Although we now have the tools and expertise to diagnose autism spectrum disorders (ASD) reliably in the 2nd year of life, most children are still diagnosed after their 4th birthday and, in under-resourced, ethnically diverse communities, as late as 8 years of age. These gaps highlight our failure to translate state-of-the art screening and diagnostic practices into practical solutions for identifying the most vulnerable children across socioeconomic strata. This disconnect is highly concerning given that early implementation of treatment leads to more positive outcomes. Factors contributing to the gaps include the limited awareness of early signs of ASD amongst parents and professionals, limited feasibility of deploying traditional paper-and-pencil screeners in primary care centers, and difficulties accessing appropriate services. In low-resource communities, these problems are further compounded by lack of supportive environments and language and literacy issues. This study aims to pilot a solution to surmount some of these challenges through the development of a new generation, tablet-based screening system comprised of two parts: (1) A novel video-based screener (Yale Adaptive Multimedia Screener, YAMS) based on early syndrome expression data collected over a decade at the Yale Toddler Developmental Disabilities Clinic (YTDDC) (Aim 1). By using simple spoken language, this screener will circumvent literacy-related issues. By providing visual examples, it will add clarity to concepts that may be complex for new parents. The screener will be adaptive, with questions contingent on prior responses, thus maintaining diagnostic precision within a time-efficient system highly acceptable by parents and staff; (2) Digital implementation of the M-CHAT-R/F, with automatic scoring for increased efficiency and with high-level interpretations and recommendations to increase physician utility. This adaptation will provide an established measure to augment our research goals and to serve as a comparison system for the YAMS (Aim 3). To gauge the utility and feasibility of our approach (Aim 2), we will test YAMS through collaborations with community primary care centers serving low-resource and ethnically diverse populations. 200 parents will be recruited to participate at their child's 18- or 24-month well-care visit. All who screen positive on the M-CHAT- R/F and/or our YAMS (N~20) will be invited for expert follow-up assessment at the YTDDC. Data from this community screening sample will be augmented by a clinic-based sample of 18-24 month-old toddlers with diagnoses of ASD (N=70), developmental delay (DD, N=20), or typical development (N=70). The combination of these two samples will provide preliminary validation of the usability, utility, and potential of our screener. Our study represens a cohesive, unified approach that leverages the full capabilities of modern, low-cost, hand-held technologies to move us towards the goal of early universal screening for ASD. Our unique focus combines attention to not just the development of the screening system itself, but also the usability of the system in diverse settings and the integration of the screener as a facilitating agent of the clinical care process.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
