New CDC autism survey reflects the experience of TAP network partners in Illinois

A new survey released by the Centers for Disease Control and Prevention (CDC) may indicate that official autism prevalence rates of 1 in every 88 school age children, may be understated. The report, released yesterday by the CDC’s National Center for Health Statistics, indicates that the prevalence rate may be as high as 1 in every 50 school age children.

While more research is needed, the survey of nearly 100,000 families does reflect the experiences of The Autism Program of Illinois (TAP) network partners. We have long suspected that the CDC’s prevalence rate of 1 in 88 is understated based on evidence we are seeing in the field. Demand for autism services is increasing, and many of our 16 TAP centers across Illinois have waiting lists for services. At The Hope Institute’s TAP service center in Springfield, the number of children enrolled in social skills groups has doubled, and there is a waiting list for diagnostic services.

While the results from this study are preliminary, and the official government prevalence rate remains 1 in 88 children, the new data certainly adds to the field of knowledge and confirms our observations at a clinical level.

After the data was released yesterday, I spoke with Dr. Bennett Leventhal, one of the founders of TAP. Dr. Leventhal noted that these are interesting findings that are consistent with a previous study of autism in Korea by Dr. Young-Shin Kim of the Yale Child Study Center and her colleagues. However, he cautioned that there are major differences between the two studies. First, this CDC report shows a prevalence of 2% whereas the Korean study reported 2.6%. But, the major difference is that this study is a survey of parents and not a multi-informant, total population study. Dr. Leventhal felt that a more extensive total population study would count others and would likely increase the prevalence even further.

Dr. Leventhal reminded me that “This is a ‘prevalence’ study which means a count of the number of people with ASD at a particular point in time”. Dr. Leventhal continued, “This is not an ‘incidence’ study. Incidence is a measure of the number of new cases. In other words, this study does not tell us if the number of ASD cases is really increasing or if we are just counting more.”

Yet, this new data seems to at least suggest that much of the increased prevalence occurred as a result of new diagnoses, which are happening at earlier ages. Not surprisingly, those children receiving early diagnosis and treatment are experiencing better outcomes. The message for policymakers is clear: despite our nation and state’s fiscal crisis, this is NOT the time to cut vitally-needed funding for autism services. Rather, this is the time for all parties to come together in support of best practices and systems of care – like the TAP network model – that can be replicated across our nation.

The full report, “Changes in Prevalence of Parent-Reported Autism Spectrum Disorder in School-Aged Children: 2007 to 2011-2012” is available here.

Sincerely,

Tara Glavin-Javaid, M.A., BCBA
Assistant Vice President of Chicago Programming
The Autism Program of Illinois
The Hope Institute for Children and Families

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