Supporting the Development of Early Autism Screening Tools
Autism spectrum disorder (ASD) is a developmental disorder that affects social communication and behavior. It is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience. Reliably detecting autism in young children is difficult, and the average age of diagnosis for ASD is around four years of age. Research has shown that early intervention is key for improving the cognitive and behavioral outcomes of young children with ASD. As such, delays in diagnosis can have profound and long-lasting effects on children.
Because early treatment is so critical for children with ASD, efforts have been made to try to reduce the age of diagnosis by universally screening all children for signs of autism. Children who are found to be at high risk for developing autism can then be connected with intervention services as soon as possible. Currently, well-validated instruments exist to screen toddlers for ASD risk between 18 and 24 months of age. However, there is evidence that many infants at risk for ASD show differences in the way social attention and early forms of communication develop over the first year of life — presenting the possibility that ASD risk might be detected even earlier and allowing for enhanced monitoring and intervention at the earliest signs.
To help support the goal of identifying autism in the first year of life, the National Institute of Mental Health (NIMH) — along with the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, and the National Institute on Deafness and Other Communication Disorders — awarded more than four million dollars in FY 2019 to support seven research projects aimed at developing and validating screening tools to detect signs of ASD before the age of 12 months. A total of approximately 19 million dollars is projected to be awarded over the duration of the funded projects. The seven funded projects seek to translate findings related to early-emerging signs of autism in the first year of life into practical ASD screening tools that can be implemented in the general population and community settings.
- Geraldine Dawson, Ph.D., of Duke University is leading a project to develop and validate a novel screening tool, called SenseToKnow, for use at 6, 9, and 12 months of age in a primary care setting. This tool aims to identify risk for ASD in infants based on patterns of attention, orienting, affect, vocalizations, and motor behavior.
- Warren Jones, Ph.D., of Emory University, is leading a project to measure the ability of an eye-tracking-based assessment of social visual engagement performed during 9-month well-child visits to screen for ASD and other actionable developmental delays.
- Sally Ozonoff, Ph.D., of the University of California at Davis, is leading a project to validate the Video-referenced Infant Rating System for Autism (VIRSA) at 6, 9, 12, and 18 months of age. VIRSA is a brief web-based instrument that utilizes video depictions rather than written descriptions of behavior to detect signs of ASD.
- Meagan Ruth Talbott, Ph.D., of the University of California at Davis, is leading a study that aims to develop a telehealth screener to assess early ASD symptoms in infants 6-12 months of age, in order to improve families' access to specialized screening and decrease the significant wait time for an expert evaluation.
- Robert Thomas Schultz, Ph.D., of Children’s Hospital of Philadelphia, is leading a project that tests a new method of screening for ASD in infants at 12 months of age by detecting alterations in the dynamic social coordination between infants and caregivers during brief, play-based interactions.
- Stephen Sheinkopf, Ph.D., of Women and Infants Hospital — Rhode Island, is leading a project to develop and validate a novel ASD screening tool that analyzes features of neonatal cry and neurobehavior that preliminary evidence has shown may be atypical in infants at risk for autism. They will follow up with the children at 6, 12, 24, and 36 months of age to determine whether newborn cry acoustic patterns are associated with early risk for ASD.
- Amy Wetherby, Ph.D., of Florida State University, is leading a project to validate the effectiveness of a new automated online screening tool — the Social Communication (SoCo) CheckUp — to screen for communication delay and autism at well-child visits at 9, 12, 15, 18, 21, and 24 months of age.
The goal of these seven projects is to help develop and validate measures that can be used to detect autism risk earlier in life with the goal of providing intervention as soon as possible so that outcomes for each child can be maximized.