"A lot of people are very concerned that this recommendation may lead to a decrease in screening," said Diana Robins, PhD, associate professor in Drexel University's A.J. Drexel Autism Institute and lead author of a paper recently published in the Journal of Autism and Developmental Disorders. "They pointed to gaps in the long-term follow-up of children in which autism was detected from primary care screening. There should be more rigorous follow-up studies, but screening should continue, as has been recommended by the American Academy of Pediatrics for almost a decade."
The task force's position cited gaps of data in treatment studies on children whose autism was discovered through primary care screening.
Robins, the research program area leader for Early Detection and Intervention in the Autism Institute, and more than 10 colleagues who helped co-author "Universal Autism Screening for Toddlers: Recommendations at Odds" agree that more research should be done in that area. However, they pointed out that the studies that do exist found demonstrative improvements in children on the autism spectrum who start treatment earlier in life.
Time is of the essence. When early screening is utilized, Robins said children on the autism spectrum can be diagnosed around their second birthday.
Without that screening, the diagnosis comes around their fourth birthday or later. That's a difference of two years, during which the child continues to be untreated.
"There's a growing body of evidence that the earlier you start treatment, the better the outcome," Robins said. "When symptoms are emerging, it's usually between a child's first and second birthday. And they're things that are not easy to measure by a doctor," Robins said.
That includes social interaction and engagement -- subtle behaviors that are not easily noticed outside of screening.
"It's symptoms that become more and more apparent as the child gets older and they fall further and further behind," Robins explained. "And a lot of parents, especially those without an older child, don't know what behaviors they should be seeing."
The American Academy of Pediatrics -- back in 2006 -- threw its support behind early childhood screening and surveillance, which is made up of three parts. The first step is ongoing developmental surveillance at every pediatric check-up; the second is broad developmental screening (which includes looking at components like speech, motor skills, and problem-solving ability) at nine, 18 and either 24 or 30 months; and the final piece is autism-specific screening at both 18 and 24 months.
But even with the American Academy of Pediatrics' stamp of approval, a study found that just 17 percent of pediatricians were doing all three. Now, without the explicit support of the task force, the concern is that the percentage could dip even lower.
"If you don't have everyone on the same page, it makes things more difficult," Robins said.
Universal screenings are a public health issue, first and foremost, according to Robins and her colleagues.
"Limiting or decreasing universal screening will have deleterious long-term effects on children with or at risk for autism spectrum disorder," they wrote. "Additionally, many professionals who work with families and young children are counting on universal screening as a key mechanism for the elimination of existing racial/ethnic and class disparities in the age at diagnosis and start of intervention."
Robins said the task force has indicated that it will look more deeply into some studies that were brought forward. She and her colleagues are hoping for the task force to revise its position as additional studies emerge demonstrating the long-term benefits of screening and early detection.