Res Dev Disabil [JOURNAL]
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200 papers
Quality of life outcomes and predictors for youth with intellectual disability and rare diseases.
Morán ML, Monsalve A, Fontanil Y … +3 more , Bacherini A, Balboni G, Gómez LE
Res Dev Disabil · 2025 Sep · PMID 40540825 · Publisher ↗
The concept of quality of Life (QoL) has become particularly relevant in the field of intellectual disability (ID). However, the existing scientific literature on QoL of people with ID and rare diseases (RDs) is very lim...
The concept of quality of Life (QoL) has become particularly relevant in the field of intellectual disability (ID). However, the existing scientific literature on QoL of people with ID and rare diseases (RDs) is very limited. Therefore, this study aimed to analyze individual QoL of children and youth with RDs and to evaluate the impact of personal and contextual factors on their QoL. The sample was composed of 114 Spanish participants with ID and RDs, aged between 4 and 21 years. The KidsLife Scale was applied. This instrument includes 96 items, third-person formulated, organized across eight QOL domains: physical wellbeing, material wellbeing, emotional wellbeing, interpersonal relationships, social inclusion, rights and personal development. Descriptive statistics were calculated and correlation coefficients and multiple linear regression were computed. The most elevated scores were achieved in physical well-being and material wellbeing, whereas the lowest scores were shown in social inclusion and self-determination domains. Sex, level of support needs, percentage of disability and size of the organization were predictive factors of QoL scores. These outcomes shed light into priority areas and predictors that should be considered in the development of individualized supports, organizational approaches and policy initiatives intended to promote the QoL of children and youth with RDs and ID.
Effectiveness of mindfulness-based intervention in reducing stigma stress among parents of autistic children: A randomized controlled trial.
Chan KKS, Tsui JKC
Res Dev Disabil · 2025 Sep · PMID 40540824 · Publisher ↗
BACKGROUND: Despite the adverse psychological effects of stigma stress on parents of autistic children, no evidence-based intervention currently exists to address this issue. While targeted interventions for stigma stres...
BACKGROUND: Despite the adverse psychological effects of stigma stress on parents of autistic children, no evidence-based intervention currently exists to address this issue. While targeted interventions for stigma stress are lacking, evidence from broader literature suggests that mindfulness can be an effective skill for coping with stigma. This study developed, implemented, and evaluated a new Mindfulness-Based Stigma Stress Reduction (MBSSR) program for parents of autistic children in Hong Kong. METHODS: Participants were randomly assigned to either the MBSSR intervention group (n = 25) or a waitlist control group (n = 26). Both groups completed questionnaire measures at baseline (T1), immediately after the intervention (T2), and one month post-intervention (T3). RESULTS: Compared to the control group, the intervention group showed greater reductions in stigma stress and greater improvements in psychological well-being, positive caregiving experiences (including increased perceptions of caregiving gain and reduced perceptions of caregiving burden), mindful parenting, and decreased autistic symptoms in their children. The effect sizes of these changes ranged from modest to large, with all benefits being statistically significant at the 4-week follow-up. CONCLUSION: Our findings indicate that the MBSSR program effectively supports parents in coping with stigma and yields a wide range of benefits, simultaneously improving their mental health, caregiving perceptions, interpersonal mindfulness in parenting, and child clinical outcomes. Given these benefits, practitioners should consider integrating mindfulness training-such as the MBSSR program-into support services for families of autistic children.
Executive function in children with signs of specific learning disorders.
Ceruti C, Pecini C, Marzocchi GM
Res Dev Disabil · 2025 Sep · PMID 40527114 · Publisher ↗
This study aimed to compare the executive functions (EFs) of children with decoding, reading comprehension, spelling, and calculation deficits to those of typically developing (TD) children, to delineate specific EF prof...
This study aimed to compare the executive functions (EFs) of children with decoding, reading comprehension, spelling, and calculation deficits to those of typically developing (TD) children, to delineate specific EF profiles for each group. From an initial sample of 932 children, aged 7-13 years, 93 children with deficits in learning tasks that resemble those of Specific Learning Disorders (signs of Specific Learning Disorders, sSLD) and 28 TD children were studied. EFs were assessed through both performance-based tests and questionnaires completed by parents and teachers, on which ANOVAs, correlation analyses and factorial analyses were performed. The results revealed distinct cognitive and behavioral EF profiles for the sSLD groups. Children with decoding deficits exhibited difficulties in interference control, but faster responses in cognitive flexibility tasks, alongside broader challenges in cognitive self-regulation, organization and initiative. Those with reading comprehension deficits showed significant impairments in working memory (WM) and planning related skills, with no behavioral impact. Children with calculation deficits mainly displayed poor WM and interference control skills, with parents and teachers reporting difficulties in cognitive self-regulation and control, organization, initiative and material management. Finally, the results on the spelling deficits group did not permit to define a specific cognitive and behavioral profile. The findings contribute to define the functional variability of children with learning deficits, underscoring the importance of addressing the specific EF profile and its impact on both academic tasks and daily organization.
