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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
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To get the right understanding of the autism numbers in this country, instead of Mr. Kirby’s loose analogies, I would invite you to look at harder data:
http://www
So the epidemic thing is simply wrong. Meanwhile, anti-vaccine folks continue to accuse pediatricians of being cronies for vaccine companies (and betraying kids. who we’ve dedicated the majority to serving). Their smoking gun is keeps changing: First it was the MMR, then mercury and now it’s aluminum and/or formaldehyde (what’s next, the gauze inside the band-aid we give kids after the get their shots?). While they rant, measles and whooping cough cases are spiking.
(Incidentally, I have never had any financial relationship with and have never been a spokesperson for any drug or vaccine manufacturer. I’m a physician who knows that vaccines save lives. Like everything in medicine, they have possible side effects, but autism isn’t one of them)
We should demand more than loose analogies, statements of “proof” from politicians looking for votes, and dubious statements by the CDC as proof that vaccines=autism. The proof lies in scientific data, and the best, unbiased science says exactly the opposite of what Mr. Kirby espouses.
If you can’t or won’t demand this kind of proof, you’ll bear witness to the tears in parents’ eyes whose children are maimed and die senselessly from vaccine-preventable diseases.
Rahul K. Parikh, MD
"(Incidentally, I have never had any financial relationship with and have never been a spokesperson for any drug or vaccine manufacturer. I"m a physician who knows that vaccines save lives. Like everything in medicine, they have possible side effects, but autism isn"t one of them)"
At this point in history, there isn't a definitive answer but for you to proclaim vaccines do not cause autism, well that is just untrue. This is a discussion about the research, the increased numbers of children vs the smaller number of adults, and the ramifications. Since you have written for Salon, defending the vaccine program at all costs and trying ever so hard to minimize the Poling case,, you sound more like an infomercial on late night tv rather than a doctor discussing realistic health issues. That may be a conflict.
Teresa
This is you, correct?
http://www
Yes the change in the diagnostic criteria has changed, but to meet the criteria you have be pretty severe. My son is a relatively high-functioning autistic 17 year old child. He was on the borderline of the spectrum when he was between the ages of 3-7. He's 17 years old and still can't tell me when something is bothering him, and I still have to wipe him when has a bowel movement, and he still doesn't know to look both ways (or in any direction) when crossing the street. If someone wasn't watching him constantly he would have been hit by a car a long time ago. You don't have a child like this and not get a diagnosis.
I'm disgusted that you pit our struggle with our children's autism and out attempts to clean up the vaccines against that of other children who have died from preventable diseases. It's your job as an M.D. to first do no harm. It's absolutely horrible when children die from any cause. It's also absolutely horrible for a child's life to be completely lost to autism.
Now stop arguing with parent's of these children and those who support them and go do something constructive about it.
I think reassuring parents, and asking questions in the echochamber that is Mr. Kirby's blog is doing something constructive.
Let's also be fair--contrasting your view that vaccines are dangerous and that we shouldn't vaccinate with the dangers of vaccine-preventable illness is fair. After all, what did Jenny McCarthy say on Larry King last month: "I'd rather my child have measles than autism in a heartbeat.
Please, be very careful--you will lose whatever "high ground" you think you have if kids starting getting vaccine-preventable diseases again, because views like this, with no hard facts to back them up, will have put kids in harm's way.
To get a clearer understanding of the autism numbers in this country, instead of Kirby’s loose analogy to Scotland, I would invite you to connect to a New York times article by two epidemiologists:
http://www
In short, both arguments—there is an epidemic of autism and that vaccines are the cause, are misguided. In the meantime, anti-vaccine folks continue to accuse dedicated pediatricians of being cronies for vaccine companies at the expense of kids’ health. They also keep changing the smoking gun: First it was the MMR vaccine, then mercury and now it’s aluminum and/or formaldehyde (what’s next, the plastic in the band-aid we give kids after the get their shot?). They substitute nebulous court decisions and statements from Presidential candidates for scientific data. All the while measles and whooping cough cases are on the rise again.
