ObjectivesAutism is a neurodevelopmental condition with rising prevalence globally, yet most measurement tools have been developed in high-income countries, leaving major gaps in low- and middle-income contexts. To address this imbalance, we developed the Autism in the Context of Education-Kenya Survey (ACE-KS), a culturally grounded instrument created through evidence-centered design and participatory action research. This study aimed to provide psychometric validity evidence for the ACE-KS and its intended use: understanding Kenyan caregivers' and teachers' knowledge and beliefs about autism to inform training and intervention efforts.MethodsThis cross-sectional study was conducted between September 2024 and August 2025 in Kenya. Kenyan researchers administered the ACE-KS to caregivers (n = 88) and teachers (n = 100) of children with autism. The survey included six conceptual scales: perceived causes of autism, attitudes/actions toward autistic children, perceived outcomes, caregiver responsibilities, educational priorities, and teaching practices. Confirmatory and exploratory factor analyses were used to examine factor structure and dimensionality. Reliability was assessed using ordinal alpha and omega coefficients. Relationships between latent constructs and external variables (autism-training experience) were examined via structural equation modeling. Analyses were conducted in R using standard fit indices (comparative fit index [CFI], root mean square error of approximation [RMSEA], and standardized root mean square residual).ResultsParticipants were predominantly female (90%) with diverse educational backgrounds; 53% of caregivers and 80% of teachers had received autism-related training. Factor analyses supported bidimensional models for attitudes/actions and perceived outcomes, and unidimensional models for caregiver responsibilities and educational priorities (CFI >= 0.95, RMSEA <= 0.08). Reliability was acceptable to high across retained scales (omega = 0.67-0.89). Regression analyses indicated that autism training was associated with less negative attitudes and behaviors toward autistic children (-0.58 SD).ConclusionsFindings provide strong initial validity evidence for the ACE-KS as a culturally responsive tool to assess autism-related knowledge and beliefs in Kenya. The survey's psychometric properties support its use in informing caregiver and teacher trainings, though further testing with larger and more diverse samples is warranted. The study also illustrates best practices for developing and validating instruments in low-resource contexts, emphasizing that validity is context- and purpose-specific rather than a one-time achievement.

Peer-mediated instruction and aided AAC modeling are evidence-based practices that have been combined to support the communication skills of individuals using augmentative and alternative communication, but previous reviews and analyses have not yet synthesized studies examining school-based peer-mediated aided AAC modeling. A systematic review of the research yielded seven included studies that were evaluated for participant characteristics, peer training characteristics, intervention characteristics, communication outcomes, and quality measures. The results of this review revealed that the practice is implemented in mostly inclusive, nonacademic settings with minimal diversity in the population of students who participated in peer-mediated aided AAC modeling interventions and a limited scope of communication outcomes. The findings of the review provide direction for future research and implications for practice in the school setting.

Caregivers of autistic children consistently report worse mental health outcomes compared to caregivers of non-autistic children, and behavior problems in autistic children are negatively correlated with caregiver mental health. Despite these difficulties, families of autistic individuals often demonstrate optimism and resilience, which may act as a protective factor against stressors. However, the onset of the COVID-19 pandemic caused detrimental effects on many aspects of life, which may have exacerbated challenges already experienced by families. This study examined the relationship between child behavior problems, family resilience, and the mental health of caregivers of autistic children, with a focus on how the relationship between these variables changed across the pandemic. Data were obtained from the 2019–2021 National Survey of Children’s Health. Binary logistic regression analyses were conducted to assess the association between child behavior problems and caregiver mental health. Separate binary logistic regressions were run to evaluate whether family resilience moderated the aforementioned relationships. Findings indicated a significant relationship between child behavior problems and caregiver mental health across the survey years. Family resilience did not moderate this relationship but was associated with better caregiver mental health across all three years. These results suggest that while resilience plays a crucial role in caregiver well-being, it does not buffer against the effects of child behavior challenges. The study underscores the need for targeted interventions that address both child behavior and caregiver mental health while fostering resilience within families.

