Autism Not Really on the Rise? 97.8% Impossible.
By J.B. Handley
Author’s Note: I wrote this article 5 years ago to refute the absurd folklore that the Autism epidemic was solely the result of “better diagnosis.” This trick has been oft-repeated since then and is now being used by many to try and counter the argument that many parents avoiding the MMR are trying to avoid Autism, which seems a reasonable calibration of the risk-reward involved with the MMR shot. In the “better diagnosis” dreamworld, there isn’t really an Autism epidemic, and therefore parents need not worry, MMR can’t cause something that isn’t there. This ridiculous pronouncement can be refuted with some very simple math, which I have updated below for the newer prevalence numbers.
"There are three kinds of lies: lies, damned lies, and statistics."
- Mark Twain
In America’s health care debate, Republicans seem to have the upper hand by using a tried and true PR strategy: confuse the living hell out of everyone and shout really loud while doing it. The same can be said for the ridiculously confusing debate over how many people do, and as importantly did, have autism.
Are prevalence rates of autism actually on the rise? If they are, the environment is playing a role, and the crazy parents on this site may actually be on to something. If they’re not, well, this is much ado about nothing. Autism has always been with us, let’s learn to accept our children as they are and bend society to accommodate this very large group of people who have always been with us but only recently acknowledged.
Which is it? Well, a recent “report” from the UK seems to support the position that we have just as many adults with autism as we do kids. You can read the report for yourself HERE, it’s featured prominently on the UK CDC’s website, and appears to support the idea that 1% of British adults have autism, too, so let’s all stop talking about the MMR.
My guess is that this report will do little to move the debate forward. The investigators only surveyed 7,500 people, and their definition of “adult” included anyone age 16 or older. As we all know, the rise in autism appears to have started somewhere in the early 1990s, which means “adults” between 16-20 are really part of the age of autism. Further, the study isn’t peer reviewed and the subjects with “autism” were directly interviewed over the phone but never seen in person (if they were interviewed over the phone, that means they can all talk and process questions, which is another head-scratcher.)
At any rate, I’m not here to nitpick the UK report because it appears to be absurdly useless, and I’d rather redirect you to the simple math that we can all do to look at some of the unsupportable arguments the other side uses to try to convince the world autism has always been with us at the exact same rate.
Devilish, devilish details
OK, here’s a quick quiz for you: your stock portfolio loses 75% of its value. Bummer. But, you’re a risk-taker, and you’re going to stick with stocks. So, how much does your now much smaller portfolio need to grow to get back to breakeven?
Most people, knee jerk, answer 75%. But, the right answer is 400%. Numbers can confuse.
Most people, knee jerk, have a hard time really internalizing the difference between an autism rate of 3.3 per 10,000 and an autism rate of 147 per 10,000. They know the second number is a lot bigger, but perhaps don’t internalize the practical application of this difference, so let’s consider a real-world example:
In 1987, a peer-reviewed study was published called “A Prevalence Study of Pervasive Developmental Disorders in North Dakota” which aimed to count how many kids had a PDD/autism diagnosis in the entire state. The researchers looked at all 180,000 children under the age of 18, and determined that North Dakota’s rate of autism was 3.3 per 10,000. Here’s a summary from the authors:
“Of North Dakota's 180,986 children, ages 2 through 18, 21 met DSM-III criteria for infantile autism (IA), two met criteria for childhood onset pervasive developmental disorder (COPDD), and 36 were diagnosed as having atypical pervasive developmental disorder (APDD) because they met behavioral criteria for COPDD before age 30 months but never met criteria for IA. The prevalence rates were estimated at 1.16 per 10,000 for IA, 0.11 per 10,000 for COPDD, and 1.99 per 10,000 for APDD. The combined rate for all PDD was 3.26 per 10,000 with a male to female ratio of 2.7 to 1.”
