Screening Options in Autism Telediagnosis: Examination of TAP, M-CHAT-R, and DCI Concordance and Predictive Value in a Telediagnostic Model.

Tele-assessment of autism in early childhood has increased. However, it is unclear how autism screening tools (M-CHAT-R, DCI) function as part of tele-assessment and relate to a commonly used tele-assessment instrument, the TAP. 361 families from a clinically referred sample of children (mean age: 27.63 months, sd = 4.86 months) completed the M-CHAT-R and DCI prior to a tele-assessment visit utilizing the TAP. Data was collected on demographic background, measure scores, and diagnostic outcome. No significant differences in measure scores or diagnostic findings emerged in age at referral, age group, age at diagnosis, or child sex, ethnicity, or racial background. The M-CHAT-R and DCI correlated strongly and positively. Older age was associated with lower risk scores on screening instruments. Children with autism had significantly higher scores on all screener and subdomain scores, with the exception of DCI Behavior. Subdomains of the DCI emerged as the strongest predictor of diagnostic outcome. Both the DCI total score and the M-CHAT-R significantly related to diagnostic outcome and TAP score in this tele-assessment model, regardless of child age or sex. Findings also support use of the DCI for children under 24 months of age.

Measuring Developmental Delays: Comparison of Parent Report and Direct Testing.

PURPOSE: Developmental assessment is part of a comprehensive autism evaluation. During in-person evaluations, developmental assessment is completed via direct testing by an examiner. In telehealth evaluations, developmental assessment relies on caregiver-report instruments. This study examined correspondence between caregiver report and direct testing of developmental skills. METHODS: Participants were 93 children, aged 18-42 months, undergoing evaluation for possible autism spectrum disorder (ASD). Caregivers were interviewed with the Developmental Profile, 4th edition (DP-4) via telehealth platform and children were tested in person 2-4 weeks later using the Mullen Scales of Early Learning (MSEL). RESULTS: Correlations between the DP-4 and MSEL were high (ranging from 0.50 to 0.82) across standard scores, age equivalents, and functional categories, as well as across individual subtests and overall composite scores. CONCLUSION: The high convergent validity found in this study suggests that the DP-4 provides a suitable proxy for direct developmental testing using the MSEL in the context of telehealth evaluations for ASD in young children, delivering a good estimate of both developmental functioning and presence of delays. TRIAL REGISTRATION: Data were obtained from registered clinical trial NCT05047224, date of registration 2021-09-07.

Screening, Diagnosis, and Intervention for Autism: Experiences of Black and Multiracial Families Seeking Care.

PURPOSE: Despite advances in screening and awareness, Black and multiracial families continue to experience challenges when seeking an autism diagnosis for their children. METHODS: We surveyed 400 Black and multiracial families of young children with autism from an existing research database in the United States about their retrospective diagnostic experiences. We gathered quantitative and qualitative data and engaged in iterative coding to understand timing and content of first concerns, families' experiences of care providers and systems, and the impact of race and culture on accessing care. RESULTS: Families provided examples of early developmental concern and described provider, systemic, and cultural barriers and facilitators to care. Families also provided insight into the influence of culture and made recommendations on how the medical system could better care for Black and multiracial families of children with autism. CONCLUSIONS: Results add to a growing body of literature supporting the need for culturally sensitive and accessible care related to developmental monitoring, diagnosis, and follow-up care for Black and multiracial children.

Development of a Novel Telemedicine Tool to Reduce Disparities Related to the Identification of Preschool Children with Autism.