Caregivers of individuals with rare neurogenetic conditions often experience mental health challenges, often alongside substantial experiences of resilience. Unfortunately, caregiving burden can make accessing mental health support difficult, and restricted resources during the COVID-19 pandemic further exasperated these challenges. The present study leveraged a community-academic partnership to pilot three virtual telemental health therapies-Acceptance and Commitment Therapy, Dialectical and Behavioral Therapy, and Integrated Couples' Behavioral Therapy-in a sample of 80 caregivers of individuals with Prader Willi syndrome and Williams syndrome. Across 12 weeks of treatment, caregivers completed clinical assessment forms and daily ecological momentary assessments to monitor well-being and mental health. Results provide preliminary evidence that each treatment was feasible, acceptable, and potentially effective in addressing the mental health needs of most caregivers. Virtual community-academic partnerships may provide a useful model for supporting caregivers, while also training the next generation of providers ready to meet the unique, persistent needs of this population. Randomized controlled trials are a necessary next step to determining efficacy. Given that mental health challenges for caregivers pre-dated the pandemic and continue to persist, identifying suitable treatment options remains high priority.

Background Even before the COVID-19 pandemic, caregivers of children with rare neurogenetic conditions (NGCs) experienced physical and mental health challenges. These challenges escalated during the COVID-19 pandemic due to crisis-level breakdowns in support services. Tele–mental health and parenting support services expanded rapidly in response to the COVID-19 pandemic and may be well suited to facilitate necessary support interventions for NGC caregivers. However, it remains unclear how to match these evidence-based interventions to individual NGC caregivers’ needs. Objective Project WellCAST (Supporting Well-Being of Caregivers via Telehealth) is an early-phase clinical trial designed to prospectively test which evidence-based telehealth interventions best meet the needs of NGC caregivers. Methods Interested and eligible NGC caregivers are enrolled in a 24-week program with 5 phases, including baseline (2 weeks), support program (12 weeks), and follow-up (2 weeks) periods; a 4-week gap separates the phases. Caregivers participate in 2 randomizations, namely support program assignment via a precision health algorithm versus quasi-random assignment and motivational coaching by another NGC caregiver and project staff member (“peer coaching”) versus standard check-ins by a staff member who is not an NGC caregiver (“staff coaching”). Virtual support programs include acceptance and commitment therapy, dialectical and behavioral therapy, culturally informed cognitive behavioral therapy, research units in behavioral intervention, naturalistic communication intervention, Durand sleep intervention, and self-guided resources. A subset of caregivers will participate as waitlist controls before engaging in support programs. We developed and optimized a personalized health decision tree algorithm that matches caregivers to telehealth support programs. We then proceeded to test the feasibility and efficacy of algorithm-assigned support programs across 4 waves of data collection, relative to quasi-random assignment and waitlist controls. During each wave, the personalized health algorithm relies on 2 weeks of baseline data collection using clinical tools and innovative smartphone-based ecological momentary assessments. Across waves, we also test the efficacy of a motivational peer-to-peer coaching protocol, deployed by trained NGC caregiver staff, in enhancing support program uptake and clinical outcomes. Results Four waves of data collection are scheduled for August 2023 to September 2025. Preregistered analyses will contrast feasibility, efficacy, and acceptability across algorithms and coaching assignments. Multiple waves of data collection will allow us to continually optimize the algorithm and test incremental improvements across project phases. Secondary analyses will probe the feasibility and efficacy of individual evidence-based support programs and peer coaching. Conclusions Project WellCAST will test whether a digital personalized health decision tree algorithm and peer coaching protocol can prospectively enhance telehealth support program outcomes among NGC caregivers. This project is relevant to the specific population of NGC caregivers and may also inform how brief digital assessments, precision health tools, and community-academic partnerships can enhance the public health response to mental health crises across other high-need populations. Trial Registration ClinicalTrials.gov NCT05999448; https://clinicaltrials.gov/study/NCT05999448 and OSF Registries 10.17605/OSF.IO/8WNDP; https://osf.io/8wndp International Registered Report Identifier (IRRID) DERR1-10.2196/64360

Functional communication training (FCT) is a widely used behavioral intervention for reducing challenging behavior for students with disabilities. As more students with disabilities are being served in educational settings, it is essential to understand and evaluate the evidence base of FCT in educational contexts. A clear synthesis of how FCT has been applied, by whom, under what conditions, and with what outcomes is needed to evaluate its evidence base and inform translational practice. This mega-review aggregated six systematic reviews and meta-analyses of FCT implemented in educational settings, following PRISMA guidelines. Data were extracted at the review level on participant characteristics (e.g., age, gender, race, disability), functional behavior assessment (FBA) methods and identified functions of behavior, interventionist roles, procedural components of FCT, methodological quality, and outcomes (behavioral change, communication, social validity), as well as documented recommendations. Findings revealed consistent positive effects of FCT on challenging behavior reduction, with variability in reported moderators (e.g., setting, communication modality, and implementer). Notable gaps included limited demographic reporting, overrepresentation of male participants, and variability in review rigor. Implications of this mega-review include the need for greater transparency in methodological reporting, inclusion of culturally responsive and demographically disaggregated data, and appropriate individualized modification of FBA and FCT implementation by natural change agents in educational settings to support generalization, maintenance, and equity.

