US Medicine: 97% of All Autism Cases Went Undected - Until Now?

If autism has always been with us in the same high numbers that we see today -- as some scientists and academics contend -- then we should be able to identify the 1 in 150 adults currently living with autism in places like the US and UK.

With all of the media attention on autism these days, one would think that many more adults with the disorder would be seeking out social services, adult education and job training programs, support groups, and other ways that would help their numbers be counted.

Not all adults on the autism spectrum are aware that they have an ASD, and others may not be interested in social services, special education or job training. And of course, many of these services are woefully lacking or unavailable to adults with autism.

But still, by any currently available measure, there appear to be many more people under the age of 18 with autism than there are adults with the disorder.

Anecdotally, this is supported by the fact that, when researchers set out to study adults with autism, they can have a difficult time recruiting enough subjects to complete their investigation. One study, proposed by researchers at the University of California at San Diego, had to be canceled for lack of participants, even though they had conducted outreach through community resources, the internet, local media and advertising.

This idea is also supported statistically by recent data from the Public Health Institute of Scotland, which conducted an audit of services for people with ASD in Scotland, and would also suggest that there are more young people with autism than adults.

Investigators could only find, "a total of 645 adults diagnosed with autistic spectrum disorders in Scotland," the audit said, adding that, "we know that this is a significant underestimate of the total number of adults with autistic spectrum disorders from the comments received with these figures and also the large amount of missing data in this table."

I would bet a billion pounds that there are many more than 645 adults with autism in Scotland. So yes, this is probably a significant underestimate.

But by how much? Is it possible that only one in every 110 adults with autism in Scotland is standing up and being counted?

Let's look at the numbers. There are approximately 3,400 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 212 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year. Click here to Download file

If the rate of autism in Scotland had remained unchanged between 1955 and today, then there are many, many uncounted adults going without support, services, or even much recognition.

In fact, at 212 cases on average per year, there should be nearly 6,600 people with autism in Scotland between the ages of 22 and 53 years alone. But only 600 have signed up for any help at all, in a country with universal healthcare, no less.

Which begs a few questions: Where are the other 6,000 people in that age group with autism? Why have 1 out of every 11 adults with autism never sought, nor received, any special attention for their particular needs? Why have they not been counted? And why is there no national outrage over the neglect of so many thousands of fellow citizens going without services that they need?

In a country the size of Maine, with a population much smaller than New York City, it seems that the government would be able to locate and help these people.

Unless, of course, some of them are not there.

Another way to look at this is by examining the historical numbers in the United States. In the 1980's, the reported rate of autism was about two cases per 10,000. Proponents of the genetic theory of autism say that the rate was much higher than that. But by how much? Was it twice that high? Five times? Ten times?

Let's assume the actual rate in the 1980s was ten times higher, or 20-per-10,000. That would mean that, for every child diagnosed with autism in this country, nine others went completely undiagnosed; left to fend for themselves for all the highly specialized medical, educational and social attention and care many children on the spectrum require.

It is surprising, then, that the American medical and educational establishments would so blithely admit to the neglect -- and some would say malpractice -- heaped upon so many hundreds of thousands of American children so clearly and desperately in need (And if you think that services for mentally retarded kids are appropriate for all ASD children, you are wrong).

Is that possible? Yes it is. And, proponents of the autism-is-all-genetics theory contend, it must have been going on for hundreds of years in this country -- a dark spot on our history, if every there was one.

Only, the scenario would be far worse than that. If autism remained unchanged in this country -- at 67 per 10,000 -- for decades after it was defined as a disorder, then from the 1940s to the late 1980's, 65 out of 67 children with autism were completely missed by their doctors, teachers and parents as having the disorder.

It stretches the outer bounds of plausibility to accept that 97 percent of ALL children with autism went undiagnosed until quite recently. And again, it is surprising that the medical establishment would cop to missing nearly all children with autism in their care. It certainly makes them look like the worst doctors in the world.

On the other hand, it does get vaccines off the hook.

Apparently, it's better to admit you utterly failed to notice so many sick kids in your charge, than to admit you may have been part of their etiology -- however haplessly -- in the first place.