Exploring the impact of training on explicit and implicit attitudes toward autism spectrum disorder and physical disabilities in university students.
Yokota S, Sasaki G, Fujiwara A … +4 more , Waki T, Sueyoshi A, Kubo S, Takeda K
Res Dev Disabil · 2025 Sep · PMID 40499453 · Publisher ↗
BACKGROUND: The current study examined the impact of training on attitudes toward autism spectrum disorder (ASD) and physical disabilities from both explicit and implicit aspects. As the number of autistic students enrol...
BACKGROUND: The current study examined the impact of training on attitudes toward autism spectrum disorder (ASD) and physical disabilities from both explicit and implicit aspects. As the number of autistic students enrolling in universities increases, there is a growing focus on meaningful inclusion in educational environments. Although several intervention studies investigated changes in attitudes towards people with disabilities, including ASD and physical disabilities, few have focused on the implicit aspect of attitudes. METHODS: In this study, participants received a training course on understanding and supporting people with developmental disorders, physical disabilities, or no training in the case of the control group. They completed surveys on their knowledge and explicit and implicit attitudes at three time points (pre-, post, and one-month follow-up). RESULTS: We found significant positive changes in explicit attitudes toward disabilities that were not the target of the training course. Only participants who received training on physical disabilities changed their implicit attitude toward people with physical disabilities. These participants also knew more about physical disabilities before receiving the training course. CONCLUSION: These results indicate that while positive spill-over effects in explicit attitudes occur through providing knowledge and support skills, implicit attitudinal change can occur depending on the level of expertise about the target disabilities.
A moderated mediation model for predicting acceptance of a sibling with autism or Down Syndrome.
Alon R
Res Dev Disabil · 2025 Sep · PMID 40499452 · Publisher ↗
Within the family system, the sibling subsystem holds particular importance, especially when there is a family member with a disability. Typically-developing siblings increasingly assume caregiving responsibilities for a...
Within the family system, the sibling subsystem holds particular importance, especially when there is a family member with a disability. Typically-developing siblings increasingly assume caregiving responsibilities for a brother/sister with a disability, particularly during the life stage of emerging adulthood. A critical factor influencing sibling relations is the acceptance of the sibling with a disability. Guided by the salutogenic approach, which emphasizes factors that promote health and effective coping, this study explored a moderated mediation model to examine the relationships between sense of coherence and emotions (active negative, passive negative, and positive emotions) toward siblings with autism or Down Syndrome, and how these relate to sibling acceptance. The sample included 520 emerging adult siblings (aged 18-27) of individuals with autism or Down Syndrome, who completed four self-report questionnaires. Disability type significantly moderated the indirect effect of the mediation relationship between sense of coherence and acceptance via active negative and positive emotions, but not via passive negative emotions. Specifically, the mediation effect via active negative emotions was significantly stronger for siblings of individuals with autism compared to those with Down Syndrome (b = 0.105), and the mediation effect via positive emotions was significant for siblings of individuals with autism but not for siblings of individuals with Down Syndrome (b = 0.137). The results highlight the role of sense of coherence in fostering sibling acceptance, mediated by emotions, and emphasize the need for community-based programs that enable siblings to process their feelings toward their siblings with autism or Down Syndrome, in order to promote acceptance.
Digitalization and integrated employment for persons with intellectual disabilities.
Fajardo-Castro LV, Martínez-Tur V, Moliner C … +2 more , Lira E, Gracia E
Res Dev Disabil · 2025 Sep · PMID 40494031 · Publisher ↗
BACKGROUND: Digitalization is transforming our world cross-sectionally, affecting the work of individuals with intellectual disabilities (ID). Based on the socio-technical approach, digitalization must respect the employ...
