Yesterday, the Centers for Disease Control (CDC) released the latest autism spectrum disorder (ASD) prevalence estimate from its Autism and Developmental Disabilities (ADDM) network. Among children born in 2006, in the 11 states included in the report, ASD prevalence at age eight was one in 59 children. In the early 1980s, only 35 years ago, the rate of autism was about one in 5000. That means that autism is about 85 times more common in today’s middle schoolers than it was in their parents. That is why nobody who grew up back then knew a child with autism but today everyone does.
CDC’s complete lack of urgency regarding autism is reflected in the fact that the agency did not even bother to hold a press conference on the report. Instead, CDC repeats the same tired rhetoric that they are concerned, that they need to diagnose children earlier for services and that better diagnosis (this time of minorities) accounts for the increase.
The CDC report might as well be saying that one in 59 children has a hangnail for all the concern CDC expresses, when in fact, this is a public health disaster that will have repercussions for generations. At what point is the CDC going to admit that this disaster requires action? The largest amount by far of research dollars spent on determining causation has been directed towards genetics. “Genes don’t cause epidemics, environmental toxins do,” said Children’s Health Defense chair Robert F. Kennedy, Jr. “Why is the CDC doing nothing to identify the environmental toxins responsible for the most cataclysmic epidemic of our era?”
Watch this two minute CHD video, AUTISM EPIDEMIC: 1 in 59 Children. CDC Remains Paralyzed, to understand that the CDC has failed the public and the children of this country, and that we must act NOW to stop the autism epidemic.
Children’s Health Defense calls for the following concrete actions:
Immediately create a dedicated and independent agency for autism.
- It is time to remove autism from the jurisdiction of an agency that gives it no attention or priority. In 2007, the CDC autism budget was $14 million, and ASDs affected one in 150 children. Ten years later, in 2017, CDC’s autism budget was $23 million and ASDs affected one in 59 —a 250% increase. If the rate of blindness in children had increased 250% in a decade, it would make front page headlines for weeks. The Individuals with Disabilities Education Act (IDEA) classifies approximately 600,000 children in the school system as having autism. By way of comparison, CDC spent $394 million in 2017 on 1085 reported cases of Zika virus.
Fix the inadequacies of the current surveillance system under new leadership.
- Compared to the previous 2016 report from the 2004 birth cohort, the new ADDM report eliminates two states and adds two new states. Meanwhile, some of the participating states reduced their surveillance areas, while several states increased their access to educational records. These inconsistencies between reports make it difficult—or impossible—to compare changes over time meaningfully. If you consider the three states that have been consistently monitored and that have full access to educational records (Georgia, Maryland and New Jersey), the prevalence of autism is actually one in 46 children or 2.16%. The lack of rigor in these reports is unacceptable.
Plan surveillance in the 33 states that have never been included in the ADDM network or come up with a representative sampling method.
- The ADDM network has never counted autism cases in Alaska, California, Connecticut, Delaware, Hawaii, Idaho, Illinois, Indiana, Iowa, Kansas, Kentucky, Louisiana, Maine, Massachusetts, Michigan, Mississippi, Montana, Nebraska, Nevada, New Hampshire, New Mexico, New York, North Dakota, Ohio, Oklahoma, Oregon, Rhode Island, South Dakota, Texas, Vermont, Virginia, Washington or Wyoming. This means that CDC has never investigated three of the five most populous states (California, Texas and New York). In addition, most of the surveillance takes place in only part of each state. Overall, CDC surveillance covers only about 8% of American eight-year-olds. In comparison, last month’s Canadian ASD prevalence study covered 40% of five-17 year-olds. We need to know what is going on in the rest of the country.
Confirm the long-term autism epidemic through additional studies of older birth cohorts.
- For a decade, CDC has downplayed the importance of its own findings and speculated that the exponential rise in autism prevalence is simply due to better and broader diagnosis. The simple way to disprove this nonsense is to use Medicaid or insurance data on autism nationwide to count the qualifying cases for every birth cohort. Medicaid eligibility is quite stringent; while it will not include the more able adults, it will include the majority of those with Autistic Disorder and show a trajectory over time. This is straightforward and should have been done 20 years ago. Since CDC has refused to look, it is time to hand this project to someone who will.
Continue to report autism prevalence using both DSM-IV-TR and DSM-5 criteria.
- The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the handbook that health professionals use to make diagnoses, and the most recent version (DSM-5) changed the criteria used to make an ASD diagnosis compared to the prior version (DSM-IV-TR). In its latest ADDM report, CDC shows a 4% decrease in ASDs when using the new DSM-5 criteria compared to the older DSM-IV-TR criteria used for all previous ADDM reports. However, the DSM-5 allows children to be “grandfathered” in—meaning that children who had a previous ASD diagnosis under DSM-IV-TR automatically are given a diagnosis of autism under DSM-5. CDC’s report indicates that 15% of the children who met the criteria for DSM-5 only qualified based on having a previously established DSM-IV-TR diagnosis. This suggests that in future years we will see a large drop in ASDs purely due to different criteria for counting cases, which is consistent with studies that have compared the two sets of diagnostic criteria. This will only further confuse any analysis of long-term trends in autism. CDC’s unthinking response to this ongoing concern is that they will use the DSM-5 criteria starting with the 2016 surveillance year and will apply the DSM-IV-TR criteria in a “limited geographic area to offer additional data for comparison.” This is analogous to counting breast cancer cases for 20 years, reporting huge increases, then changing what types you are counting and being unconcerned about how that affects the trend. Given the critical importance of autism prevalence data for the planning of educational and support needs, the surveillance should continue under both sets of DSM criteria in all states for several more cycles. New leadership needs to address this now.
The CDC is Paralyzed.
The bottom line is that, notwithstanding all of the factors that are (intentionally or otherwise) muddying the waters, the CDC is paralyzed. ASDs are being diagnosed at alarming rates in American children. The agency’s complete lack of urgency regarding autism is an insult to the individuals and families affected. More energy and resources must be dedicated immediately to finding autism’s causes and preventing future cases. Children’s Health Defense is asking all to join our movement to demand that autism be removed from the CDC. We need an institute that will address the childhood epidemics facing our country with real action now!