Autism Not Really on the Rise? 96.7% Impossible.
"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 100 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 100 kids. Based on the numbers from North Dakota, that’s 33 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, 10,000 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 33x higher, you’d have 10,000 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 100 per 10,000 kids with autism, they missed 96.7% 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 96.7% of kids with autism and just letting them slip through the cracks. These kids, all 96.7% 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 96.7% 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 96.7% 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, 96.7% of the kids of parents reading this site should NOT meet the criteria above (for the record my son, unfortunately, meets the 1980s criteria for autism, too…)
Anyone? Anyone with a kid with an ASD diagnosis who would have been given a clean bill of health in 1987? Remember, 96.7% of you should be out there! I’m going to take a risk here and say that those criteria sound a hell of a lot like our kids today.
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, just ask Lisa Jo Rudy.
Join me, parents, and call bullshit on these idiots, call bullshit on the attempted whitewash of what has been done to our kids.
96.7% of kids were missed? That is, in a word, impossible.
J.B. Handley is co-founder of Generation Rescue and a contributor to http://Age of Autism..
Dear Parents, I wanted to make the point in case it hasn't that it's also very dangerous to give your child Tamiflu. I made the mistake of giving it to my daughter which resulted in a temporary(thank God) paralysis of her legs. She dragged her 8 year old body around by using her arms to get from one room to the other. If it wasn't for my faith, I would have been looking to kill somebody. She got very sick when she was 7 yr.old from the DTP shot. We think it was the Pertusis that did it, a friend's son had a similar experience. It was a year later we realized she had auditory processing disorder. She will not receive any more vaccines and PLEASE do not give any children Tamiflu no matter what your doctor says. My Chiropractor confirmed "It has been linked to neurological damage".
Posted by: Elizabeth Winters | October 27, 2009 at 01:06 AM
Thank you ONCE AGAIN JB. He tells us that THE BIGGEST AUTISM LIE IS STILL A LIE! THERE ARE REALLY MORE KIDS WHO HAVE AUTISM!
Looking at a peer-reviewed study of children in North Dakota done in 1987
he shows us that truth............A ONCE RARE DISORDER IS NOW EVERYWHERE (AND STILL OFFICIALS PRETEND IT ISN'T HAPPENING).
JB slams the recent British survey that has amazingly found the missing adults with adults.
It sent chills through me to read the actual Diagnostic criteria for Infantile Autism in 1980.....it was my son..............and I'm sure most other parents I know with affected children will feel the same.
So what was the big improvement in the diagnosis that woke doctors up to all the kids with autism?
The 1980 symptoms are clear and undeniable.
As I read this I kept thinking........HOW COULD DOCTORS HAVE MISSED THESE KIDS???
In truth....they're recognizing them today BECAUSE THERE ARE SO MANY OF THEM WHO WERE NEVER HERE BEFORE!
Anne Dachel
Media
Posted by: Anne Dachel | September 30, 2009 at 12:12 AM
Curtis, I did something for you in Photoshop about flu shots. Made ya a little poster.
http://i38.tinypic.com/bjep2o.jpg
Posted by: bensmyson | September 29, 2009 at 02:57 PM
I worked with special ed students in the 70's and 80's-basically resource-and often one on one. In New Jersey school where I worked-we had one special ed class in a big elementary school. There were no children with autism. They grouped all disabilities in one classroom(all ages from 5-12 years old) and there were about 10 children in the classroom with everything from Downes Syndrome to Emotionally disturbed.
Maurine
Posted by: Maurine Meleck | September 29, 2009 at 11:03 AM
Never mind Twyla,
I looked at some information on epilepsy and they don't really keep any records????
Also it said the word---- remission????
My son's neurologist said there would never be any remission????
Now I am just confussed??
I am tired, we finally went to the apointment with the psych guy today, asked him to tell us what to expect, do I need to move the earth and get my son SSI or what in the heck was going on? Is it Tourettes, or PDD-NOS or aspergers, only thing for sure I thought was epilepsy and by the time we finished talking to pysch??? He kept asking if we had ever had a 24 hour EEG. What does it matter??? Now??? We finally caught it (after 17 years) on one of those short EEGs.