This post originally appeared at the Age of Autism blog

Comments

[ThoJ]

The petitioners lawyers in the Omnibus have announced that the fraction of kids who may have had autism caused by vaccines is actually quite small. Too small for epidemiological studies to detect.

Given that they still claim that an autism 'epidemic' is happening, we are left without an explanation for the increased number of people diagnosed with autism.

Just as in this post, the question remains as to where all these individuals with autism came from--were they undetected before or is there a real increase in the numbers.

Given that, Mr. Kirby, please call for more research into non vaccine-injured autistics. Where did they come from, why is the number increasing.

If this is truly about the people with autism, and not about the vaccines, there is no other responsible action you can take.

[ThoJ]

I have been waiting for Mr. Kirby or someone at the Huffington post to add a note that this blog entry was edited after it was first posted. The changes were significant (34,000 children in Scotland with ASDs, with some discussion based on that, vs. 3,400 children).

Given the constant calls for transparency from government groups made by Mr. Kirby, the lack of transparency here is very strange. No, this is not going to make a difference in the lives of the children and adults with autism (both those counted and uncounted). But, the correction should be noted.

[CraigWilloughby]

Dr. P, you stated: "believe me when I tell you that I think the CDC and FDA need a whole lot of help when it comes to how they've handled this issue. They could start by putting stronger and more confident statements about vaccine safety to reassure nervous parents.

But remember both agencies are headed by political appointees and subject to the whims and worries of politicians. When you consider how much damage politicians have done with science since 2000 (global warming, abstinence only education, how they handled Plan B going over the counter) one can only assume that "political science" is an oxymoron now.

So it's better to ask, since anti-vaccine folks keep making the accusation, what is the evidence we have to prove our claim? Thus far I see none."

So, do you believe that Merck paid ghost writers to doctor reports on the safety of Vioxx? Then paid Doctors to sign off on it. You don't think that it is in any way possible that they could have done the same to the reports of their vaccines?

[doctorparikh]

I've haven't quite ridden off into the sunset yet--I just wanted concerned parents to look at three reports over the past month about what's happened in areas where kids aren't vaccinated becuase of anti-vaccine folks: Outbreaks like this are going to continue to occur, but why, if we've seen in these discussion, anti-vaccine folks can't cite anything to prove their accusations?


http://www.mercurynews.com/breakingnews/ci_9207819?nclick_check=1

http://www.nytimes.com/2008/05/02/health/02measles.html?_r=1&scp=2&sq=measles&st=nyt&oref=slogin

http://query.nytimes.com/gst/fullpage.html?res=9E0CEFDA1330F932A15750C0A96E9C8B63&scp=2&sq=measles+san+diego&st=nyt

[foe2Hg]

dr p

As you have stated, news articles are hardly scientific. Also, I think you had better change your title for the parents on this list as calling any of us "anti-vaccine folks" will get you no bonus points.

Also, on the record, are you using any of this information to do any kind of piece for Pediatrics or any other publication or webstite? Thus far, you have not been entirely honest about your "anti-autism parents" writings.

[LindsE]

Do you need scientific evidence that there's an outbreak of a disease?

[doctorparikh]

NEWSPAPER ARTICLES VERSUS ORIGINAL ARTICLES

Sorry,
to be clear: the links above are to news stories reporting on measles and whooping cough outbreaks over the last year. It's basic reporting of documented facts--I don't think anybody is disputing, or asking for more evidence other than clincal or lab diagnoses of these vaccine-preventable diseases, that these outbreaks have happened.

What I'm referring to when anti-vacciners make their charges is that they use commentaries, best-selling books, and speeches by politicians or rants by celebrities as their proof.

I think most sensible readers will agree that this is a reasonable contrast.

[ObjectiveAutismDad]

It's dubious that all of these children were not vaccinated because their parent's were concerned about vaccine safety. That said, even if they were, they have legitimate concerns. I realize you don't think that's the case. But the problem is only going to get worse until you, the AAP, the CDC and the IOM, etc. do something about improving vaccine safety. This is not on those of us who have vaccine injured children... It's on you.

[CraigWilloughby]

Dr. P stated this in a later post, but it won't let me reply, so I'll post it up here.

He said: "but if you know anything about vaccine pricing you're aware that profit margins are minimal to zero at all."

