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BackgroundWhile early autism intervention can significantly improve outcomes, gaps in implementation exist globally. These gaps are clearest in Africa, where forty percent of the world's children will live by 2050. Task-sharing early intervention to non-specialists is a key implementation strategy, given the lack of specialists in Africa. Naturalistic Developmental Behavioral Interventions (NDBI) are a class of early autism intervention that can be delivered by caregivers. As a foundational step to address the early autism intervention gap, we adapted a non-specialist delivered caregiver coaching NDBI for the South African context, and pre-piloted this cascaded task-sharing approach in an existing system of care.ObjectivesFirst, we will test the effectiveness of the caregiver coaching NDBI compared to usual care. Second, we will describe coaching implementation factors within the Western Cape Department of Education in South Africa.MethodsThis is a type 1 effectiveness-implementation hybrid design; assessor-blinded, group randomized controlled trial. Participants include 150 autistic children (18-72 months) and their caregivers who live in Cape Town, South Africa, and those involved in intervention implementation. Early Childhood Development practitioners, employed by the Department of Education, will deliver 12, one hour, coaching sessions to the intervention group. The control group will receive usual care. Distal co-primary outcomes include the Communication Domain Standard Score (Vineland Adaptive Behavior Scales, Third Edition) and the Language and Communication Developmental Quotient (Griffiths Scales of Child Development, Third Edition). Proximal secondary outcome include caregiver strategies measured by the sum of five items from the Joint Engagement Rating Inventory. We will describe key implementation determinants.ResultsParticipant enrolment started in April 2023. Estimated primary completion date is March 2027.ConclusionThe ACACIA trial will determine whether a cascaded task-sharing intervention delivered in an educational setting leads to meaningful improvements in communication abilities of autistic children, and identify implementation barriers and facilitators.Trial registrationNCT05551728 in Clinical Trial Registry (https://clinicaltrials.gov).

Abstract Background This implementation feasibility study was conducted to determine whether an evidence-based parent-implemented distance-learning intervention model for young children at high likelihood of having ASD could be implemented at fidelity by Part C community providers and by parents in low-resource communities. Methods The study used a community-academic partnership model to adapt an evidence-based intervention tested in the current pilot trial involving randomization by agency in four states and enrollment of 35 coaches and 34 parent-family dyads. After baseline data were gathered, providers in the experimental group received 12–15 h of training while control providers received six webinars on early development. Providers delivered 6 months of intervention with children-families, concluding with data collection. Regression analyses were used to model outcomes of the coach behaviors, the parent fidelity ratings, and child outcomes. Results A block design model-building approach was used to test the null model followed by the inclusion of group as a predictor, and finally the inclusion of the planned covariates. Model fit was examined using changes in R 2 and F-statistic. As hypothesized, results demonstrated significant gains in (1) experimental provider fidelity of coaching implementation compared to the control group; and (2) experimental parent fidelity of implementation compared to the control group. There were no significant differences between groups on child developmental scores. Conclusions Even though the experimental parent group averaged less than 30 min of intervention weekly with providers in the 6 months, both providers and parents demonstrated statistically significant gains on the fidelity of implementation scores with moderate effect sizes compared to control groups. Since child changes in parent-mediated models are dependent upon the parents’ ability to deliver the intervention, and since parent delivery is dependent upon providers who are coaching the parents, these results demonstrated that two of these three links of the chain were positively affected by the experimental implementation model. However, a lack of significant differences in child group gains suggests that further work is needed on this model. Factors to consider include the amount of contact with the provider, the amount of practice children experience, the amount of contact both providers and parents spend on training materials, and motivational strategies for parents, among others. Trial registration Registry of Efficacy and Effectiveness Studies: #4360, registered 1xx, October, 2020 – Retrospectively registered, https://sreereg.icpsr.umich.edu/sreereg/