The guy spent some time explaining the difference in inherited Tourettes and acquired tourettes, Inherited aspergers and acquired aspergers, Inherited PDD-NOS and acquired PDD-NOS. Tiresome!!!!!
Posted by: Benedetta Stilwell | September 29, 2009 at 12:41 AM
Look Guys:
Twyla
has found an increase rate from 1992 to 2003! that recent!!! So how is the CDC going to side step that and go for really larger undignosed adult populations????
Now go Twyla, my little hard working blood hound and find the stats for epilepsy??????????/
Posted by: Benedetta Stilwell | September 29, 2009 at 12:15 AM
Beth;
She is young! She don't know. That is what a good education does for you. Ain't it nice we spend money to educate our kids and instead of learning they get propaganderized!
I got the same thing about vaccines are good and anyone that says different are wrong! Same bunch of garbage the nursing students are still getting to this very day.
Ahhh to be in charge of the subject matter at the Universities of this country.
Posted by: Benedetta Stilwell | September 28, 2009 at 11:59 PM
Fabulous piece as usual, J.B.! To all the folks crying politics, don't get your britches all in a twist over a little jab. I lean left of center and married a conservative republican; autism has taught us to see the barbs on both sides for what they are (entertaining and an effective means to get a point across). This is no place for thin skin -- toughen up so you can take it and dish it out, our kids depend on it!
Posted by: mlinn | September 28, 2009 at 11:46 PM
With thousands of Thimerosal/ Autism cases standing in line at the CDC Vaccine Court in Atlanta right now...
WHY the H are they setting up to give every 6 month infant (and above) a 75+ X dose of mercury in the next month or so ??
I am not a photoshop person, but can someone make a poster of how many needles/injections this would be for a 135 pound Dr. Fancy..... to equal the 2009 "toddler rate" of Thimerosal in the H1N1 and Seasonal flu shots ???
thanks again, jb
Posted by: curtis | September 28, 2009 at 11:15 PM
Thanks for this much needed article, JB!!
For comparison with more recent times in North Dakota, see http://www.fightingautism.org/idea/reports/ND-Autism-Statistics-Prevalence-Incidence-Rates.pdf
Using data from the school system, they found:
240 children with autism in 2003 (Fig 2).
1,275% cumulative growth rate of autism from 1992 to 2003 (Fig 3).
25% average annual growth rate for autism from 1992 to 2003 (Fig 4).
1 out of 397 (25/10,000) children has autism in 2003.(Fig 6).
Posted by: Twyla | September 28, 2009 at 11:11 PM
sydney morning herald just announced a girl dying a few hours after Cervarix vaccine.
Posted by: jen | September 28, 2009 at 11:03 PM
"Dishonest agencies and scientist are trying to normalize the rate of autism before our very eyes..."
On this note, I recently met a 22 yr. old grad student who is getting her masters in special ed and who works with autistic kids. I commented that it's unfortunate that she's got job security due to the increase in autism. I about keeled over when she said there's not really more autistic kids today...it's just better diagnoses. OMG!
Normalizing what we see today is exactly the agenda and when the schools that teach special educators are drinking the kool aid - it's especially tragic because a) they're supposed to be the experts and b) if they are not among the most alarmed folks out there, then 1-in-100 will be accepted as normal in no time.
Posted by: Beth | September 28, 2009 at 10:12 PM
"The fact is that today many famous people have autistic children.
How many famous persons you know that had autistic child twenty years ago."
Luke, I can only think of one. The actor that played Father Mulcahy on MASH, William Christopher. He and his wife wrote a book about their son, "Mixed Blessings". I remember watching a MASH reunion show in the late 90s/ early 2000s and he mentioned his son. Kudos to him.
Posted by: Dana | September 28, 2009 at 09:54 PM
My babysitter (when I was a tot in the 60s) went to Bridgewater State Teachers college in Massachusetts and became a special ed teacher in the early 1970s. She saw ONE child with autism. And was taught that it was so rare, she'd likely never have a student in her class. Her grand daughter has autism. Her next grand daughter has sensory issues. Not sure on the third grand daughter.
When we were first concerned about Mia and then started to get concerned about Gianna, our pediatrician,Part of the CHOP healthcare system told me flat out, "Don't worry. I've never heard of a family with more than one child with autism." He was in his 40s at the time, hardly a pup.
