Parents of children with autism spectrum disorder (ASD) often report that their first concerns emerged before their child’s second birthday. Despite this, the average age of diagnosis in the United States remains more than 4 years of age, revealing a wide gap between parent recognition and formal diagnosis. In partnership with parents, pediatric primary care providers can help close this gap, serving as the first line of defense in detecting early developmental concerns.
Given that most children receive regular PCP visits during the first few years of life, primary care is an ideal setting to screen for ASD. Pediatricians are experts at identifying delays in physical, motor, and language development. However, Children’s Hospital of Philadelphia researchers have found that signs of ASD are more difficult for even ASD experts to accurately observe during short behavioral observations, such as those that pediatricians conduct during brief well-child visits. Instead, formal screening tools that help identify these subtle signs have been developed to solve this dilemma.
The American Academy of Pediatrics (AAP) recommends pediatricians use one of several formal screening tools to conduct universal ASD screening of all children at 18 and 24 months. (The AAP upheld this recommendation in 2015 when the US Preventive Services Task Force reported that there may not be sufficient evidence to support universal screening at this time.)
CHOP has led the way in following the AAP recommendation by implementing universal screening for ASD in CHOP Care Network sites. Before all 18- and 24-month well visits, parents are asked to complete the most widely used and well-validated tool, the Modified Checklist for Autism in Toddlers (M-CHAT). Pediatric providers then view results of this screening in the child’s electronic health records (EHR) during the well visit. The goal was to make the process of systematic ASD screening and referral for formal evaluation and early intervention as easy as possible for busy providers. More than 25,000 screenings took place last year in our Care Network.
Universal screening provides CHOP researchers with the unique opportunity to study one of the largest samples of children screened for ASD in a primary care setting (rather than a research lab) and followed prospectively using EHRs. At the Center for Autism Research, we aim to understand how well screening works and how to improve it for children who are not accurately identified by our early screening efforts. We are also working on ways to leverage emerging technologies, such as smartphone apps, to improve screening accuracy. The goal is to integrate parent report and behavioral observations in settings outside of the pediatrician’s office, re-emphasizing the importance of the partnership between parents and providers to identify all children with ASD as early as possible.
References and further readings
Johnson CP, Myers SM. Identification and evaluation of children with autism spectrum disorders. Pediatrics. 2007;120(5), 1183-1215.
Gabrielsen TP, Farley M, Speer L, et al. Identifying autism in a brief observation. Pediatrics, 2015;135(2):e330-e338.
Jenco M. Academy calls for continued autism screening, despite USPSTF recommendation. AAP News website. Accessed May 23, 2017.
Pandey J. Detecting Autism in the very young: the tell-tale signs of babbling, crying, and trunk control. Medscape website. March 27, 2017. Accessed June 8, 2017.
Scudder L, Mandell D, Pandey J. Autism in little kids: the arguments for universal screening. Medscape website. September 21, 2015. Accessed June 8, 2017.
Contributed by: Whitney Guthrie, PhD