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 of 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 heads for Chapter 11.
Epidemic rhetoric unites and benefits a host of stakeholders, including parents, who wish to attract attention, research dollars and services; researchers fishing for grant monies; and “service providers” from ABA practitioners to occupational therapists to every shade of alternative practitioner. It’s hard for a journalist new to the story to unravel the agendas, let alone the science.
Nevertheless, the absence of an epidemic is 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.
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. Our best defense against them is a press whose passion lies in separating the wheat of truth from the chaff of nonsense, wherever it is found.
13 responses so far ↓
1 Joseph // Oct 22, 2007 at 3:57 pm
I wrote about the internet hypothesis a while back: here.
2 passionlessDrone // Oct 23, 2007 at 11:10 am
Hi autism news beat-
“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”
For an evidence based blog, the plunge into hyperbole didn’t take very long. Nice.
For your analogy to hold, we’d have to believe that the people with 20/100 vision weren’t noticed as having eyesight problems at all; rather, they were living among us all the time at the same rate, bumping into things, and crashing cars, but it was only once a label was applied that we understood that there was actually a problem with their eyes and not something else.
Take care!
- pD
3 autblog // Oct 23, 2007 at 11:38 am
Yes Drone, you’ve summed up the situation quite nicely. Changes in the DSM include individuals who were once only considered quirky or odd, or else so low functioning as to have been formerly labeled retarded. So while they weren’t bumping into the furniture, they might have been hidden away someplace, like an institution, prison, or the engineering department in a university. Thanks for stopping by!
4 Patrick // Oct 23, 2007 at 2:26 pm
Rofl, Well, for a passionless entity it seems to me that you have quite a passion for pointing things out PD.
5 dynk // Oct 23, 2007 at 4:19 pm
It seems the same people saying vaccines have nothing to do with autism say the epidemic isn’t there. It’s likely true there isn’t an epidemic anymore. There could be overdiagnosis. But a few of them who doubted the vaccines’ role have mentioned recent higher autism rates as evidence that vaccines had nothing to do with it, as the removal of thimerosal around 2000 didn’t get the rates of autism to go down. Whatever suits what they’re trying to convince people of.
6 Joseph // Oct 23, 2007 at 6:39 pm
“But a few of them who doubted the vaccines’ role have mentioned recent higher autism rates as evidence that vaccines had nothing to do with it”
No, it doesn’t work that way. Everyone agrees there has been and continues to be a rise in the administrative prevalence of autism. Absolutely no one that I know of will deny this. That is not the same as saying there has been a rise in true prevalence.
7 dynk // Oct 23, 2007 at 10:47 pm
Who is responsible for the increase in administrative prevalence? What is it being done for? Who is going to stop misleading numbers from being promulgated?
8 autblog // Oct 24, 2007 at 1:05 pm
It’s not the numbers that are misleading; it’s the way they’re used by groups whose agenda is to mislead.
9 Joseph // Oct 25, 2007 at 2:24 pm
“Who is responsible for the increase in administrative prevalence?”
Does there always have to be someone to blame, even for relabeling? If you must, I’d say Lorna Wing and colleagues, in addition to the APA and the internet.
10 The New McCarthyism // Oct 28, 2007 at 12:15 am
[...] In the New McCarthysim, those who prefer not to talk about curing autism, or suggest that there is no epidemic of autism, or that a link between vaccines and autism is a myth, or that our better understanding of autism [...]
11 The Extraordinary Claim of the Autism Epidemic // Dec 6, 2007 at 7:50 pm
[...] December Scientific American considers arguments familiar to those who have been tracking the myth of the autism epidemic: Is there something, such as an environmental factor—-thimerasol from vaccines, toxins from [...]
12 Terry Nova // Feb 3, 2008 at 3:19 pm
I read your blog in a regular manner and just love it
hope there will be more postings from you, keep on going
greetz, terry
13 composer777 // Sep 14, 2009 at 4:17 pm
I was just diagnosed recently at the juvenile research center for autism. I’m 35. Amidst all the toys in the waiting room it became clear that it’s all set up for diagnosing children, not adults. The questionairres are oriented towards parents, not people seeking treatment for themselves. I’ve been diagnosed, and they are trying to find a therapist, anyone, in a city of 2.5 million people, that can actually treat me. I’ve done my own searching for months, and only found one person, who was a complete hack.
Doesn’t anyone find that curious? It shouldn’t be any wonder that adults aren’t being diagnosed, not only are they more difficult to detect, but everything I’ve encountered so far says that adults are not welcome, and that the experts do not care about my problems. Maybe eventually I’ll find treatment, and I’ll try not to trip over the toys in the waiting room…
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