This was a thorough study. The children with an ASD were assessed in person by a doctor. The data was published in a journal. It was peer reviewed. It was replicable. They found 3.3 per 10,000 kids had autism. Could the researchers have been wrong? Was the real number actually very different? Maybe. Perhaps the real rate was as high as 5 per 10,000 or as low as 2 per 10,000. But, ballpark we are talking about 3.3 out of 10,000 kids with autism or roughly 1 in 3,300.
Today, we know autism impacts 1 in 68 kids (according to the CDC’s latest figures, some numbers show it closer to 1 in 50). Based on the numbers from North Dakota, that’s 45 times more kids than in 1987. But, it’s worse than that if you think about it a different way:
In 1987, if you had a million kids, 330 would have autism. Today, if you have a million kids, 14,700 have autism.
Let me say that again. In 1987, the rate of autism prevalence meant for every one million kids, 330 had autism. With today’s number, about 45x higher, you’d have 14,700 kids with autism.
If you’re to believe the numbers from the UK, you have to believe that the research on autism prevalence done in 1987 was simply wrong. The researchers in North Dakota missed a ton of kids, and wildly under-reported the actual number of autism cases.
How many kids did they miss? Well, and this is the best part of the analysis, if the North Dakota researchers found 3.3 kids per 10,000 when they should have found 147 per 10,000 kids with autism, they missed 97.8% of autism cases in North Dakota.
That means in 1987, the pediatricians, psychologist, and other forms of screeners (not to mention all the parents!) in North Dakota were missing 97.8% of kids with autism and just letting them slip through the cracks. These kids, all 97.8% of them, were sitting right next to you in class and you, and their parents and doctors, never even knew it!
Changed criteria?
Today, the argument du jour in explaining away the fact that 97.8% of kids with autism fell through the cracks in the late 1980s is that the criteria for autism have changed and broadened, thus creating more kids with a diagnosis. Of course, no one making this point tells you exactly how those criteria have changed, so it’s an effective way to pour cold water on a debate.
The North Dakota study, the one above that produced 3.3 kids per 10,000 with autism, used the DSM-III criteria for autism. Today, we use the DSM-IV criteria for autism. Is DSM-IV radically more expansive than DSM-III? Let me ask a different question: was DSM-III so narrow as to miss 97.8% % of the kids who today have an autism diagnosis?
There’s only one way to know, let’s look at the actual DSM-III criteria for autism:
DSM III (1980): Diagnostic criteria for Infantile Autism
A. Onset before 30 months of age
B. Pervasive lack of responsiveness to other people (autism)
C. Gross deficits in language development
D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.
E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.
F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.
That’s it. That’s the DSM-III criteria for autism. Parents, what do you think? Remember, 97.8% of the kids of parents reading this site should NOT meet the criteria above.
Anyone? Anyone with a kid with an ASD diagnosis who would have been given a clean bill of health in 1987? Remember, 97.8% of you should be out there! I’m going to take a non-risk here and say that those criteria sound exactly like our kids today. Exactly.
I look at scientists and doctors who say autism hasn’t grown, who say it’s all expanded criteria. Then, I go look at the details, I read the old criteria. I run the simple numbers, I read the published studies. And, I say to myself (and anyone who will listen): how can you be so stupid, or so immoral, or so uninterested in the worst health tragedy of our time, and try to convince the world that everything is just fine? The numbers, and the details, scream the truth.
North Dakota does a double-check
Oh, and back to North Dakota for a second. Turns out the scientists and doctors who did that study in 1987, the one showing 3.3 kids per 10,000 with autism, they were damn serious about making sure they were accurate in their count. You see, they followed the same birth cohort, the almost 200,000 kids who made up their original study in 1987, for 12 years. They published a second study, thirteen years later in January of 2000, called “A prevalence methodology for mental illness and developmental disorders in rural and frontier settings”. What did the study conclude? Hear from the authors:
“The results of the prevalence study [the original study in 1987] were compared with the results of a 12-year ongoing surveillance of the cohort. The 12-year ongoing surveillance identified one case missed by the original prevalence study. Thus the original prevalence study methodology identified 98% of the cases of autism-pervasive developmental disorder in the population. This methodology may also be useful for studies of other developmental disorders in rural and frontier settings.”
