A new study by Autism Speaks finds encouraging progress towards universal early screening for autism. But it raises concerns about whether this is enough to lower the average age of autism diagnosis and early intervention. Early intervention is crucial for enhancing the development of communication, learning and social skills in children with autism.
The report appears online in the Journal of the American Academy of Child and Adolescent Psychiatry.
In their analysis, Autism Speaks scientists reviewed all previously published studies on programs for early detection of autism spectrum disorder (ASD). In all, they identified 40 studies describing 35 approaches.
Encouraging Advances in Early Screening
“The good news is that we found universal screening for autism risk to be feasible and practical,” says lead author Amy Daniels, Autism Speaks assistant director for public health research. “We also see that it seems to work best in the context of a toddler’s well-child visits to a pediatrician or family doctor.”
This is consistent with the American Academy of Pediatrics recommendation that all children be screened for developmental delays at 9, 18 and 30 months and for ASD at 18 and 24 months. Usually this can be done during a toddler’s regular checkups (See “Screen Your Child” for an online version of the MCHAT-R screening questionnaire.)
Are children being lost after screening?
But autism screening is just the first step toward a full diagnostic evaluation and enrollment in early intervention services, Dr. Daniels notes. “We found a considerable lack of follow up on what happens to children who score at high risk for developing autism,” she says.
Specifically, the investigators found that few early-screening studies documented whether children screened as “at high risk” of having autism went on to receive a full diagnostic evaluation and appropriate services. As a result the studies shed no light on whether early screening actually reduced the time to diagnosis and early intervention
Even more worrisome, the few studies that did follow children identified as "at high risk" suggested that some – perhaps many – were falling through the cracks after screening. In some cases, the children were not being referred by their pediatrician to an autism specialist for the necessary full evaluation.
“We need to know why,” Dr. Daniels says. “Are pediatricians advising parents to take a wait-and-see approach? If so, that’s a concern because the sooner children get treatment the better their outcomes.”
Other potential barriers to early intervention include community shortages of specialists who can perform diagnostic evaluations and of appropriate therapy programs.
“We know that screening is not enough,” says Autism Speaks Chief Science Officer Rob Ring. “Getting a timely diagnosis and access to quality intervention programs can be an odyssey, and Autism Speaks is advancing research on programs that can help. At the same time, we are redoubling our awareness and advocacy efforts to build service capacity in communities, states and nationwide. Our government representatives and public health agencies need to work with us to meet – head on – the needs of families with recently diagnosed children.”
While autism can be reliably identified in children as young as 24 months, the average age of diagnosis and early intervention remains stubbornly above 4 years of age in the United States. Autism Speaks is dedicated to improving access to quality early intervention services because research consistently shows that earlier intervention can greatly improve outcomes and quality of life across the lifespan.
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