(Incidentally, I have never had any financial relationship with and have never been a spokesperson for any drug or vaccine manufacturer. I’m a physician who knows that vaccines save lives. They have side effects, like anything else in medicine, but autism isn’t one of them)
Turing your back on vaccines is bad for the health of our society. Just see what a child with measles, diphtheria, or tetanus looks like, and the tears they bring into the eyes of a mother whose child is suffering from it (I know, I’ve seen it).
Rahul Parikh, MD
I have not seen one person post here saying to not vaccinate children. I have only seen people hugely concerned about the ingredients in the vaccinations.
To say that you have no financial gain from the vaccine manufactures is false. Your practice administers these shot, right. You have a billing department, I would imagine. Also, in your office, you have ads for vaccinations. I have never stepped in a doctors office that had none. You promote them. The people who post here were not born yesterday.
I find it odd that a doctor would post here and refer to the media for references to stake his claim. Why not post information from scientist or medical journals?
To my knowledge, no one here has ever changed their tune on this subject. They have been quite consistent. I would like to know why the government, physicians, and big pharma have changed their tune so many times over?
Common sense says they have been reaching for anything they can to try and shut up the parents. I am not sorry to say, this will never happen.
Actually, I don't advertise vaccines anywhere in my office. Sure, we charge for our services, but if you know anything about vaccine pricing you're aware that profit margins are minimal to zero at all. If I wanted to make real money, I would stop vaccinating kids and perhaps become a DAN! Doctor.
Anyone who says they're pro-vaccine and then preaches otherwise is really not convicing me.
By the way, none of my misconstru
Somehow, you think that when we say we want safer vaccines, that we want VERIFIABLE DATA on the safety of the cumulative effects of multiple vaccines in a short period of time (don't bother looking, there isn't any), that somehow that equates to we want no vaccines. We want safer vaccines. I'm not looking to get rid of them.
But then again, I can see where you would want to push that thought across. Who in their right mind would want to deny vaccines to a child, right? Only crazy people. Maybe that's why you are so adamant that we are trying to push across an agenda that gets rid of vaccines.
"They have side effects, like anything else in medicine, but autism isn"t one of them)"
Wait a second. Are you saying that the vaccines Hannah Poling received did not cause her autism? Why do you think the government conceded?
BTW-autism is NOT a side effect. It is an emotional, physical,spiritual, and financial daily crisis for so many families. Your comments reflect zero understanding of the hardship these children and families endure.
Yes you're correct--autism is a emotional, physical, spiritual and financial crisis for many families. But it's not a consequence of vaccines. Again, let get back to the data--in this thread, this blog and every other comment from anti-vaccine folks, there's not a single study showing vaccines cause autism.
To oad: I still don't get this whole line of argument where parents like you say "we never said we shouldn't vaccinate.
I agree with you 100%. It's the arrogant and condescending attitude that this "Doctor" presents that gets so many parents to seek alternative treatments to help their children. But, this guy probably doesn't have any children or know any autistic children, so it doesn't concern him as long as it doesn't cut into his profits
First, nobody, pro or anti-vaccine, believes that autism is genetic only. Environment (probably more than one trigger) is likely acting as a trigger to inherent predispositions, but it’s not vaccines.
Second, in looking for numbers, there are several important points about the so-called “autism epidemic,” that concerned parents should take into account:
Over the past twenty years, the time in which Kirby is focusing on, there has been 1) a large expansion of the diagnostic criteria for autism, essentially making it easier to label somebody autistic 2) there is much greater public awareness of autism 3) there are services for patients with autism available, most widely accessible to kids through public schools and other state-sponsored programs. 4) doctors actively screening for autism now using standardized questionnaires like the MCHAT.
In addition, ample evidence exists to demonstrate that as a result of some or all of these things, diagnosis shifting has taken place—that is, somebody who would have been diagnosed with mental retardation in the past is now being diagnosed with autism today.
For more information about that, read the following study:
http://ped
All of this has led to a greater diagnostic bias towards autism, and therefore an explosion in diagnosis. We are quicker to think of the diagnosis because it’s foremost in our minds. Infact, it seems that every child with even slight language delay these days is a “rule out autism spectrum."