So, these researchers went back 12 years later and checked their work. With a couple of hundred thousand kids, they found they had undercounted their original estimate of prevalence of autism in North Dakota by exactly one child. If you believe the numbers coming out of the UK, these researches should have found over 1,800 kids with autism. They didn’t, they found 59. Why? Because that’s how many kids had autism in the late 1980s, a hell of a lot less than today, that’s why!
Stop the madness
Dishonest agencies and scientist are trying to normalize the rate of autism before our very eyes, even though no supportable details exist to back them up. If autism was always here, just the way it is today, than no one can be blamed for anything. Gene research can continue. Vaccine schedules can keep growing. Why bother with recovery? Autism is just part of our society…
Join me, parents, and call bullshit on these idiots, call bullshit on the attempted whitewash of what has been done to our kids.
97.8% of kids were missed? That is, in a word, impossible.
J.B. Handley is co-founder of Generation Rescue
Dear JB Handley, Today (2016) 1 in 45 children have Autism. That is children from 3 to 17 years old. They purposely left out children below 3 and higher than 17 otherwise there would be greater numbers. The CDC is complaining that the increase from 2 years ago of 1 in 68 is because the questions were changed. If we changed the questions on a Cancer survey-we would still have cancer. Forbes is crying "Foul!" 1 in 6 children now have Developmental Disabilities and that figure is from around 2009-2010. It is years behind the actual incidence.The increase of ASD is NOT because of refrigerator mothers, Not because children live near highways (they lived near highways for decades) Not because of the air, not because of older parents, Not because moms have babies close in age (They have had babies close in age for hundreds and thousands of years) and Not because of Questions.. A child with little to no speech or eye contact, rocking back and forth, unable to eat, while throwing things around a classroom would NOT have gone Undiagnosed 25 years ago! See,"Recovering Autism, ADHD, & Special Needs."
Posted by: Shelley Tzorfas | January 09, 2016 at 10:53 PM
Excellent article, even more so now with the new increased numbers than it was originally!
I am irritated by the opening Republican bashing, though, as it unnecessarily creates division and infighting between us. The Democrats' games manipulating the healthcare discussion that resulted in shutting out at least half the country from having a say in what was produced was beyond shameful. And offered nothing helpful to our kids.
Even more importantly, the blame for the child-damaging environmental issues is very much bipartisan. Let's keep our focus on protecting our kids over getting sucked into the unhealthy, destructive political games that are ruining our country.
Posted by: Grace | November 23, 2015 at 01:44 AM
Dear J.B. Handley,
Your point is dead on, and your analysis of the autism numbers perfect. You uncovered all the bull crap in the medical establishment's arguments.
I only have one suggestion for you. Correct the 400% return in you stock example. The correct answer is 300%.
Yes, when you lose 75% of your portfolio, you'll need 4 times as much money to get back to your original portfolio value. However, your portfolio will only need to grow 300% from the new lower value, as the 25% you were left with remains in the portfolio (you are not starting from zero).
Mathematically, the answer can be obtained by solving for "return" in the following Future Value formula:
Future Value = Present Value ( 1 + return )
Substituting the numbers in your example as follows:
100 = 25 (1 + return)
and solving for the "return," will give you 3 or 300%.
Sorry to nit pick, but I teach this stuff for a living and I would hate for someone to bad mouth your autism numbers over such a trivial error in the use of the term "growth" on an unrelated field.
Thank you in passing for all your hard work with Generation Rescue. Including mine, you've done so much to help so many families in need. I'll be for ever in your debt.
Posted by: Emmanuel Morales-Camargo | November 18, 2015 at 10:50 AM
Thank you, J.B., I've referenced this article many times in my comments with fury, and always noted that it was written in 2009, and the figures had gotten much, much worse since that time. Thank you for updating it. Absolutely irrefutable, just a generation ago only three in every 10,000 were autistic, and now it's 278 out of every 10,000. And all they have to do is say, That's not true, how silly of you, how could a disability as severe and permanent as autism have possibly become 93 times as common as it was thirty years ago. Do you really think we're that stupid or that criminal? I LOVE the fury you show in this article! Bravo!
