Kids

Are ADOS Tests Necessary to Diagnose Autism?

A young child undergoing an autism assessment with a trained observer, who shows them a picture of the letter
In a multisite study, developmental behavior pediatricians were able to diagnose most cases of autism in young children without ADOS testing (Image: AdobeStock).

The Autism Diagnostic Observation Schedule, or ADOS testing, was developed in the 1980s as a tool for autism research. Through a series of semi-structured observations, trained raters assess children’s communication skills, social interaction, and imaginative use of materials.

But over time, ADOS is considered the gold standard for a clinical diagnosis of autism spectrum disorder (ASD). And that has unintentionally delayed care for many children. The time-consuming test adds cost to the diagnostic process and there is a shortage of people trained to administer it.

“The ADOS was never designed to be used in the clinic,” said William Barbaresi, MD, chief of the Division of Developmental Medicine at Boston Children’s Hospital. “Young children may wait months or even years for an assessment to diagnose ASD. That makes it difficult for them to access intensive early intervention services when they are most effective, ideally from around 24 months of age. If the ADOS is needed for diagnosis, it becomes an additional barrier due to the time and training required.”

Now a multicenter study led by Boston Children’s through the national Developmental and Behavioral Pediatrics Research Network (DBPNet) is pushing back. It finds that trained pediatricians in developmental behavior can almost always diagnose ASD in young children without ADOS testing. Barbaresi, the study’s lead investigator, hopes it will convince intervention agencies, schools and insurers to drop their requirement for the ADOS when a diagnosis is made by a trained expert.

Putting ADOS testing to the test

The study, published last month in JAMA Pediatrics, was sponsored by DBPNet and funded by the U.S. Maternal and Child Health Bureau. It involved 349 children from 18 months to 5 years old who were seen in one of the nine academic child care centres.

Developmental Behavioral Pediatricians (DBPs) first diagnosed the children based on their clinical assessment. A specially trained clinician then administered the ADOS. Results were shared with the DBP, who could then review their diagnosis.

The ADOS was never designed for clinical use. If the ADOS is needed for the diagnosis, it becomes an additional barrier due to the time and training required.

In 90 percent of cases, the diagnosis, including the ADOS, matched the original clinical diagnosis. Consistency was greatest when the clinician felt very confident in his original diagnosis.

“All in all, this study is good news,” says Barbaresi. “We believe it has the potential to change practice by reducing wait times for diagnostic evaluations so that children can receive early, intensive treatment for ASD.”

Removing a barrier to early intervention

The researchers hope their findings will spur a national effort to convince insurers and educational institutions to change the requirements for ASD assessments. In the meantime, pediatric practices should feel comfortable relying on DBPs’ clinical judgment to refer young children for autism interventions unless the ADOS is required for insurance or other reasons, Barbaresi says.

The other DBPNet centers participating in the study were Children’s Hospital of Philadelphia, Children’s Hospital Colorado, University of Arkansas for Medical Sciences, University of California-Davis, Children’s Hospital Los Angeles, Hospital of St. John of God (Linz, Austria) , Rainbow Babies and Children’s Hospital (Cleveland, Ohio), and Montefiore Children’s Hospital (Bronx, NY).

Learn more about the Developmental Research Program and Laboratories of Cognitive Neuroscience at Boston Children’s.

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