BACKGROUND: Digitalization is transforming our world cross-sectionally, affecting the work of individuals with intellectual disabilities (ID). Based on the socio-technical approach, digitalization must respect the employability and quality of life of individuals with ID. AIMS: This research analyzed the challenges and identified the opportunities stemming from digitalization for integrated employment. METHODS AND PROCEDURES: We conducted two studies. Building on the grounded theory, we analyzed the content of semi-structured interviews (Study 1) using three information sources: experts in technology and ID, workers with ID, and team supervisors in which at least one individual with ID works. Second, we implemented a Delphi method (Study 2) with the participation of experts in technology and ID. RESULTS: The results identified three main themes: characteristics of new professional profiles, opportunities generated by digitalization, and support that can promote the autonomy of individuals with ID. CONCLUSIONS AND IMPLICATIONS: Our study emphasized the need to adapt professional profiles, develop necessary skills, and strengthen support systems. This study takes a significant step toward identifying promising practices for adapting to digitalization in integrated employment. Results also highlighted the importance of a coordinated effort involving employers, the third sector, family members, and public administration in promoting integrated employment. WHAT THIS PAPER ADDS: This article presents two research studies examining the relationship between digitalization and integrated employment for individuals with intellectual disabilities. First, we analyzed semi-structured interviews conducted with experts in digitalization and intellectual disabilities, individuals with intellectual disabilities currently employed in integrated settings, and team supervisors with at least one team member with intellectual disabilities. Second, we conducted a Delphi study involving experts in digitalization and intellectual disabilities. Overall, digitalization is perceived not as a threat but as an opportunity. Although there are potential risks of job loss, digitalization also offers opportunities to promote integrated employment. These opportunities, identified in our research, will require collaborative efforts from employers, third-sector organizations, family members, and public administration.
Quality of life trajectories in persons with intellectual and developmental disabilities undergoing community transition in Central Canada: A longitudinal repeated measures study.
Cameranesi M, Kostal K, Dufault B … +5 more , Matlabi M, Baranowski M, McCombe L, Jiang D, Shooshtari S
Res Dev Disabil · 2025 Sep · PMID 40494030 · Publisher ↗
BACKGROUND: Strong evidence suggests that, compared to congregate care, dispersed community living offers significant quality of life (QoL) benefits for individuals with intellectual and developmental disabilities. Howev...
BACKGROUND: Strong evidence suggests that, compared to congregate care, dispersed community living offers significant quality of life (QoL) benefits for individuals with intellectual and developmental disabilities. However, it is still unclear whether these improvements apply to all domains of QoL or if they remain stable long term. AIMS: This study investigated QoL trajectories across four time points over a 4-year period (2019-2022) in a cohort of Canadian adults with severe-to-profound intellectual and developmental disabilities and extensive support needs who transitioned from an institutional setting to dispersed community group homes in Central Canada. METHODS: A repeated measures quasi-experimental time-series study, without control group was used to address the stated research objective. Four waves of QoL data on 59 study participants was collected using the proxy-report standardized assessment tool San Martin Scale and analyzed at both the individual and aggregate levels using linear mixed-effects models. RESULTS: The mean QoL scores of the study cohort across eight QoL domains changed significantly across timepoints, with the highest scores at the first post-transition assessment and a general decline towards pre-transition levels by the last assessment. Global QoL followed a similar pattern. Notably, some QoL domains showed unique patterns of change. Individual QoL trajectories were highly variable, with some participants experiencing transient improvements and others maintaining sustained gains. IMPLICATIONS: Continued efforts to promote the QoL of persons with intellectual and developmental disabilities should be rooted in a transformative social justice framework emphasizing equity, inclusion, and health and well-being as universal human rights.
The influence of parent and couple characteristics on parental responsivity during parent-child interactions in families of children with fragile X syndrome.
Potter SN, Harvey D, Sterling A … +1 more , Abbeduto L
Res Dev Disabil · 2025 Sep · PMID 40480185 · Publisher ↗
BACKGROUND: Parents of children with fragile X syndrome (FXS) experience elevated levels of parenting stress due to the challenges associated with raising a child with significant disabilities. Biological mothers of chil...
