Well Being

Now Where Was It You Heard About the Autism Epidemic?

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So why are you hearing more about autism? According to Huliq News in a June 29th piece mentioning The Boy in the Window, a book by 66-year-old Barbara Coppo, whose autistic son, Kenny, is 29 years old, this is why:

Perhaps we are hearing more about autism in the news because there are more autistic children in America than ever before. The CDC’s most recent study estimates one out of every 150 children over the age of 8 is autistic or suffers from a related disorder. Today, 560 thousand Americans under the age of 21 have autism. That number is hundreds of thousands higher than just 30 years ago.

Autism may frighten people because so little is known about the disorder. The cause has not been scientifically proven and the victims often act in ways society doesn’t understand.

The Huliq News cites the recent cases of Adam Race, Alex Barton, and Jarret Farrell, all of whose stories have received much attention in the media. (The Huliq News also cites an otherwise undocumented incident in which “another mother and autistic toddler were kicked off an airplane in Huston reportedly because the boy was repeating ‘bye, bye plane’ during the safety speech.”)

There's no speculation in the article about why there are more autistic children. EpiWonk, whose author holds a Ph.D. in Epidemiology and has worked for “more than 30 years as an epidemiology professor in medical academia and schools of public health,” takes another look at Trends in Autism Prevalence: Diagnostic Substitution Revisited:

Several weeks ago I argued that much of the the observed increase in autistic disorder over time can be explained by three phenomenon: (1) Diagnostic criteria have changed over some part of the period during which increases have been observed. The diagnostic criteria for autistic disorder were broadened over time. (2) The average age of diagnosis for autistic disorder became younger. (3) The efficiency of ascertainment (the probability that a true case is identified) has increased with greater awareness of the condition, introduction of new treatments and new resources, advocacy, broadening of diagnostic experience, and changes in diagnostic practices.

EpiWonk cites a small study in England in which it was found that adults who received a diagnosis of pragmatic language disorder in childhood might now have been diagnosed with autism (see also Translating Autism's review). This study was small (38 adults were involved)—-the July 2008 issue of the the Journal of Autism and Developmental Disorders has a “much larger and more elegant study” by Helen Coo and Hélène Ouellette-Kuntz of the Department of Community Health and Epidemiology, Queens University, and Jennifer E. V. Lloyd of the Human Early Learning Partnership (HELP), and three other authors:

The authors examined trends in assignment of special education codes to British Columbia (BC) school children who had an autism code in at least 1 year between 1996 and 2004, inclusive. The proportion of children with an autism code increased from 12.3/10,000 in 1996 to 43.1/10,000 in 2004; 51.9% of this increase was attributable to children switching from another special education classification to autism (16.0/10,000). Taking into account the reverse situation (children with an autism code switching to another special education category (5.9/10.000)), diagnostic substitution accounted for at least one-third of the increase in autism prevalence over the study period.

EpiWonk is off on vacation so we'll have to await his return for a full analysis. The study he refers to looks at the rise of the prevalence of autism in Canada; Paul Shattuck, a professor at Washington University in St. Louis has also studied diagnostic substitution in regard to the rise in children being diagnosed with autism. While the rates of the autism diagnosis increased from 1994 to 2003, Shattuck notes, the rates of diagnoses of mental retardation and learning disabilities decreased. There are more children being diagnosed with autism, that is, because it's autism that is being diagnosed more.

Claims of an epidemic of autism are just that, claims and assumptions based on what people feel and perceive. But where did you first hear about an “epidemic of autism”?

I heard about it on the internet, and the word seemed to fit with our experience of finding that autistic kids like Charlie were not as “rare” as the more official sort of books proclaimed and as our eyes seemed to tell us: Why was that other little boy staring at the stream of sand he was sifting in front of his eyes? Why were there so many other families (as it seemed) clamoring for the hours of the speech therapist we needed for Charlie? How come we had to wait so many months to have Charlie evaluated at the Child Development Clinic at the Minneapolis Children's Hospital?

At one point, I even bought Jim a t-shirt (maybe from this organization—no longer have the shirt) that had the words “the silence epidemic” on it. Meaning that, I'd have to say I heard about the “epidemic” from a t-shirt or a website, not world's most valid sources…..I have source amnesia.

As Sam Wang, associate professor of molecular biology and neuroscience at Princeton University, and Sandra Aamodt, a former editor in chief of Nature Neuroscience (and co-authors of this book), write in a June 27th New York Times op-ed, source amnesia is a way to describe the “quirky way in which the brain stores memories”:

The brain does not simply gather and stockpile information as a computer’s hard drive does. Facts are stored first in the hippocampus, a structure deep in the brain about the size and shape of a fat man’s curled pinkie finger. But the information does not rest there. Every time we recall it, our brain writes it down again, and during this re-storage, it is also reprocessed. In time, the fact is gradually transferred to the cerebral cortex and is separated from the context in which it was originally learned. For example, you know that the capital of California is Sacramento, but you probably don’t remember how you learned it.

Source amnesia occurs when we “misremember” where we learned some piece of information; it can lead us to confusing truth and falsehood. Wang and Aamodt cite the example of public confusion about Senator Barack Obama's religious beliefs. Sen. Obama is a Christian, but 10 percent of Americas think he is Muslim and “the Obama campaign has created a Web site to dispel misinformation.” Because:

A false statement from a noncredible source that is at first not believed can gain credibility during the months it takes to reprocess memories from short-term hippocampal storage to longer-term cortical storage. As the source is forgotten, the message and its implications gain strength. This could explain why, during the 2004 presidential campaign, it took some weeks for the Swift Boat Veterans for Truth campaign against Senator John Kerry to have an effect on his standing in the polls.

Apply the phenomenon of source amnesia not only to claims of an epidemic of autism, but also to claims that vaccines or something in vaccines cause autism: When did you first hear of these? Where did you first hear of these—-from an email discussion list about autism? From a personal website on the internet? From your prone-to-worry mother-in-law? From an organization that (not that you were aware of this at the time; you had a lot else on your mind, like teaching your child to use a fork and say the first syllable of his name) states that various alternative treatments for autism can be effective and safe?

In the fourth book of the Aeneid, the epic about the founding of Rome by the poet Virgil, a being—indeed, a sort of beast—called Rumor grows and grows as reports of the arrival of the Trojan prince, Aeneas, are spread around Carthage, the northern African city that Aeneas has been shipwrecked in. Carthage is ruled by a queen, Dido, who has fallen in love with Aeneas, and a Libyan king, Iarbas (who had been hoping to win the queen's hand himself) hears of this as does Jupiter, king of the Olympian gods himself. Rumor—fama in Latin—is the source:

              … no other evil is swifter than her,
she thrives on speed, and gathers powers as she goes;
small when fear is fresh, soon she's raised herself
up to the heavens, and walks on the ground
and hides her head amid the clouds. (Aeneid 4.174-177)

Now where was it you heard about an epidemic of autism and some of those reasons for it—-word of mouth?