IS AUTISM PREVALENCE RISING? DEPENDS WHO YOU ASK.

By J.B. Handley

I was struck by a couple of comments Harvey Karp, ostensibly representing the mainstream medical establishment, made on Larry King Live earlier this month.

First:

LARRY KING: What puzzles you the most, Dr. Karp? Is it a disease to you?

HARVEY KARP: Why it's going up. It's something that is terribly affecting families. As I said, there are multiple causes. We look at immunizations as being temporally related. But there's pesticides, fire retardants, other chemicals that kids have never been exposed to before. We need to do the research…

Second:

HARVEY KARP: Well, I think that most important, where -- let's start with where they're right, which is that we need to do something now to find out the reasons for children developing autism, because it is ramping up and it's something that we need to be concerned about. And they're also...

Two separate times on Larry King Live, Harvey Karp noted that the prevalence of autism is going up. And, neither time did he quickly follow that with the dreaded two words: “better diagnosis,” or the dreaded three words: “expanded diagnostic criteria.”

I believe that most Americans would be shocked to realize that the primary agencies involved with addressing autism in our country do not acknowledge that we are experiencing a true rise in prevalence.

From the CDC’s website:

“It is clear that more children than ever before are being classified as having autism spectrum disorders (ASDs). But, it is unclear how much of this increase is due to changes in how we identify and classify ASDs in people, and how much is due to a true increase in prevalence.”

And, also from the CDC:

“Has the number of children being served under an ASD classification in public special education programs changed?

Yes. Between 1994 and 2006, the number of 6 to 17-year-old children classified as having an ASD in public special education programs increased from 22,664 to 211,610. While it is clear that more children are getting special education services for autism than ever before, it is important to remember that this classification was only added in the early 1990s. Growth in the number of children classified may be caused in part by the addition of autism as a special education category.”

The CDC also provides a history lesson:

“Autism may seem like a modern disorder, but it’s not. People have probably lived with what we know today as autism spectrum disorders throughout history. Some of the earliest published descriptions of behavior that sounds like autism date back to the 18th century. But the disorder did not have a name until the middle of the 20th century. Autism was first identified as a specific disorder in 1943 by child psychiatrist Dr. Leo Kanner. Based on a study of 11 children, Dr. Kanner published the first description of what he called “autistic disturbances of affective contact.”[3] At about the same time, German scientist Dr. Hans Asperger, based on his study of 400 children, described another form of autism that became known as Asperger syndrome.”

And, from the AAP’s website:

“Studies show that the incidence of autism has risen.  The apparent increase in autism may be due to a combination of factors. For example, more and more behaviors and disorders are being included in the definition of ASD than in the past. Also, the public and the medical profession recognize these disorders more often.”

And:

“Autism has a strong genetic basis. Currently about 10 percent [the dreaded OSOTEN!] of cases are connected with genetic conditions such as Fragile X or Prader-Willi syndromes. According to a January 2008 study, researchers have discovered another genetic mutation that could account for higher risk in another 1 percent of autism cases.”

So, both the CDC and AAP both qualify that any rise in prevalence is only “apparent” and that whether any rise is real is simply “unknown.” Further, the AAP quotes the “10% genetic” figure that Mark Blaxill proved was unfounded.

Don’t you wish Sanjay Gupta had asked Julie Gerberding during her interview if autism was on the rise? In the middle of a full day at CNN devoted to a relentless epidemic, I think even Dr. Gupta would be surprised to know that Gerberding’s agency doesn’t actually acknowledge we have a GROWING problem!

I also looked at the website of Autism Speaks and was surprised to read in their ‘Facts” section the following:

“Autism is the fastest-growing serious developmental disability in the U.S.”

I then went to the Autism Society of America website, an organization that seems to sit in between both sides of the debate and was again pleasantly surprised:

“Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade.”

So, there you have it. The CDC and AAP don’t acknowledge we are experiencing a rise in the prevalence of autism. Autism Speaks and ASA do. And, on at least one issue, I actually agree with Harvey Karp.

J.B. Handley is Co-Founder of Generation Rescue and Editor at Large for Age of Autism.
   

Comments

[Julie Obradovic]

This story reminded me about Karp's comments regarding chemicals and fire retardants on Larry King. It's hilarious to me (albeit horrifying) that he would be more inclined to blame my daughter's autism on her pajamas than on the chemicals injected into her body the day she was born. That said, I guess it's not suprising his affiliates have no clue if there's a rise in autism or not; they apparently don't have a clue about anything.

[Anne Dachel]

Thanks JB!

The only way the ridiculous claim that autism is solely genetic is can work is if there's been no real increase in the disorder. Even the creators of medical myths at the CDC know there's never been a genetic epidemic in human history. Officials and vaccine defenders have to keep making the claim that all these kids are nothing new.

When the new autism rate of one in every 150 kids/one in every 94 boys was announced in Feb. 2007, it came in the same breath with the phrase, "...but this doesn't mean more children actually have autism." The better diagnosing/no real increase claim was immediately put out there by lots of people with PhD or MD after their name.

Vaccine patent holder and link denier, Paul Offit, MD, dismissed the increase claim saying, "People that we once called quirky or geeky or nerdy are now called autistic because when you give that label of, say, autistic spectrum disorder, you allow that child then to qualify for services."

Dr. Gerberding explained it this way, "We can't yet tell if there is a true increase in ASDs or if the changes are the result of our better studies."

