The Extraordinary Claim of the Autism Epidemic
It is too true in discussions about autism: Plus ca change, plus c’est la meme chose. On the one hand, new developments in research about autism—-as a study published today in Neuron about how the lack of the synapse-inducing protein CASK may be associated with autism—are regularly reported. This year also saw the publication of new studies about autism genetics and a continued focus on the environment and autism, in an April workshop on this topic at the Institute of Medicine; the autism spectrum disorders and environmental toxins.” TV shows on CNN have featured autistics like Amanda Baggs and DJ Savarese, who communicates by typing.
Then one reads this headline:
Is There Really an Autism Epidemic?
in the December 2007 Scientific American asks Is There Really an Autism Epidemic?, and it’s back to start, to the beginning of this year and earlier. Back in January of this year, journalist and Evidence of Harm: Mercury in Vaccines and the Autism Epidemic - A Medical Controversy, wrote a piece in The Huffington Post entitled There Is No Autism Epidemic. The point of Kirby’s piece was not only to disprove the arguments of “epidemic naysayers,” but also to draw a line between those who have “autism” (a term that he concedes to the “neurodiverse,” that is, to those who are “high-functioning autistic adults”) and what he terms “some other condition entirely.” Kirby then went on to proclaim that there is an epidemic—an unhidden hoard—of children, some of whom are said to be “severely autistic,” who suffer from medical and from gastrointestinal issues in particular (resulting in these children decorating the family carpet with “rivers of diarrhea“). Kirby suggests that these children have “Environmentally-acquired Neuroimmune Disorder” or “E.N.D.”
January also saw the publication of Unstrange Minds: Remapping the World of Autism by anthropologist Roy Richard Grinker, in which he presented an argument for why there is no autism epidemic. Unstrange Minds looks closely at the history of autism by and, too, the history of child psychiatric disorders, and shows how broader definitions, changes in the policies schools used to classify special education students, lessening stigma, and other factors have all played a part in an increase in the prevalence rate of autism. Professor Grinker’s book sparked a good deal of discussion on this topic, further fueled by the CDC’s reporting that the prevalence rate of autism is 1 in 150 in the US in February.
The 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 the environment, that is causing the increase? How do “changing criteria” contribute? Notes the Scientific American article:
Two recent studies buttress assertions that the autism epidemic may be more illusory than real. First, in 2005 psychiatrist Suniti Chakrabarti of the Child Development Center in Stafford, England, and psychiatrist Eric Fombonne of McGill University conducted an investigation that used rigorous population-based estimates to track the prevalence of autism diagnoses from 1992 to 1998 in a sample of more than 10,000 children in the same area of England. They found no support for a change in prevalence, suggesting that when researchers maintain the same criteria for autism, the rates of diagnosis do not change over time.Second, a 2006 article by University of Wisconsin–Madison psychologist Paul Shattuck cited “diagnostic substitution”: as the rates of the autism diagnosis increased from 1994 to 2003, the rates of diagnoses of mental retardation and learning disabilities decreased. It is possible that the overall “pool” of children with autismlike features has remained constant but that the specific diagnoses within this pool have switched.
……………………..As the late Eastern Michigan University sociologist Marcello Truzzi once said, extraordinary claims require extraordinary proof. The claim of an enormous epidemic of autism diagnoses is indeed extraordinary. Yet the evidence for this claim leaves much to be desired.
Nonetheless, one still finds prominent national autism organizations, such as Autism Speaks, simply stating that there is an “autism epidemic,” and emphasizing the “public health urgency” of this “epidemic.” The ASA also notes that there is an autism epidemic.
I don’t doubt that I see and encounter more autistic persons everywhere I go. I do know, before Charlie, I did not know how to identify an autistic person, or even what autism was. For me, the “autism epidemic” has taken the form of an epidemic of understanding: Somehow, once (over 8 years ago) I knew that Charlie had autism, I started to see a lot more autistic persons, and that knowledge has made an extraordinary difference.
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POSTED IN: Diagnosis, Environment, Epidemic, Health, Media, Myth, Rhetoric, Vaccines
16 opinions for The Extraordinary Claim of the Autism Epidemic
Eleanor
Dec 6, 2007 at 7:22 pm
My pet peeve about the term “autism epidemic” really isn’t about whether there is an actual increase in the condition or just a change of diagnostic criteria. My pet peeve is that even if there is an actual increase, NONE of the theories I’ve heard about why that might actually be the case indicate that it is due to an “epidemic,” as that term is commonly used. Epidemic generally refers to contagious diseases. Neither an increase in genetic mutuations, nor a mass poisoning by thimerisol or other environmental toxins, would constitute an “epidemic” I wouldn’t think. But I guess “epidemic” makes for good headlines, doesn’t it?
