{"title":"Examining the Relationship Among Parental Stress, Knowledge, and Family Empowerment for Latinx Parents of Children With Intellectual and Developmental Disabilities.","authors":"Kristina Rios, Hyeri Hong","doi":"10.1080/19447515.2025.2578154","DOIUrl":"https://doi.org/10.1080/19447515.2025.2578154","url":null,"abstract":"<p><p>Latinx parents of children with intellectual and developmental disabilities (IDD) face unique challenges, including heightened stress, limited access to resources, and systemic barriers. This study explores the relationships among parental stress, knowledge of special education, and family empowerment using structural equation modeling. Data were collected from 96 Latinx parents participating in a culturally responsive advocacy training program. Results revealed that greater knowledge was associated with increased empowerment but also heightened stress, reflecting the dual-edged nature of knowledge acquisition. Empowerment, however, mitigated stress related to dysfunctional parent-child interactions and a difficult child. These findings underscore the need for culturally responsive interventions that balance knowledge building with stress management, promoting resilience and empowerment among Latinx families navigating the complexities of raising children with IDD.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"131 1","pages":"26-37"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148714526","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}
{"title":"Choices and Control in Daily Life and Services Among Adults With Autism Using Services in the United States: The Role of Race and Ethnicity.","authors":"Wei Song, Jennifer Bromberg, Jessica E Rast","doi":"10.1080/19447515.2025.2578150","DOIUrl":"10.1080/19447515.2025.2578150","url":null,"abstract":"<p><p>This study explores how adults with autism exercise choice and control. Using the 2018-2019 National Core Indicator-In-Person Survey, it compares choices in life and everyday decisions between adults with autism and those with other developmental disabilities (DD) receiving services and examines differences across race/ethnicity within adults with autism. Results showed that adults with autism had fewer life choices than adults with other DD. Hispanic adults with autism had less choice in daily schedules, free time, and spending money than non-Hispanic Whites. Non-Hispanic Black adults with autism also showed less choice in daily schedules and free time but reported having enough choices in these areas. The study highlights disparities among racial and ethnic minorities, underscoring the need for culturally sensitive and inclusive support strategies.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"131 1","pages":"38-52"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148714466","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}
Martha C Coates, Jennifer Bromberg, Jessica E Rast, Zachary R Hathaway, Amy Glasofer, Justine S Sefcik, Kathleen Fisher, Rose Ann DiMaria-Ghalili
{"title":"Examining Differences in Hospitalization Among Adults With and Without Intellectual and Developmental Disabilities.","authors":"Martha C Coates, Jennifer Bromberg, Jessica E Rast, Zachary R Hathaway, Amy Glasofer, Justine S Sefcik, Kathleen Fisher, Rose Ann DiMaria-Ghalili","doi":"10.1080/19447515.2026.2669459","DOIUrl":"10.1080/19447515.2026.2669459","url":null,"abstract":"<p><p>The primary aim of this study was to compare the common reasons for hospitalization among adults with and without intellectual and developmental disabilities (IDD) in the United States. We examined hospitalizations for adults with and without IDD using the 2017 to 2019 National Inpatient Sample. Adults with IDD were matched to a sample without IDD, stratified by age (18-49 vs. ≥50), and compared for reasons for hospital admission and outcome differences. Adults with IDD, especially those 18 to 49, were frequently hospitalized for schizophrenia, while septicemia was the primary cause for those ≥50. Epilepsy was common among individuals with IDD and associated with higher healthcare costs and utilization. Those with IDD had more chronic conditions, longer stays, and higher postdischarge care needs. Enhancing community-based services and training a healthcare workforce focused on the specific needs of individuals with IDD can help reduce these disparities.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"131 4","pages":"267-280"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148725166","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}
Briana J Taylor, Christine B Peura, Erin R Riddell, William R Strathmann, Jessie B Northrup, Carla A Mazefsky, Yasmin Andalib, Matthew Siegel