Posted by: cia parker | February 01, 2015 at 10:52 PM
Love this article. I've referenced it several times in previous posts. It really captures the magnitude of the disaster in terms of children affected. One important point about the study that i think was brought up before is that it was done back at a time when autism wasn't controversial. Back then it was just a mystery and no one was going to lose their job over it. No big money was going to be lost. No reputations would be ruined. No public outcry. None of that would happen by just simply asking how prevalent a rare disease was across a northern, largely rural state. But within a decade, oh how things would change. (Brick Township NJ)
Posted by: Adam Mortenson | January 28, 2015 at 04:48 PM
So sad that this is even more relevant today than it was in 2009.
Posted by: Adriana | January 28, 2015 at 03:20 PM
David
I suspect that whatever Bob and Suzanne Wright thought they were doing that Autism Speaks was always a CDC project.
http://www.ageofautism.com/2014/07/an-article-for-independence-day-the-american-revolution-and-health-tyranny.html
John
Posted by: John Stone | January 28, 2015 at 03:11 PM
JB, It's clear Autism Speaks is an ally of CDC, Fauci, et al.
They pay themselves huge salaries by pretending to care, and conning the public. To my knowledge they have NEVER critiqued the toxins in all the vaccines.
You are indeed an admirable hero --- thanks.
David M. Burd
Posted by: david m burd | January 28, 2015 at 03:04 PM
JB .. you wrote:
"In America’s health care debate, Republicans seem to have the upper hand by using a tried and true PR strategy: confuse the living hell out of everyone and shout really loud while doing it."
As bad as Republicans have been on the issue of American health care .. the highly successful, decades long, determined effort .. to "confuse the living hell out of everyone" .. has been a "bi-partisan" effort .. just saying.
With all due respect, in my humble opinion .. "confusion" in the national debate on health care .. has nothing to do with either established political party .. I would suggest the "confusion" lies squarely upon the shoulders of the "unelected, appointed" public health officials overseeing entrenched .. federal regulatory bureaucracies .. CDC, HHS, FDA, etc.
Which is why entire industries .. including health care .. donate huge campaign funds to BOTH established parties .....
Sorry for going off topic on your very insightful review of the statistical manipulation you presented .. and .. yes .. as a proud grandfather of a lovable 15 year old ... non verbal boy .. "regressed" tweleve plus years .. I will gladly and proudly join you in "calling bullshit on these idiots" at every opportunity to do so.
God bless you for all you have done and continue to do.
Join me, parents, and call bullshit on these idiots, call bullshit on the attempted whitewash of what has been done to our kids.
Posted by: Bob Moffitt | January 28, 2015 at 02:40 PM
Thank you, JB. You hit on the heart of everything. As long as officials pretend that autism is a mysterious genetic disorder that's always been around, it's no big deal. And if two percent of kids naturally have autism, that's just the way it is. Let's learn to accept it and accommodate the special needs of these kids.
This lie is vital to covering up the damage being done to a generation of children. If there's been no real increase in the autism rate, then autism has nothing to do with the dramatic increase in the number of shots our children receive.
This is why no official ever goes on the record calling autism "a crisis." "Serious public health concern" is the strongest language I've ever seen from anyone at the CDC regarding autism. (That sounds like it's on a par with clean drinking water and sanitary restrooms.) And every time another jaw-dropping increase in the autism rate is announced, there's always some official who solemnly declares that they're not sure if THIS increase means more kids actually have autism.
So where are the adults who act just like our children? No one has ever been able to find them--especially the ones with severe autism, whose symptoms are easily recognized. Autism is impacting our schools and not our senior centers. Officials know exactly what they're covering up and somehow they manage to sleep at night.
This is what I've written in the past about "The Really Big Lie About Autism."