BACKGROUND: Parents of children with fragile X syndrome (FXS) experience elevated levels of parenting stress due to the challenges associated with raising a child with significant disabilities. Biological mothers of children with FXS are at an increased genetic risk for experiencing mental health challenges. Parental mental health challenges and stress are often associated with reduced marital cohesion and satisfaction, which may spill over and negatively affect the parent-child relationship for both mothers and fathers. AIM: The current study examined relationships among characteristics of parents, characteristics of couples, and parent behavior (i.e., responsivity and behavior management) during mother-child and father-child dyadic interactions in 23 families of young boys with FXS. RESULTS: We found that mothers and fathers used similar rates of responsive behaviors, but that fathers used higher rates of behavior management strategies compared to mothers. Parenting stress predicted lower rates of parental responsivity and higher rates of behavior management, but these effects were only marginally significant. Couples satisfaction was not found to contribute to either parental responsivity or behavior management, despite the significant relationship between parenting stress and couples satisfaction. CONCLUSION: Overall, this study suggests that reducing parenting stress may lead to more responsive parent-child interactions, and equally so for both mothers and fathers.
Relationship between anxiety and executive functioning among youth with Down syndrome.
Snodgrass NA, Fidler DJ, Patel L … +4 more , Denne E, Smith J, Weber S, Esbensen AJ
Res Dev Disabil · 2025 Sep · PMID 40460701 · Full text
Down syndrome (DS) is commonly associated with various cognitive and behavioral challenges including difficulty with executive functioning (EF) and elevated levels of anxiety symptoms. In the general population, high lev...
Down syndrome (DS) is commonly associated with various cognitive and behavioral challenges including difficulty with executive functioning (EF) and elevated levels of anxiety symptoms. In the general population, high levels of anxiety are associated with difficulties with EF tasks like initiation and cognitive shifting, with some bidirectional findings between these two constructs. Given the high overlapping behavioral presentation of symptoms of anxiety and challenges in EF, the present study examined the relationship between anxiety symptoms and EF in a sample of 139 individuals with DS ages 6-17 years to better understand their interrelationship and directionality in this population. Participants were rated by parents at two different time points, one year apart. For the entire sample, at baseline, concurrent associations were observed between several measures of EF and measures of anxiety and internalizing symptoms. Among the sample, some participants had co-occurring anxiety diagnoses prior to testing. Our results suggest that those with co-occurring anxiety exhibited more pronounced co-occurring difficulties in several areas of EF than those without co-occurring anxiety. Longitudinally, EF-shifting and EF-working memory at baseline predicted anxiety symptoms a year later while baseline anxiety predicted subsequent challenges with EF-shifting and EF-initiation a year later. Our findings suggest that while there are concurrent relationships between several measures of EF and anxiety, the longitudinal relationship is more nuanced. Our findings highlight the need for targeted mental health interventions in those with DS, as well as awareness of the overlap of anxiety with EF.
Feasibility trial of the My Health Coach app for adults with fetal alcohol spectrum disorders.
Speybroeck EL, Petrenko C, Tapparello C … +10 more , Romanos C, Griffin K, Hargrove E, Himmelreich M, Lutke A, Lutke CJ, May M, Kautz-Turnbull C, Rockhold MN, Myers J
Res Dev Disabil · 2025 Sep · PMID 40450957 · Full text
OBJECTIVES: Fetal alcohol spectrum disorders (FASD) affect health and development across the lifespan. Adults with FASD experience significant barriers to care. Together with the International Adult Leadership Collaborat...
OBJECTIVES: Fetal alcohol spectrum disorders (FASD) affect health and development across the lifespan. Adults with FASD experience significant barriers to care. Together with the International Adult Leadership Collaborative of FASD Changemakers, an international group of self-advocates, a mobile health application was co-created to support self-management and health advocacy. This feasibility trial assesses the My Health Coach app to determine readiness for a larger randomized controlled trial (RCT). METHODS: Eligibility for this online trial included adults with FASD or known prenatal alcohol exposure who had conversational and literacy fluency in English. Adults received the app for 6 weeks on their personal smartphones (iOS or Android). Pre- and post-intervention assessments included quality of life, basic psychological needs based on self-determination theory constructs (autonomy, relatedness, competency), self-management, and app acceptability. User experience interviews were also conducted post-intervention. Usage and app crashes were monitored. Study objectives assessed feasibility of the trial (recruitment, attrition, study procedures, measure sensitivity), intervention (technical functionality, acceptability), and implementation (app usage). RESULTS: Recruitment strategies proved sufficient with 95 adults screened and 43 deemed eligible. Analyses identified variables related to attrition. Study procedures were considered acceptable. Measures showed good acceptability and psychometric properties. The My Health Coach app was functional and acceptable to participants. Several refinements to trial infrastructure and construct measurement were identified for future RCTs. CONCLUSIONS: The My Health Coach app is feasible and shows promise in supporting adults with FASD with condition management. Trial results prove sufficient to proceed with a larger RCT to test efficacy.