{"title":"Wearable Biosensors in Youth With Autism With High Behavioral Acuity: Supportive Practices, Acceptability, and the Importance of Nonverbal Signs of Assent to Research Participation.","authors":"Briana J Taylor, Christine B Peura, Erin R Riddell, William R Strathmann, Jessie B Northrup, Carla A Mazefsky, Yasmin Andalib, Matthew Siegel","doi":"10.1080/19447515.2025.2583714","DOIUrl":"10.1080/19447515.2025.2583714","url":null,"abstract":"<p><p>Wearable biosensors can provide insight into the internal states of individuals with autism with communication challenges; however, sensory sensitivities may make wearable biosensors uncomfortable. We describe our approach for introducing a wrist-worn biosensor (Empatica E4) to participants and using supportive techniques. Most participants (76.6%) were able to wear the biosensor for a duration of 15 minutes. The option to wear a colorful sweatband over the biosensor, verbal encouragement, and edible rewards were found to be helpful. Data collection was unsuccessful for the 23.4% of participants who did not accept wearing the device, which was more common for minimally speaking participants. Tailored approaches and attention to nonverbal signs of assent or discomfort are essential for conducting wearable biosensor research with individuals with autism.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"131 2","pages":"112-117"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13456491/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148724245","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}
{"title":"Factors Associated With Readmission and Mortality of Hospitalized Individuals With Intellectual and Developmental Disabilities in Four U.S. States.","authors":"Lynne S Moronski, Eileen T Lake, Matthew D McHugh","doi":"10.1080/19447515.2026.2669461","DOIUrl":"10.1080/19447515.2026.2669461","url":null,"abstract":"<p><p>This study examined demographics, social determinants of health, comorbidities, and outcomes (mortality and readmissions) of hospitalized patients with intellectual and developmental disabilities (IDD). The sample included 39,256 hospital admissions for adult inpatients with IDD from four states. Logistic regression analyzed factors influencing 30-day readmission and in-hospital mortality. Results showed a 17.5% 30-day readmission rate. Black race, Medicare/Medicaid insurance, and admission from another facility were associated with higher odds of readmission. Age, Medicare insurance, and admission from emergency rooms, another hospital, or facility were associated with higher odds of in-hospital mortality. The study highlights the complex interplay of factors affecting outcomes for patients with IDD, emphasizing the need for targeted interventions and improved hospital care to address health disparities in this population.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"131 4","pages":"281-293"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148724844","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}
Andrew Dakopolos, Numfon Vilay, Iris Chen, Aaron J Kaat, Emma Condy, Jeanine Coleman, Elizabeth Berry-Kravis, Craig Erickson, Audrey Thurm, David Hessl
{"title":"Clinical Relevance of NIH Toolbox Cognition Battery Developmental Change in Intellectual and Developmental Disabilities: Associations with Verbal Reasoning.","authors":"Andrew Dakopolos, Numfon Vilay, Iris Chen, Aaron J Kaat, Emma Condy, Jeanine Coleman, Elizabeth Berry-Kravis, Craig Erickson, Audrey Thurm, David Hessl","doi":"10.1080/19447515.2026.2659593","DOIUrl":"10.1080/19447515.2026.2659593","url":null,"abstract":"<p><p>The NIH Toolbox Cognition Battery (NIHTB-CB) assesses crystallized verbal skills,and shows strong psychometric properties and sensitivity to developmental change in intellectual and developmental disabilities. However, whether gains in NIHTB-CB Crystallized Cognition reflect improvements in broader verbal abilities is unclear, and this has implications for clinical interpretation of the measure in the context of treatment studies. Two-hundred sixty-three participants completed NIHTB-CB Crystalized Cognition subtests (Picture Vocabulary, Oral Reading Recognition) and Stanford-Binet 5th ed. subtests (Verbal Knowledge, Verbal Fluid Reasoning) at baseline and at two-year follow-up. Bivariate latent change score models examined whether changes in Crystalized Cognition were related to changes in broader verbal skills. Changes in Crystalized Cognition were significantly related to changes in Verbal Knowledge (β = 7.92, <i>p</i> = .009) and Verbal Fluid Reasoning (β = 4.91, <i>p</i> = .018). Higher baseline Crystalized Cognition predicted greater improvement in these verbal domains, while higher initial verbal scores also predicted more Crystalized Cognition growth. Change in the NIHTB-CB Crystalized Composite was significantly related to growth in verbal reasoning in children and young adults with IDD. This may indicate that the Crystalized Composite is a useful proxy for broader verbal skills, underscoring its clinical relevance.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":" ","pages":"315-321"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13473730/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148764297","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}
{"title":"The Role of Language and Parental Nativity in Specialty Services Use Among Latino Families with Children with Intellectual and Developmental Disabilities.","authors":"Pei-Chiang Lee, Hector Chaidez Ruacho, Sandra Vanegas, Sandy Magaña","doi":"10.1080/19447558.2026.2616204","DOIUrl":"10.1080/19447558.2026.2616204","url":null,"abstract":"<p><p>Latino children with intellectual and developmental disabilities (IDD) face disparities in accessing specialty services. Using 2020-2023 National Survey of Children's Health data (<i>N</i> = 2,497), we conducted logistic regressions to examine how parental nativity and household language affect specialty services use among Latino children with IDD. While children of immigrant parents had lower odds of service use, this association was explained by household language. Children in Spanish-speaking households were significantly less likely to receive services (OR = 0.53, CI = 0.33-0.84). The mediation analysis further highlights that language, more than nativity, drives disparities. Therefore, efforts to improve access should include Spanish-speaking providers and culturally responsive care.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"131 4","pages":"239-250"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148725899","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}
