Popular press coverage of autism is bedeviled by a number of misperceptions. Chief among these is the idea, stated with much certainty, that we are in the midst of an autism epidemic. In fact, it is far from certain that the prevalence autism spectrum disorders is any greater today than in the past.
But the myth of the autism epidemic will not die. It's like Jason in the Friday the 13th movies - you can shoot, burn, drown, crush, stab or gut the monster, but it will always return for the sequel. Neither facts or logic will deter the myth's defenders, because the political and business agendas of so many rest on its very existence. Without an epidemic, claims that vaccines cause autism are moot, and the overnight quack-cure industry goes into Chapter 11. These things are certain to me, and will become clear to others as more reporters rely on evidence rather than the agenda-driven fear mongering of others.
Epidemic promoters point to an increase in autism diagnoses over the last 20 years, from 1:2,100 to 1:166. There are several reasons for this change that have nothing to do with an epidemic. For example, there were no standard criteria for autism in the Diagnostic and Statistical Manual (DSM) until 1980, and the criteria in the DSM have undergone several changes since then. It's entirely possible that Jeremy, the autistic college student whose story is told here, wouldn't have been labeled autistic 20 years ago.
Imagine if the definition of "legally blind" underwent the same diagnostic change as autism. Today, approximately 1:250 persons in the US is legally blind, defined as having 20/200 vision or worse in the better eye that cannot be improved with corrective lenses. If the definition was changed to 20/100 vision, thousands more would qualify for the tax breaks and services, leading to greater awareness and more diagnoses. The phrase "blind as a bat" would be replaced by "blind as a sheepdog", and a faux epidemic would be born, albeit with less outrage.
So why the outrage over autism? There are a number of factors which make autism a fertile field for fraud and misunderstanding, but the key enabler is the very thing most capable of driving a stake through the monster's heart: the internet. Joseph at Natural Variation explored the internet's pernicious influence on autism here.
Enter "autism epidemic" into a Google search and you'll receive 107,000 hits. Of the first ten hits, six lead us to quack medical sites, misleading blog entries, and poorly-sourced news stories. One is a dry but accurate Wikipedia entry which explains the crucial difference between incidence and prevalence. As we delve further, we come to a 2005 Medscape interview with two well-respected researchers who explain the epidemic that wasn't. Another hit leads us to a Time Magazine interview with Dr. Roy Grinker, author of Unstrange Minds, a must-read book for anyone who wants to understand the science and politics of autism. The last hit is a favorable review of Grinker's book by blogger Kristina Chew, PhD, of AutismVox.
The problem with so much information available to so many is that although the question of whether an epidemic exists is scientific, a critical mass of misinformed on-line commentary rests on how "real" the epidemic feels. Typical is this comment left on AutismVox:
What remains to be true is that I personally know at least 50 autistic children. I don’t need someone to tell me they’re autistic. Their behaviors scream it to me. 10 years ago I knew one child who exhibited the behaviors we now know as autism. And most people reading this know the same exact thing.And the anecdotes lodge themselves in the national conversation over autism that play out in the popular media every day.
So I thank Ashley and KOMU for this experiment in participatory journalism. May it lead to higher standards for separating the wheat of truth from the chaff of nonsense. In future posts I'll write about some other enduring myths that bedevil or understanding of autism.