Posted by: Kim Stagliano | September 28, 2009 at 09:35 PM
We de-instiutionalized most of our larger state hospitals in the '70's. The argument that families sent these children away (by the hordes if we are agreeing with the 1 out of 100 autism rate was true then), all of those autistic adults would have been deposited in group homes, shelters, homeless and on our city streets. They would have been all around us and still would be. They would be a huge part of our cultural picture and they're not.BECAUSE THEY DON"T EXIST.
Posted by: alison macneil | September 28, 2009 at 09:30 PM
The numbers game really confuses me as well. It would help if it were made clear whether or not the rate of 1 in 150 (now 1 in 100) is specific to "Autistic Disorder" according to the DSM-IV and nothing else. I've heard several medical professionals state the the "broadening" of the criteria included counting those with an autism spectrum disorder of any kind, like PDD-NOS and Asperger's. Therefore, all those "quirky" kids were missed in the past - consequently, the numbers today appear artificially inflated. The public can certainly buy into that, as we can all remember some odd ducks growing up. There were most definitely a lot of kids with milder forms of ASD that went undiagnosed. I myself was not diagnosed with Asperger's until 17 years of age.
No one remembers seeing the severe cases we see in the schools today - but it would clear up a lot of doubt if the criteria behind the counts were identified and accurately reported.
Posted by: Sara | September 28, 2009 at 09:16 PM
Andrea B, see this link:
http://www.examiner.com/x-9121-LA-Special-Needs-Kids-Examiner~y2009m9d26-CDC-quietly-revises-autism-numbers-to-1-of-US-children
Posted by: MB | September 28, 2009 at 08:21 PM
Andrea,
The CDC is stating that figure now. The page itself was quietly updated, it seems.
http://www.cdc.gov/NCBDDD/autism/data.html
http://www.examiner.com/examiner/x-9121-LA-Special-Needs-Kids-Examiner~y2009m9d26-CDC-quietly-revises-autism-numbers-to-1-of-US-children
Posted by: Josh Day | September 28, 2009 at 07:59 PM
Once again;
If the rate of autism has gone up from 1 out of 150 to 1 out of 100, then epilepsy has gone up too.
Since one out of four childern with autism has epilepsy (in my daughter's nursing book) then what is the rate of epilepsy in these quirky adult populations that they claim already exist??????
Posted by: Benedetta Stilwell | September 28, 2009 at 07:57 PM
Margie Staniszeski-- if your son and daughter in law won't read Jenny McCarthy's book or evidence of harm, these links might at least spark interest:
http://www.youtube.com/watch?v=E1z7KSEnyxw
http://www.youtube.com/watch?
v=LkyXaAojoxg&feature=related
http://www.youtube.com/watch?v=_j0myExzN2M
http://www.youtube.com/watch?v=zrIM2hwrLoc&feature=related
http://www.rollingstone.com/politics/story/7395411/deadly_immunity/
http://www.huffingtonpost.com/david-kirby/the-next-big-autism-bomb-_b_93627.html
http://www.viddler.com/explore/ziggy/videos/1/
Posted by: Gatogorra | September 28, 2009 at 07:07 PM
The fact is that today many famous people have autistic children.
How many famous people have autistic children twenty years ago?
How many famous persons you know that had autistic child twenty years ago.
It seems too obvious that the autism epidemic is real.
Posted by: Luke Tunyich | September 28, 2009 at 05:54 PM
So now quirky people who can answer surveys are being identified and enumerated as autistic? If autistic is the new classification for quirky, we just need our own new classification for our non verbal, low functioning, stimming, diaper-wearing kids so that they and similarly affected adults can be enumerated by that criteria. What would our new category be, developmentally derailed or possible socially and functionally fragmented (SAFF)? Let them go hunt the adult SAFFs through surveys with personal physicians and caregivers and see whether the prevalence is as high there as it is now in our schools. I’ll just keep working with my son hoping he progresses to quirky… I mean the new Autistic category. Maybe I just need to get him into one of those good old magnificent top secret schools out of the sight and hearing range of the general public where for decades and without the use biomedical interventions for their GI, mito, toxicity, and autoinflammation issues they have been transforming disconnected shriekers like my son into the autistic survey-taking adults they are today. Sign me up!