(continued in next post)
Well, I forgot a group. Many of the "doctors/p
Also, here is some feedback regarding Dr. Paul Shattuck's study in Pediatrics.
http://www
http://ped
Journal of Autism and Developmental Disorders April 2003, Commentary: Blaxill, Baskin & Spitzer on Croen et al (2002), The Changing Prevalence of Autism in California
Journal of Autism and Developmental Disorders April 2003, Response: A Response to Blaxill, Baskin & Spitzer on Croen et al (2002), The Changing Prevalence of Autism in California, Lisa A. Croen and Judith K. Gether
Public Health Reports, Nov-Dec 2004, What's Going On? The Question of Time Trends in Autism, Mark Blaxill, MBA
The Epidemic of Autism in California: Report to the Legislature of the Principal Findings from the Epidemiology of Autism in California: A Comprehensive Pilot Study, October 17, 2002, Robert S. Byrd, M.D., M.P.H., et al
Pediatrics, March 2005, National Autism Prevalence Trends from United States Special Education Data, Craig J. Newschaffer, Matthew D. Falb and James G. Gurney
If "conflict" means expressing a contrary viewpoint to yours, then I'm ok with that. What I meant is that vaccine makers have never sponsored my words.
Regarding your references:
Most are commentaries-none are hard science in themselves. No data=no proof that vaccines=autism or that autism=epidemic.
The March 2005 piece discusses prevalence, not incidence. You need incidence data to discuss epidemics (just Google prevalence versus incidence). Blaxill’s piece does the same.
Blaxill is an executive at Safe Minds, an anti-vaccine group—so doesn’t he get paid to do make that case? That’s ok if he does, but everybody should be transparent about financial conflicts and objectivity.
The Byrd report was given to California politicians--but the data was so flawed that he hasn’t been able to ever publish in a peer-reviewed journal, proving (thankfully) scientists are a much more objective than politicians looking for votes.
Croen’s piece was disputed but never retracted, unlike Wakefield’s. But since then, other objective experts have pointed out flaws in the epidemic theory.
That second link is a sensible commentary regarding the Shattuck piece--real science (unlike commentaries or non-peer reviewed stuff like Geiers’ work) discusses its limitations discloses financial conflicts of interest. Proper research papers always have sections pointing out those things. But again, it’s a person’s opinion, not unique facts.
Again, commentaries, non-peer reviewed studies, and court statements are not facts. They may imply/dispute facts or theories, but they don’t in themselves constitute proof.
I am constantly shocked and amazed that allegedly well educated people can make patently illogical statements. You are an M.D., correct? Did they teach you nothing of logic when you went to school? You can NOT prove a negative -- no matter how hard you try. Stating that "it's not vaccines" can NOT be proven by you or by anyone else. You can NOT prove a negative. You don't know everything that the combination of vaccines, their added ingredients and the bio-chemistry of the human will produce.
Show me a large scale study that compares the incidence of autism among vaccinated vs non-vaccinated populations and you might proof that vaccines do cause (or at least are correlated with -- which is good enough for rational people) autism. If no correlation is found you still can't say vaccines don't cause autism for there may be more than one cause (and those who really care about this issue are quite certain that there are multiple causes). But you can't show me this study because it hasn't been done yet. Why that is, is a question that people should be asking.
I'd just like to raise my hand and say that correlation is NOT good enough for this rational person!
Logic comes in asking hard, detailed questions, like what is the proof that x=y. I feel a lot of anger out there among parents who disagree with me, but this isn't the way to find your answer or a cure. Focus on other triggers, look at possible predispositions. There's been a tremendous amount of research in the last several years looking at both, and a lot of credit actually goes to groups that helped raise awareness for autism (pro or anti-vaccine). But don't spend those precious resources barking up the wrong tree.
As for a large scale study, please look at this one, although I know there are talking points against it.
http://con
Autism is caused by vaccinnes--look at the vaccine schedule since the rates went up--the vaccines given to toddlers has increased as well--around the same time. This is common sense, and they won't be able to avoid all lawsuits by spinning it with their "medical analysts." After the fraud on the news channels, we should be aware that some people will lie to us in order to keep us from seeking any kind of justice.
