"The number hasn't changed, but the impact is still great," said Rice, who previously worked at the CDC and used to lead this autism project. "While this is a hint there may be a slowing of growth and identification of people with autism, it certainly doesn't yet confirm that we are seeing this leveling out. What it confirms is that autism is a more common condition than we had been addressing for many years and we need to use these numbers to motivate us to help address the needs in the community."
Alison Singer, president of the Autism Science Foundation
and mother of a daughter with autism, said this is not a sign everything is fine. "It points to the need for more research to understand nuances in data to be able to better serve all children diagnosed with autism," she said.
The report suggests there are delays in acting on early concerns, said Rice. The report says 87% of children later diagnosed with autism had a documented developmental concern by age 3, but less than half (43%) of those children received clinical developmental evaluations by age 3.
"Almost 90% of children (with autism) have an indication of developmental concern by age 3, and less than half of them are getting an evaluation," said Michael Rosanoff, the director of public health research at Autism Speaks
. "There is a gap there, a gap in services that we need to bridge. We can reliably diagnose autism by 2 years. Our goal is to diagnose earlier and get services to children earlier."
Singer agrees that children are not getting identified as early as they could be. "I was disappointed to see that number didn't improve, because we have invested a lot of energy there in trying to build awareness," said Singer. "The earlier we can identify children and have them diagnosed and get them into intervention, the better the prognosis."
Rice attributed the lack of early identification to a "capacity crisis." "There are not enough quality providers out there to provide those therapy services that are needed," she said. "I think a huge thing we need to do at the early age and across the life span of people with autism is ... identify and support individuals with autism."
The report also found that black and Hispanic children continue to be less likely to be diagnosed with autism than white children. Black and Hispanic children also receive developmental evaluations later than white children.
Minority children are being under-identified, said Singer. "We are leaving these children at risk because if they are not identified, they are not getting into early intervention, and if they are not in early intervention, they can't take advantage of the best weapon we have against autism, which is good early intervention."
The disparity in prevalence of autism between ethnic, minority children and white children is not because of a difference in prevalence, but because they have less access to diagnostic and support services, said Rosanoff. "We are seeing this trend continue, and it's another gap that we need to bridge," he said.
The data was collected from the CDC's Autism and Development Disabilities Monitoring Network
, which is a tracking system that provides estimates of the prevalence and characteristics of autism among 8-year-old children in 11 communities around the country.
"Numbers report a lot of data, but we are talking about children. They are sons, and they are daughters; they are not just numbers. We have to make sure that we move beyond counting and make sure that each child who is identified in this report is actually receiving services that he or she needs," said Singer.