The wait for ASD evaluation dramatically increases with age, with wait times of a year or more common as children reach preschool. Even when appointments become available, families from traditionally underserved groups struggle to access care. Addressing care disparities requires designing identification tools and processes specifically for and with individuals most at-risk for health inequities. This work describes the development of a novel telemedicine-based ASD assessment tool, the TELE-ASD-PEDS-Preschool (TAP-Preschool). We applied machine learning models to a clinical data set of preschoolers with ASD and other developmental concerns (n = 914) to generate behavioral targets that best distinguish ASD and non-ASD features. We conducted focus groups with clinicians, early interventionists, and parents of children with ASD from traditionally underrepresented racial/ethnic and linguistic groups. Focus group themes and machine learning analyses were used to generate a play-based instrument with assessment tasks and scoring procedures based on the child's language (i.e., TAP-P Verbal, TAP-P Non-verbal). TAP-P procedures were piloted with 30 families. Use of the instrument in isolation (i.e., without history or collateral information) yielded accurate diagnostic classification in 63% of cases. Children with existing ASD diagnoses received higher TAP-P scores, relative to children with other developmental concerns. Clinician diagnostic accuracy and certainty were higher when confirming existing ASD diagnoses (80% agreement) than when ruling out ASD in children with other developmental concerns (30% agreement). Utilizing an equity approach to understand the functionality and impact of tele-assessment for preschool children has potential to transform the ASD evaluation process and improve care access.

Paisley: Preliminary validation of a novel app-based e-Screener for ASD in children 18-36 months.

The purpose of this study was to assess the validity of an autism e-screener, Paisley, when utilized in a clinical research setting via a tablet application. The Paisley application used a series of play-based activities, all of which incorporated varying aspects of the ASD-PEDS. Participants included children (18-36 months; n = 198) referred for evaluation of autism spectrum disorder (ASD) and community providers (n = 66) with differing levels of familiarity with ASD. Community providers administered the Paisley application to children who then completed a comprehensive psychological evaluation. Based on comprehensive evaluation, 75% of children met diagnostic criteria for ASD. Paisley scores were significantly higher for children diagnosed with ASD (15.06) versus those not diagnosed (9.34). The newly determined cutoff ASD-PEDS cutoff score of 13 had significantly higher specificity and positive predictive value than the originally proposed cutoff of 11. Results support the use of Paisley by community providers to identify autism risk in toddlers. Limitations and strengths of the work, as well as opportunities for future clinical validation, are described.

A Randomized Trial of the Accuracy of Novel Telehealth Instruments for the Assessment of Autism in Toddlers.

PURPOSE: Telemedicine approaches to autism (ASD) assessment have become increasingly common, yet few validated tools exist for this purpose. This study presents results from a clinical trial investigating two approaches to tele-assessment for ASD in toddlers. METHODS: 144 children (29% female) between 17 and 36 months of age (mean = 2.5 years, SD = 0.33 years) completed tele-assessment using either the TELE-ASD-PEDS (TAP) or an experimental remote administration of the Screening Tool for Autism in Toddlers (STAT). All children then completed traditional in-person assessment with a blinded clinician, using the Mullen Scales of Early Learning (MSEL), Vineland Adaptive Behavior Scales, 3rd Edition (VABS-3), and Autism Diagnostic Observation Schedule (ADOS-2). Both tele-assessment and in-person assessment included a clinical interview with caregivers. RESULTS: Results indicated diagnostic agreement for 92% of participants. Children diagnosed with ASD following in-person assessment who were missed by tele-assessment (n = 8) had lower scores on tele- and in-person ASD assessment tools. Children inaccurately identified as having ASD by tele-assessment (n = 3) were younger than other children and had higher developmental and adaptive behavior scores than children accurately diagnosed with ASD by tele-assessment. Diagnostic certainty was highest for children correctly identified as having ASD via tele-assessment. Clinicians and caregivers reported satisfaction with tele-assessment procedures. CONCLUSION: This work provides additional support for the use of tele-assessment for identification of ASD in toddlers, with both clinicians and families reporting broad acceptability. Continued development and refinement of tele-assessment procedures is recommended to optimize this approach for the needs of varying clinicians, families, and circumstances.

