Expert Panel Withholds Support for Early Autism ScreeningAugust 12, 2015
For years experts have urged physicians to screen infants and toddlers for autism in order to begin treatment as early as possible. But now an influential panel of experts has concluded there is not enough evidence to recommend universal autism screening of young children.
The findings, from a draft proposal by the U.S. Preventive Services Task Force published Monday, are already causing consternation among specialists who work with autistic children.
“I was in a meeting when I read this, and I started feeling like I’d have chest pain,” said Dr. Susan E. Levy, a pediatrician who helped write the American Academy of Pediatrics guidelines urging universal screening of all babies, with standardized screening tools at both 18 and 24 months. “I would hate to see people stop screening.”
Dr. David Grossman, a pediatrician and vice chairman of the U.S. Preventive Services Task Force, emphasized that the panel’s draft proposal was a call for more research and not intended to change practices. About half of all pediatricians routinely screen toddlers for autism.
“This doesn’t mean ‘don’t screen.’ ” Dr. Grossman said. “It means there is not enough evidence to make a recommendation.”
Dr. Grossman also noted that the panel’s conclusion applied only to routine screening of healthy children without symptoms. A child displaying symptoms associated with autism should always be evaluated, he said.
“If a parent comes in and says, ‘My child isn’t looking at me,’ that’s not a screening,” Dr. Grossman said. “You hear that as a doctor and you say, ‘That needs to be looked at,’ and you embark on a series of tests.”
Despite those reassurances, autism experts worry that the panel’s lack of support for early autism screening could undermine efforts to identify and treat children as early as possible. The task force is an independent panel of experts in prevention and primary care appointed by the federal Department of Health and Human Services. The task force wields enormous influence in the medical community. In 2009, the panel issued controversial screening guidelines for breast cancer, stating that routine mammograms should start at 50 rather than 40.
The review is a draft that is open to public comments for 30 days.
One in every 68 children has an autism spectrum disorder, according to the Centers for Disease Control and Prevention. About half of all children are diagnosed after the age of 4 years and 5 months. Many researchers say they would like to see children diagnosed earlier.
Diana Robins, who developed a common screening tool for autism, said the review’s authors simply failed to “connect the dots.”
“We have a growing body of literature that kids who start treatment earlier tend to have the biggest improvement, and we know that screening detects it earlier,” said Dr. Robins, an associate professor at the A.J. Drexel Autism Institute and leader of the program area in early detection and intervention for A.S.D. “The dots are all there. Just connect them.”
Waiting until children display overt signs of autism spectrum disorders before screening means “you miss an opportunity to nip it in the bud,” Dr. Robins said.
The most common screening tool for toddlers is a 20-item questionnaire that parents fill out while in a doctor’s waiting room before a well visit. Questions include: “Does your child respond when you call his or her name?” “When you smile at your child, does he or she smile back at you?” “If you point at something across the room, does your child look at it?”
Among children who screen positive, about half are diagnosed with an autism spectrum disorder, and the vast majority of the others are at high risk for having another developmental disorder or delay.
The task force determined that screening tools do identify children with autism at young ages. The panel also agreed that studies show early intensive intervention leads to significant improvements in cognitive and language outcomes in some children, though not all.
What’s missing, Dr. Grossman said, are studies evaluating the long-term outcomes of children who were identified at a very young age through universal screening. The studies of treatment outcomes focus on children with severe symptoms rather than children with more subtle symptoms identified through screening, he said.
While several researchers acknowledge that there are gaps in the research, they are concerned that the review gives short shrift to the progress that children can make if they get access to early intervention during a critical “window of opportunity” between the ages of 2 and 5.
Fred Volkmar, of the Yale University School of Medicine’s Child Study Center and editor in chief of the Journal of Autism and Developmental Disorders, said screening was needed because parents could easily miss the early warning signs of autism in very young children. “It’s like saying, ‘Don’t do routine maintenance on your car until you hear something go clunk, clunk, clunk,” he said.
Dr. Volkmar was also the primary author of guidelines calling for early screening, issued by the American Academy of Child and Adolescent Psychiatry, which urges screening of infants and toddlers.
The screening test does not expose children to risk like a colonoscopy to screen for colon cancer, said Paul Wang, a pediatrician who is senior vice president and head of medical research for Autism Speaks, the country’s largest autism science and advocacy organization. He noted that a positive screening might cause parents anxiety and trigger a more comprehensive evaluation.
“We feel the risk-benefit analysis is very much in favor of screening,” Dr. Wang said. “It will be potentially tragic if screening declines as a result of this.”