2006 The Really Big Lie About Autism
http://www.scoop.co.nz/stories/HL0608/S00224.htm
2007 The Really Big Lie About Autism
http://www.counterpunch.org/2007/02/27/the-really-big-lie-about-autism/
2011 The Next Really Big Lie About Autism - AGE OF AUTISM
http://www.ageofautism.com/2011/02/the-next-really-big-lie-about-autism.html
Posted by: Anne McElroy Dachel | January 28, 2015 at 02:26 PM
Oooh JB, I'm with you. I call BS
Posted by: JSBmama | January 28, 2015 at 02:25 PM
Actually, Greg, Autism Speaks is misreporting the prevalence number in a fairly catastrophic manner. On their website they state:
"Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 68 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years."
In the mid-70s (forty years ago), the Autism rate was 1 in 10,000. Today, it's 1 in 68. That's a 147-fold increase!!
Autism Speaks is understating the rise in the Autism rate on their website by 13,700%!! That's a ridiculous, blatant, horrifying misrepresentation!!! In fact, it ticked me off so much that it's the topic of my next AoA post!!
The Autism rate is up 14,700% in 40 years.
Posted by: JB Handley | January 28, 2015 at 12:51 PM
Okay; they want to go that way -- we all are on the spectrum let us try the disesae Kawasakis.
I got this email from a bunch of clueless idiots today about wanting my DNA.
http://us5.campaign-archive2.com/?u=b88727d9b08e6ea558d239d6e&id=53642d754b&e=b98625d3ef
There for a while it was just those Asians.
and now lookie here:
"Did you know that susceptibility to KD is different depending on the genetic background of the family? While children of Asian descent have the highest chance of getting KD, children of African American descent are the next most susceptible group.
The National Institute of Health is sponsoring a study to try to understand the unique susceptibility of children of African American descent for KD. This project is being conducted through collection of DNA samples at the Kawasaki Disease Research Center at UC San Diego, and they NEED YOUR HELP!"
They are not wanting -- I take it my blonde, bue genes then? Not looking there? And neither of my two adult ginger kids? But they both had Kawasakis???
Jett Travolta -- not looking at his genes?
Here is another environmental disease that is genetic. It is underdignosed though cause there is atypical forms of it and our doctors misdignose it as Roseola.
Posted by: Benedetta | January 28, 2015 at 12:42 PM
Even Autism Speaks are not perpetuating the big lie of no real increase, despite not calling out their 'friends' when they do. At first I was impressed, but then I got thinking, what if they are simply seeking to protect their donations by conceding that there is indeed a problem.
Posted by: Greg | January 28, 2015 at 12:09 PM
"If you caused an increase of autism by (some GOD AWFUL NUMBER) wouldn't you try to cover it up too"
J.B. Handley.
Nuff said.
Posted by: Benedetta | January 28, 2015 at 11:25 AM
They plan on doing this - they have set wheel in motion two years ago - Rewrote the DSM manuel.
They can not/will not be turned - no matter what.
I don't understand people that cannot predict the future by their actions -- if they have proved themselves through the education system to have some intelligence.
Well I guess they can predict the future - just their own small personal future - not getting the bigger picture.
Posted by: Benedetta | January 28, 2015 at 11:20 AM
A school educational psychologist once told me we could ALL be defined as 'being on the autistic spectrum', depending on what parameters were used to define the condition. Certainly, some of my more 'eccentric' traits could be defined as such!!
A week or so back, BBC Breakfast TV interviewed a middle aged man about his recently diagnosed autism. I believe the singer Susan Boyle has also been told she has autism. Perhaps we need a new and more realistic definition of autism, which examines whether or not the person is able to live an independent life. This, after all, is the most important aspect of this serious threat to humanity, alongside the serious co morbidities also now admitted to be a part of autism spectrum disorders. Susan Boyle is doing very well, and the man interviewed was perfectly capable of holding down a job and supporting himself.
