As disability services in the United States continue to shift toward community-based care, integrating formal and natural supports has become increasingly important for individuals with intellectual and developmental disabilities (IDD) and their families. However, limited research has examined how organizations facilitate this integration. This study explores how Community Choices, a cooperative human services organization in Illinois, enables integrated supports for adults with IDD. Data were collected from semi-structured interviews with eight family caregivers, seven persons with IDD, and nine staff members, as well as organizational and public documents. Data were analyzed using reflexive thematic analysis. Findings were organized into four themes: (1) “with you, not for you,” a philosophy that positions formal supports as a bridge to independence and community connection; (2) flexibility and risk-taking, enabled by small organizational size, leadership promoting collaboration, and flexible funding; (3) the value of the cooperative model, which fosters shared ownership and peer support; and (4) areas for improvement, including future planning, growth tensions, self-advocate leadership, and equitable representation. This study has implications for designing disability services that integrate formal and natural supports. It demonstrates the value of cooperative, person-centered models and identifies growth tensions and gaps in future planning and in supporting individuals with intensive support needs.
Extinction may be difficult to implement when targeting automatically maintained behavior because the putative maintaining reinforcer cannot be directly observed. The exact behavioral mechanism of procedures used to decrease automatically maintained behavior (e.g., sensory attenuation, response blocking, and response interruption and redirection) remains unclear. Comparing response patterns under these three putative extinction contingencies could help clarify the underlying mechanisms of these procedures. In a retrospective chart review of 28 cases, we evaluated response patterns of automatically maintained behavior during these procedures with the aims of: (a) identifying the prevalence of response bursting, and (b) comparing response patterns across different procedures, topographies of behavior, and subtypes of automatically maintained behavior. Response bursts occurred in 3.8
All individuals need supports throughout their lives. Individuals with intellectual and/or developmental disabilities (IDD) may rely on integrated supports – a combination of formal (i.e., paid supports provided by service providers) and natural supports (i.e., unpaid supports provided by people within the person’s social network). Although adults with IDD should be empowered to choose their own supports, little research has explored their perspectives about integrated supports. The purpose of this study was to explore how adults with IDD perceive integrated supports. Specifically, we conducted individual interviews with 46 adults with IDD about their experiences with integrated supports. While some participants provided definitions of formal and natural supports that aligned with definitions used in the extant literature, approximately half of the participants were unfamiliar with these supports. Although most participants were somewhat satisfied with their supports, nearly all participants requested more integrated supports. Implications for research, practice, and policy are discussed.
Health-related fitness (HRF) and motor competence are positive predictors of physical activity (PA) in children. In Ireland, children who are blind/vision impaired (BVI) may be less active than the general population (Flynn et al., 2024), but no data exists on HRF and motor competence amongst BVI children in Ireland. Health-related fitness (cardiorespiratory endurance and muscular strength) and motor competence were assessed in 59 children (age range 9–17 years, median age: 13 years, mean age: 12.34 ± 2.40 years, 40
Handwriting is a foundational literacy skill that supports early reading and writing development. Students require explicit and systematic instruction in handwriting, especially students identified with intellectual and developmental disabilities (IDD). The present study examined the effectiveness of a structured handwriting instructional tool called the Literacy Letter Identification and Formation for Transcription and Early Reading (LIFTER). Using a repeated acquisition design (RAD), three elementary-aged students identified with IDD received instruction across multiple sets of lowercase letter formations. Handwriting performance was assessed during baseline and intervention phases, and a pre- and post- full alphabet assessment. Visual analysis and nonoverlap indices indicated improvements in handwriting performance for two participants with evidence of maintenance in the full alphabet assessments. Results suggest that the Literacy LIFTER may support early handwriting development for some students identified with IDD. Findings highlight the need for continued research examining instructional intensity to better support students with greater handwriting support needs.
