The beginning of wisdom is to call things by their right name. And in medicine that means “the first step in treatment is to make the correct diagnosis.” With respect to autistic spectrum disorder (ASD), early identification produces better outcomes; the earlier the better. But that makes accurate diagnosis in early childhood all the more important for appropriate intervention and education decisions.
My introduction to autism was 55 years ago; so long ago that I actually learned from Dr. Leo Kanner himself when he was a visiting professor at UW Medical School in Madison. Dr. Kanner was the first to describe “early infantile autism” in 1940. My first assignment after residency was to start a children’s unit for autistic children at Winnebago Mental Health Institute in 1962. That’s where I met my first savant. In 1970, I carried out an epidemiologic study of infantile autism in Wisconsin, which is still cited today in similar studies.
So I am no newcomer to autism.
My concern is that we keep reading about an “epidemic” of autism. While there is a rise in the incidence of autism, it is not at an “epidemic” level. Witness a headline all over the world wide web today: “Survey reveals big jump in the number of US kids with Autism Spectrum Disorder.” (American Psychiatric Association Headlines, 11/13/2015)
The article points to a just released report from the National Health Interview Survey (NHIS), which says autism disorders rose from 1.25% U.S. Children between ages of three and 17 in 2013 to 2.24% (one in 45) 2014. Now if that were an actual increase (doubling) in one year that would be an “epidemic.” But let’s look more closely at those how those figures were derived.
First, they depend on parent reports rather than any in person, professional examination or even review of medical records. Parents are asked if any doctor or health professional had ever told them that their child had ASD (autism), ID (intellectual disability) or any other DD (developmental disability). That’s it. That’s the diagnostic criteria for the study. Not that parents are unreliable reporters; it is rather the reliability of the reports they are reporting based basically on memory.
Second, the rules for reporting changed between 2013 and 2014. The question regarding ASD was revised (expanded) and put in different order from other DD conditions than previous questionnaires. An LA Times story points out the doubling “reflects changes in surveying techniques designed to prod parents’ memories for past diagnoses their children might have received,” and it now “appears parents who in the past would have reported an intellectual disability or other neurocognitive disorder in a child are now more likely to report autism spectrum disorder.”
Unfortunately the newspaper headlines and evening news reports on the “big jump in the number of kids with autism” will not reflect the important expansion of definitions of “autism” embodied in the reports between 2013 and 2014. And similar oversights in methodology and ever changing and expanding definitions of “autism” plague all the more recent reports on the prevalence of autism in the U.S.
So when it comes to an “epidemic” of autism, buyer beware. It may be false advertising or sloppy reporting.
Now having observed “autism” for these many years, I am convinced there is an actual increase in the disorder, but not at an epidemic level. Part of the increase is due to ever expanding (and diluting) what started out as early infantile autism more narrowly defined (some seem to say we are all a little “autistic”). Part of the increase is better and earlier diagnosis which is commendable. But in my view part of the increase is actual due to some environmental factors (pollutants of various sorts which may contribute as well to a rise in other congenital abnormalities and premature births; but that’s another column).
What I am saying is that autistic spectrum disorder is serious disorder and needs to be taken seriously. But if we are to know it’s true prevalence, measure the true size of any increase, implement effective treatment and educational interventions and ultimately design preventive strategies for autism, we will need to carefully separate the condition into the group of disorders that it is rather than the single condition we now call it.
And that brings me back to calling things by their right names. I know some parents and some professionals don’t like “labels” for children and are confused by them. Each child does need to be approached individually to be sure. But if we are, as above, to have the most accurate prevalence figures and best intervention and prevention tools we need to be more careful with proper definitions and classifications of this complex condition. That cannot be done by telephone or questionnaire. It will require in person examinations and review of medical records of many, many children and adults by skilled multidisciplinary teams using standardized tools and criteria. In that same manner reliable data can be accumulated for research into causes, treatment and prevention.
I look forward to more accurate reports with appropriate perspectives provided.
We are intensifying our autism evaluation and treatment programs at Agnesian HealthCare to meet those careful, high level, quality goals as a center of excellence for better recognizing, evaluating and treating autism as well as providing better public information about it and doing research into causes of it.
So stay tuned.
Darold A. Treffert, M.D.