Posted by: bhowelladams | September 28, 2009 at 05:32 PM
Oh I forgot to add the money to the crooked media
Posted by: Richard | September 28, 2009 at 04:55 PM
Great article and let me add my 2 cents. The reason the charade continues is that it is all about the money $$$$$$$$.
money to pharma,money to doctors,money to government lawyers and money to crooked politicians.
If we could stop the money from flowing we would have the truth by the truckloads.
Posted by: Richard | September 28, 2009 at 04:53 PM
"Today, we know autism impacts 1 in 100 kids."
Where did you get this figure?
while you are very precise in stating why North Dakota figures are right why don't you cite the source of your estimate?
Posted by: Andrea Bisognin | September 28, 2009 at 04:53 PM
to: Margie Staniszeski do everything in your power to stop your son from vaccinating your granddaughter any further.
My son too is blond and blue eyed and was diagnosed with asthma by two.
I knew something was wrong when my grandson was diagnosed at six months with asthma. I started to voice my concerns, but did not want to interfer. OH IF I ONLY HAD SPOKE UP LOUDER AND STONGER AND SOONER, MY GRANDSON MIGHT NOT HAVE AUTISM NOW!
My grandson's doctor was loudly saying oh no he is fine no problem.
You are right and you tell your son and make him listen!
Posted by: Nora Brock | September 28, 2009 at 03:02 PM
@ Margie Staniszesk
Sounds to me like you are doing the right thing by researching, I would caution you however in pressing too hard on this or anything like it with your son and daughter in law. My wife knew something was wrong from the get-go, on the other hand it took me a couple of months due to some basic papa's little boy denial. It's a bitter pill to swallow. Not many have the stomach for it.
Research your your community and find an autism group, talk with them. There are a number of resources available to you to help you better understand the dynamics.
That's my two cents. Best of luck.
Posted by: bensmyson | September 28, 2009 at 02:56 PM
" The reason there are no notes like that in his file is because as my largely unvaccinated child ... He never had any of those odd behaviors, rashes, viral issues, diarrhea problems, high temps, etc... :) " Sue M.
That's science!
Posted by: bensmyson | September 28, 2009 at 02:47 PM
Great piece, JB, as usual.
The expanded criteria explanation is an obvious BULLSHIT, but thanks for digging it up for us. Most pediatricians mention this expansion of criteria as their favorite explanation, but you can bet not one of them has actually compared the old and the new criteria. My son would have met that old criteria also. One thing they need to explain is why is it that my son has dropped several of those criteria after GFCF diet and other biomedical inteventions were introduced? Why do many children get their ASD diagnosis dropped?
By the way, speaking of bullshit, your friend McNeil is publishing a preemptive piece today exonerating the H1N1 vaccine before its expected side effect "problems" start to roll in. In summary, he says that if you get the swine flu shot and you get paralized or die afterwards it will most likely be just a coincidence. See, it's crisis control before the crisis occurs, just in case. Judging from the many reader comments to his NY Times piece, this line of bullshit isn't selling well anymore.
Posted by: WE SHALL OVERCOME | September 28, 2009 at 02:20 PM
My mother is 83 years old, had me at the age of 43. My father was in his late forties when I was born so my immediate family stretches back a little further than usual as do their unusually sharp memories. My mother officially has eidetic memory. Before he died- with his wits intact- my father admitted he'd never encountered an individual with autism in his life until two of his four grandchildren were stricken. My father was raised for the first four years of his life in an orphanage which also housed children with Down syndrome-- but still no hand-flapping, screaming children. He lived in New York City most of his life, travelled to Europe for WWII, visited Mexico, regularly went to Maine and around the country. He was very sensitive to the state of people around him and his friends said he missed his calling as a fireman-- recalled his penchant for rescuing people from diabetic seizures: he witnesses several and used to dig around in the person's pocket for the lump of sugar that diabetics always used to carry, would stick it between their teeth and stay with them until they revived and the ambulance came.
My mother said the only person with autism she'd ever seen in her life prior to seeing her grandchildren regress was a girl in art school who may or may not have had aspergers. It was quite noticeable and the girl's strange behavior got past no one in the school.