Ah, but you see, there is profit in the side effects. The pHARMa industry doesn't want people who are well. It would cut into their profit margins. Now, there is a pill for everything. Is your child autistic? Here, give them risperodal. Can't sleep, here's some trezidone. Hyper? Here's some Ritalin. Depressed? Here's some Prozac (yes, they tried to give my 6 year old son PROZAC!!!). ANd here's some more drugs to counteract the side effects of the other drugs. Here's some more drugs to counter the side-effects of the side-effects. While they may not be making a profit off the vaccines themselves (which is not true..look up how much money Gardasil and Offit's Rotateq made), they are certainly making a profit off of the result.

The reason that the CDC and IOM are so vehemently against DAN doctors and alternative remedies is because these are not regulated by them. Therefore, they can't make a profit from it.

BTW, I have a new name for Number 2. I'll call him For-Profit Offit.

[nhokkanen]

Dr. Parikh exemplifies the "either / or" mentality keeping children sick.
Yes, vaccines help -- but they also injure children. Look at VAERS, at listservs, or talk with colleagues. Vaccinosis is acknowledged in the veterinary field -- pet owners get more credence than parents of children.
The "benefits outweigh risks" mantra is repeated by people with no sympathy for those damaged, and no interest in learning how to prevent injuries. They write off our children as collateral damage in the war on disease.
Read the headlines -- 42 safety violations at Merck's vaccine plant. Government agencies have failed miserably at monitoring manufacturers. Yet what other industry requires closer monitoring?
Vaccine gatekeepers are captured by the industry they are to be regulating. Everyone on the ACIP committee has a conflict of interest waiver.
Parents are trying to report problems, but few people are listening. It's easier and cheaper to deny it, treat parents like liars, and continue with business as usual.
Doctors need to accept the paradox that a product intended to improve health is sadly having the opposite effect in a subset of children.
Peanuts improve health, but we don't force them on every child. And when a child gets injured by a peanut, that child receives medical treatment. Yet the CDC has no protocol for helping children injured by vaccines.
How high must the body count get before doctors stop defending their revenue stream and start protecting ALL children's health?

[LindsE]

"Doctors need to accept the paradox that a product intended to improve health is sadly having the opposite effect in a subset of children."

Except that the evidence supporting this lies somewhere between weak and non-existent.

This is not a "vaccines are good for you" issue. Vaccination vs. unvaccinated can very well be the difference between life and death. And even more commonly the difference between severe disability due to a childhood illness and leading a normal healthy life.

[CraigWilloughby]

Tell that to my son who will probably never lead a normal healthy life.

[linlou34]

LindsE >
I have no scientific background. What I know is that my son was given 4 complied shots in one visit. It was not done of my or my husbands consent. The pediatrician said he was behind on his shots so they will get him caught up. When we asked how many did he need to be caught up, he said 4 compiled shots. We said no, we will space them out. When the nurse came back in the room she had all 4 shots in him before we had the chance to stop her. We were pissed. We did not know much about autism at the time, but we did know that 4 shots could not be a good thing. Afterwards, he had a high fever that lasted for days and he stopped doing everything he used to do.
What I am saying is he was fine until that day! The reason I ask about your scientific background is... Are you currently studying autism? What is involved in your study? Do you work for a Pharm. Co.? This may seem invasive, but you protest this a great deal and it makes me wonder why?

[ThoJ]

Let's avoid the errors (some corrected, some not) in this blog post for now. Let's take this to it's logical conclusion. As Mr. Kirby states, he'd bet a "billion pounds" that there are more adults with autism than are in the current counts.

Why, then, is Mr. Kirby not calling for a major effort to find the missing autistic adults? If it is likely that they are receiving inappropriate or no services (which can be highly inappropriate), the only responsible action is to call for this to end. The only responsible action is to call for a search for the adult autistics.

Please, Mr. Kirby, write your next blog post about how the United States should follow the UK's lead in commissioning a survey of adult autistics.