Brazilian version of the DABS: Adaptation process and validity evidence based on the internal structure.
Hallberg SCM, Schütz A, de Mendonça Filho EJ … +2 more , Tassé MJ, Bandeira DR
Res Dev Disabil · 2025 Aug · PMID 40435592 · Publisher ↗
The Diagnostic Adaptive Behavior Scale (DABS) is an American standardized instrument that provides reliable and valid information to determine whether an individual has significant limitations in adaptive behavior. This...
The Diagnostic Adaptive Behavior Scale (DABS) is an American standardized instrument that provides reliable and valid information to determine whether an individual has significant limitations in adaptive behavior. This study aimed to develop a transculturally adapted version of the DABS for Brazil (DABS-B) and examine the validity evidence based on the internal structure of this adaptation. The adaptation involved translation of the items, consolidation of the translation by a committee, validation of the preliminary translation by a committee, adjustments by the research group, pilot testing, post-test adjustments, and a final version test. The DABS-B was administered to 422 respondents aged between 20 and 73 years (M=40.41; SD=8.12) who provided information about the adaptive behavior of 477 Brazilians aged between 4 and 21 years (M=10.31; SD=4.35). The participants included clinical and non-clinical groups. Data analysis was conducted using Item Response Theory (IRT). Results provided strong evidence of unidimensionality within each DABS-B domain, suggesting that the construct is well-defined and consistent across both domains and age groups. Good adjustments indicated that the adaptation of the measure was well executed.
Effect of loneliness on appetite hormone dysregulation and cognitive dysfunction among adolescents with ADHD.
Chen LC, Hsu JW, Bai YM … +2 more , Tsai SJ, Chen MH
Res Dev Disabil · 2025 Aug · PMID 40435591 · Publisher ↗
BACKGROUND: The prevalence of loneliness is high among adolescents with ADHD. ADHD is associated with deficits in cognitive function and appetite hormone dysregulation. However, the complex association between ADHD, lone...
BACKGROUND: The prevalence of loneliness is high among adolescents with ADHD. ADHD is associated with deficits in cognitive function and appetite hormone dysregulation. However, the complex association between ADHD, loneliness, cognitive function and appetite hormones remains unknown. METHODS: We enrolled 51 adolescents with ADHD and 51 age- and sex-matched neurotypically developing (NTD) adolescents. We completed appetite hormone measurements (e.g., insulin, leptin, and ghrelin) and cognitive function assessments. Loneliness was classified into low (≤ 40) and moderate/high (>40) levels on the basis of total scores on the UCLA Loneliness Scale. RESULTS: Adolescents with ADHD exhibited greater appetite hormone dysregulation, especially increased leptin levels, than the NTD adolescents did, regardless of loneliness level. The adolescents in the ADHD-moderate/high loneliness group had the poorest executive function (p = .018). CONCLUSION: Our study was the first to clarify the potential role of loneliness in the cognitive dysfunction and appetite hormone dysregulation associated with ADHD. The co-condition of ADHD and loneliness was related to greater impairment in executive function. Increased levels of leptin were more specific to ADHD than loneliness. Further longitudinal follow-up studies are required to clarify the temporal associations between executive dysfunction, appetite hormone dysregulation, and loneliness among patients with ADHD. The treatment program targeted at loneliness may be developed for adolescents with ADHD, especially those who exhibited greater executive dysfunction.
Mothers and fathers' perception of social-responsive behaviors of autistic individuals.
Paolizzi E, Perzolli S, Bentenuto A
Res Dev Disabil · 2025 Aug · PMID 40412004 · Publisher ↗
BACKGROUND: The interplay between behavioral differences presented by autistic males and females, and gender norms might influence caregivers' behavior perceptions, contributing to the later identification of autistic fe...
