importance of relational and rights-based approaches.</p><h3>Conclusions</h3><p>Reframing PBS through a human rights lens requires the practical integration of assent and compassion into everyday practice. Grounded in autistic lived experience, this paper positions these values not as abstract ideals but as essential principles for inclusive and ethical support. This approach contributes to advancing more equitable disability policy, legislation, and research aligned with the UN Convention on the Rights of Persons with Disabilities (CRPD).</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"10 3","pages":"582 - 605"},"PeriodicalIF":2.0,"publicationDate":"2026-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148965291","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":"VALID8—Enhancing and Assuring Service User Empowerment Practices Within Not-for-Profit Disability Residential Services by Placing People with Disability at the Centre as Paid Evaluators, Leaders and Change-Makers","authors":"Sara De Grandis,&nbsp;David West,&nbsp;Hala Baksmaty,&nbsp;Omar Muhammad,&nbsp;Raven Moore,&nbsp;Celeste Rattray-Wood,&nbsp;Gregory Tucker,&nbsp;Anthony Risoli,&nbsp;Sandra Murphy","doi":"10.1007/s41252-026-00489-x","DOIUrl":"10.1007/s41252-026-00489-x","url":null,"abstract":"<div><h3>Objectives</h3><p>This paper outlines VALID’s experience employing people with intellectual disability in open, Award wage roles to review the quality of disability group homes. It focuses on how workers felt about being employed in these roles, and what this meant for their self-advocacy, confidence, rights, safety and inclusion.</p><h3>Method</h3><p>VALID created the VALID8 project, employing more than 30 people with intellectual or dual disability as Program Officers. The team codesigned Easy Read interview questions based on the Victorian Disability Service Standards and developed a Companion App using pictures, touchscreen and talk-to-text to support accessible interviews. From 2019 until the project’s end, staff received tailored training and visited 170 group homes across Victoria, interviewing 483 residents and preparing reports for houses, service providers and government.</p><h3>Results</h3><p>VALID8 demonstrated that people with intellectual disability can thrive in paid quality review roles when supported with accessible tools, training and peer mentoring. Workers consistently reported feeling proud, respected and valued in their jobs. Many said the role gave them a stronger voice, greater confidence and a sense of purpose. Services received practical, rights-focused recommendations, and repeat visits showed clear improvements in many homes. Employment in VALID8 strengthened workers’ skills and networks, with several progressing to other paid or volunteer roles in advocacy, government and community organisations.</p><h3>Conclusion</h3><p>Peer-led quality review is both achievable and empowering. The VALID8 model, now continuing through Activ8, offers a practical way to embed rights, voice and open employment in disability services.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"10 3","pages":"473 - 490"},"PeriodicalIF":2.0,"publicationDate":"2026-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148965373","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":"Planning for the Transition to Adulthood: Parent Perspectives on the Planning Process and Experiences of Young Adults with Fragile X Syndrome.","authors":"Leonard Abbeduto, Jessica Klusek, Julie Lounds Taylor, Angela John Thurman","doi":"10.1007/s41252-026-00488-y","DOIUrl":"10.1007/s41252-026-00488-y","url":null,"abstract":"<p><strong>Objectives: </strong>Relatively few young adults with fragile X syndrome (FXS) meet the normative expectations of adulthood, although there is heterogeneity in this regard. The present study examined the preparation for the transition to adulthood experienced by young adults with FXS and their parents.</p><p><strong>Methods: </strong>Thirty-nine young adults with FXS and their primary caregiving parents participated. Those with FXS were in their last year of, or had recently left, high school or a formal transition program. Parents completed surveys about the formal transition planning process. We examined the role of the young adults' adaptive behavior skills in transition planning.</p><p><strong>Results: </strong>Among other things, parents of young adults with more advanced adaptive skills had higher expectations regarding the latter's employment capabilities, although employment preparation did not differ for the two subgroups of young adults. Parents were generally satisfied with their own involvement in transition planning, except as regards employment where they wanted more input. The social networks of participants with FXS, especially those with less developed adaptive skills, were limited.</p><p><strong>Conclusions: </strong>Transition planning for individuals with FXS should be designed with greater attention to matching employment and social experiences to the young adult's ability and to soliciting parental input about employment.