Now Where Was It You Heard About the Autism Epidemic?
June 29, 2008 by Kristina Chew, PhD
Filed under Health
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?
I saw a video clip of the kid saying bye, bye. That incident was a few days before this one so that may be why it was not really discussed.
I think I first heard the term “epidemic” from that guy who writes a daily report and has views way over on the other side. I would rather not say his name and bring him more readers, if you know what I mean.
When my kids were diagnosed the ASA paperwork said 1 in 10,000 kids had autism and the handouts all focused on how beautiful kids with autism were and how hard it was to tell them apart. I wonder when that aspect of autism changed?
I’m not sure where I first heard it, but I think the people who may be the most guilty of starting or spreading this false rumor (and using the word “epidemic”) were Bernie Rimland and his buddy, Lenny Schafer. I don’t know if someone else tipped of Bernie Rimland but he looked at the Cal DDS data and decided that there had been an epidemic (which after all these years still hasn’t hit any or hardly any of rural and far Northern California, according to that very same Cal DDS data set.
Of course, they had a lot of help from Rick “Autism Tsunami” Rollens.
Rimland, though he is widely hero-worshiped, is guilty of being a main cause of an epidemic of parents who have bought into all kinds of dangerous quack treatments, caused their children to suffer from those treatments and have wasted carloads of money on them. As the “Three Reasons Not to Believe in an Autism Epidemic” paper said, “False epidemics elicit false causes.”
Wow, I am very interested to read this Cristina. I kind of feel (not scientific I know) this myself; but leave the door open to environmental causes if they are ever proved.
Living in Ireland I find the irish catholic denial of anything being “wrong” makes it hard to discuss genetic autism. I meet parents who cannot make eye contact, who find it difficult to go “off topic” sticking to a set pattern of responses (mainly Dads) and I think “Hello!” of course this condition is genetic.
And because I am a straight speaking aussie in a nation of poets and writers (and obfuscators); people tend to open up to me; and share their thoughts on the genetic basis for their kid’s autism.
On the topic of “code switching” I would like to add a small anecdote. The Special Autism School my children used to attend was owned by an order of Nuns. 15 years ago it was a school for “Deaf Boys” but as numbers fell and the school closed, and autism began to rise it was reopened as an Autism Specific special school.
I wonder if the “numbers” fell because of better immunisation and less rubella in pregnancy, or because of better education and integration of the hearing impaired? or because of scientific intervention such as cochlear implants etc.
My kids now attend a full time ABA school. And this school achieves the mean average of 49-51% of it’s pupils leaving to go to a national mainstream school. The rest stay, but are achieving improvements in communication and life skills that allow for a vastly increased participation in their family and community life.
Applied science works obviously. But sadly there are always more children waiting to fill those places, as there are not enough of these ABA schools. And as it is never too late to provide applied intervention, I cannot see the schools closing down for “lack of numbers” anytime soon.
xx
“Studies of twins have established that it is not 100 per cent genetic, since even among identical twins, when one has autism, the likelihood of both twins having autism is only about 60 per cent. This means there must also be an environmental component, but what it is remains unknown.”
- Professor Simon Baron-Cohen
Kristin thanks for the link, I have posted my comments on the autism epidemic there and am copying it here.
—————————————-
There was another rise in the incidence of autism that occured within a decade of Kanner’s paper published in 1943 that defined ‘autism’. In 1965 Kanner explained the phenomena which had disappeared by the mid 1960’s. Kanner explained this long forgotten autism ‘pandemic’ as one not of broading diagnostic criteria but one of gross misdiagnosis. His explanation is relevant to the current disussion of the myth of a global autism pandemic.
http://neurodiversity.com/library_kanner_1965.html
Kanner wrote :
“Moreover, it became a habit to dilute the original concept of infantile autism by diagnosing it in many disparate conditions which show one or another isolated symptom found as a part feature of the overall syndrome. Almost overnight, the country seemed to be populated by a multitude of autistic children, and somehow this trend became noticeable overseas as well”.
The trend to misdiagnosis of autism can be traced to various editions of the APA’s DSM’s starting in 1980:
http://www.unstrange.com/dsm1.html
In DSM-III (1980) Kanner’s definition ‘Pervasive lack of responsiveness to other people (autism)’ was required to qualify for an ‘Autism Spectrum Disorder’.