Measuring individualised, clinically meaningful developmental outcomes in autistic children remains challenging. The Parent Target Problems (PTP; Arnold et al. 2003) provides a brief, idiographic framework based on parent‑nominated concerns, but its original use is restricted to challenging behaviour and hyperactivity. We adapted the PTP by expanding its scope to encompass a wider range of developmental domains and by introducing a standardized baseline severity rating. We evaluated the feasibility, inter‑rater reliability, and concurrent validity of this revised protocol within a pilot trial of the WHO Caregiver Skills Training (CST). The adapted PTP was applied to a sample of 30 caregivers of autistic children (aged 3 to 8 years) participating in a pilot trial of CST delivered remotely in public clinical centres in Northern Italy. Narratives of parent-nominated problems, elicited without setting restrictions on problem domain, were collected at baseline, 3-month treatment endpoint and 6-months follow-up (n=168). Narratives were rated with good to excellent agreement by four expert judges for vignette quality, baseline problem severity (ICC range: 0.75–0.90) and improvement at endpoint and follow-up (ICC = 0.93). The PTP interviews were feasibly administered as per protocol within 10 minutes. PTP endpoint and follow-up improvement scores were strongly correlated with each other and not associated with baseline problem severity. Improvement scores correlated in the expected direction with caregiver adherence measures and caregiver competency. Findings indicate that PTP narratives may offer a systematic, reliable, and valid way to track meaningful, individualised outcomes in children with developmental disabilities in clinical trials and clinical practice.
Children with autism experience a higher risk of suicidal and homicidal ideation compared to their peers, but accurate assessment relies on the child’s ability to verbalize their thoughts and respond to questions. Research indicates that clinician assessments may miss suicidal ideation, compared to self-report, even in verbal children assessed by trained professionals. This gap is likely even greater for minimally verbal children in intervention settings where providers lack risk assessment training. As a result, a program to refer, assess, and make recommendations for children with autism enrolled in an ABA intervention was created and evaluated. The Crisis Response program was established at a multi-center therapy organization. Training on identifying and responding to suicidal and homicidal ideation was offered to all providers. A baseline and post-training survey was conducted. Referrals and the resulting recommendations were reviewed. Thirty-eight referrals were submitted to the Crisis Response team through August, 2025. Referrals were assessed by a psychologist using all available records and discussion of referring incident. Risk was categorized using the Columbia Suicide Severity Rating Scale. Qualitative review of referring incidents indicated unique themes such as atypical violent play, unprompted aggression, limited verbal response, and imitated behavior. Post-training survey indicated increased confidence in identifying and appropriately responding to suicidal and homicidal ideation. The Crisis Response team successfully identified children who needed or would benefit from additional psychological support. However, existing assessments and models do not account for the unique assessment components that are present within this population, which limits early identification and intervention. The Development of a Crisis Response Program for Suicidal and Homicidal Ideation in Children with Autism.
Heart rate variability (HRV) is a non-invasive indicator of autonomic nervous system function and generally improves with regular physical activity. Individuals with cerebral palsy (CP) often present impaired cardiac autonomic regulation; however, differences in HRV across physical activity levels in this population remain unclear. This study compared physical performance and HRV across different levels of physical activity in youth with CP. Eighteen participants (15 males and 3 females; 15.72 ± 0.96 years), all classified as level I according to the Gross Motor Function Classification System (GMFCS), were grouped into low, moderate, and high self-reported physical activity levels using the Physical Activity Questionnaire for Adolescents (PAQ-A). Physical performance was assessed through the shuttle run test and the muscle power sprint test, while HRV was measured at rest using heart rate monitors. Exploratory between-group differences were observed between the low- and high-self-reported physical activity groups in cardiorespiratory endurance (p = 0.009) and sprint performance (p = 0.045). The high PAQ-A-based self-reported physical activity group also presented a lower low-to high-frequency (LF/HF) ratio compared with the low activity group (p = 0.049), whereas no differences were found for SDNN (p = 0.767). Higher PAQ-A scores showed non-significant trends toward associations with lower BMI, greater shuttle run distance, and faster sprint times, while higher standard deviation of normal R-R intervals (SDNN) values tended to be associated with lower BMI. These findings should be interpreted cautiously given that none of the correlations remained statistically significant after correction for multiple comparisons, as well as the exploratory nature of the analyses and the small sample size. Overall, higher self-reported physical activity levels were associated with better physical performance and a potentially more favorable autonomic profile in youth with CP. Given the cross-sectional and preliminary nature of the study, future research using larger samples, objective activity measures, and longitudinal designs is warranted.