My mother also travelled a great deal, lived and worked in several states and major urban areas. The interesting thing is that if the authorities are claming that children with autism were immediately institutionalized and this is why no one ever saw them, then why are there now more children diagnosed with autism than there were individuals of any age or any diagnosis in institutions or residential care (or even on the social security roster for mentally disabled) circa 1959? If they were hiding, it must have been awfully deep cover because there's no documentation that such a population ever existed and clearly they weren't out in the open. People with autism in the current numbers simply didn't exist fifty years ago.
Posted by: Gatogorra | September 28, 2009 at 01:44 PM
Great post JB, any comment from CDC. What does M. Yeagin-Allsoop and E Trevethan have to say?
Posted by: DadtoAutism | September 28, 2009 at 01:29 PM
"********* feels a lot of mom’s concerns are prompted from reading on internet. told her there is more bad information about autism than substantiated information. ******"
This struck a nerve with me. When my middle son was exhibiting odd behaviors along with strange medical concerns (ie constant diarrhea, odd rashes, high temps, undigested food in stool, etc) I began looking on the internet - mainly due to lack of support from our pediatrician at the time. My son was scoped for Celiac (which turned out negative) ... which made our pediatrician happy... me, honestly, not so much because at least with Celiac there would be a reason why my kid couldn't tolerate food. Anyhow, that's when I turned to the internet and made the connections between vaccines given, illnesses, onset of odd behaviors, etc...
Around that same time is when I got a similar note (as above) in his file from our pediatrician at the time. I got the verbal scolding along with it.... The, "oh yeah, don't go looking at the internet... there's false information out there that has been proven wrong, blah, blah, blah...". These doctors want you to remain ignorant. They want to demonize the internet (and the experiences of other parents) because the doctors know that when you start digging... You will eventually figure out that they are full of sh*t.
It's funny because I don't have any notes like that in my youngest son's medical file. No little notes about his 'paranoid' mommy. No notes about how the internet is bad, etc. etc... None of that. Is that because I wasn't searching the internet at the time? Nope. In fact, I was researching MORE at that time. The reason there are no notes like that in his file is because as my largely unvaccinated child ... He never had any of those odd behaviors, rashes, viral issues, diarrhea problems, high temps, etc... :)
Posted by: Sue M. | September 28, 2009 at 12:29 PM
Why don't we say what autism really is? A toxic viral bacterial fungal insult on the body of a developing child, perpetuated by our vaccine policy, new vecotored illnesses (tick born diseases), GMO and MSG foods, Fluoride, GrossNational Product industries which are coal fired, farming and it's methods, pharmacuetical companies, ACOG or the person who delivered your child by asphyxiation (ICC), doctors/dentists, governmental officials who condone these practices, EMF industries, Carcinogens of all sorts, MOLD, and Endocrine Disruptors. In other words, what is autism but the modern reality of our creed, that bringing good things to life, are affecting our children.
Diabolical is not on the border here, it is here. It is a eugenics plan of major proportions harolded in in the Kissinger era, of which will soon be unleashed on us in a second phase, where a rush to making an experimental vaccine on people, of which carries the following ingredients and organisms...aka, the swine flu...mercury, spermacides, squalene, contaminations of yersinia pestis or the black death, and leishcman (sorry spelling?)-(skin reactions), and god knows what else like mycoplasma, etc.
It is any wonder the general population, not just our kids, are chronically unwell, have major cancers, thyroid diseases, infertility, diabetis, asthma, alzheiemrs to autism, lyme disease (which mimics most of these), parkinsons, cancers of all types from lymphoma, to myeloma to ewings to what killed Kennedy. I am sure of this as plain as the nose on my face.
The perfect way to disway this plan it to call things IDIOPATHIC, or MYSTERIOUS, or GENETIC, UNKNOWN, or OVER DIAGNOSED. The perfect way is to multipy the poisons with synergistic toxins, where there isn't just one thing that you can pinpoint, and or a time that you saw something exactly. It is a toxic immune damaging buildup that can't point to one source, but many.
Good go world, thanks for the memories, not.
Posted by: Kathy Blanco | September 28, 2009 at 12:23 PM
I need help and information! I'm new to Age of Autism. A friend who has a grandson with autism gave me the link to this page today after we were talking about my fears for my 1 year old granddaughter, Clark. Let me give you a brief 'history'.
