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.

Enhancing Diagnostic Follow-up and Care Coordination for Children with Autism in a Busy Resident Continuity Clinic: Leveraging the Electronic Health Record.

PURPOSE: A high-quality primary care clinic should provide clear action points and important care coordination for a child receiving a new diagnosis of autism spectrum disorder (ASD). Unfortunately, a substantial proportion of caregivers report little-to-no post-diagnosis support from their home clinics and primary care providers often report lack of training and resources in providing these supports. METHODS: We implemented an intervention package to investigate the impact on the frequency and quality of follow-up care for children with ASD in a busy, high-volume resident continuity clinic. The package consisted of a care coordination scheduling pathway and a standardized clinical template-embedded in the electronic health record (EHR)-that guided providers through best-practice recommendations and patient resources. RESULTS: As a result of these interventions, 74% of patients had ASD-specific follow-up, a more than threefold increase from baseline with a majority of providers using the EHR-embedded template to guide their visit. Providers also indicated a high degree of usability for the system and that it aided them in following best-practice guidelines for ASD care. CONCLUSION: Through explicit scheduling pathways and a novel EHR template, we saw a significant increase in ASD-specific follow-up visits and implementation of best practices for ASD care, demonstrating a new process for training and engaging primary care providers in clear action steps for post-diagnostic care without having to rely on tertiary referrals.

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.

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.

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.

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.

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.

Use of the TELE-ASD-PEDS for Autism Evaluations in Response to COVID-19: Preliminary Outcomes and Clinician Acceptability.

The COVID-19 pandemic has caused unprecedented disruptions to healthcare, including direct impacts on service delivery related to autism spectrum disorder (ASD). Caregiver-mediated tele-assessment offers an opportunity to continue services while adhering to social distancing guidelines. The present study describes a model of tele-assessment for ASD in young children, implemented in direct response to disruptions in care caused by the COVID-19 pandemic. We present preliminary data on the outcomes and provider perceptions of tele-assessments, together with several lessons learned during the period of initial implementation.

Increasing Access to Autism Spectrum Disorder Diagnostic Consultation in Rural and Underserved Communities: Streamlined Evaluation Within Primary Care.

OBJECTIVE: Preliminary feasibility and clinical utility research has demonstrated that implementation of a streamlined diagnostic model embedded within primary care (PC) clinics promotes early identification of young children with autism spectrum disorder (ASD). Use of this model results in dramatically reduced waits for diagnostic consultation, high levels of family/provider satisfaction, and reductions in referrals to overtaxed tertiary diagnostic centers. The current study extends this work by providing data before/after implementation of a streamlined model across a diverse range of PC clinics that provide health care to rural and underserved communities. METHODS: The streamlined assessment involved record/history review, diagnostic interview, standard rating scales, and an interactive screening tool. Eighty children between the ages of 19 and 47 months were seen across 5 different clinics. Data were collected through chart review. RESULTS: Implementation of streamlined model resulted in a significant decrease in latency to diagnostic conclusion from a mean of 144.7 to 49.9 days. Children were likely to experience a greater reduction in wait times if they were a PC patient versus a non-PC patient. CONCLUSION: Results show significant reduction in wait times for ASD diagnostic decisions across both PC and non-PC patients. By reducing waits and identifying concerns more efficiently, we may increase the ability of families to access early intervention and support services.

Decreasing disruptive behaviour during routine dental visits: a video modelling intervention for young children.

OBJECTIVE: To evaluate the benefits of a collaborative partnership between paediatric dentists and behavioural health providers in which a practical video modelling intervention, with the aim to reduce disruptive behaviours in young children, is implemented. METHODS: The video was created by a dentist using readily available technology and implemented in a busy practice setting. A clinical sample of 40 children, 3-6 years old, was recruited from a continuous sample of patients seen at the clinic. Participants were randomised into two groups and shown either the brief video model or a control video prior to a routine dental visit. All sessions were videotaped and independently scored by blinded observers. Behavioural data were recorded using 15-second partial-interval recording and included physical and vocal disruptions. Subjective measures of cooperation were also completed by observers and dental professionals. RESULTS: Independent samples t-tests show that the treatment group had a significantly lower mean percentage of intervals in which disruptive behaviour was observed [t(38) = 2.94, P = 0.008] compared with the control group. Subjective rating scales revealed significantly higher ratings of cooperation for the treatment group from the dentist [t(38) = -5.19, P = 0.000], the dental assistant [t(38) = -4.01, P = 0.001] and the blinded coder [t(38) = -3.54, P = 0.002]. Significant relationships were found between the percentage of actual disruptive behaviour and subjective ratings of the dentist (r = -0.82, P < 0.01). CONCLUSIONS: Watching a brief dentist-created video model of expected procedures can reduce disruptive behaviour and increase cooperation for young children making their first visit to a busy medical setting.

Measuring the service system impact of a novel telediagnostic service program for young children with autism spectrum disorder.

As prevalence of autism spectrum disorder continues to increase, so too does the need for timely, accessible diagnostic consultation. The present work extends from a previous study which provided preliminary evidence for the feasibility of expert clinicians to utilize telemedicine to triage autism spectrum disorder risk in young children. However, it did not examine whether a telediagnostic model had a demonstrable impact on tertiary care center referrals and usage. We therefore examined whether the introduction of telemedicine-based diagnostic consultation for families served by a rural medical facility affected referrals overall as well as to a metropolitan tertiary care diagnostic center. Results suggest that telemedicine diagnostic consultation in partnership with a referring early intervention system may positively impact referrals for diagnostic evaluation as well as the ability of families to schedule and attend appointments.