BACKGROUND: The interplay between behavioral differences presented by autistic males and females, and gender norms might influence caregivers' behavior perceptions, contributing to the later identification of autistic females. AIM: Our study aims to investigate differences in mothers' and fathers' perceptions of children's behaviors typically associated with autism. Further, we aim to analyze parental perception of children's behaviors in relation to their offspring's sex. Second, our objective is to examine differences in the perception of behaviors of males and females to better understand females' phenotypes and potential reasons for their underdiagnosis METHODS: The sample consisted of 40 children and adolescents (M chronological age = 8.75 years, SD = 1.10, Range = 4-16.75), 20 males and 20 females, with their mothers and fathers. Parental perceptions are studied through the Social Responsiveness Scale, a quantitative report instrument that assesses autistic characteristics. RESULTS: Mothers and fathers reported similar profiles of their children. However, females presented better abilities in relation to Social Communication and fewer Mannerisms than males. However, clinicians' observations scores related to the ADOS-2 did not show evidence of differences in behavioural characteristics typically associated with autism. CONCLUSIONS: These mechanisms should be further explored as they might partly determine females' later diagnosis. Children's age plays a significant role, as older individuals present more severe behaviors associated with autism in the dimensions previously mentioned and Social Motivation. Hence, a late diagnosis can exacerbate behavioral presentation of autism.
Risk of divorce and likelihood of having additional children among families with children with spina bifida: A Swedish population-based longitudinal register study.
Mtutu RS, Alriksson-Schmidt AI, Müller V … +1 more , Jarl J
Res Dev Disabil · 2025 Aug · PMID 40412003 · Publisher ↗
BACKGROUND: To raise a child with disability might present challenges and affect the functioning of the family unit. In this study, the risk of divorce for parents of children with spina bifida and the probability of hav...
BACKGROUND: To raise a child with disability might present challenges and affect the functioning of the family unit. In this study, the risk of divorce for parents of children with spina bifida and the probability of having additional children were analysed. METHODS: Longitudinal, matched case-control, data between 2004 and 2014 from multiple linked Swedish Population Registers were analysed using Cox proportional hazard models with interval censoring. RESULTS: The results showed a reduced risk of divorce among parents of children with spina bifida compared to parents of children who did not have spina bifida. Some indications of heterogeneous effects were noted; a stronger protective association was noted among parents who are married compared to cohabiting, have higher education, and where the mother is older at the birth of the child with spina bifida (34 + years). No association was found on having additional children after the birth of a child with spina bifida. CONCLUSION: The results should be understood in the Swedish context, which is known for its comprehensive welfare system. Future research should investigate the mechanisms behind these results. WHAT THIS PAPER ADDS?: This study contributes to the field by utilizing population-based register data, which is rare for spina bifida research. Comparison to prior studies indicates that there is substantial heterogeneity across disabilities indicating that while some research can be conducted at the broad disability level, in certain contexts it might be inappropriate to study disability as a group or generalising the results from one disability to the next.
Profiling clinical heterogeneity in Autism Spectrum Disorder at time of children's diagnosis: A cluster analysis from the ELENA cohort.
Némorin H, Michelon C, Peyre H … +3 more , Monnier M, Périés M, Baghdadli A
Res Dev Disabil · 2025 Aug · PMID 40409244 · Publisher ↗
BACKGROUND: Autism Spectrum Disorder (ASD) encompass a heterogeneous group of neurodevelopmental conditions characterized by deficits in social communication and repetitive behaviors. The rising prevalence of ASD highlig...
BACKGROUND: Autism Spectrum Disorder (ASD) encompass a heterogeneous group of neurodevelopmental conditions characterized by deficits in social communication and repetitive behaviors. The rising prevalence of ASD highlights the urgent need for effective diagnostic and intervention strategies. However, the significant clinical, cognitive and etiological heterogeneity within ASD populations poses substantial challenges to these efforts. AIMS: This study aimed to identify distinct ASD subtypes at time of diagnosis within the ELENA cohort by incorporating not only DSM-5 criteria but also measures of adaptive functioning and behavioral problems. MATERIAL AND METHODS: Data from 458 children and adolescents with ASD were analyzed using hierarchical agglomerative clustering. Variables included autistic symptoms, intellectual quotient, adaptive behavior and behavioral problems. Clusters were identified based on these parameters, and post-hoc analyses were conducted to assess statistically significant differences in sex and age among the four clusters using Chi-square test and Student's t-tests. RESULTS: Four distinct clusters were identified from the analysis: (1) High Autistic Symptom Severity with Lowest Behavioral Problems, (2) High Autistic Symptom Severity with High Behavioral Problems, (3) Low Autistic Symptom Severity with Highest Behavioral Problems and (4) Low Autistic Symptom Severity with low behavioral problems, while significant age differences were observed across clusters, no significant sex differences were found. DISCUSSION: These clusters exhibited significant variability in adaptive functioning and behavioral problems, suggesting that DSM-5 criteria alone do not fully capture the complexity of ASD. The findings underscore the importance of incorporating measures of adaptive functioning and behavioral problems into ASD assessments and interventions. Future research should aim to validate these clusters in larger and more diverse populations and explore the integration of genetic and neuroimaging data to further refine the characterization of ASD subtypes. Additionally, longitudinal studies are needed to assess the stability and clinical relevance of these subtypes over time. TRIAL REGISTRATION NUMBER: NCT02625116.