To access services for their children with autism, families often need to advocate across multiple service delivery systems. Advocacy is the process through which families communicate with practitioners to ensure that their children receive appropriate services. Without family advocacy, children may struggle to access services, receive fewer supports than they are eligible for, or have limited access to opportunities critical to their development. To advocate effectively, families must have knowledge of autism services. Yet, researchers often struggle to define and measure service knowledge; thus, the purpose of this study was to create a measure of knowledge of autism services. Specifically, we developed and tested the Knowledge of Autism Services measure with 65 English- and Spanish-speaking families of young children (aged 3–5) with autism. The scale demonstrated acceptable reliability (Cronbach’s 𝛼 = 0.67). Further analyses revealed that the Knowledge of Autism Services measure reflected four subscales: autism knowledge; applying for and receiving services; health; and understanding services. Implications for research and practice are discussed.
Some family members of autistic children exhibit subclinical levels of social impairments and stereotyped behaviors without meeting the diagnostic criteria for ASD-a presentation known as the broader autism phenotype (BAP). From a family systems perspective, this article systematically reviews the genetic basis, behavioral features of BAP, and its reciprocal influences within the family. Findings indicate that BAP is closely associated with ASD-related genetic variants and demonstrates complex transmission patterns within families. In marital relationships, BAP traits may affect the quality of couple interactions, and assortative mating may contribute to the formation of “dual-BAP families”. In parent-child interactions, parental BAP characteristics influence offspring development through parenting styles and interaction patterns, while child characteristics also reciprocally shape parental mental health. Among siblings, BAP may affect the social functioning and interaction quality of typically developing brothers and sisters. Current research relies largely on cross-sectional data and Western samples. Future studies should adopt longitudinal and cross-cultural designs and promote the establishment of family-centered support systems to enhance the overall adaptability of families affected by ASD. The Broader Autism Phenotype (BAP) shows high familial aggregation and a clear genetic link to ASD-related variants. BAP exhibits sex-specific transmission, where paternal traits more strongly predict child ASD symptoms, while maternal traits are linked to subclinical difficulties in siblings. Assortative mating among individuals with BAP traits can form “dual-BAP families”, which face both relational stability and an increased risk of marital strain and divorce. Parental BAP traits bidirectionally affect parent-child interaction quality, child development, and can introduce bias into intervention assessments. Typically developing siblings in ASD families may exhibit BAP-related social challenges, and the quality of their sibling relationship significantly impacts their psychosocial adjustment.
Emerging research indicates that autistic individuals experience discrimination as a neurominority. Among the general population, meta-analyses have demonstrated associations between discrimination and depression and anxiety. As no previous research has examined the relations among discrimination and anxiety/depression in autistic individuals, this study aimed to investigate the association between discrimination and depression, and discrimination and anxiety, in autistic youth. Data were obtained from 2021 to 2022 National Survey of Children’s Health (NSCH), which is a nationally distributed caregiver-report survey. Participants included 2,246 autistic youth 6–17 years old. Caregivers were asked child and household demographic information, and whether the child had a diagnosis (e.g., autism, anxiety, and depression). Caregivers were additionally asked if the child had been treated unfairly due to: (1) race/ethnicity, (2) sexual orientation/gender identity, and (3) health condition/disability. Two binary logistic regressions were conducted with depression and anxiety as the respective dependent variables. Independent variables of interest were types of discrimination. Findings revealed that race/ethnicity discrimination, sexual orientation/gender identity discrimination, and health condition/disability discrimination were associated with increased likelihood of anxiety and depression. Autistic youth experience significant stressors, such as discrimination, due to negative societal attitudes/beliefs about their intersectional minoritized/marginalized identities, which may contribute to increased risk for anxiety and depression.
