Diana L. Robins, Ph.D. - US grants

psychometrics; autism; mass screening; early diagnosis; preschool child (1-5); child psychology; behavioral /social science research tag; human subject; clinical research;

DESCRIPTION (provided by applicant): Early detection and intervention for children with ASD leads to better outcomes (e.g., Dawson et al., 2010). Intervention depends on accurate identification; therefore, early screening and diagnosis are crucial (Filipek et al., 1999). The Modified Checklist for Autism in Toddlers (M-CHAT) has become the most widely used early autism screening tool for children 16-30 mos. However, though the M-CHAT and other screening instruments have been available for 10 years or more, and universal screening has been endorsed by national organizations, the median age of ASD diagnosis in the U.S. is still four years or older. Children diagnosed at four years or later miss the possibility of crucial earl intervention. Furthermore, no screener can detect every child; therefore, physician surveillance of children's development, which involves integrating behavioral observation with screening, parent concern, and history information, is essential. Therefore, although a strong screening tool is necessary for effective screening, it is not sufficient on its own. Effective screening policies must consider issues such as when screening should occur, how best to implement screening in the context of ongoing developmental surveillance, and what child, family, physician, and practice factors influence the success of screening and surveillance. The proposed study builds on the seminal M-CHAT work, which did the foundational work for an effective screener. This study will investigate three key questions: (1) what is the best age to initiate screening (12, 15, or 18 mos)? (2) Can accuracy of physician surveillance be improved with a brief, focused intervention? (3) What are the factors associated with disparity in effective ASD screening and surveillance at the child/family level (e.g., race/ethnicity, socioeconomic status, sex) and at the physician/practice level (physician beliefs and self-efficacy, practice location, and patient demographics)? With a total of 12,000 toddlers screened for ASD, this study will examine how the variables in these three aims influence age and accuracy of ASD detection, allowing this team to identify targets for future intervention to reduce disparities and facilitate early and accurate diagnosis for all children. Much of the work done in early ASD screening comes from the team assembled for this proposed study, and the large sample of children from diverse geographic areas will make these results immediately generalizable. The proposed study will answer key remaining questions about early ASD screening, thereby impacting the early health monitoring of children across the nation, and helping ensure that the promise of early ASD detection can become a reality.

A growing body of evidence demonstrates that younger age of onset for ASD treatment improves outcomes. Universal toddler screening for autism spectrum disorder (ASD) has been shown to lower the age of ASD diagnosis by two years compared to the national median; this in turn lowers the age of access to ASD-specific treatment. Yet on February 17, 2016, the US Preventive Services Task Force (USPSTF) published a final statement on autism screening in JAMA, in which they found insufficient evidence to recommend universal ASD screening. One of the primary gaps they identified was a lack of randomized controlled trials (RCTs) in which children detected through screening received treatment for ASD, with their outcomes compared to those of children not screened. The current proposal aims to fill this gap, connecting the dots between the screening and treatment literatures, and demonstrating that standardized, high-fidelity, universal screening lowers the age of diagnosis and treatment onset, leading to improved short- and long-term outcomes. The intervention in this RCT is supported deployment of such screening, with immediate evaluation of at-risk children, compared to a control group receiving usual care approaches to early detection of ASD, namely physician surveillance and/or unstandardized screening. In a sample of 8,000 toddlers enrolled through participating pediatric practices near Drexel University, the University of Connecticut, and the University of California Davis MIND Institute, we expect that cognitive functioning and ASD symptom severity will show greater improvements in the experimental group, in which most children will be detected at 18 m screening, compared to the control group, in which children are expected to be detected significantly later. In both groups, missed ASD cases will be detected through screening at 48 m. Across both groups, all children identified as at risk for ASD will receive a diagnostic evaluation, and all children diagnosed with ASD will be enrolled in one year of manualized early intensive behavioral treatment (EIBI). In addition to the primary outcome measures of cognition and symptom severity, exploratory outcomes will include group differences in adaptive functioning, kindergarten readiness, and social reciprocity as measured by experimental eye tracking and parent-child interaction ratings. We also will examine the impact of the screening intervention on physician attitudes and on parent empowerment and stress. Finally, we will examine potential moderators of group differences, to determine whether initial symptom severity, cognitive ability, or SES affects the expected superior response to treatment in the experimental group. Our Autism Centers of Excellence Network is uniquely positioned to carry out this study; our prior work demonstrates our extensive experience and productivity in the field of early screening and treatment in ASD. This study will be the first RCT of toddler ASD screening, and will use rigorous methods that have provided evidence for universal screening protocols in other medical fields. This study will have a significant impact on science, policy, and practice. By demonstrating that universal early screening leads to earlier treatment and better outcomes, this project will provide evidence for the benefits of universal ASD screening, including better social and cognitive functioning, mitigating lifespan disability, reducing societal costs, and improving personal well-being and productivity of individuals with ASD.

On average, diagnoses of autism spectrum disorder (ASD) occur after the fourth birthday, missing critical early intervention opportunities. Many children with ASD are referred to state early intervention agencies for possible developmental delay, but unless their ASD is identified, intervention services are generally low intensity and not specific to their core ASD symptoms. However, implementation of screening to detect ASD poses considerable logistical challenges. This can result in inaccurate or altered administration, which may hinder successful detection. While the importance of accurate and reliable early detection procedures in the ASD field is widely acknowledged, no study thus far has examined the issue of procedural fidelity (i.e., adherence to the prescribed protocol) in ASD screening. Another critical research gap concerns the proximal outcomes of ASD early detection procedures, such as how screening results relate to autism referrals and specific intervention services. As the ultimate goal of early screening is to facilitate timely access to appropriate intervention programs, it is critically important to examine the rates of referral and uptake of services for children who screen positive. The proposed project aims to address these critical gaps and increase scientific knowledge, focusing on the implementation of the Modified Checklist for Autism in Toddlers Revised with Follow-up (M-CHAT-R/F) in the context of a large urban high-risk preschool sample. Most research using the M-CHAT and the M-CHAT-R/F screened children during pediatric well-child check-ups (e.g., Chlebowski et al., 2013), although several studies have examined the performance of the tool with high-risk toddlers and preschoolers (e.g., Charman et al., 2015; Snow & Lecavalier, 2008). Overall, sensitivity is adequate when the M-CHAT is administered to samples of preschoolers at risk for developmental delay, although specificity ranges from poor to adequate. In order to test the study research questions we will extract intake, multidisciplinary evaluation (MDE), and service/placement data from Elwyn Special Education for Early Developmental Success (SEEDS), the agency providing intervention services to children age 3-5 in Philadelphia County, PA. SEEDS estimates that 5,000 children were screened January-December 2015. The first aim will examine the procedural fidelity of the M-CHAT-R/F implementation, by examining accuracy and completion data over time. Both inaccurate and missing data will be examined for barriers and biases. The second aim will examine the proximal outcomes of screening, namely the relationship between M-CHAT-R/F scores and MDE results, autism evaluation results, and services and placements offered to children in the SEEDS program. This study will be the first to examine fidelity of screening procedures in a high-risk setting. Identification of barriers or systematic bias may inform alternate approaches to more successful screening, improving care of children with ASD. This study also uses a novel approach to relate screening results to proximal outcomes, which will increase understanding of the role of screening in early intervention agencies.