New data released by the Centers for Disease Control show a 30 percent increase over the past two years in the incidence of Autism Spectrum Disorder (ASD) among children. The study suggests that ASD now occurs in 1 in 68 children and 1 in 42 boys.
While this news may seem striking, let’s dig a little deeper by looking at more historical data. The CDC’s ADDM Network reported in 2007 that 1 in 150 children had ASD, in 2009 that 1 in 110 children had ASD and in 2012 that 1 in 88 children had ASD.
I have lived through many of these increases since 1988 when I first began diagnosing Autism during my Developmental Behavioral Pediatrics fellowship in Boston. At that time, and with the recently revised version of the Diagnostic Statistical Manual of the American Psychiatric Association DSM 3-revised in hand, I recall reciting the incidence of what we then called “autistic disorder” as 1 in 1,500. When we expanded the criteria to include milder forms of what we now call ASD, I recall that number leaping to 1 in 500 and then to 1 in 250 and so on to the current rates cited above.
It is with that knowledge and the recent data that I have wondered aloud in my lectures to medical students and others: “Have I created an epidemic of Autism?” Knowing what I know about the broadening spectrum of ASD and the efforts by a number of collaborators here in Vermont and across the nation to identify ASDs, I think I can rest assured that I’m not personally responsible.
Recognizing that with training and experience, and newer understanding of milder forms of ASD, it is not at all surprising for me to diagnose as many as 30 to 40 children per year in Vermont with ASD. In fact, with a stable birth rate of about 6,000 per year, if my colleagues and I are doing our job (and based on this newer data), we should diagnose about 100 children per year.
The Centers for Disease Control and Prevention and the Maternal and Child Health Bureau provide information, grants, and programmatic support to increase awareness of ASDs and help increase the rate of early diagnosis and enhance earlier treatment options. At The University of Vermont Children’s Hospital, with support from our The University of Vermont Children’s Health Improvement Program, we have collaborated with the Vermont Office of Children with Special Health Needs (part of the Agency of Human Services and Department of Health) on efforts to increase awareness and train professionals in both early identification and early intervention.
Am I panicked over the recent data – is this trend to continue such that all children have ASD? The current data is based on health and educational record reviews and may not be as accurate or complete as you might think. However, I do think it is possible that 1 in 65 children and 1 in 40 boys have more difficulty understanding social situations and acting socially, one of the core problems for those with ASD. The question that remains for researchers and clinicians going forward is to determine if in truth 1 in 66 children have significant enough difficulties to diagnose it as a “disorder.”
It might interest you to know that the current DSM-V diagnostic criteria added a severity scale- ranging from “requiring very substantial support” to “requiring support.” Don’t we all need some support in our daily social lives? I know I often do.
Anecdotally, I know that some clinicians, including myself, will actually “un-diagnosis” ASD in their clinics if it is demonstrated through intervention that the child no longer has significant functional social difficulties and no longer has a need for specific interventions around their autism symptoms, which often decrease over time.
Stay tuned and stay aware of Autism Spectrum Disorders. This is a story that has no specific ending yet and should keep the reader interested…it certainly has for me.
For other information and or support regarding ASD consider visiting the Vermont Family Network.
Stephen Contompasis, MD, is a Development-Behavioral Pediatrician at the University of Vermont Children’s Hospital at the University of Vermont Medical Center and an Associate Professor in the Larner College of Medicine at UVM. He is Director of the Vermont Leadership Education in Neurodevelopmental Disabilities (VT-LEND) program funded under the Federal Combating Autism Act. He also serves as a consultant to the State of Vermont Health Department, Division for Children with Special Health Needs.