Design of a Desktop Virtual Reality-Based Collaborative Activities Simulator (ViRCAS) to Support Teamwork in Workplace Settings for Autistic Adults.

Autistic adults possess many skills sought by employers, but may be at a disadvantage in the workplace if social-communication differences negatively impact teamwork. We present a novel collaborative virtual reality (VR)-based activities simulator, called ViRCAS, that allows autistic and neurotypical adults to work together in a shared virtual space, offering the chance to practice teamwork and assess progress. ViRCAS has three main contributions: 1) a new collaborative teamwork skills practice platform; 2) a stakeholder-driven collaborative task set with embedded collaboration strategies; and 3) a framework for multimodal data analysis to assess skills. Our feasibility study with 12 participant pairs showed preliminary acceptance of ViRCAS, a positive impact of the collaborative tasks on supported teamwork skills practice for autistic and neurotypical individuals, and promising potential to quantitatively assess collaboration through multimodal data analysis. The current work paves the way for longitudinal studies that will assess whether the collaborative teamwork skill practice that ViRCAS provides also contributes towards improved task performance.

Black Families' Experiences of Developmental Screening: Review of Well-Child Visits to Inform Enhanced Autism Spectrum Disorder Risk Assessment.

OBJECTIVE: Black families face barriers to early diagnosis of autism spectrum disorder (ASD). Most work emphasizes systemic delays to diagnosis rather than how existing screening procedures may affect identification. Our goal was to examine pediatric care visits in which screening was most likely to occur to document behaviors of parents and providers. METHODS: We examined 18- to 36-month primary care visits in our electronic health record system (n = 99) of thirty-nine 4- and 8-year-old Black children later diagnosed with ASD. We extracted qualitative and quantitative data and engaged in consensus coding. We captured whether formal screening occurred, the content of concerns of parents and providers, and referral patterns for follow-up care or evaluation. RESULTS: Consistent with existing work, we found differences in parent and provider concerns and discrepancies in referral rates. Parents often endorsed concerns about language, sleeping or eating habits, behavior, or motor skills rather than ASD, but specific mention of ASD as a concern increased over time. Referrals for follow-up care were more likely when providers, not parents alone, expressed concerns about patient development. CONCLUSION: Pediatric providers cannot place the burden on families to raise autism concerns. Although some level of developmental risk was noted at most visits for children later diagnosed with ASD, referrals were only made when providers were also concerned, and most of these were for speech-language evaluation. Ongoing work is necessary to better understand how existing care systems interact with diverse families to inform the creation of inclusive screening practices that mitigate diagnostic delays.

Investigating differences in symptomatology and age at diagnosis of obstructive sleep apnea in children with and without autism.

INTRODUCTION: Obstructive sleep apnea (OSA) is common in autism spectrum disorder (ASD). Children with OSA can present with a range of symptoms including loud snoring, excessive daytime sleepiness, and changes in cognitive function. Some of these symptoms can overlap with and exacerbate symptoms of ASD, potentially delaying OSA diagnosis in children with both conditions. OBJECTIVE: The primary objective of this study was to assess between-group difference in OSA symptomatology and age at OSA diagnosis in children with and without ASD. METHODS: A retrospective chart review was conducted on 166 pediatric patients (<18 years) with OSA undergoing adenotonsillectomy at a single academic institution between 2019 and 2021. The control group consisted of 91 patients (54.9% male) without ASD. The ASD group included 75 patients (88.0% male). Autism severity was scored on a 1-4 scale using a novel methodology. Statistical analyses included Wilcoxon rank sum tests for continuous variables, chi-squared tests for categorical variables, and multivariable analyses as needed. RESULTS: There was a significant between-group difference in total number of reported OSA symptoms (p < 0.001), with more symptoms reported in patients with ASD. Within the ASD group, lower autism severity was associated with an increased number of reported OSA symptoms (p = 0.006). There was not a significant between-group difference in age at OSA diagnosis (p = 0.999); however, lower autism severity was associated with an increased age at diagnosis (p = 0.002). CONCLUSION: These findings suggest that OSA may present with a higher symptom burden in children with ASD, particularly for children with lower ASD severity, who often experience delays in OSA diagnosis. These findings and their clinical implications merit further explanation.