Abstract Background Autism spectrum disorder (ASD) affects one in 54 children in the United States of America, and supporting people with ASD across the lifespan presents challenges that impact individuals, families, and communities and can be quite costly. The American Academy of Pediatrics has issued recommendations for routine ASD screening at 18 and 24 months, but some research suggests that few pediatricians perform high-fidelity, standardized screening universally. Furthermore, the United States Preventive Services Task Force (USPSTF) found insufficient evidence to recommend for or against universal ASD screening. The objective of this study is to test the hypothesis that children with ASD who have high fidelity; standardized screening will achieve superior outcomes at 5 years of age compared to children receiving usual care ASD detection strategies. Methods This is a cluster-randomized, controlled clinical trial in 3 sites in the USA. Pediatric practices will be randomized to implement universal, standardized, high-fidelity toddler screening or usual care, with randomization stratified by the practice size. The study will enroll 3450 children, approximately half in each group. From this sample, we anticipate 100 children to be diagnosed with ASD. Children in both groups receiving an ASD diagnosis will be administered the Early Start Denver Model, an evidence-based early intervention addressing social, communication, and cognitive functioning. Treatment will last for 1 year, with up to 20 h per week of therapy for children with ASD. Results Primary outcomes measured at baseline, following treatment, and at 4 and 5 years of age include ASD symptom severity (Brief Observation of Social Communication Change (BOSCC)) and cognitive functioning (Mullen Scales of Early Learning (MSEL) and Differential Abilities Scale-II (DAS-II)). Secondary outcomes in children include measures of adaptive functioning, ASD symptoms, and kindergarten readiness; secondary analyses will also examine stress and empowerment among parents. Several novel exploratory measures will be included as well. The study will utilize a modified intention-to-treat analysis. Conclusions This trial will evaluate the impact of universal, standardized, high-fidelity screening for ASD among children at 18 months of age, with a goal of providing evidence to support this strategy to detect ASD in toddlers in order to start treatment as young as possible and maximize outcomes. Ethics and dissemination This study was approved by the Institutional Review Board at Drexel University (IRB protocol: 1607004653). All findings will be provided by the principal investigator via email; data will be available through the NIMH Data Archive ( https://nda.nih.gov/ ). Trial registration ClinicalTrials.gov NCT03333629 . Registered on November 7, 2017

Abstract Introduction Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial. Methods MTG was evaluated using mixed methods that included qualitative analysis and pre/post-test without concurrent comparison group. Participants (n=9) were primary caregivers of children (ages 2-7 years) with a recent ASD diagnosis and whose annual income was at or below 185% of the federal poverty level. In order to facilitate trust and relationship building, peer coaches delivered MTG. The coaches were parents of children with ASD who we trained to deliver the intervention. MTG consisted of up to 12 meetings between coaches and caregivers over the course of 18 weeks. Coaches delivered the intervention in homes and other community locations. Coaches shared information about various “modules,” which were topics identified as important for families with a new ASD diagnosis. Coaches worked with families to answer questions, set weekly goals, assess progress, and offer guidance. For the pilot, we focused on three primary outcomes: feasibility, engagement, and satisfaction. Feasibility was measured via enrollment and retention data, as well as coach fidelity (i.e., implementation of MTG procedures). Engagement was measured via number of sessions attended and percentage completion of the selected outcome measures. For completers (n=7), satisfaction was measured via a questionnaire (completed by caregivers) and open-ended interviews (completed by caregivers and coaches). Results We enrolled 56% of referred caregivers and 100% of eligible families. Retention was high (78%). Coaches could deliver the intervention with fidelity, completing, on average, 83% of program components. Engagement also was high; caregivers attended an average of 85% of total possible sessions and completed 100% of their measures. Caregivers indicated moderately high satisfaction with MTG. Qualitative data indicated that caregivers and coaches were positive about intervention content, and the coach-caregiver relationship was important. They also had suggestions for changes. Conclusion Mind the Gap demonstrates evidence of feasibility, and data from the pilot suggest that it addresses intervention engagement barriers for a population that is under-represented in research. The results and suggestions from participants were used to inform a large-scale RCT, which is currently underway. Overall, MTG shows promise as an intervention that can be feasibly implemented with under-resourced and ethnic minority families of children with ASD Trial registration This study is registered with ClinicalTrials.gov: NCT03711799 .