In the revised DSM-III-R (1987) Kanner’s definition was relegated to just one of five isolated symptoms in the social domain and was not required to qualify for an ASD diagnosis. A field trial comparing DSM-III to DSM-III-R criteria found that ‘autism’ was being overdiagnosed’:
http://www.ncbi.nlm.nih.gov/pubmed/1483972
When DSM-IV (1994) was introduced, the subsequent years produced an astounding seemingly worldwide autism pandemic with prevelance rates sky rocketing from 4 to 6 cases per 10000 to 1 per 150. DSM-IV completly removed Kanner’s definition and replaced it with the vague, ambigous and subjective:
‘Qualitative impairment in social interaction’
This has resulted in conferring an ASD diagnosis in children who would never have qualified for an ‘autism’ diagnosis using Kanner’s defnition in DSM editions prior to 1987, including mentally retarded children with ‘autistic-type’ behaviors and Romanian orphans subjected to extreme social isolation and were adopted into well-functioning English families who also meet diagnostic criteria for an ASD. We now have the same phenoma of what Kanner described in 1965:
“Almost overnight, the country seemed to be populated by a multitude of autistic children”
What would Kanner have called the APA’s committee on Autism and the PDD’s who were responsible for the diagnostic criteria published in DSM-IV in 1994? More than likely he would have described the framers of DSM-IV as ‘acrobatic jumpers who go in for the summary adoption of diagnostic cliches and have found a new bandwagon, ‘Autism Spectrum Disorders”. Had the framers of DSM-IV used a more accurate and descriptive label such as neurodevelopmental disorder spectrum and reserved Kanner’s definition for the small subgroup who actually met diagnostic criteria for Kanner’s definition, the entire myth of a global autism pandemic could have been avoided
@hammie, you wrote something that hits close to home—Jim is Irish American on both sides and his family, very Catholic; the denial factor runs strong.
@Ms. Clark and Bonnie Sayers,
am thinking that that report you mention had something to do with my own first hearing about “epidemics.” I know I heard about Rimland very early on and that “273%” figure is stuck in my head.
It was around 2001-2002 that I first heard about Autism, it was on a MSNBC show called Imus in the morning where he was interviewed four different people about Autism. There were the Wright”s from Autism Speaks, David Kirby amd two other men that childer with Autism. That is were I first the question about where all the adults were becaue they used the 1 in 150 number so it might make you think about how many there might bo out there. So when I heard the other number of 1 in 10,000 you would think maybe there may not be that many adults out there. All of this may have started for 1-150 that in 1993 the U.S.E.P. came to the small town and told the water dept that they had to put Fluoride in the there water supply if the service more the 5,000 people. I know that nobody wents to hear that it could be caused by some thing in the environment because they went to blame the vaccines and nothing else.
I am fairly new to the web autistic community, but I’ve heard of the epidemic first in a youtube promotional video of autism speaks.
The message has not been able to sink in in my case because it was associated with the ”I lost my child to autism” rhetoric. Hey your child is right there!
I just wanted to contribute the newbie perspective on the subject.
What epidemic??? All someone did was give the symptoms a proper name and a place in the diagnostics manual.
I don’t remember where I heard the word “epidemic”… But then again… I have always felt the scale was too big to start with.
S.
I am relatively new to the internet, compared to some folks, so I did not hear the term “autism epidemic” for 7 years after Eleanor was diagnosed, since any browsing I did was specific to teaching programs.
The first time that I heard it used regularly was on a parent group list in 2004, the discussion was centered on the 1/166 number. It was vivid because members were graphing and projecting. I remember that the group a little later felt they had verification because of reference to an epidemic in the reporting by Don Imus and NBC during the special autism week.
Just for curiosity, the popular use of the term seems to have come an article by Bernard Rimland, “Is there an autism epidemic?” in the ARI newsletter in 1995, followed by a few news stories, particularly in the LA Times. When it really picked up steam was in 1999 with stories pairing the term with the MMR research from Andrew Wakefield.
My apologies, I meant, until she was 7, which would make it 5 years. In any event, I think some ignorance was bliss since my focus was on her and it didn’t seem to hurt our teaching efforts.
I still have and wear my “the silence epidemic” T-Shirt with the last stat being 1:250. It is a great conversation starter.
Vintage autism t-shirt, that.
I can’t remember when I first heard of the “epidemic.”
I’ve been doing research on autism for quite some time, possibly since college and found some great sites in the prespective of people with autism.
I can’t really buy the concept of an epidemic anymore than I buy that vaccines cause autism. I think that point of view gets in the way of completely understanding autism.
The epidemic question goes to the very heart of understanding autism and I have also been following autism since college.
Something about all the autism “epidemic” coverage is making me think of the spate of shark attack stories a few years back. It’s not that there were so many more attacks that year (check the International Shark Attack File site for stats!), it’s just that the media created its own little feeding frenzy.
Harold said,
“Studies of twins have established that it is not 100 per cent genetic, since even among identical twins, when one has autism, the likelihood of both twins having autism is only about 60 per cent. This means there must also be an environmental component, but what it is remains unknown.”
- Professor Simon Baron-Cohen
——————————-
Harold, there may very well be an extra-genetic variable, but identical twins are not necessarily genetically identical. That may have been unknown to Dr. Baron-Cohen at the time when he made that statement, since it’s a recent finding.
Thank you for poining that out, Regan. As we age, our genetics do sometimes change, and that seems to be the case with identical twings as well as anyone else. We have been treating them as actually identical for years, but all the recent research suggests that they are not–to the point that if an identical twin commits a crime, we can determine which twin via genetic testing. I have heard the suggestion of changing the terminology to ’same egg’ twins, which is much more in keeping with reality.
I first heard it from Rick ‘TrainWreck’ Rollens. I haven’t believed another word he’s spoken since.
I turned off the TV 3.5 years ago..when the media was selling the iraq war. I decided not to use their product. Is there an epidemic? Only one of my 3 kids has it.