Two independent studies published in “Pediatrics” and “JAMA Pediatrics” estimate that one in 40 children has autism spectrum disorder (ASD). Both studies drew data from the 2016 National Survey of Children’s Health. The studies looked at more than 43,000 children between ages 3 to 17.
Survey respondents participated online or by mail, indicating whether a child in their household had ever received an autism diagnosis, and currently had the condition. Both sets of researchers calculated weighted prevalence estimates at 2.5 percent of U.S. children currently with ASD.
This new estimate is higher than the autism prevalence rate currently reported by the Centers for Disease Control and Prevention (CDC), one out of 59 children. As the CDC describes its process, the estimates are drawn from 11 sites across the country and limited to children who are 8 years old. They are based on comprehensive evaluations completed by professional service providers in the community and reviewed systematically by experienced clinicians.
In an article on the Autism Speaks website, Thomas Frazier, chief science officer for Autism Speaks, suggested that the difference in the estimates may be due to how they are done, noting that “one in 40 is closer to what we see with direct prevalence studies where researchers go into a community to directly screen for autism.”
The research team that published in “Pediatrics” was also interested in measuring parent-reported treatment and healthcare experiences compared to those for other children. Parents of children with ASD reported having greater healthcare needs and barriers to healthcare access compared to children with other emotional or behavioral disorders and children without these conditions. They were 44 percent more likely to report problems getting mental health treatment and 46 percent more likely to report not receiving needed mental health care. They were also two times more likely to report being frustrated in getting services and 24 percent less likely to receive needed care coordination.
The research team that published its findings in “JAMA Pediatrics” noted that almost 30 percent of children diagnosed with ASD did not receive any behavioral treatments or medication during 2016.
In spite of these reported challenges, there is hope yet. Starting this year, according to Disability Scoop, the codes used by medical providers to bill insurance companies “for applied behavior analysis — widely considered the gold standard of autism therapy — will move from temporary to permanent starting Jan. 1, 2019, generally requiring insurance companies to reimburse for the therapy and conferring legitimacy to its effectiveness.”