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A prospective multicenter study found that trained developmental-behavioral pediatricians (DBPs) can generally diagnose autism in young children without the need for the Autism Diagnostic Observation Schedule (ADOS). Children’s Hospital Los Angeles researcher Douglas Vanderbilt, MD, MS, was a principal site investigator in the nine-institution diagnostic study led by Boston Children’s Hospital. The study compared clinical diagnoses of autism spectrum disorder (ASD) in over 300 young children by DBPs, finding that diagnoses by DBPs aligned with the test in the vast majority of cases and suggesting that ADOS is not necessary to diagnose autism in young children—findings which could potentially lead to cost savings and expanded access to treatment. The study, sponsored by the Developmental Behavioral Pediatrics Research Network (DBPNet) of which CHLA is one of 16 participating sites, was published in JAMA Pediatrics on October 17, 2022.
In the study of 346 children between 18 months and 5 years of age, DBPs first made a diagnosis based on a clinical assessment, then a specially trained clinician administered the ADOS, the results which were shared with the DBP who could then revise their diagnosis. Clinical diagnoses of autism spectrum disorder by DBPs were consistent with the diagnoses that included the ADOS in 90% (314 children) of cases.
DBPs generally have three years of general pediatric training and an additional three years of a developmental behavioral pediatric fellowship. The ADOS can be administered by a variety of disciplines and evaluates communication skills, social interaction, and imaginative use of materials. It is required by an increasing number of insurance companies, as well as state and federal agencies to approve reimbursement for therapy. The ADOS can take about 45 minutes or more to administer, and then additional time to interpret the results and write a report. Testing can cost as much as several hundred dollars.
The ADOS was developed in the 1980s as a research tool. Through semi-structured observations, specially trained evaluators assess children’s communication skills, social interaction, and imaginative use of materials. “The ADOS was never designed to be used in the clinic,” says William Barbaresi, MD, the study’s principal investigator and chief of the Division of Developmental Medicine at Boston Children’s. “But currently, ADOS testing is often required for young children to receive an ASD diagnosis that is accepted by early intervention agencies, schools, and insurers. This study shows that in the majority of cases, young children may be able to have a diagnostic evaluation for ASD by a developmental-behavioral pediatrician without using the ADOS. The requirement for ADOS testing has become a barrier to timely diagnosis and initiation of treatment. Young children can wait months or even years for an assessment, making it difficult for them to access intensive early intervention services when they are most effective.”
At CHLA, autism assessments are done at the Boone Fetter Clinic for Autism Treatment or at the Developmental and Behavioral Health Center clinics. Due to the time-consuming testing process required for insurance coverage, teams in the Boone Fetter clinic can currently only test about three patients a day.
“We could potentially create different practice guidelines to improve care,” says Dr. Vanderbilt, Division Chief, Developmental Behavioral Pediatrics and Medical Director at CHLA. “If there was less testing required, we could potentially do a lot more autism diagnostic work within our primary care environment in the developmental pediatric clinics and expedite the way we are doing autism diagnoses. This study showed, that in fact, when our certainty is high, we actually can be the ones that decide whether or not an intervention is required, rather than a tool that was intended for nonclinical use.”
In California, policies governing the age for treatment access and reimbursement have lagged behind accumulating evidence that starting treatment earlier leads to better outcomes. Currently, an autism diagnosis in California can be obtained either through the medical system, paid for by private insurance, or through the State of California-supported Regional Centers, which are legally mandated by the Lanterman Developmental Disabilities Services Act to provide autism diagnostic services for children starting at three years of age. “What we know is that kids can be identified as early as 18 months, which means we are missing the opportunity for almost a year and a half of interventions,” says Dr. Vanderbilt, Professor of Clinical Pediatrics (Educational Scholar), Keck School of Medicine of USC. Dr. Vanderbilt notes that while public schools often defer the diagnosis of autism to the other systems of care, sometimes they will conduct the psycho-diagnostic testing necessary to identify or confirm a potential diagnosis, but only starting at age three.
By establishing evidence for best practices, Dr. Vanderbilt and his colleagues are making a case for the California Regional Center Early Start program to diagnose autism earlier. He is also developing professional training for DBPs as director of the California Leadership Education in Neurodevelopmental and Related Disabilities (CA-LEND) Fellowship Program. “If you want to have a system that actually changes the trajectory for these kids, you would have the Regional Center system being able to do autism diagnostics earlier than three years of age or allow the medical system to be able to have more flexibility in diagnosing,” says Dr. Vanderbilt. “The longer you wait, the less likely you can bring in specific interventions for kids. Anything that creates barriers, creates a delay in intervention,” adds Dr. Vanderbilt. “That's what this is about; to push against this reliance on a research tool for autism diagnostics that limits the ability to get the diagnosis and to get interventions.”