A Longitudinal RCT of P-ESDM With and Without Parental Mindfulness Based Stress Reduction: Impact on Child Outcomes.

This randomized controlled trial (NCT03889821) examined Mindfulness Based Stress Reduction (MBSR) in conjunction with the Parent-implemented Early Start Denver Model (P-ESDM). A previous report described improved metrics of parental distress (Weitlauf et al. in Pediatrics 145(Supplement 1):S81-S92, 2020). This manuscript examines child outcomes. 63 children with ASD (< 36 months) and their parents received 12 P-ESDM sessions. Half of parents also received MBSR. Longitudinal examination of whole sample means revealed modest improvements in autism severity, cognitive, and adaptive skills. There was not a significant time × group interaction for children whose parents received MBSR. Future work should examine more proximal markers of child or dyadic change to enhance understanding of the impact of providing direct treatment for parents as part of early intervention initiatives.

Transitioning to Telemedicine During COVID-19: Impact on Perceptions and Use of Telemedicine Procedures for the Diagnosis of Autism in Toddlers.

The COVID-19 pandemic has increased the use of telemedicine as an avenue to address the need for diagnostic clarification in young children at risk for autism spectrum disorder (ASD). Although preliminary research has supported the use of telemedicine for identifying ASD in toddlers, little is known about the experiences of practitioners attempting direct-to-home tele-assessment. We surveyed diagnostic providers regarding changes in practice behavior in the initial months of the COVID-19 pandemic and their perceptions of ASD tele-assessment. We also examined the use of the TELE-ASD-PEDS, a novel tool for ASD tele-assessment, in response to COVID-19 at seven sites across the country. Results support the clinical acceptability and diagnostic utility of ASD tele-assessment while also highlighting critical avenues of future investigation.

Utilization of telemedicine to support caregivers of young children with ASD and their Part C service providers: a comparison of intervention outcomes across three models of service delivery.

BACKGROUND: Families of young children with autism spectrum disorder (ASD) frequently experience barriers to accessing evidence-based early intervention services. Telemedicine presents an opportunity to increase access to these services, particularly for families in rural and under-resourced areas. The present article describes a brief behavioral intervention and support model for families of young children with concerns for ASD. In the context of the COVID-19 pandemic, this service model shifted to telemedicine-only service delivery, resulting in an opportunity to analyze intervention outcomes from services delivered either via traditional in-person visits, telemedicine-only sessions, or a hybrid model including both in-person and telemedicine sessions. METHODS: Data are presented for 115 families with toddlers 16-33 months of age who participated in a six-session behavioral intervention and support service model either in-person, through telemedicine, or through a hybrid service model. This intervention was available for families referred for ASD evaluation through the state Part C early intervention program. Intervention feasibility, fidelity of implementation, child outcomes, and stakeholder satisfaction are compared across service delivery models. RESULTS: Caregivers, behavioral consultants, and Part C early intervention providers reported satisfaction with services, regardless of service delivery model. Caregivers and consultants also reported positive child outcomes. Statistically significant differences emerged for caregiver- and consultant-reported child outcomes in some domains, with stakeholders in the telemedicine-only group reporting slightly less improvement, compared to stakeholders in the in-person-only group. Caregivers and consultants in the telemedicine-only group also provided qualitative feedback on benefits and challenges related to telemedicine services. CONCLUSIONS: Both caregivers and behavioral consultants reported positive outcomes following a brief behavioral intervention and support model targeted at families of young children with concern for ASD. Stakeholders reported improvement in child behavior and satisfaction with services across in-person, telemedicine-only, and hybrid models of service delivery. These results suggest that telemedicine presents a promising opportunity for increasing service access. Additional research is needed to continue optimizing the experience of telemedicine-based service delivery for both families and intervention providers.