Within a month of her one yr old vaccinations, she came down with a really bad case of 'croup.' Her pediatrician put her on Prednisone/steroids for a week or so. I've also noticed and made comments about her crabbiness the past couple of months, because to me it seems she's in her terrible twos already, but I worry that it's because she's not really feeling good all the time. Am I off base here? She's even starting throwing occasional temper tantrums! She is a very bright baby, who is walking, starting to talk, etc... but my son and his wife don't want to believe that vaccinosis, causing autism, allergies, asthma, etc. really exists. They feel she MUST have all these endless vaccines because how will she go to nursery school or kindergarten without them????
I'm a Registered Nurse and worked in OB for many years. When I was working in Newborn Nursery, we never gave newborn babies vaccines! Now, that is the norm and it just seems so incredibly scary and stupid to me. Plus when I was raising MY kids... the vaccine list was much less than it is now.
Clark's father (my son) was the only one of my kids who was blonde and blue eyed (same as my granddaughter) and he was the only one of my kids who had croup and asthma many times as a toddler, many allergies and a severe case of Juvenile Rheumadtoid arthritis starting when he was 10 yrs old! I am scared to death that my precious granddaughter is predisposed to the same kind of fate or worse due to all the vaccines she's receiving. Am I off base here? How do I reach my son and daughter in law to get them to believe this is real? And that it's dangerous? He blows me off and doesn't want to believe vaccinosis exists in children, with dire effects!
I've also noted that she has really foul smelling stools for such a little child. Is this a symptom??
Heck, I'm a dog breeder now and I don't EVER vaccinate my puppies or dogs via the 'protocol' that my Vet recommends because I've seen THEM get so sick from the vaccines! Thank you for reading and for any help you can give me on helping to reach my son's awareness.
Posted by: Margie Staniszeski | September 28, 2009 at 12:12 PM
In a school site of 425 kids their are 45 students with autism. This is not a school for special needs. It is a neighborhood school.
In my surveys around this 2 city school district the stats remain the same. We must be really good at diagnosing kids with autism in this area!
You are right JB - bullshit it is.
Posted by: Lisa @ TACA | September 28, 2009 at 12:06 PM
One reason that these rascals are able to get away with such nonsense about autism not increasing is that the autism community has not got the reality out to the public. So many people still think an autistic child is just some quiet little kids who keeps to himself and gets better with therapy. I have just read an article from an Indian magazine giving TV viewing as a cause of autism and I once had a very intelligent American friend suggest to me that tv viewing could be a possible cause.I would like to suggest that more information needs to get out to the public and if we have to pay for it, we must. And parents, get your autistic child out of the house, where people can see him ! I recall my daughter, a neonatologist, carefully watching an autistic boy run across a park, with a very odd posture- stiff back, leaning forward and elbows back. Now, a doctor cant see that and not start wondering what autism really is.And I wonder if we are doing ourselves any favor when major autism organisations display pictures of children who are smiling and normal- appearing .
Posted by: Cherry Sperlin Misra | September 28, 2009 at 10:52 AM
I am not a partisan but this I know and know it well: if health care becomes a government monopoly you can kiss your alternative treaments for autism goodbye.
Posted by: Theodore Van Oosbree | September 28, 2009 at 10:47 AM
JB, Yet another outstanding post. Here is my response to your rhetorical question regarding whether my son meets the DSM-III criteria:
My son is now 18 years old...
A. Onset before 30 months of age
First symptoms 18-24 months -- perfectly normal before that.
B. Pervasive lack of responsiveness to other people (autism)
This was the first thing we noticed. And, to this day, he will still just wander off completely oblivious to what anyone else is doing. That, in fact, is his preferred activity.
C. Gross deficits in language development
Still speaks like a three-year old -- when he does speak.
D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.
He still calls his room "your room" -- despite being corrected about this on a daily basis.
E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.
He prefers to play with straws -- mostly banging them on his knuckles.
F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.
Don't know about this one -- but my guess is it would be true. He can't even tell us when his head or stomach hurts.