Adriana Schütz, Sílvia C M Hallberg, Thais Selau, Euclides J de Mendonça Filho, Denise R Bandeira
{"title":"New Psychometric Evidence for the Brazilian Version of the Diagnostic Adaptive Behavior Scale.","authors":"Adriana Schütz, Sílvia C M Hallberg, Thais Selau, Euclides J de Mendonça Filho, Denise R Bandeira","doi":"10.1080/19447515.2025.2583716","DOIUrl":"10.1080/19447515.2025.2583716","url":null,"abstract":"<p><p>DABS-B is the Brazilian adaptation of the Diagnostic Adaptive Behavior Scale, an instrument developed to assess adaptive behavior and assist in the diagnosis of intellectual disability. Culturally adapted and validated, it fills a crucial need in the Brazilian context, where such tools are scarce. This article presents two studies demonstrating its reliability and validity. Study One, involving 30 parent/guardian interviews scored independently by two evaluators, showed strong interrater reliability (ICC = .60 - .97), albeit with slightly lower agreement in the social domain. Study Two, comparing DABS-B with a similar measure in 47 cases, revealed robust correlations (.63-.83), affirming its validity. These findings underscore the promise of DABS-B in Brazil, addressing the current deficit of culturally adapted tools.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"131 2","pages":"148-158"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148724458","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}
Hidayat Y Ogunsola, April D Summers, Maria G Gonzalez, Angela M Thompson-Paul, Marc Schweizer, Robert M Miller, Hilary Rosselot, Sarah C Tinker
{"title":"Characterizing Populations Based on Proximity to a Fragile X Syndrome Specialty Clinic.","authors":"Hidayat Y Ogunsola, April D Summers, Maria G Gonzalez, Angela M Thompson-Paul, Marc Schweizer, Robert M Miller, Hilary Rosselot, Sarah C Tinker","doi":"10.1080/19447515.2026.2662302","DOIUrl":"10.1080/19447515.2026.2662302","url":null,"abstract":"<p><p>Fragile X syndrome (FXS) is a rare condition that can require lifelong specialized care for optimal management. We describe census-based characteristics of general U.S. populations defined by proximity to FXS specialty clinics to better understand potential barriers to access. We used Geographic Information System software to estimate drive times from U.S. census tract centroids to FXS clinics. Of the contiguous U.S. population, 36.4% lives ≤1 hour from the closest FXS clinic in the same state; 32.4% live >1 to 4 hours, 7.3% live >4 hours, and 23.8% have no FXS clinic in their state. Individuals residing >1 hr from or in a state without an FXS clinic, compared to <1 hr, were more commonly non-Hispanic White, had household income below 150% poverty level, had one or more disabilities, and lived in a household without an internet subscription. Populations living ≤1 hr from an FXS clinic more commonly spoke limited English, lived in multiunit housing, and did not have a vehicle. These results can be used to identify areas of higher need for improving access to specialty care, inform efforts to reduce disparities related to access, and facilitate more optimal healthcare for people with FXS.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":" ","pages":"337-347"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13479729/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148765369","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}
Harini Pallikarana Tirumala, Yan Li, Huda Y Zoghbi
{"title":"Deep Brain Stimulation and Repetitive Training Restore Neuronal Activity and Improve Neurological Function in Rett Syndrome Models.","authors":"Harini Pallikarana Tirumala, Yan Li, Huda Y Zoghbi","doi":"10.1080/19447515.2026.2647730","DOIUrl":"10.1080/19447515.2026.2647730","url":null,"abstract":"<p><p>Rett syndrome (RTT) is a postnatal neurological disorder caused by loss-of-function mutations in the gene that encodes methyl-CpG binding protein 2. RTT is characterized by initially normal development, followed by developmental regression at 6 to 18 months of age. Individuals with RTT subsequently develop motor deficits, impaired learning and memory, and breathing abnormalities. In this review, we summarize recent findings on how neuronal circuitry is impaired in RTT and how deep brain stimulation and presymptomatic, task-specific training significantly improve learning and memory in RTT mice. Translating these findings to clinical applications, interventional studies have shown initial evidence that structured behavioral exercises can benefit individuals with RTT. Based on the converging evidence from preclinical and clinical research, we advocate for early-stage intensive behavioral training to supplement other therapeutic approaches and enhance treatment outcomes.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"131 4","pages":"294-303"},"PeriodicalIF":2.3,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148727347","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}