Autism has a wide spectrum. Many of the concerned parents who contribute to this and other ASD sites are coping with severely affected children. Perhaps 'coping' is the wrong word. There's very little official acknowledgement out there, far less official support for those parents and their children. The system encourages 'chemical coshes' for 'challenging behavior', difficult enough to handle with a small child, but what happens when the child becomes a fully grown teenager? ...or wanders?....or has to be restrained from running out into busy roads?....or tries to climb out of car windows whilst the car is being driven?(The latter two happened with my grandson).
Hearing other, horrific stories, (and keep telling them please to counteract those much vaunted 'positive' autism cases touted in the press and media), made my family realise we were 'lucky' if that's the word. My grandson is articulate, clever and kind, but he will never lead a normal life. His parents worry constantly about what will happen to him when they die. He has epilepsy, and terrible bowel problems, which mean he is never well. He also has very poor gross and fine motor skills.
Thanks to Brian Deer & Co, my grandson receives no treatment for his bowel problems, other than constipation powders. The only compassionate, relevant care and diagnosis was provided by the clinical team at the Royal Free Hospital, London 1998-2002, under the leadership of that wonderful paediatric clinician Professor Walker-Smith, now fully exonerated by the High Court from Brian Deer's false GMC allegations.
Posted by: Jenny Allan | January 28, 2015 at 07:49 AM
Excellent points by JB in this article which originally published in September 2009 was in part a response to the publication of Brugha's unbelievable English adult autism study, of which a more detailed review can be found here:
https://childhealthsafety.wordpress.com/2010/02/10/uksurveyautismlink/
Beyond the preposterous of projecting onto the UK population from 19 cases based on a non-standard diagnostic there were many other anomalies. To get to 1% figure they had to project as many as 54 further cases that they had missed although second phase screening had involved nearly 10% of the original sample from what was supposed to be a typical population (ie very high, and why would they miss them if the study had been well designed in the first place). The original survey had originally been screening for Asperger Syndrome but the "data" was relabelled as "autism" between the original publication in 2007 and 2009, while a further study to identify autism cases was abandoned. There are many more points in the CHS article but I think it is important to note that not only was a non-standard diagnostic tool used but the people making the diagnosis were not qualified to do it.
A commenter "Harry" remarked further on AoA in December 2013:
"John Stone
"Let's be specific about "flawed assessment criteria".
"Brugha took "diagnostic instruments" for standardised diagnoses of autistic conditions and watered them down.
"What does diagnostic "instrument" mean?
"A water or electricity meter is an instrument which is calibrated against a standard to ensure it accurately measures how much water or electricity is used regardless of whose home it is installed in anywhere and can be swapped for another and their readings should accord to a reasonable degree of accuracy.
"A diagnostic instrument serves the same kind of purpose. A key instrument is ADOS [Autism Diagnostic Observation Schedule (ADOS)]. ADOS etc were developed and "calibrated" against large numbers of diagnoses of autistic individuals.
"If you make the measurement criteria less rigorous it is like making the water or electricity meter record 10 times the amount of water or electricity than is used.
"That is how Brugha did it. He watered down the diagnostic criteria so far with no standard or calibration which meant there is no way of knowing if any of the people supposedly diagnosed were even close to having an autistic condition.
"So you are right but this explains in day-to-day terms why."
It is interesting that this ridiculous survey came to be cited a number of times by IACC and NIMH chief Tom Insel as evidence of the stability of autism incidence, typically showing only bureaucratic interest in the result and complete indifference to the methodology.
"Which makes a recent report from England especially surprising. In a careful epidemiological study based on a national sample (n = 7,461 adults) from 2007, Brugha and colleagues did careful diagnostic assessments based on standardized interviews. They found that familiar rate of about 1 percent in adults across the entire age range without a significant reduction in the older part of the sample as one would expect if the prevalence had increased in recent years."
http://www.nimh.nih.gov/about/director/2012/autism-prevalence-more-affected-or-more-detected.shtml
The 1% incidence finding by Brugha was declared to be correct to a 95% confidence interval. But presumably if you treat data so high-handedly you can find whatever you want as much as 100% of the time.
Posted by: John Stone | January 28, 2015 at 06:55 AM