Thanks David for reporting on this. Always appreciate your research and thoughts. This whole "hidden horde" issue brings up some heated discussions from all of these folks-- "genes only group", "better diagnosing group", "would have been called another disorder years ago group", "neurodiverse group", "don't bring up the holy grail of vaccines as I am in the herd group", I'm a psychiatri
Thanks.
Teresa Conrick
I agree with quakergeezer below. Another possibility for the high autism diagnosis is that children today being diagnosed with mild autism would have been classified as hyperactive, ADD, or behavior problems in days gone by.
But all that being said, let me list two of the many reasons why I believe the autism explosion is not not NOT due to vaccines:
1. The 2004 Immunization Safety Review Committee report from the NIH is utterly convincing that vaccines do not associate with autism. It is far more likely that the few individuals crying in the wilderness about vaccines (most of whom profit handsomely from their activism) are fudging facts than that the entire NIH is running a conspiracy.
2. We are also seeing an explosion of Parkinson's disease and Alzheimer's over the last 40 years, as well as autism, depression, and adolescent suicide. This can't all be due to vaccines, particularly with the elderly. Something else is causing neurological damage. Pollution? Pesticides? Flame retardants? A new virus or bacterium? Plastics in our food and water packaging? Something is doing it, and the more we focus on the silly, hysterical, and pat explanation of vaccines, the more time we lose finding the real cause.
Ok, to start off, I am paid nothing for acting on this issue! I am a mother who's son unfortunately was a victim of poor research and developing a product that was originally designed to save lives! It means everything to me to find out what did this to my beautiful son.
Secondly, when I am going through all of the facts of what ingredients ( according to the CDC's web page)are in the vaccinations, and I am finding chemicals that are not intended for human consumption, That raises serious red flags in my mind.
Lastly, this is not a waste of time. It is still very disturbing that some people still trust far too much in the government who does have a serious say in what the CDC, FDA, and the NIH are doing. Silly, hysterical tell that to the thousands of parents who all know what their child's abilities were before they trusted their pediatricians to safely vaccinate their child from harm. Tell it to them today as they are struggling to understand all of the madness autism brings to their lives. There is nothing silly or hysterical about that, is there.
Thank you linlou34! I could not have said it better myself.
What poor research and development? Why do you need to blame someone? What is this overwhelming need to place blame that is so strong you deny reality? Are you aware that even if the peer-reviewed research showed a correlation between mercury in thimersol and autism, you would still be a long long way from proving any causation? Because you would have to show just how that form of mercury actually functioned IN EVERY CASE to cause Autism IN EVERY CASE. Since the mercury has been out of vaccinations for a considerable time now and autism still continues, just was is it going to take to convince you people?
KISS - Keep It Simple, Stupid. Surely by now you all must have a study ( since you are all anti-vaxers and scientifically inclined) of the prevalence of autism in children who have never been vaccinated. Keep in mind that this prevalence would have to be ZERO to support the idea that vaccinations cause autism. But I'll bet any of you that the prevalence is the same as it is in the vaccinated population. The simple answer is that autism is caused by unknown genetic defects and that it has existed in human populations for a long long time.
But that idea is unacceptable to anti-vaxers. Why? Who knows. Maybe because they have then only God to blame.
"The 2004 Immunization Safety Review Committee report from the NIH is utterly convincing that vaccines do not associate with autism. It is far more likely that the few individuals crying in the wilderness about vaccines (most of whom profit handsomely from their activism) are fudging facts than that the entire NIH is running a conspiracy
Utterly convincing? When it was completely obvious that they massaged the data in their favor? When they did absolutely nothing to test the efficacy of the cumulative effects of 36 vaccines in such a short period of time? Sure, utterly convincing to those people who believe everything the gov'ment tells them. And most of us are paid handsomely for our activism? Really? Where's my check!! I'm going in the hole because your vaccine gods injured my son and now I can't get any help from the gov'ment because I "make too much money," I can't get insurance for him because he "has a pre-existing condition," and I have to pay for all of his psychological therapy, speech therapy, physical therapy and occupational therapy out of pocket. Yep, I'm just rolling in the dough here.
Hey parents of vaccine injured children..