Early Identification of ASD Through Telemedicine: Potential Value for Underserved Populations.

Increasing access to diagnostic services is crucial for identifying ASD in young children. We therefore evaluated a telemedicine assessment procedure. First, we compared telediagnostic accuracy to blinded gold-standard evaluations (n = 20). ASD cases identified via telemedicine were confirmed by in-person evaluation. However, 20% of children diagnosed with ASD in-person were not diagnosed via telemedicine. Second, we evaluated telediagnostic feasibility and acceptability in a rural catchment. Children (n = 45) and caregivers completed the telemedicine procedure and provided feedback. Families indicated high levels of satisfaction. Remote diagnostic clinicians diagnosed 62% of children with ASD, but did not feel capable of ruling-in or out ASD in 13% of cases. Findings support preliminary feasibility, accuracy, and clinical utility of telemedicine-based assessment of ASD for young children.

Embedding Autism Spectrum Disorder Diagnosis Within the Medical Home: Decreasing Wait Times Through Streamlined Assessment.

Long waits for diagnostic assessment prevent early identification of children suspected of having autism spectrum disorder. We evaluated the benefit of embedded diagnostic consultation within primary care clinics. Using a streamlined diagnostic model, 119 children with concerns for autism spectrum disorder were seen over 14 months. Diagnostic clarity was determined through streamlined assessment for 59% of the children, while others required follow-up. Latency from first concern to diagnosis was 55 days and median age at diagnosis was 32 months: considerably lower than national averages or comparable tertiary clinics. Findings support that embedded processes for effective triage and diagnosis within the medical home is a viable mechanism for efficient access to diagnostic services and assists in bypassing a common barrier to specialized services.

Physician Satisfaction With Integrated Behavioral Health in Pediatric Primary Care.

As the benefits of integrated behavioral health care services are becoming more widely recognized, this study investigated physician satisfaction with ongoing integrated psychology services in pediatric primary care clinics. Data were collected across 5 urban and 6 rural clinics and demonstrated the specific factors that physicians view as assets to having efficient access to a pediatric behavioral health practitioner. Results indicated significant satisfaction related to quality and continuity of care and improved access to services. Such models of care may increase access to care and reduce other service barriers encountered by individuals and their families with behavioral health concerns (ie, those who otherwise would seek services through referrals to traditional tertiary care facilities).

Phone Consultation for Behavioral Health-Related Referrals in Integrated Primary Care.

Behavioral health (BH) providers add value to primary care teams. This descriptive study illustrates one such role that the BH provider can serve. The on-site BH provider responded to patient phone inquiries regarding BH topics for pediatricians over the course of 15 months. The majority of these calls were for children 10 years and younger and related to externalizing problems. Phone calls were relatively brief (i.e., 11-15 minutes). More than half of these phone calls resulted in families scheduling an appointment with nearly 75% showing up for the initial session. Providing this type of adjunctive service may result in earlier access to care and efficiently assigning responsibilities to the appropriate team member.

Decreasing transition times in elementary school classrooms: Using computer-assisted instruction to automate intervention components.

Research suggests that students spend a substantial amount of time transitioning between classroom activities, which may reduce time spent academically engaged. This study used an ABAB design to evaluate the effects of a computer-assisted intervention that automated intervention components previously shown to decrease transition times. We examined the effects of the intervention on the latency to on-task behavior of 4 students in 2 classrooms. Data also were collected on students' on-task behavior during activities and teachers' use of prompts and praise statements. Implementation of the intervention substantially decreased students' latencies to on-task behavior and increased on-task behavior overall. Further, the 2 teachers used fewer prompts to cue students to transition and stay on task and provided more praise during intervention phases. We discuss how automating classroom interventions may affect student and teacher behavior as well as how it may increase procedural fidelity.

A Methodological Discussion of Caffeine Research and Animal Avoidance Behavior.

Introduction: We present a review of the methodological aspects of caffeine research within animal tests of escape and avoidance behavior in the presence of aversive stimuli. Method: We highlight species, methods of caffeine administration, dosage, dependent measures, and research designs commonly used in this research. Results: Typical subjects were rodents and zebrafish, with species-specific vehicles of caffeine administration and dependent measures. Behavioral tests for escape and avoidance as a function of caffeine consumption were conceptually similar across species, although the arrangement of measures was necessarily adapted to the physiological contingencies of the different species. Discussion and Conclusions: Caffeine administration preceding the presentation of aversive stimuli generally, but not exclusively, enhanced the effect of escape and avoidance of aversive stimuli. The many commonalities in methods and results across species suggest similar methods may be relevant to human subjects as well.

Functional analysis in public schools: a summary of 90 functional analyses.

Several review and epidemiological studies have been conducted over recent years to inform behavior analysts of functional analysis outcomes. None to date have closely examined demographic and clinical data for functional analyses conducted exclusively in public school settings. The current paper presents a data-based summary of 90 functional analyses conducted in public school settings from 2006 through 2009 for 69 students. Specifically, we present data on gender, age, race, diagnosis, topography of target behaviors, number of conditions, duration of sessions, duration of analysis, functional outcomes, setting, and person serving the role of therapist. Results suggest that functional analyses in schools are possible, practical, and produce results that are comparable to those in past research.