Design of an Interactive Virtual Reality System, InViRS, for Joint Attention Practice in Autistic Children.

Many children with Autism Spectrum Disorder (ASD) exhibit atypical gaze behaviors related to joint attention, a fundamental social-communication skill. Specifically, children with ASD show differences in the skills of gaze sharing and gaze following. In this work we present a novel virtual reality (VR)-based system, called InViRS, in which children with ASD play games allowing them to practice gaze sharing and gaze following. InViRS has three main design contributions: (i) a closed-loop joint attention paradigm with real-time tracking of the participant's eye gaze and game performance measures, (ii) an assistive feedback mechanism that provides guidance and hints in real time, and (iii) a controller that adaptively changes the avatar's gaze prompts according to the performance measures. Results from a pilot study to evaluate the feasibility of InViRS with 9 autistic1 children and 9 typically developing (TD) children offered preliminary support for the feasibility of successful gameplay as well as positive impacts on the targeted skills of gaze sharing and gaze following.

An Immersive Computer-Mediated Caregiver-Child Interaction System for Young Children With Autism Spectrum Disorder.

Autism Spectrum Disorder (ASD) affects 1 in 54 children in the United States. A core social communication skill negatively impacted by ASD is joint attention (JA), which influences the development of language, cognitive, and social skills from infancy onward. Although several technology-based JA studies have shown potential, they primarily focus on response to joint attention (RJA). The other important component of JA, the initiation of joint attention (IJA), has received less attention from a technology-based intervention perspective. In this work, we present an immersive Computer-mediated Caregiver-Child Interaction (C3I) system to help children with ASD practice IJA skills. C3I is a novel computerized intervention system that integrates a caregiver in the teaching loop, thereby preserving the advantages of both human and computer-administered intervention. A feasibility study with 6 dyads (caregiver-child with ASD) was conducted. A near significant increase with medium effect size on IJA performance was observed. Meanwhile, physiology-based stress analysis showed that C3I did not increase stress of the caregivers over the course of the study. To the best of our knowledge, this is the first autonomous system designed for teaching IJA skills to children with ASD incorporating caregivers within the loop to enhance the potential for generalization in real-world.

Uptake and impact of journaling program on wellbeing of NICU parents.

OBJECTIVE: This pilot study evaluated a brief parent journaling program in the neonatal intensive care unit (NICU). STUDY DESIGN: Hundred NICU parents were randomized to a control group (no journal) or an intervention group (journal provided). Parents reported pre- and post-intervention anxiety and depression symptoms using the hospital anxiety and depression scale (HADS) and qualitative journal use data. The analysis included Student's paired two-tailed t-test and two-way ANOVA. This study was registered with clinicaltrials.gov on April 1, 2020, NCT04331925. RESULT: At baseline, clinically significant anxiety was more prevalent than depression (66% vs. 23%). Post-intervention scores were best predicted by baseline scores. Relative to controls, intervention group parents experienced a decrease in anxiety from baseline (t = -1.983, p = 0.056). The same effect was not seen for depression. Most intervention group parents used the journal and provided positive feedback. CONCLUSION: Journal use rates and positive feedback support the acceptability of a NICU journaling program.

Toward Novel Tools for Autism Identification: Fusing Computational and Clinical Expertise.

Barriers to identifying autism spectrum disorder (ASD) in young children in a timely manner have led to calls for novel screening and assessment strategies. Combining computational methods with clinical expertise presents an opportunity for identifying patterns within large clinical datasets that can inform new assessment paradigms. The present study describes an analytic approach used to identify key features predictive of ASD in young children, drawn from large amounts of data from comprehensive diagnostic evaluations. A team of expert clinicians used these predictive features to design a set of assessment activities allowing for observation of these core behaviors. The resulting brief assessment underlies several novel approaches to the identification of ASD that are the focus of ongoing research.