Background: Autism is a complex neurodevelopmental disability with global prevalence of one in 100 individuals. Poor access to interventions in both under-resourced regions of high-income countries and low- and middle-income countries has deleterious effects on the health and wellbeing of individuals with autism and their families. Our objective was to utilize a reciprocal innovation framework and participatory methods to adapt and co-develop a culturally grounded group-based wellbeing and naturalistic developmental behavioural intervention (NDBI) training program for caregivers of young children with autism to be implemented in Kenya and rural Indiana. Methods: This study was conducted within the Academic Model Providing Access to Healthcare (AMPATH) program. An evidence-informed Naturalistic Developmental Behavioral Intervention (NDBI) previously utilized in Indiana was adapted and iteratively refined using the Ecological Validity Framework (EVF) by a team of US and Kenyan disability experts. Key adaptations to the program were made across the EVF domains of language, persons, metaphors/content, concepts, goals, methods, and context. Results: Substantial cultural adaptations were made to the NDBI following the EVF model, including the addition of traditional Kenyan cultural practices, use of narrative principles, and focus on daily routines over play. Pepea, the adapted program, involves 10 group sessions covering content in basic education on autism, positive caregiver coping strategies, and behavioural skills training to promote child communication and reduce challenging behaviour. Key adaptations for Pepea were integrated back into a US NDBI caregiver training program. Conclusions: This study fills a critical gap by detailing the adaptation process of a caregiver wellbeing and naturalistic developmental behavioural training program for caregivers of children with autism in low-resource settings. Our next steps are to report on mixed-methods outcomes from pilot implementation. Our long-term goal is to apply these insights to advance sustainable and scalable autism intervention services across the globe.

Background:Autism spectrum disorder (ASD) impacts a large global community, with a prevalence of nearly 1 in 100 children. However, little is known about the educational experience of children with ASD and other neurodevelopmental disorders (NDD) in low- and middle-income countries (LMICs). Guidance from local communities is essential when developing a cultural inquiry into this educational landscape. Our project objective was to evaluate community perspectives on ASD and areas of development for future support network trainings. Methods:This qualitative study was performed within the Academic Model Providing Access to Healthcare (AMPATH) program in Eldoret, Kenya. Using group discussions, this approach engaged stakeholders from three areas: medical personnel, educators, and caregivers/families. Kenyan professionals in child psychiatry, occupational therapy, and special education guided discussion and led the recruitment of key informants for interviews. Within this qualitative analysis, brief thematic analysis of dialogue elucidated key themes. Results:Four focus groups were held, with 87 total participants (group size = 12-29). Four main themes were identified in the data: beliefs about causes, treatment options, barriers to education, and a need for community advocacy. Advocacy was a major focus of discussions, due to a sentiment of fragmentation and poor acceptance from the community. Stigmatization carried over into localbeliefs about causes of ASD, which included poor nutrition, witchcraft, and genetics. Finding resources to access education and therapy was a challenge, especially for families in rural settings. These viewpoints informed study protocol adaptation by expanding recruitment to include community-based service providers and staff from additional schools, and integrating themes into interview questions. Conclusion:This project prioritized dialogue with stakeholders to gain insights to inform the development of a cultural inquiry into the special education landscape in western Kenya. Themes elucidated from this project provided critical feedback to inform future study protocol and an expanded recruitment plan.

Despite the wide usage of technology in educational settings, the overall evidence base of technology-aided reading interventions for students with autism spectrum disorder (ASD) has not been fully investigated. The purpose of this meta-analysis was to quantify the effects of technology-aided reading interventions for students with ASD and determine if participant and intervention characteristics moderate intervention effects. Reviewed articles were systematically identified and evaluated for methodological rigor according to design standards suggested by What Works Clearinghouse (WWC). A total of 13 single-case studies that met the WWC standards (50%) were analyzed for effects using Tau-U and yielded 50 separate effect sizes with 33 participants. Results of this study found a moderate overall effect of .89 (CI95 [.83, .96]) for technology-aided reading interventions, and variables associated with using time delay moderated reading outcomes.