I get nothing as well. I do not qualify for any sort of help for my son too. I would like to see some help too, Craig. Just as any of us who do not qualify for any sort of aid for our vaccine injured children. I have been fighting with our insurance company for 6 months now for the coverage he deserves to get his dental work covered. I'm sure I am fighting a loosing battle, because according to the ins. co. anything relating to his autism is not covered. Three letters from his pediatrician and dentist urging the ins. co. medically necessary for him to be put to sleep for the procedure. Good God!!! We are 5 people trying to struggle with autism, keeping our home, and caring for our children the best way you can on 1 income. We lost our only reliable and trustworthy daycare, so how does it make any sense for me to go back to work. The school district is terrible, so my best choice is to start homeschooling my son. So, yes, I do get irritated when I hear someone say "most of whom profit handsomely from their activism"! This must be a very comfortable person, no worries, just ducky! It must feel very safe inside the box you live in.
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You make me sick. I am a fairly well paid technical professional but I'm never going to have financial stability in my life because of all the money that it takes to care for a child with autism. My wife and I will never be able to have a vacation by ourselves because our son is just too much to handle for anyone else, and we would never be comfortable leaving him. You must not know anybody who has to deal with a child like this. Most of the activists associated with autism are not making any money they're just trying to help people -- and many of the professional who try to help end up losing their jobs. I'm guessing that some day you will come to know someone in this situation I hope you don't leave them crying in the wilderness -- because that's where most of them are, for the rest of their lives.
Actually, YOU make ME sick. The constant whining about your autistic child, the constant need to blame someone else, anybody else, the constant whining about vaccines and your attempts to endanger the life of every other child in this country make me sick. "... I'm never going to have financial stability in my life ....." so I need to find some one to blame, some one I can sue.
I have a niece with one autistic child and one other disabled child that doesn't do any of the whining you do and her husband is NOT a professional or well paid. To the best of my knowledge they are not looking for someone to sue. And their children don't cost them very much more than anyone else's children because there are plenty of state programs that help out.
For Pete's sake, stop whining and get a life.
leopoldmozart,
Your second point is on the money. And the leading contender for that agent is the very dynamic and destructive neuroimmunological virus HHV-6. Check out the HHV-6 Foundation's site and this post by the father of an autistic child who was contacted by the HHV-6 Foundation about the possible role of HHV-6 in autism:
http://www
What seems to be an HHV-6 epidemic may be linked to some of the explosive increases in the illnesses you mention.
It sure seems to me that they are just searching for more ways around the truth, AGAIN. I wonder who dreams this up, and how well do they get paid. Why do they think that the people are so naive?
Several likely explanations, not mutually-exclusive.
1) Autism is the Disease-of
2) This is an effect of our civilization's long-term biochemical experiment on how many chemical additives our bods can take in without obvious damage. Younger people, more susceptible people, people happening to encounter a larger-than-usual exposure to some potent combination of low-concentration polutants--are suffering significant effects.
3) TV--and the values it deliberately has been inculcating these last many decades, plus the unintended psychological effects of a way of life centered on tv-watching, produces people like the protagonist of 'Being There.' Learning to be a human being after that is an uphill process.
4) Many people who grow up 'a little bit Martian' gradually learn their social cues a little better and disappear from the statisics by their adult years.
Well, I have several things to reply to in your post.
Point 1:
Have you ever met a severely autistic child? I'm not speaking of a high functioning member of the spectrum. I'm speaking of a child who can't feel hot water, who screams at you because he doesn't know how to tell you what he wants because he can't speak, who bites himself and bangs his head against the wall in pain and frustration, who curls up into a little ball from the pain in his stomach from his chronic bowel problems. Yeah, flavor of the month? I think not. How many ADHD kids did you know growing up? How many kids who were "a little off?" How many who could not speak? Now, look at how many there are today and TELL me that there hasn't been an increase.
Point 2:
I actually agree that this has a hugely significant part to play. We have all damaged our bodies with all of these biochemicals, but adding the toxic chemicals in vaccines to this is most certainly not good.
Point 3:
I don't watch TV. Neither does my son. Quite a few of the parents I know who have autistic children also don't let them watch TV. I think that this is a statement released by the AAP to obfuscate what the real cause is. You know, the same people who coined the phrase of "Refrigerator Moms"
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