[doctorparikh]

(continued from prior post)

It's hard to see a child struggle with autism, but it's just as hard to see a child suffer from cancer, cerebral palsy, severe asthma, depression, etc. It's hard to see a child suffer from measles encephalitis, tetanus, diptheria, suffocate from whooping cough, or go deaf or die from h. flu meningitis. As someone who's seen all of these things (thankfully many outside of the country), watching the tears of a parent suffering and knowing that we could have done something to prevent it about beyond gut wrenching. Those parents, like the ones here, have tears too.

So please, remember this when you consider the consequences of refusing vaccines, when you listen to arguments that doubt the safety of shots. This debate isn't going to end anytime soon, so it's up to all of us to think harder and ask for better answers than the ones you've been getting here.

[foe2Hg]

dr p

The proof of safety is the issue here. You have not demonstrated that vaccines cannot cause autism and the Poling case has shown that they can. You can dodge this issue but "it is what it is".

There will be more coming too.

[foe2Hg]

Well, it looks like dr p has ridden off into the sunset. His parting words offer little hope that AAP will be investigating vaccine safety, changing their stance on vaccine scheduling, exploring vaccine components alone or in tandem, synergy of thimerosal and aluminum or live viruses, glutathione levels (tylenol), the role of mitochonria testing prior to vaccination, allergic reactions to any of the ingredients in vaccines, and pertinent to the discussion here, why are there more children than adults with autism?

His post regarding what is on his/AAP list of research ideas-

"looking at genetic predispositions related to conditions like prematurity, or advanced maternal or paternal age, for example. Also continue looking for triggers in the environmen­t--mercury in the environment, seafood, etc."


The mercury exposure is a known issue regarding many symptoms including mitochondria damage. It is ironic that AAP will look into toxins on your plate and in your genes via age but ignore that vaccine full of them.

[doctorparikh]

Hi everyone,
Let me first say how much I appreciate the chance to debate these issues. I have no doubt that Autism is serious struggle and I the highest respect and admiration for parents everwhere who love and care for their kids with it. I think everybody here agrees need answers. But nobody in this discussion here has pointed to a valid study that vaccines=autism or autism=epidemic, or Hannah Poling=vaccines cause autism.

I just want to review exactly what's been going on instead

1) The citing of opinions, commentaries, or presentations to politicians, none of which is hard evidence
2) What studies have been cited are from non-peer reviewed journals--"junk science" that shows that putting too much of anything inside of a cell will cause it to die
3) Attacks on the integrity of pediatricians and medicine
4) Personal attacks against those of us who ask harder questions
5) changing the target from thing to another, thus perpetuating the debate

Everybody has the right to do all of those 5 things. Government, pharma, and doctors certainly haven't been very good at clearing the air. But none of those 5 things answer the fundamental question about what causing autism.

(continued in next post)

[ObjectiveAutismDad]

Dr. P,

We get it... It's understandable that many in the medical community are either deathly afraid of, or in deep denial, about the possibility that the epidemic of autism has been caused by them. Most Doctors care deeply about taking care of people and can't fathom the possibility that this may be the largest iatrogenic incident in the history of man. Studies from NIH, Columbia and Northeastern Universities can hardly be called junk science.

It's a sad commentary, but a famous physicist put it best:

It is one of the most painful experiences of my entire scientific career that I have
seldom -- in fact, I might say never -- succeeded in obtaining universal recognition
for a new result, the truth of which I could demonstrate by a conclusive but only
theoretical proof. . . . A new scientific truth does not triumph by convincing its
opponent and making them see the light; but it triumphs because its opponents
finally die off, leaving a new generation that is familiar with the new idea. -- Max Planck

I hope we don't have to wait a generation for people to accept what has happened to these children. If we do, we'll have a lot more of them to answer for.

[LindsE]

What people in the medical community are more concerned about is epidemics of vaccine preventable diseases. I don't think most people are in denial. I think most people are siding with the weight of the legitimate scientific evidence.

Are you trying to make a particular point with your continued references to those particular studies? If you are, I'm afraid I'm missing it.

[Oldfart]

Frankly, I think there are a group of parents of autistic children who are (1) in denial that their genetics had anything to do with their children's autism, (2) refusing to take any responsibility for their children's autism, and (3) looking for some government agency to pay them for their children's autism.

Else, why would they hang on to this hatred of the medical profession and vaccination in the face of overwhelming evidence to the contrary?