Strong partnerships between families and professionals are crucial for the long-term success of students with and without disabilities. Unfortunately, professionals report limited training about ways to partner with families. This pilot study aimed to evaluate the acceptability of REACH (Respect, Equity, Advocacy, Commitment, and Honest Communication), a professional development series for education professionals to acquire knowledge and skills in facilitating and maintaining partnerships with families. A total of 18 participants completed REACH. Data were collected through a demographic questionnaire and formative and summative evaluations. Overall, participants reported that REACH was beneficial for forming partnerships with families. Implications for research and practice are discussed.
Information and communication technology (ICT) is increasingly integrated into autism spectrum disorder (ASD) interventions to improve accessibility and personalized service delivery. However, the fast-growing literature remains conceptually fragmented, underscoring the need for a systematic mapping of research trends. This study examined the global research landscape, technological evolution, and thematic domains of ICT-based ASD interventions using bibliometric methods. A bibliometric analysis of peer-reviewed English-language journal articles was conducted using the Web of Science (WoS) Core Collection (1971-January 2026). To ensure high thematic precision, the search strategy was restricted to the title field. Performance analysis and science mapping, including bibliographic coupling and keyword co-occurrence networks, were conducted using Harzing’s Publish or Perish and VOSviewer. A total of 398 publications from 57 countries published between 1971 and January 2026 were identified, with research output increasing markedly after 2015 and peaking in 2024. Publications were heavily concentrated in high-income regions, particularly the United States (45.98
Navigating adult disability services can be challenging for families of autistic youth. Barriers to service access are compounded among Spanish-speaking families of autistic youth, as many resources, applications, and information are unavailable in Spanish. Family-centered advocacy programs, including Advocacy for Supports to Improve Service Transitions (ASSIST) and Apoyando a nuestros hijo/a con la Transición de la secundaria a la vida adulta (ASISTIR), were created to help families gain knowledge and skills to access adult disability services. Yet, it is unclear whether such programs should offer differentiated content tailored to the unique barriers faced by English- and Spanish-speaking families. To that end, the purpose of this study was to compare the frequency and types of questions participants asked during ASSIST (offered only in English) and ASISTIR (offered only in Spanish). Accordingly, we analyzed the recordings from two ASSIST cohorts and two ASISTIR cohorts (collectively, 32 sessions, reflecting 64 h of recordings). Overall, there were no significant differences in the overall number of questions asked during the programs. However, ASISTIR participants asked more questions about models of decision-making, whereas ASSIST participants asked more questions about employment. While ASSIST and ASISTIR participants often asked questions related to eligibility for different types of services, ASISTIR participants asked more questions related to family involvement, and ASSIST participants asked more specific questions about financial planning. Implications for research and practice are discussed.
The purpose of this study was to investigate the effectiveness of a video modeling–based intervention package for teaching physically active cooperative playground games to preschool children diagnosed with autism spectrum disorder (ASD). Specifically, this study examined whether the intervention package improved the game performance of three preschool-aged children with ASD. A multiple probe design across participants was employed to assess the effects of the intervention on two traditional playground singing games (i.e., Kutu Kutu Pense and Benim Bir Atım Var). Participants were three preschool children with ASD (two boys and one girl), aged 4–5 years, recruited from an inclusive preschool. The dependent variable was the number of correct task-analysis steps performed during game play while the song/chanted rhyme was ongoing. The independent variable was a teacher-created video modeling–based intervention package that featured age-matched peer models and included visual supports, prompting, and reinforcement. Results indicated that all three children increased the number of correct steps for each game after the intervention package was introduced. Furthermore, during the maintenance phase, each child maintained performance, and generalization probes suggested transfer of the learned routines to different settings and peers. Social validity data from children, parents, and teachers indicated positive ratings of the goals, procedures, and outcomes of the intervention.
Imitation deficits in young autistic children are well-documented. Strengthening generalized imitation in this population is a primary goal of early intervention. In this study, an intervention designed to rapidly strengthen generalized imitation was evaluated with two young autistic children. The intervention entailed simultaneously teaching three different model types (object, gross motor, and vocal imitation) using evidence-based instructional procedures with frequent tests for generalized imitation via novel probes. Outcomes from this preliminary evaluation suggest the intervention may be capable of rapidly strengthening this repertoire in some autistic children.