Posted by: ObjectiveAutismDad | September 28, 2009 at 10:25 AM
JB,
I highly respect you and your work, but I have to agree with previous posters that Republicans have children with Autism too and we also want to see an end to the government's refusal to acknowledge its role in being part of the cause. I can't begin to tell you how much I appreciate your advocacy work, but slamming political parties whose ideology you don't agree with (with an example that doesn't even seem to relate to the issue at hand) does no good whatsoever in uniting and advancing a noble cause that encompasses people from every single walk of life.
Respectfully,
Posted by: Bonnie | September 28, 2009 at 10:15 AM
I think denying autism has risen is a pathetic and usual response from our government. This is their "go to" card. Keep everybody arguing about the rise in autism to buy time. It's predictable and all they have. Sad. I can't wait to hear how they are going to deny all the swine flu vax injuries. Oh, wait, I know lie and deny....
Posted by: Maggie | September 28, 2009 at 10:15 AM
Just another schoolteacher joining the amen chorus. Ultimately it's the "official" story about autism, and how outrageous it is, and at odds with the facts on the ground it is, that sowed sufficient distrust of the system that we are not vaccinating any more.
Posted by: Schoolteacher in NYC | September 28, 2009 at 10:04 AM
I just did a quick study and found that one out of three people living in my house have been diagnosed with autism. I dug a little deeper and discovered that 3 years ago statistically it was zero out of three. I looked outside my house and found one place where a school had about 50 out of 300 kids there with autism. I went into a big office building and didn't see any people diagnosed with autism. The last place I looked was the lobby of a pediatrician's office, and while I was not able to find any children there with autism, I was told to wait, apparently some were on the way. While waiting I noticed that the hard wood floors had rather large spaces between the planks, I went over and peeked down into the cracks and found more than I could count. Wow, a bunch fell through the cracks, I wonder if there are a bunch more in other doctors offices.
When Ben was first diagnosed with autism we pulled his medical records, I was surprised back then what I read noted in his chart,
8/15/07
fever 103.8
viral syndrome
9/17/07
fever for 3 days
101.8
viral syndrome
Rx for antibiotic, “just in case”
10/19/07
mother concerned about lack of speech and not responding to name
advised to wait until first of year
vaccines, DPaT and flu
11/23/07
fever, no flu booster given
104 night prior, 103 morning
antibiotics
did not notice Ben speak while with doctor
11/23/07 (evening)
fears of allergic reaction to antibiotic, Ben broke out in rash, blue lips
heart rate 100-150
no cynanosis appreciated, not sure if it is cyanosis.
11/29/07
still with fever
mom concerned about possibility of autism
mom concerned doctors unable to be positive he has OM vs. viral and wants to know if Ben could possibly have leukemia or anything else that may be causing chronic and recurring fevers.
mom also asked about seizure activity, during the day he will stiffen up and kind of be unresponsive however will have no shaking. he will wake up in middle of night or during nap screaming and crying and acts as if parents are not there, not interacting with them.
mom wonders about high fever and how it may have affected his brain and whether it can account for his behavior problems
Ben well appearing , playful, no apparent distress
seems to exhibit age appropriate behavior, maybe a bit on hyperactive side
mom very preoccupied with Ben’s behavioral what she perceives to be Ben’s behavioral disorder and is eager to find the cause at this point
********* feels a lot of mom’s concerns are prompted from reading on internet. told her there is more bad information about autism than substantiated information. ******
anything under 100.4 is not considered a true fever therefore not a concern for leukemia or chronic systematic illness
Maybe a few fall into the cracks, or even get run over by a bus.
Posted by: bensmyson | September 28, 2009 at 09:41 AM
JB, excellent! Now let's get this piece Op-Ed'd into a few major papers!
Thanks for everything you're doing, you're a true champion.
Erik
Posted by: Erik Nanstiel | September 28, 2009 at 09:29 AM
Sir,
You have more in common with the Republicans than you think. Obamacare is all about shoving the wrong solution down our throats. Please consider this when slamming the opposition. We're on your side!
Posted by: JimK | September 28, 2009 at 09:18 AM
UCFENGR, it seems to me that many of our readers are Conservative Republicans - you'll find us talking about the Obama admins love affair with public health and vaxes too on AoA - I assure, you. Don't let politics keep you away. Many of us are on opposite politcal poles - but autism is the center of the Venn diagram that brings us together.