All of these parents have not produced, together or with their enablers, such as Kirby, one single iota of peer-reviewed proof that vaccinations are any thing other than what the government says they are. A way to protect the public against common diseases that works 99% of the time and that have made enormous reductions in suffering among mankind.

[foe2Hg]

This is an an example of factors that contibute, cause, exacerbate--and one that all of AAP has recommended--giving tylenol after vaccination-What do you make of this dr p? Will AAP post this in Pediatrics?

Acetaminophen (paracetamol) use, measles-mumps- rubella vaccination, and autistic disorder: The results of a parent survey. Schultz ST , Klonoff-Cohen HS, Wingard DL, Akshoomoff NA, Macera CA , Ming Ji .


The present study was performed to determine whether acetaminophen (paracetamol) use after the measles-mumps- rubella vaccination could be associated with autistic disorder. This case-control study used the results of an online parental survey conducted from 16 July 2005 to 30 January 2006 , consisting of 83 children with autistic disorder and 80 control children.



Acetaminophen use after measles-mumps- rubella vaccination was significantly associated with autistic disorder when considering children 5 years of age or less (OR 6.11, 95% CI 1.42-26.3), after limiting cases to children with regression in development (OR 3.97, 95% CI 1.11-14.3), and when considering only children who had post-vaccination sequelae (OR 8.23, 95% CI 1.56-43.3), adjusting for age, gender, mother's ethnicity, and the presence of illness concurrent with measles-mumps- rubella vaccination. Ibuprofen use after measles-mumps- rubella vaccination was not associated with autistic disorder. This preliminary study found that acetaminophen use after measles-mumps- rubella vaccination was associated with autistic disorder.
PMID: 18445737 [PubMed - in process

[doctorparikh]

There is no statement from the AAP that directs parents to give tylenol after vaccines.

But again, feel free to change the target from vaccines to anything else. Case control studies that use surveys like the study to which you're referring are subject to a great deal of recall bias--that is, asking people to remember things after the fact is prone to subjects failing to remember of misremembering. If you wanted to do it right, you would do some kind of prospective study where you looked at kids getting vaccinated and in real time, compare outcomes between those who did and those who didn't receive tylenol.

[foe2Hg]

No statement is needed as it has become an unwritten policy. I would bet at least 90% of your colleagues either have the nurse give the tylenol in the office or tell the parent to give it at home. What is alarming is your lack of concern if there is ANY chance that a child could be harmed by this "procedure".

Do you understand the science of why this could be harmful?


So will AAP come out and say NOT to do this as there is now a glaring red flag?

Or will AAP say the benefits outweigh any risks?

[foe2Hg]

I somehow missed this from dr p. It is not from Oprah that I get my knowledge about vaccines and autism. If it made Oprah though, you know that it is a BIG deal.

"Over the past decade, the reputation of childhood vaccines has been severely damaged" (actually, the vaccines have done the damage, dr p)

Fighting for the Reputation of Vaccines: Lessons From American Politics

http://pediatrics.aappublications.org/cgi/content/extract/121/3/621

[foe2Hg]

Again- posting here - no room-

LindSe said-
"Mitochondrial mediated apoptosis is not the same as mutation of the mitochondrial DNA. Mitochondrial mediated apoptosis is rarely due to a direct insult on the mitochondria themselves, rather it is typically downstream of other pathways. This is not semantics."

Can you please post that source? Don't know if it matters or that we have all of the pieces in place for understanding this as it relates to thimerosal, aluminum, or vaccines in general. That is why research into this is imperative. Here is Dr. Poling's response at that time-

http://www.ageofautism.com/2008/03/dr-jon-poling-o.html

[LindsE]

Mitochondrial dysfunction implies a problem with the mitochondria in many if not all cells, typically a genetic defect in the mitochondrial DNA. Mitochondrial mediated apoptosis is a normal process by which cells kill themselves. This can be due to some sort of stress (lack of nutrients, heat, cold, osmotic changes, etc.) or can be receptor mediated (this type is used by the immune system to contract the number of lymphocytes after an immune response). Mitochondrial mediated apoptosis is not inherently pathological or indicative of a problem.