Kristina Chew, PhD
Dec 6, 2007 at 7:32 pm
It definitely does!
Sarah
Dec 6, 2007 at 7:53 pm
Yes, one of Grinker’s excellent points in “Unstrange Minds” was that the word “epidemic” has been so chronically misused that it no longer retains its proper definition.
Club 166
Dec 6, 2007 at 8:42 pm
I also do not know if the actual prevalence of autism has increased. I know it “feels” like it has increased, because like Kristina I run into autistic people all the time. But I know that a good deal of the “increase” is due to the diagnostic substitution, and the remainder I see may be a result of decreased institutionalization and an increased desire to fully integrate autistics into wider society.
I also don’t think that if there is an actual increase in the incidence of autism that it “proves” that there is an epidemic caused by the environmental cause de jour.
Joe
Kristina Chew, PhD
Dec 6, 2007 at 8:59 pm
The term “autism epidemic” also suggests (suggests) that autism is some kind of contagion or plague, and even that it can be “caught,” and further suggests that it is a (dread) disease.
Channon
Dec 7, 2007 at 12:32 am
“Yes, one of Grinker’s excellent points in “Unstrange Minds” was that the word “epidemic” has been so chronically misused that it no longer retains its proper definition.”
Yes, kinda like “War on Terror” and “War on Drugs”.
Marla
Dec 7, 2007 at 12:40 am
Sometimes I think it is all in how you grow up and where you are located. I have a disabled sister so I was around lots of children and adults with disablities as a child. Then, I worked in social work with disabled children and adults. I don’t really think there is an ‘epidemic’. We also have the increase in communication with internet and television. So it seems like autism is everywhere. However, I still meet many people who have no idea what autism is.
autismdaddy
Dec 7, 2007 at 3:50 am
We live in a soundbite-friendly world where substance and thoroughness takes second place to media-savvy spin. ‘autism epidemic’ is a soundbite designed to inspire worry and fear and keep the contribution dollars flowing.
It’s a situation not limited to autism - its everywhere. Remember the infamous ‘45 mins until Saddam can unleash his Weapons of Mass Destruction’? Presented as fact when it was equally as vacuous and empty a statement as ‘autism epidemic’.
Autismville
Dec 7, 2007 at 12:05 pm
Hopefully there will continue to be some benefits of the use of the term, whether accurate or not. I know many people are interested in talking with me about autism, just because of the various spins they’ve heard. I welcome the opportunity to tell them about Jack and the challenges he faces as well as the successes we have.
anon_two
Dec 7, 2007 at 2:12 pm
The actual “epidemic” is one of bigotry toward those who are at all “different” in their thinking styles. I would trade all the epidemic rhetoric for silence because the result of the epidemic talk (poisoned; train-wrecks; tsunamis; toxic; combat; kidnapped; ransom; soulless; empty shell) has literally fueled a full-on hate campaign which has a a detrimental affect on my own autie family member and others whom I know.
Kassiane
Dec 7, 2007 at 5:28 pm
I agree with anon_two. I’ve not seen ONE benefit for autistic people from the epidemic crap.
Lots of fear, hate, murders, violence. Not one benefit.
John Elder Robison
Dec 7, 2007 at 10:32 pm
It’s very hard to figure out, isn’t it? I see a lot more autistic people, too, but is that because I’m more aware? Because they’re drawn to me? Or because the population is increasing?
Going on the road as I have, I’ve meet many, many autistic folks . . . far more than most people, I’d guess.
I’m no scientist but I do have to wonder if we’re seeing two different conditions here. The people with {regressive autism seem} different from the Aspergians I meet. I can’t quite put my finger on the difference.
In some of the posts on my own blog I’ve talked about the “look of autism/Asperger’s” I truly believe I’m onto something with that, but I can’t describe it in words. I guess I feel I’m seeing more than one condition, and I don’t see myself mirrored in both groups.
But am I onto something, or am I just grasping at superficial differences? I think not, but I can’t be sure.
I have observed people whose “look” is different from my own express solidarity with my views vis-a-vis our thoughts and feelings and hopes, but that may have nothing to do with the underlying cause of our conditions.
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