Posted by: Kim Stagliano | September 28, 2009 at 09:08 AM
I spend a lot of time talking to parents of nt kids because I've got one of those too and she came first. Every single person I talk to believes there has been a huge surge in Autism numbers. I think the vast majority of the public, touched by Autism personally (who isn't at this point), or not, knows the numbers are soaring. Because like Teresa said - our kids are everywhere now, everywhere you turn. The only people buying into this kind of bullshit science are the people creating it. My sense is the numbers will get worse and they will still deny it. We could get to 1 out of every 10 children and the force behind the denial is so great, they'll still find a way to contort the statistics or re-write history to suit their needs. The thing is, the rest of the world apart from this evil faction (let's call it what it is, we are talking about intentionally hurting children) is beginning to get it, the tide is turning. Did you notice almost no major news sources picked up Baron-Cohen's silly study, they were too embarrassed to touch it,it was that bad.
Posted by: alison macneil | September 28, 2009 at 08:57 AM
I know this will be a shock to the author, but some parents of autistic children are Republicans. Some of them probably read this website and some may even contribute to its maintenance. Taking a cheap shot at them only serves to alienate them and discourage them from reading what may have been an informative article. I say "what may have been" because I stopped reading after the gratuitous insult.
Posted by: ucfengr | September 28, 2009 at 08:56 AM
Fantastic article!
I used to teach. I taught for ten years, from preschool through late elementary school age--never did I see children, nor the numbers of children, with autism like the autism of today. It still baffles me that our big alphabet soup organizations claim these kids were there--where, I ask? How did I miss them?
Looking back over those 10 years, and I do look back to try to figure out how things got so bad, I could now identify one boy with Asperger's and several years later possibly one girl with soft signs of Asperger's. Those numbers don't add up to the 1 in 100 of today. How did it get to this?!
I hate the lies. I hate the cover ups. I hate what this epidemic has done to my faith in 'the system' (to include the medical, educational and support). JB is right, it's up to us parents to keep on getting this message across and to stop the bullshit. Hasn't it gone on long enough?
Posted by: Cathy Jameson | September 28, 2009 at 08:52 AM
JB- I join with you and call BULLSHIT!
We parents, who have been the voice crying in the autism wilderness, "Prepare...!", have been dismissed for years. What has happened to our children will go down in history as a major accomplishment of Medicine's selfish pride and greed, all while screwing an entire generation.
Posted by: How Can We Be Heard? | September 28, 2009 at 08:32 AM
"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."
Its because the Sebelius's of this world would rather focus on how you sneeze and where you sneeze as having a greater impact on public health. A total neurological immune dysfunction, evidently you are hurting no one other than yourself, so who cares.
Posted by: the art of managing healthcare | September 28, 2009 at 08:30 AM
JB,
Another thing to take into consideration when someone brings up the "Broadened Criteria" argument is the fact that the DSM criteria for Autistic Disorder (not PDD or Asperger's) actually narrowed (i.e. became more specific). In 1980-90, to be classified with Autistic Disorder, 8 of 16 behavioral criteria had to be met. With the DSM-IV, only 6 of 12 criteria had to be met.
Autistic disorder has an estimated prevalence of about 16.8 per 10000 children (http://www.medscape.com/viewarticle/447240). In 1985, this was 2 in 10000. So, a broadening (narrowing) of diagnostic criteria somehow accounts for an 800% increase in prevalence of autistic disorder in 20 years?
Posted by: Craig Willoughby | September 28, 2009 at 07:48 AM
It is such BULLSHIT! The attempts to explain and accept autism are both covert and blatant.
My 85 year-old aunt never saw autism as a Chicago teacher or then as a Principal of a large city school, Those kids were so rare and unusual, they were placed at Bettleheim's Orthogenic School in Chicago to be observed.
In the 1980's I saw 1 child with autism when I worked in a psychiatric hospital. Today, they are in every educational setting: regular preschools, special education early intervention,public school special education, private schools, home-schooled and in therapeutic day schools.
To continue to deny that autism is on the rise is unjustifiable and bordering on diabolical.
Posted by: Teresa Conrick | September 28, 2009 at 06:54 AM