Engaging with families to support their children’s social, emotional, and behavioral development is a key feature of positive behavior supports (PBSs). The purpose of this Special Series is to disseminate research on the application of PBSs with families and in home contexts. This issue contains five articles, including single case experimental designs, survey design, mixed-methods, and a literature synthesis. These articles provide a deeper understanding and clear implications for improving research and practice to increase family access, involvement, and benefit from PBSs.

The purpose of this study was to examine the effects of using adapted science eBooks within shared reading on comprehension and task engagement of high school students with autism spectrum disorder (ASD). A grade-level science textbook was selected and converted into an eBook format, incorporating various visual and auditory features (e.g., text-to-speech, summarized sentences, highlighted keywords) and presented on an iPad. The shared reading intervention included before, during, and after reading strategies (i.e., pre-teaching target vocabulary words, sharing information, retelling), with direct instruction on locating literal information. The intervention effects on reading comprehension and task engagement were evaluated using a single-case multiple probe design. The results of this study indicated that all participants demonstrated improvements in reading comprehension. Despite the longer intervention sessions compared to the baseline, all participants exhibited similar or enhanced levels of task engagement during the intervention sessions. The findings of this study provide empirical evidence supporting the use of adapted eBooks within shared reading as a means to increase access to grade-level science texts for high school students with ASD while maintaining a high level of task engagement. This intervention holds promise for improving the learning outcomes for students with ASD in science content area.

Individuals with autism spectrum disorder (ASD), in addition to core deficits in social communication, tend to devote attention to a restricted range of environmental events. Embedded interest interventions are used to establish one’s motivation to participate in low-preferred or neutral activities. We designed this single-case research study to evaluate the use of interests as receptive identification targets for children with ASD in the context of an intervention with added components as needed. We compared the use of high- versus low-preferred receptive identification targets on receptive identification acquisition, stimulus generalization, and generalization to labels. We also evaluated ancillary variables (i.e., eye gaze, response attempts, and challenging behaviors) to examine if embedding interests acted to establish motivation for task engagement. An adapted alternating treatment design was used with changing conditions and reversal design. Two children acquired more high-preferred receptive identification targets in fewer trials overall compared to low-preferred targets, one of whom only showed marginal improvements in the HP condition relative to the LP condition. A third participant had no improvements in either condition. All participants demonstrated increased engagement in the high-preferred condition relative to the low-preferred condition. Participants who mastered targets showed some improvements in generalization probes, primarily for HP targets. Practitioners may consider beginning with high-preferred targets in receptive identification programs for children with ASD, but side effects should be monitored in tandem with acquisition outcomes.

IntroductionService dogs are an increasingly popular complementary intervention for children with autism spectrum disorder. However, despite increasing demand, there remains a lack of empirical research on their potential benefits. The purpose of this study was to evaluate the effects of service dogs on children with autism and their caregivers.MethodsA total of N = 75 families of children with autism were recruited from a non-profit service dog provider in the US, including n = 39 families previously placed with a service dog and n = 36 families engaging in usual care while on the waitlist. Caregivers completed an online survey containing both self- and proxy-report standardized measures of child, caregiver, and family functioning. Linear regressions modeled the relationship between service dog presence and survey outcomes, controlling for relevant child and caregiver covariates.ResultsResults indicated that having a service dog was associated with significantly better child sleep behaviors, including better sleep initiation and duration and less sleep anxiety/co-sleeping with medium effect sizes. However, service dog presence was not significantly related to child withdrawal, negative emotionality, emotional self-control, hyperactivity, irritability, and lethargy with small effect sizes. For caregivers, having a service dog was not significantly related to standardized measures of caregiver strain, sleep disturbance, depression, or the impact of the child’s condition on family functioning with small effect sizes. Supplemental matched case-control analyses confirmed these findings.DiscussionIn conclusion, service dogs were found to positively impact sleep behaviors among children with autism, but may not uniformly relate to other areas of child and caregiver wellbeing. Prospective longitudinal designs, larger sample sizes able to detect small effects, and studies that measure sleep using objective methods are needed to build on these findings.