Development and validation of a short form of the German Developmental Behaviour Checklist for Teachers (DBC-T).
Zurbriggen CLA, Hell FT, Steinhausen HC … +1 more , Müller CM
Res Dev Disabil · 2025 Aug · PMID 40398334 · Publisher ↗
BACKGROUND: Children and adolescents with an intellectual disability (ID) show increased rates of emotional and behavioural problems, presenting significant challenges for the afflicted individuals, their families, and t...
BACKGROUND: Children and adolescents with an intellectual disability (ID) show increased rates of emotional and behavioural problems, presenting significant challenges for the afflicted individuals, their families, and their teachers. The teacher version of the Developmental Behaviour Checklist (DBC-T) is a reliable and valid questionnaire comprising 94 items that assess emotional and behavioural problems in children and adolescents with ID. AIMS: The present study aimed to develop and validate a short form of the German DBC-T that retains the structure and the good psychometric properties of the full version, thereby allowing for the interpretation of the subscale scores. METHODS AND PROCEDURES: Data were obtained from a longitudinal study involving 397 teacher staff members who reported on 1177 children and adolescents with ID at two time points during one school year (T1, T2). The full version of the DBC-T was shortened in a two-stage process based on data from T1. The reliability of the subscales of the short form and various aspects of construct validity were evaluated using data from T1 and T2. RESULTS: A short form of 35 items was developed. The factor structure was confirmed at both T1 and T2. The five subscales demonstrated good internal consistency. The findings indicated both discriminant and convergent validity in relation to adaptive behaviour, as well as known-group validity concerning gender and age. CONCLUSIONS: The proposed short form complements the full version of the DBC-T and offers a time-efficient means of assessing multiple students simultaneously, as often required in school and research contexts. WHAT THIS PAPER ADDS?: This study develops and validates a short form of the German Developmental Behaviour Checklist (DBC-T) that assess emotional and behavioural problems in children and adolescents with intellectual disability. The proposed short form retains the subscale format of the DBC-T, allowing for interpretation of the subscale scores. The short form demonstrated good psychometric properties. As a reliable, valid and time-efficient instrument, the short version may supplement the full version.
A systematic review of studies on the association between physiological parameters and self-harm.
van Swieten M, Nijman I, de Looff P … +2 more , VanDerNagel J, Didden R
Res Dev Disabil · 2025 Jul · PMID 40359647 · Publisher ↗
BACKGROUND: Self-harm is common in people with intellectual disabilities and is associated with multiple adverse consequences for the client engaging in self-harm, other clients and caregivers. Self-harm is related to em...
BACKGROUND: Self-harm is common in people with intellectual disabilities and is associated with multiple adverse consequences for the client engaging in self-harm, other clients and caregivers. Self-harm is related to emotional dysregulation according to both observational and self-report data. Measures of the autonomic nervous system might provide additional insight in this relationship. METHODS: The current systematic review systematically summarized a broad spectrum of studies on the association between self-harm and physiological parameters. The search identified 2400 articles, 46 were included. RESULTS: In most studies, which compared electrodermal activity and heart rate in people with and without self-harm, no clear indications for a relation between physiology and self-harm was found. Studies on heart rate variability showed indications for lower heart rate variability during recovery, which could imply emotion dysregulation, findings which were supported by results from imagery studies (heart rate and skin conductance). No consistent findings were found when self-harm was studied before, during or after actual occurrences of self-harm, although this was examined by very few studies. CONCLUSIONS: Although wearable technology has improved, the majority of studies to date are lab-studies. Future research should focus on measuring physiology in daily life before, during and after self-harm, in people with intellectual disabilities, study different types and functions of self-harm separately, and test multimodal prediction models. This knowledge could improve the understanding, prevention and assessment of this debilitating behaviour.
Parents' experience with the management of sleep disorders in children with autism: A qualitative study.
Shi F, He M, Li J … +2 more , Wang X, Zhang D
Res Dev Disabil · 2025 Jul · PMID 40339398 · Publisher ↗
PURPOSE: Sleep disorders are a common co-occurring problem in children with autism, and parents are the main implementers in the process of their management. However, there is a paucity of research on parents' experience...