Kleefstra Syndrome (KS) is a neurodevelopmental disorder with multisystem involvement, characterized by developmental delay, intellectual disability, hypotonia, and limited or absent speech. Additional psychiatric comorbidities, including aggression and self-injurious behavior (SIB), have been reported in a subset of patients. This individual, a 19-year-old female with KS, demonstrated severe aggression and SIB that were poorly responsive to usual behavioral medications, including atypical antipsychotics. Over an eight-year period, she required two urgent care visits, five emergency room visits, and two neurobehavioral inpatient unit (NBIU) admissions for acute psychiatric stabilization. Behavioral escalations complicated routine daily care. Coincident gastrointestinal (GI) symptoms—including constipation, hematemesis, and decreased appetite—were noted intermittently but not initially pursued. However, after several episodes of hematemesis during an NBIU admission prompted further investigation, she was found to have reflux esophagitis, rectal inflammation, and megacolon. Following treatment of these conditions, the individual demonstrated a marked reduction in aggression, improved social engagement, and no further utilization of the ER or NBIU. Daily behavioral medication dosing has since been tapered, with ongoing plans to transition to as needed use. This patient’s trajectory highlights the importance of evaluating somatic contributors to behavioral escalation in complex patients with significant language impairment.
Monitoring behaviors associated with happiness (e.g., smiling, laughing) and unhappiness (e.g., crying, frowning) supports evaluation of an intervention’s social validity and sustainability. This is especially important for children with communication challenges, such as those with autism spectrum disorder (ASD). However, behavioral indicators of emotional states are often subtle, idiosyncratic, and subjective, which complicates data collection and analysis. Technological innovations in machine learning, particularly neural network models, may improve efficiency and accuracy when measuring indices of happiness and unhappiness. This pilot study evaluated the feasibility of using convolutional neural networks (CNNs) and a combined CNN with a dense neural network (CNN + DNN) to detect emotional expressions in young children with ASD. Labeled video recordings from clinical settings were used as ground truth data to train and test the models in a naturalistic context. The CNN + DNN model achieved over 93
While Parent Training and Information Centers (PTIs) serve millions of families of children with disabilities annually, there are few partnerships between PTIs and researchers. Research-practice partnerships (RPPs) reflect mutual relationships and collaborative approaches to address problems of practice. RPPs can help ensure that interventions are sustained in the real world. By understanding RPPs among researchers and PTIs, interventions may be more responsive to families of children disabilities and likely to be sustained in the community. In this study, we partnered with six PTIs to conduct a civic engagement program (CEP). The partnership included preparatory meetings and two six-hr CEPs for families of children with disabilities with each PTI. Data included meeting transcripts and a social validity interview with multiple staff members from each PTI. To facilitate a strong partnership with the PTI, the researchers acknowledged and leveraged the expertise and experience of the PTIs. Barriers to the partnerships included challenges with aspects of the research process. When considering partnering with PTIs, researchers may consider ways to ensure the research is family-friendly. Implications for research and practice are discussed.
This cross-sectional study explored the relationship between motor performance, activities of daily living (ADLs), and quality of life (QOL) in preschool children with and without motor coordination difficulties. Forty-one children aged 3 to 6 years attending a developmental support class in Japan, were assessed using the Movement Assessment Battery for Children-2 (MABC-2), the Functional Independence Measure for Children (WeeFIM), and the Kiddy-KINDL-R Parent version. Participants were divided into two groups based on MABC-2 scores: children with motor clumsiness (MC group, n = 23) and those without (NMC group, n = 18). The Mann–Whitney U test revealed that the MC group had significantly lower motor and cognitive ADL performance and poorer peer relationship quality compared to the NMC group. However, no significant differences were found in other QOL domains. Binary logistic regression showed a significant positive association between motor performance and the Friends QOL domain, suggesting that better motor skills may contribute to higher-quality peer relationships. ADLs did not show a significant relationship with any QOL subdomains. These findings highlight the importance of assessing motor performance and ADLs to guide interventions, especially those promoting social participation, to enhance the overall well-being and QOL of children with motor coordination difficulties.
