By Dr. Bob Sears
TACA Physician Advisory member
Earlier this week the US Census Bureau released data on 50,000 American children from their 2016 National Survey of Children’s Health and found that 2.5% of kids, or 1 in 40, have a diagnosis of Autism Spectrum Disorder (1.)
As each survey or prevalence study is released, I keep asking why is this one diagnosis so thoroughly ignored by our government and almost every major medical organization? What is it about autism that makes it OK to turn a blind eye? It’s a pretty safe bet that if 1 in 40 kids suddenly started developing type I diabetes, or cystic fibrosis, or muscular dystrophy, or any number of other once extremely rare, but equally serious conditions with potential life-long consequences, our government and medical industry would team up with billions of dollars to find solutions quickly. That’s not to say that each of these conditions shouldn’t be well-funded; they should and are. The question is why completely ignore the single most serious and prevalent pediatric condition today? Why? Shouldn’t the most common and devastating pediatric medical condition get the most attention and the most funding?
The previously released parent survey from 2017 (based on data collected in 2015) reported a rate of 1 in 36 (2.) What is not clear in the report is how the changed criteria in the Diagnostic & Statistical Manual of Mental Disorder (DSM 5) played a role in the results (3.) DSM5 contains the criteria used to diagnose autism. What we do not know is how the DSM 5 criteria change in December 2013 and this most recent change could affect these future surveys and future CDC prevalence studies (4.)
In April 2018, the CDC prevalence study reported that 1 in 59 U.S. children has an autism diagnosis (5.) The parent survey and CDC prevalence studies use completely separate methodologies. Regardless of that methodology difference, all the rates should cause an alarm response and call to action.
Our mainstream medical organizations and government have spent many decades pretending that autism is NOT on the rise, and this mindset has removed all sense of urgency to find a cause and a cure. Our current pediatric medical policymakers have completely failed the American public on this. How is it that the richest nation in the world can have a pediatric healthcare system that allows 1 in 40 of its children to develop a potentially lifelong neurologic condition without anyone calling it a national emergency? Shouldn’t they all be asking, “What are we doing wrong with all of our children? What is it about pediatric healthcare that is allowing the development of this many kids to go wrong?”
Perhaps the first step in making autism a priority would be performing an autism census. This is step 1 in TACA’s 15 point plan (5.) A once rarely diagnosed condition needs to now become a priority (6.)
Young parents today better start asking these questions, and doing their own research to find the answers, and teaming up with groups like TACA for help, because the government and medical organizations are not going to do it for you.