Abstract Background Children with autism receive most of their intervention services in public schools, but implementation of evidence-based practices (EBPs) for autism varies. Studies suggest that individual (attitudes) and organizational characteristics (implementation leadership and climate) may influence providers’ use of EBPs, but research is relatively limited in this area. This study examined individual and organizational factors associated with implementation of three EBPs—discrete trial training, pivotal response training, and visual schedules—for children with autism in special education classrooms in public elementary schools. Methods Participants included 67 autism support teachers and 85 other classroom staff from 52 public elementary schools in the northeastern United States. Participants reported their attitudes toward EBPs (e.g., intuitive appeal, willingness if required, openness, and divergence), implementation leadership and climate of their school, and the frequency with which they deliver each of three EBPs. Linear regression was used to estimate the association of attitudes about EBPs with organizational characteristics and intensity of EBP use. Demographic covariates with a bivariate association with EBP use significant at p

Autistic students benefit from child-centered goals that align with evidence-based practices (EBPs) that meet their individualized needs, however, most teachers are not trained in how to implement autism-specific EBPs. The challenges do not lie with teachers alone. Professional development (PD) providers, such as district or regional autism experts who train and coach teachers on how to implement autism-specific EBPs, face barriers accessing the needed supports to conduct high-quality PD and lack experience with individualizing their methods for training and coaching teachers. When PD providers have networks of professional support, they can potentially gain access to resources to provide successful individualized coaching for teachers. No research has measured the impact of the social networks of PD providers on their performance as coaches in classrooms for teachers of autistic students. To test the hypothesis that social network resources can impact the performance of PD providers who coach teachers how to use EBPs for their autistic students, we conducted social network analysis with PD providers. Findings suggest that network factors were associated with the self-reported performance for PD providers. PD providers who have more people in their networks who were autism EBP experts, as well as more people in their networks who supported them with how to individualize their PD efforts to specific teachers or districts, had higher performance as teacher coaches. We discuss future research about how to support network development for PD providers and policy implications.

Autistic youth frequently experience interfering anxiety, and schools may be an ideal setting to deliver mental health care. A type 1 hybrid-effectiveness, cluster randomized trial was used to examine the effectiveness of school-based Facing Your Fears compared to usual care. Change in provider cognitive behavior therapy knowledge and treatment fidelity (adherence and provider competence) were also examined. Seventy-seven interdisciplinary school providers across 25 elementary/middle schools were trained via a train-the-trainer approach. Eighty-one students, ages 8-14 years, with autism or suspected autism and anxiety participated. Students who received school-based Facing Your Fears displayed significantly greater reductions in anxiety compared to students in usual care according to caregiver and child report (Screen for Anxiety and Related Emotional Disorders). Significant reductions in total anxiety (p = 0.012), separation (p = 0.002), and social anxiety (p = 0.003) subscales occurred, according to parent report. Student self-report indicated significant reductions on the social anxiety subscales (p = 0.001). Interdisciplinary school providers demonstrated significantly increased cognitive behavior therapy knowledge following training (p < 0.001). Mean adherence and competence ratings were strong. The positive effectiveness and implementation outcomes are encouraging. Training interdisciplinary school providers to deliver school-based Facing Your Fears has the potential to increase access to care for anxious autistic students. Future directions and limitations are discussed.

The number of individuals seeking treatment for autism spectrum disorders (ASD) is increasing quickly and families often have difficulty accessing effective therapy. A number of computer assisted interventions (CAI) have been developed in an attempt to address these needs. However, most development of CAI has taken place in the absence of an understanding of how variability in ASD behavioral phenotypes may affect CAI effectiveness. The current effort describes the first step towards developing a framework to understand how behavioral phenotypes among those diagnosed with ASD can inform the design of CAI. Specifically, we propose a four-step methodology to better inform the design and development of such CAI. Generally, these steps involve by (1) identifying a need where CAI is appropriate, (2) identifying a technology or set of technologies that are relevant for that population, (3) identifying an appropriate population that stands to benefit from our CAI, and (4) identifying specific content to be included in our CAI. We also describe the results of an effort applying this proposed methodology for the development of our CAI.