In May of 2013, the American Psychiatric Association announced changes in DSM-IV. “Intellectual developmental disorder” replaced the term “mental retardation,” and the diagnosis for intellectual disability placed less emphasis on a person’s IQ score and greater consideration on clinical assessment. The terms “Asperger’s Syndrome” and “Pervasive Developmental Disorder” were eliminated and folded under the Autism Spectrum Disorder umbrella. There was concern that the new DSM-V might limit the number of children being diagnosed with autism.

Contrary to this prediction, the numbers of children being diagnosed has soared.

A by-county map of autism diagnoses receiving services in PA.

The 2014 Pennsylvania Autism Census findings show that the number of individuals has risen to over 55,000 children and adults receiving services, up from 20,000 in 2009. This is a 181% overall increase in the number of individuals with autism receiving services, and a 334% increase for adults 21 or older, making them the fastest growing group. It’s important to keep in mind that those persons not receiving services or those who were misdiagnosed/never diagnosed are not counted here. Thus, they believe that this is a significant underestimate.

The CDC recently announced that it is planning to assess the impact of the new diagnostic criteria and determine how communities are responding to increasing incidents of autism. Ten sites from across the country will evaluate the medical and education records for eight-year-old children residing in the area to determine how many children have a diagnosis of ASD. A new component is that six of these sites will also assess records of four-year-old children. In addition, all the sites will track at least one other condition such as “intellectual disability.”

The review will ask:

• Would this child qualify for an Autism diagnosis prior to DSM-IV revisions?
• How are communities using this data?

It will be interesting to see what the CDC’s new approach to assessment tells us about ASD diagnoses. Unfortunately, such data compilation takes time; they don’t expect to release findings until 2018. However, the CDC’s 2012 review findings should be released in 2016. We were all surprised by CDC’s 2010 findings that 1 in 68 children are on the spectrum… what will this upcoming report tell us? If our own state’s giant leap is any indication, we could be in for a big wake-up call.