Dr. Marshalyn Yeargin-Allsopp, chief of the CDC's developmental-disabilities program was interviewed in Newsweek and agreed that it isn't that "the rates of autism have gone up, just that now we have some more definitive data."

In the New York Times article, Study Puts Rate of Autism at 1 in 150 U.S. Children, Dr. Fred R. Volkmar, from Yale University School of Medicine was quoted as saying, "It appears that the rates are unchanged over the past 20 years or so."

Dr. Stephen Goodman, an epidemiologist at Johns Hopkins University in Baltimore who has studied autism statistics for the past 30 years. He stated, "The explosive increase that has been claimed is almost certainly not true."

Surely, all these important experts can't be wrong!

More recently, in the Courier News in Chicago, Dr. Bennett L. Leventhal at the University of Illinois at Chicago was quoted saying, "Despite what you might have heard from celebrities on talk shows, there is no autism epidemic. Research has shown that 1 in 150 kids having one form or another of the brain disorder has remained relatively constant since 1943."

Leventhal is the director of the Center for Child Mental Health & Developmental Neuroscience Institute for Juvenile Research in Chicago. He sees these kids everyday and he hasn't noticed that there are more of them. To him, the number of "counted cases" has increased. That's no big deal. Nothing to worry about.

I love the "better studies, better diagnosing" claim. The entire medical community just used to miss or mislabel these kids. This self-congratulatory nonsense flies in the face of common sense but it's been put out for years.

I wrote to Bennett Leventhal and asked him to explain his claims in light of all the evidence out there.

He ignored the points I made. He claimed he's right and I'm wrong because he has the studies and I don't'. He did say, "I will not rest until we solve this vexing clinical challenge." Huh? "Vexing clinical challenge"? That was the strongest language he could come up with, "Vexing clinical challenge." We weren't talking about unwanted facial hair. The issue is a health care disaster destroying children and families.

Finally he said, "We will just have to agree to disagree." Huh?

Actually, all this boils down to the ticking clock out there that will expose all the cover-up. When these kids become adults they will hit Social Security like a tsunami. They'll be lined up right along with the first wave of the retiring WWII baby boomers. The boomers worked all their lives and paid into Social Security. What if all these kids take it away from them?

No one ever talks about this. How will all these disabled adults be explained away? Will Volkmar be saying "It appears the rates are unchanged"?

Will Gerberding tell us that they don't represent a real increase?

Will the economic disaster these young adults create be only a "vexing problem" to Leventhal?

I'm so glad all these people have gone on the record saying these things. They'll be the first ones we turn to for advice.

[Leslie]

J.B. -- I noticed the quote from the AAP refers to incidence, not prevalence.

In November 2007, when Thomas Insel, M.D., head of the National Institutes of Mental Health (NIMH) spoke at the NAA conference in Atlanta, he was asked "What will it take to declare autism an epidemic?" His response was "Data." What kind of data, we asked? "Incidence." We argued that the CDC had issued prevalence rates of 1 in 150. So, he enlightened us -- there is a difference between incidence and prevalence. I went to the CDC website which defines the difference between incidence and prevalence. To determine incidence, you have to be able to pinpoint the exact time of disease onset -- which (according to the CDC) is not possible with autism.

So, there you have it. Insel says we have to have incidence data to declare an epidemic, and the CDC says it's not possible to determine incidence in autism.

Meanwhile, Dr. Insel was heard to say privately that while in practice as a psychiatrist, he rarely if ever saw anyone with an ASD -- now there are several in his neighborhood. If I go to a neighborhood pool or park and there are more than 10 kids, someone there has an ASD. If you include ADD/ADHD of course, it's astonishing. Ask any special ed director in the U.S. about autism. Their eyes look like dinner plates. IEP meetings have become like war zones since the battleground has been relegated by public health officials to the schools. They need to dispense Xanax like Skittles in these meetings for any hope of a civil proceeding. Parents have been denied insurance, public assistance -- they are virtually on their own. I met a young woman recently who is leaving her job with Head Start in our area because she says school districts don't even have enough personnel to test the children, much less provide services. They can't even keep up with determining eligibility. Sadly, she says many of these kids are just staying home, getting NOTHING.

Our school district of about 50,000 has more than 600 students identified (that's just the ones identified) -- and though I don't have the data, I suspect there are a great many more seven year olds than there are 17 year olds. You can do the math, that's definitely more than one in 150 and includes the age cohorts with much lower prevalence. One district employee (anonymous) told me incoming numbers are more like one in 67.

We need to continue to demand that autism be declared a national emergency, and that the Manhattan Project that should have been launched a decade ago happen immediately.

Is autism rising in prevalence? Well, there's too many kids to count. Should that serve as a clue?

Keep up the good work!

[Angela Warner]

According to Dept of Ed. stats for Washington state, the increase of autism from 2006 to 2007 was a staggering 18%. Hmmm... Washington state also received some BS award for having the best immunization rates during the same time period. Co ink a dink??? I think not.

As far as the AAP??? I do not believe one stinking word that comes from their lips. I believe nothing until I see them take action. I asked them to sign the endorsement for changes to our military insurance and they refused. When I called them out (again) I never heard back :) You can read the email exchange on my blog. The day the AAP actually does anything to help our children I'll be happy to eat my words. But I am certainly not holding my breath, nor am I counting on it.

[Fed Up]

Remember the Autism A.L.A.R.M. document that the AAP and CDC put out in Jan 2004?

"Autism is prevalent"

http://www.medicalhomeinfo.org/health/Autism%20downloads/AutismAlarm.pdf