A Predictive Multimodal Framework to Alert Caregivers of Problem Behaviors for Children with ASD (PreMAC).

Autism Spectrum Disorder (ASD) impacts 1 in 54 children in the US. Two-thirds of children with ASD display problem behavior. If a caregiver can predict that a child is likely to engage in problem behavior, they may be able to take action to minimize that risk. Although experts in Applied Behavior Analysis can offer caregivers recognition and remediation strategies, there are limitations to the extent to which human prediction of problem behavior is possible without the assistance of technology. In this paper, we propose a machine learning-based predictive framework, PreMAC, that uses multimodal signals from precursors of problem behaviors to alert caregivers of impending problem behavior for children with ASD. A multimodal data capture platform, M2P3, was designed to collect multimodal training data for PreMAC. The development of PreMAC integrated a rapid functional analysis, the interview-informed synthesized contingency analysis (IISCA), for collection of training data. A feasibility study with seven 4 to 15-year-old children with ASD was conducted to investigate the tolerability and feasibility of the M2P3 platform and the accuracy of PreMAC. Results indicate that the M2P3 platform was well tolerated by the children and PreMAC could predict precursors of problem behaviors with high prediction accuracies.

Enhancing developmental-behavioral pediatric rotations by teaching residents how to evaluate autism in primary care.

LAY ABSTRACT: Most physician preparation programs do not provide enough practical experiences in autism-related care. This is especially true for how to assess for and diagnose autism. Without this training, many pediatricians are not well prepared to implement appropriate care for children with autism and their families. We designed a curriculum to improve training for medical residents that involved explicit hands-on training in diagnostic identification and care coordination for toddlers at risk for autism. We collected data to assess whether our enhanced curriculum led to increased comfort level across recommended practice behaviors. Almost all the residents were able to complete the training within their rotation and our surveys indicated significant increases in residents feeling more comfortable identifying symptoms of autism, providing feedback about diagnostic decisions, and effectively connecting families with services. A significant majority of residents considered it appropriate or very appropriate for children to receive a diagnosis solely from a primary care provider. Our results suggest feasibility of the enhanced model, and this project reflects the first step in advancing incorporation of autism training into pediatric residency programs.

Parent Perceptions of Caregiver-Mediated Telemedicine Tools for Assessing Autism Risk in Toddlers.

Telemedicine tools have potential for increasing access to diagnostic services for children with autism spectrum disorder (ASD). Past work has utilized tele-assessment procedures in which remote psychologists observe administration of interactive screening instruments by trained, on-site providers. Although promising, this approach relies on two clinicians, limiting its efficiency and scalability. The present study examined the use, acceptability, and parents' perceptions of two caregiver-mediated tools for assessing ASD risk in toddlers, in which remote clinicians guided parents to complete interactive screening activities with their children. Most parents found tele-assessment to be comfortable, and many reported liking the parent-led nature of these tools. Parents also offered constructive feedback, which was used to modify the tele-assessment process for future study.

Design of an Intelligent Agent to Measure Collaboration and Verbal-Communication Skills of Children with Autism Spectrum Disorder in Collaborative Puzzle Games.

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by core deficits in social interaction and communication. Collaborative puzzle games are interactive activities that can be played to foster the collaboration and verbal-communication skills of children with ASD. In this paper, we have designed an intelligent agent that can play collaborative puzzle games with children and verbally communicate with them as if it is another human player. Furthermore, this intelligent agent is also able to automatically measure children's task-performance and verbal-communication behaviors throughout game play. Two preliminary studies were conducted with children with ASD to evaluate the feasibility and performance of the intelligent agent. Results of Study I demonstrated the intelligent agent's ability to play games and communicate with children within the game-playing domain. Results of Study II indicated its potential to measure the communication and collaboration skills of human users.