Like many people, I was angered and alarmed at news that 1 of every 150 children in the US is autistic. After swimming around in the Bay of Environmental Causation where mercury plays a major role as the culprit, I looked at the study itself. I was taught a lesson I’ve been taught before: what is the actually data, does the data support the conclusions, and what are the politics behind how those conclusions are turned into messages delivered to use through the media.
The study was published in the Morbidity and Mortality Weekly Report (MMWR), a publication of the CDC. Begun in 2000 in response to Congressional alarm over autism, this study is the first of what will be routine reporting on the prevalence of autism in children. The objective of the study is to provide a valid estimate of how many children actually suffer from autism.
This is a loaded issue. Many activists, lead by concerned parents, have cited the astronomical growth in the number children with autism over the past two decades. They have often linked this epidemic growth to early vaccination and the mercury-based chemical Thimerosol used to preserve vaccines.
The media coverage of the CDC study was careful to repeat the study’s authors in saying that their results neither support nor deny this rapid increase in cases of autism. The media were also careful to repeat the study’s authors in saying that the study does not support any particular theory about the cause of autism. Dutifully, the journalists went on to quote “experts”, including those from well-established autism advocacy organizations, that it’s not known whether rates of autism have changed and that no one really knows what causes it.
The messages were:
1. “Oh, my God! There’s a crisis!”
2. “This is the best estimate so far, but we can’t tell whether it’s getting better or worse or what’s causing it.”
3. “So we can’t really do anything about it. But give us more money so we can study it further.”
The media did not quote anyone with opinions and science that challenge these messages—for example, representatives from the Autism Research Institute founded by the late Bernard Rimland.
Whether autism is on the increase is a loaded issue because it is wrapped tightly with possible causes. If autism has in fact increased 5000% in the last 20 years as some claim (with good reason), that points very strongly to environmental causes with mercury a leading candidate which would implicate Thimerosol which would implicate vaccination which is a Golden Calf.
Yet skeptics of the autism epidemic theory point out that it’s possible that the apparent growth is a consequence of how the counting is done and how people are diagnosed. For example, as awareness of autism has grown, more children have been diagnosed not because more children are autistic but because they haven’t been diagnosed with something else (that is, diagnosed as autistic rather than as mentally retarded) or diagnosed with anything at all (that is, the child isn’t autistic, just shy).
As I looked through both the MMWR report and the various commentaries on it, I thought: this whole controversy has been weighted down by diagnosis. Sorting it out is made close to impossible by conventional thinking, in particular the ideology that to act we must have a diagnosis. That is, unless something is diagnosed, it’s not real. The MMWR study illustrates how this happens. It is an exercise in making a complete mess through diagnosis.
What the MMWR measured was something it calls Autism Spectrum Disorders (ASD), which consists of “classic” autistic disorder (a severe condition) plus Asberger syndrome (so-called high functioning autism) plus a diagnosis called pervasive developmental disorder, not otherwise specified (nicknamed PDD-NOS, which is a kind-of-like-autism-but-not-quite diagnosis). Each of these diagnoses revolve around difficulties that young children have in communicating and socializing with other people. The so-called authorities acknowledge that these difficulties can range from mild to severe. And yet, despite throwing these all together as a single category, these same authorities cannot (or will not) make any claims about the biological mechanisms involved.
This seems to me more about hiding the reality of what’s going on rather than revealing it. For example, why do the statistics the MMWR report is so proud of not include the prevalence of the separate conditions comprise ASD? Wouldn’t you want to know the difference between the number of children with autistic disorder and the number of children with the more vague PDD-NOS?
The Autism Research Institute argues persuasively that autistic disorder is the consequence of disrupted brain biology, that the rate has increased dramatically worldwide, and that exposure to mercury is strongly implicated. Counting heads is a good way to divert research money and avoid taking action. Counting heads in a way that muddies the issue further is even better.
The problem runs deeper. The problem is that this entire enterprise starts with defining the “disease.” With a disease you have a diagnosis and with a diagnosis you can count heads, study all the factors that affect those diagnosed compared to those who do not meet the diagnostic criteria, and then devise treatments.
This approach falls apart with autism, particularly since the diagnosis is based on communication and socialization skills as compared to some standard in the absence of any biological marker for the “disease.” To paraphrase Jeremy Bentham, what is relevant is not whether a child is diagnosed but whether he or she suffers.
The questions to ask are “What is the nature of that suffering? What is the biology of that suffering? What environmental factors affect that biology?”
Two years ago, the EPA set new toxicity standards for mercury exposures. It set the standard without considering the results of a study it had commissioned to determine the economic costs of mercury exposure. The study used the economic impact of increased rates of autism as the principle measure of the effect of mercury exposure.
It’s not so hard to figure out once you unwrap the science from the politics.