Caregivers of young children with neurodevelopmental disabilities report a need for training and support in reducing their children’s challenging behavior at home. The purpose of this study was to evaluate a telehealth caregiver training program comprised of online modules and weekly practice-based coaching on caregiver implementation fidelity of functional communication training and associated outcomes of child challenging behavior and communication. Using a single case nonconcurrent multiple baseline design across caregiver-child dyads, we observed improvements in FCT implementation fidelity, decreases in challenging behavior, and increases in manding. Participants rated the telehealth program delivery and the FCT intervention as socially valid.

Objectives:Prior research has established assessment methodologies, such as functional analysis to identify specific contexts in which restricted and repetitive behavior (RRB) occurs, and measures of heart rate variability (HRV) to index the level of autonomic arousal in individuals with autism spectrum disorder (ASD). Yet, a gap remains in integrating multiple assessment methodologies to examine the complex underlying mechanisms of RRB. This study piloted a multi-disciplinary approach to assess both the functional behavioral and neurophysiological factors that may underlie occurrences of RRB. The study (a) evaluated the effect of a modified functional analysis protocol on delineating functional subtypes of RRB and (b) explored the effect of using a wearable technology within a functional analysis on identifying the relationship between RRB and HRV. Method:A single-case alternating treatment design was used to randomly alternate noncontingent low-stimulation and high-stimulation conditions in a modified functional analysis protocol. Simultaneous measurement of RRB and HRV was obtained through direct behavioral observations and a wristband that collects blood volume pulse, respectively. Visual analysis of time series data was used to determine the functional subtypes of RRB, and nonparametric correlational analyses were conducted to determine the association between HRV and RRB. Results:Findings from a sample of six participants suggest preliminary effectiveness of the assessment protocol in identifying subtypes of RRB and a significant correlation between HRV and RRB. Conclusions:This study demonstrates the potential effect and usability of a wearable technology-aided biobehavioral approach to assess RRB and HRV in individuals with ASD.

IntroductionTimely access to early support that optimises autistic children’s development and their caregiver’s mental health is critical. Naturalistic developmental behavioural interventions (NDBIs) and acceptance and commitment therapy (ACT) are evidence-based supports that can enhance child learning and behaviour, and adult well-being, respectively. The traditional face-to-face delivery of these approaches is resource intensive. Further, little is known about the benefit of parallel child-focused and caregiver-focused supports. The aims of this trial are to evaluate the effectiveness and social validity of telehealth-delivered, caregiver-implemented, child-focused NDBI and caregiver-focused ACT when delivered alone and in parallel, on autistic children’s social communication and caregiver well-being.Methods and analysisThe study will use a randomised, single-blind clinical trial with three parallel arms: NDBI; ACT and ACT+NDBI. We will recruit a minimum of 78, 2–5-year-old autistic children and their families throughout Aotearoa New Zealand. Support will be delivered over 13 weeks using a combination of culturally enhanced web-based modules and online group coaching. Primary outcome variables include children’s social communication/engagement with their caregiver as well as caregiver stress and will be evaluated using a repeated measures multivariate analysis of variance. Outcome variables are assessed at baseline (before randomisation), immediately postparticipation and at 3-month follow-up.Ethics and disseminationThe trial is approved by the Health and Disability Ethics Committee (2022 FULL 12058). The findings of this trial will be disseminated through peer-reviewed journals and national and international conference proceedings regardless of the magnitude/direction of effect. Additionally, data will be shared with stakeholder groups, service providers and health professionals.Trial registration numberAustralian New Zealand Clinical Trials Registry (ACTRN12622001134718).

Angelman syndrome (AS) is a rare genetic developmental disability that presents with high rates of co-occurring sleep difficulties. Most existing research has focused on the pathophysiology of sleep problems in people with AS, and suggests that sleep problems are the result of genetic and neurobiological factors. However, little is known about the role of the social environment and learning in sleep problems in children with AS. This descriptive study used survey data from 139 parents of children with AS to investigate: 1) the type, topography and severity of children's sleep problems; 2) the collateral child, parent and family impacts of the sleep problems; 3) treatment selection practices and the perceived effectiveness of these treatments; and 4) sources of support and treatment advice received. Parents reported that the majority of children experienced sleep problems, resulting in numerous deleterious effects on child and family functioning. They also reported high levels of concern about these sleep problems, but low levels of perceived support. Study findings highlight the need to establish a disability-specific profile of the type and impact of sleep problems experienced by children with AS, and have further implications for the delivery of clinical services and support provided to parents of children with AS.