</p>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":" ","pages":""},"PeriodicalIF":2.0,"publicationDate":"2026-04-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13108680/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147783758","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":"Becoming Co-researchers: People with Intellectual Disability Learning about Research","authors":"Caroline Hart,&nbsp;Stella Koritsas,&nbsp;Annie Loughens,&nbsp;Nell Buchanan,&nbsp;Mimari Hartono","doi":"10.1007/s41252-026-00481-5","DOIUrl":"10.1007/s41252-026-00481-5","url":null,"abstract":"<div><h3>Objectives</h3><p>Many researchers think co-research, where people with and without intellectual disability work together, should happen more often and can be done better. One way of making co-research better is to give people with intellectual disability more chances to learn skills and take part in research. This article talks about a research course for people with intellectual disability. It looks at if the course had an impact and helped people learn about research. It also includes the thoughts of some participants who did the course and are now employed as Research Assistants.</p><h3>Method</h3><p>People who did the research course took part in interviews that asked them if there were any benefits to the course, what worked well and what was hard.</p><h3>Results</h3><p>Five of the eight people who did the course took part in interviews. The results showed that the course had a positive impact. The main benefits were learning new skills, feeling more confident, making friends and having purpose. Some suggested improvements were to have more breaks and use more accessible written information.</p><h3>Conclusions</h3><p>Learning about research can help people with intellectual disability meaningfully take part in co-research. When they get the chance to learn, build skills and take on research roles, they are supported and empowered to take part equally with others. This can help people with intellectual disability realise their rights. It can also help create knowledge that matters to them.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"10 3","pages":"360 - 373"},"PeriodicalIF":2.0,"publicationDate":"2026-04-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://link.springer.com/content/pdf/10.1007/s41252-026-00481-5.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148965285","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":"What Supports People with Disabilities Want and Need: Learning from an Inclusive Research World Café","authors":"Lindsay F. Rentschler,&nbsp;Stone Addams,&nbsp;Geonhwa Kim,&nbsp;Austin Myers,&nbsp;Askia Adams,&nbsp;Rebecca J. Townsend,&nbsp;Bailey Allred,&nbsp;Ryan Henley,&nbsp;Ashley V. Taconet,&nbsp;Roxanne Loyless,&nbsp;Lauren Bruno,&nbsp;Karrie A. Shogren","doi":"10.1007/s41252-026-00482-4","DOIUrl":"10.1007/s41252-026-00482-4","url":null,"abstract":"<div><h3>Background</h3><p>People with intellectual and developmental disabilities have the right to plan, conduct, and share research. Full inclusion in the research process is important because research can influence policies, practices, and everyday experiences that affect the lives of people with disabilities. However, people with intellectual and developmental disabilities have limited opportunities to learn research skills or participate meaningfully in research.</p><h3>Objectives</h3><p>The purpose of this study was to examine how inclusive research approaches can support people with intellectual and developmental disabilities to develop research skills, host a World Café, and identify supports needed for success in college, employment, and community settings.</p><h3>Method</h3><p>Twelve Emerging Researchers with intellectual and developmental disabilities participated in a learning series focused on building research skills. The Emerging Researchers worked collaboratively with a research team that included members with and without disabilities. To apply their skills, the Emerging Researchers designed and conducted a World Café study. Data were collected using a survey and online group discussions with 17 participants with disabilities who took part in the World Café.</p><h3>Results</h3><p>Findings indicated that supports should be individualized and responsive to each person’s unique needs. Participants emphasized the importance of having supportive people across all areas of life, including education, work, and community settings. Many participants also reported challenges accessing all of the supports they needed, highlighting gaps and barriers within existing systems.</p><h3>Conclusion</h3><p>This study demonstrates that inclusive research approaches can successfully engage people with intellectual and developmental disabilities as researchers and generate meaningful insights about support needs. Inclusive research can help identify barriers faced by people with disabilities and serves as a critical step toward addressing and reducing those barriers.</p></div>","PeriodicalId":36163,"journal":{"name":"Advances in Neurodevelopmental Disorders","volume":"10 3","pages":"444 - 472"},"PeriodicalIF":2.0,"publicationDate":"2026-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148965537","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}