[foe2Hg]

Commenting here re dr p post as there is no room there=

"That study is more of the same--sunlight is cytotoxic in high enough concentrations."

Eerily yet in a typical fashion, dr p is starting to sound like so many others who claim to care about individuals yet disregards real lives. This is what you should have been responding to--not sunlight-

http://www.research.vt.edu/resmag/UG_Research/mercury.html
"Apoptosis is programmed cell death or naturally occurring cell death that induces DNA fragmentation, whereas necrosis is the inducing of cell lysis, or essentially the bursting of a cell, and is usually a result of highly toxic exposures.

Barker's studies showed that there was a higher level of DNA fragmentation, hence apoptosis, when the cells were exposed to a lower level of thimerosal, versus the lower levels of DNA fragmentation as a result of higher thimerosal concentrations, implying necrosis."

Your disregard is very obvious.

[doctorparikh]

That doesn't link to a study, just a news release of a study by another college student (could it be in a non-peer reviewed journal as well?)

I still can't see how my views disregard real lives--if you're referring to a silly analogy that I made between sunlight and mercury, I'm guilty as charged--I just wanted to provide a clearer example to readers than all of that scientific mumbo jumbo you've been cutting and pasting. Another simple point, for those of us who took high school biology: What happens when you bathe cells in water--they eventually swell and burst--killing them. My point is that if you stick enough of anything into a cell membrane, it's bound to kill it. The question is, and you can't answer, is that is the thimerasol in vaccines enough to cause any cell damage? The answer, from the studies earlier this year in two peer-reviewed, highly respected medical journals, is no.

P.S.: Dr. Poling's response is not fact either, just his opinion. Like the rest of us, he has no idea what the court was thinking.

[foe2Hg]

Dr. Poling and his wife know a lot more than you or I regarding the issues here but my point is that they have concerns in that Hannah may not have had the mitochondria issue prior to her vaccinations and they think that could have caused both the mito issue and the regression. So again, research is imperative as we have many autistic kids who need help and many more neurotypical kids who will be getting vaccines.

Regarding your water analogy vs thimerosal in vaccines....don't you think some good research could answer that? Investigating thimerosal and vaccines as they relate to cells/mitochondria could open up some doors in our understanding and possible treatments. Are you against that?

[CraigWilloughby]

"The question is, and you can't answer, is that is the thimerasol in vaccines enough to cause any cell damage? "

Did you know that when they create the vaccines with Thimerasol, they have to where a Hazmat suit to use this toxic chemical? But it's perfectly safe to inject in babies.

[foe2Hg]

Craig,

Could not reply by your comment as there is no room. I am so sorry that your son is at the ER. I don't have an email address for you so posting here that I hope your son is better now with minimal discomfort. Daily life can be challenging enough but when there is a crisis like this, it is just traumatic and unfair. My best to you all.

[CraigWilloughby]

The doctor seems to think he'll be ok. They did x-rays and found 7 of them, small ones, in his intestines. Their main concern is internal lacerations. Thank you so much for your concern. It truly is appreciated.

[foe2Hg]

Craig,

Glad to hear he is doing ok now. I have a biomed group that you may want to join. Feel free to contact me-

redhead607­07@yahoo.c­om

[ObjectiveAutismDad]

Craig, glad to hear your son is doing better. My son swallowed five magnets and several nickel plated steel balls about 2.5 years ago (Geo-mags(tm)). Some were in his stomach and some in his small intestine -- and they were stuck together. He had to have them removed surgically and spent the next 8 days sedated and on a respirator. If he'll eat rocks, he may eat magnets as well -- keep those as far away as you can.

[LindsE]

What percentage of children currently considered on the autism spectrum do you guys estimate would be able to muddle through and finish high school? Prior to the expansion of the diagnostic criteria, the acceptance of Asperger's as a syndrome, the widespread awareness and diagnosis of either, how many people do you think muddled through high school that would likely now be diagnosed? How many of those people were labeled LD in a specific area when they were in school rather than diagnosed with an autism spectrum disorder? How many of those undiagnosed people developed coping strategies that allowed them to succeed? Is there any impetus for those adults to now be diagnosed? Obviously, there is a portion of children who have very severe autism who wouldn't fall into these categories.