PURPOSE: Sleep disorders are a common co-occurring problem in children with autism, and parents are the main implementers in the process of their management. However, there is a paucity of research on parents' experiences of managing sleep disorders in children with autism, especially in Asian countries. The aim of this study is to explore the experiences of managing sleep disorders in children with autism in China from a parental perspective. MATERIALS AND METHODS: We used a descriptive qualitative research method to conduct semi-structured interviews with 14 parents of children with both autism and sleep disorders. Data were analysed according to the Colaizzi descriptive analysis framework. RESULTS: Data analysis identified three macrothemes and eight subthemes: (1) sleep management dilemmas: lack of knowledge and skills in sleep disorder management, health professionals do not pay attention to sleep problems; (2) physical and psychological burdens: physical exhaustion, guilt, anxiety, helplessness; (3) different coping styles: positive coping, negative coping. CONCLUSIONS: Parents encounter challenges in the management of sleep disorders in their children with autism and respond in different ways. Healthcare professionals should enhance their own professional training and take appropriate improvement measures in order to provide help and support to parents.
The impact of teachers' iPad use on supporting functional abilities in children with special needs.
Eden S, Shamir A
Res Dev Disabil · 2025 Jul · PMID 40328005 · Publisher ↗
The integration of technology in education has progressed significantly, with iPads becoming a popular tool, particularly in classrooms for children with special needs. This study explores the impact of teachers' pedagog...
The integration of technology in education has progressed significantly, with iPads becoming a popular tool, particularly in classrooms for children with special needs. This study explores the impact of teachers' pedagogical iPad use on the functional abilities of children with mild-to-severe special needs, focusing on language, cognition, motor, emotional development, and life skills, as well as overall functioning. The study included 1137 participants: 139 teachers (M age = 41.77, SD = 9.78) and 998 children (M age = 9.28, SD = 4.46) with mild-to-severe disabilities. Participants were divided into two groups: (1) an experimental group where teachers used iPads in class (57 teachers; 465 children), and (2) a control group without iPads use (82 teachers; 533 children). Teachers completed six questionnaires at the beginning of the school year, before the experimental group received iPads (T1), and again after an iPad training course and six months of use (T2). Results showed that functional abilities improved significantly across all areas at T2, with greater gains in the experimental group, particularly in language, cognition, emotional, life skills, and general functioning. Multilevel modeling analyses indicated that the time-by-group interactions remained robust even after controlling for teachers' and children's background characteristics. Specific background factors-teachers' years of experience, teachers' iPad use, children's gender, and disability level-also contributed to variations in children's functional levels. The study highlights digital tools' role in bridging educational gaps and fostering equal opportunities for children with special needs.
The effects of self-directed learning based on video prompting in improving 27 daily living skills for adolescents with mild intellectual disability in China.
Li H, Yao S, Luo Y … +5 more , Guo C, Bian H, Peng J, Wu Y, Chen W
Res Dev Disabil · 2025 Jul · PMID 40318560 · Publisher ↗
BACKGROUND/AIMS: Students with intellectual disability often face challenges in mastering daily living skills. Existing intervention strategies for these skills typically require support from instructors, which limits th...
BACKGROUND/AIMS: Students with intellectual disability often face challenges in mastering daily living skills. Existing intervention strategies for these skills typically require support from instructors, which limits the autonomy and independence of these students. Consequently, this study aims to develop a self-directed learning approach based on video prompting to enhance the daily living skills of students with mild intellectual disability. METHOD: The research employed a multiple probe across behaviors design to evaluate the effectiveness of this approach among three adolescents with mild intellectual disability in China, focusing on 27 daily living skills across three categories: cooking, cleaning, and household appliance usage. Additionally, six skills were randomly selected to assess the generalization effects of acquired skills to real-life scenarios. RESULTS: All three participants acquired 27 skills within 27 intervention sessions, achieving average task completion accuracy of 98 %, 94 %, and 96 % across three categories of skills. Participants also demonstrated improved self-correction accuracy during the self-directed learning process. Furthermore, they successfully generalized all selected skills to real-life family scenarios. These results support the high efficiency and effectiveness of the self-directed learning approach. CONCLUSIONS/IMPLICATIONS: These preliminary findings underscore the potential of self-directed learning in empowering individuals with mild intellectual disability toward greater independence and lifelong skill acquisition. Future research should explore the broader applicability of this learning approach.
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