Others have written about the so-called autism epidemic, and have deconstructed the numbers that make up the myth. I wanted to personalize it a bit with some material from my mail bag. A retired educator who was tasked by the county to assess students writes:
When I was working, I was exposed to many parents of autistic children who were convinced of the link between vaccinations and autism. I met one parent who had all her mercury fillings removed from her own teeth and put her son through “chelation therapy“. I also think that the 1 in 150 children have ASD is partly due to the expansion of the parameters. What we used to call a “language learning disability” - a not too uncommon one– has now been lumped into ASD. Also, Aspergers was separate at one time. True, autism is more prevalent but some of these kids are just nerdy. The NYTimes had an article about these kids which I cut out many years ago and gave them a name which I can’t remember. ( I could say that about a lot of things.)…[Found it.] The term is ‘dysemia’ which apparently also refers to a kind of blood disorder but also is defined as ’social dyslexia’. I just call it nerdy.
The experience of a single educator gives a snapshot into the harm done by the mercury militia and anti-vaccine cults. It also gives a front-line view of the changes in diagnostic criteria, enumerated elsewhere.
Now that the mercury connection is completely debunked, and thimerosal is no longer used in most routine vaccines, the antivax cults are grasping for reasons to hate vaccines, despite their clear benefit. Rescuing the public from cultist lies is a constant battle, but thankfully we are well armed—with truth.
March 11, 2008 at 6:11 pm
It doesn’t help that we are getting in-your-face media reports. Now we have a government settlement in the case of an unfortunate Georgia girl with a mitochondrial encephalopathy. Her parents blamed the vaccines for the decline in her status and autistic behavior. The anti-vaccine crowd are heralding this as a victory as the government is now conceding that the vaccines cause autism.
We may be armed with “the truth”, but they are armed with emotional anecdotes and a fearful public ear.
The general public does not understand statistics and randomized controlled trials. They certainly don’t understand bland statements from nerdy scientists.
It is time that the CDC, AMA, ACP, AAP and other acronyms join together to present other heart-breaking, emotional anecdotes. We need commercials showing fetal rubella syndrome, H.flu meningitis, babies with pertussis on ventilators, and mumps tragedies. How quickly the public forgets the days of the iron lung.
March 11, 2008 at 8:32 pm
You might consider making common cause with the neurodiversity and autistic self-advocate movements. By and large, people on the autism spectrum themselves oppose the anti-vaccination cults and the sorts of quack therapies they impose on children, not to mention the counterproductive and offensive “epidemic” rhetoric they spout.
March 11, 2008 at 8:38 pm
Yes, there is a lot of contact between sites like this and autism blogs. See http://scienceblogs.com/insolence for a start.
March 11, 2008 at 9:34 pm
If something is wrong with a child many parents feel the need to be able to place the blame somewhere external to themselves. These parents want to be angry at something.
Get enough of these parents together and someone will come up with a way to focus the blame somewhere.
The argument does not have to be very strong scientifically because it is emotionally satisfying.
I recently read a suggestive autism study that studied a group of children from almost birth and imaged their brains as they aged and analyzed the amount of television watched and the rate of information that was presented on the television compared to the rate of information of human interaction.
The study reported a good correlation between changes in brain structure similar to that seen in autistic children with increasing # of hours of television watched resulting with increasing brain structure changes.
Their conclusion was that the brain changes due to the rate of information to which it is exposed and that
it can becomes hardwired to respond to a rate different than that seen from normal human interactions. This was supported by both the brain imaging and language development of the children.
My niche is visual dyslexia and I only read occasionally about autism. What I was interested in was that the study started with a group of infants and was able to watch the brain differences develop. Dyslexia studies that have seen brain structure differences only start after the differences are in place and assume that the brain started that way. I have always wondered if the brain structure differences seen in dyslexics were causal or effected by environment perhaps with genetic susceptibilities.
As I have said, I don’t read that much about autism. I am not familiar with the researchers and have no feel as how to weight that study. Correlations are not evidence of causality but they can be suggestive.
So, could it be the cultural change of having the one eyed monster baby sit our children that is causing the epidemic? When did mothers start putting babies in front of the television ? Is it reasonable to think that autism is partly caused by being exposed to a different rate of information as experienced by television watchers.
March 12, 2008 at 9:03 am
I disagree that we are all armed with the truth. There are those that will continue to believe that autism is caused by vaccines, no matter what evidence to the contrary is put forward. People like this rarely are willing to admit to facts. There are more of them than you think, and they feed on the Internet. Add a few vocal, famous idiots like Jenny McCarthy and you have a culture of willful ignorance that bids fair to continue into the foreseeable future.
We live in a culture of blame. Things can’t “just be.” And we are all too willing to “diagnose” everybody, even our children, with something. How many people think they have social anxiety disorder, or restless leg syndrome.
My mom was an educator for 30 years, and still works as a substitute teacher. In her 30 years, she has seen the number of diagnoses grow (ADD, ADHD, and many others whose acronyms I don’t know) and the amount of drugs kids are on grow accordingly. I’m betting many of the same people who are willing to blame autism on vaccines would also be willing to pour any new chemical compound into their children’s bodies if it were presented as a “treatment” for autism.
March 12, 2008 at 9:04 am
I always wonder why things like this are such a hot topic. I am wondering if you have been touched by autism, or has any of the people commenting on this topic. My son has Asperger’s syndrome. Yes, I am afraid of vaccines—who wouldn’t be if you lived with this day in and day out. It didn’t keep me from vaccinating my son and other children, but I did it with trepidation.
NO, I am not trying to find BLAME, instead I am trying to find answers to somehow make this world a little easier for my son.
NERDY? Yes, my son is “nerdy” but for the most part when someone is just “nerdy” they do not have the serious and extreme reactions to their environment and social interactions. Clearly after living with this for 15 years and being an educator myself I can conclude that there is more to this than being “nerdy.”
While I think children watch FAR MORE tv than ever good or necessary I would also have to say I doubt it plays into this very much. When my son was young –baby to 3 I believed he should not watch TV. Shortly after 3 we moved overseas and didn’t even have a TV for almost the next 5 years.
I guess I feel compelled to write because I think that there are many factors that play into this debate. While I would love to know what caused this and find answers it doesn’t change that this is my life. It is difficult and some days we are so overwhelmed. When I see people give such pat answers and have their simple hypotheses I know that most people will never understand the depth of this disorder and what it is like for these families to live everyday.
March 12, 2008 at 9:59 am
I wouldn’t be afraid of vaccines if I had an autistic child, because there really is no evidence linking vaccination to autism, despite the hypothesis having been investigated thoroughly. Are you afraid of radio waves? The moon’s gravity? Sunflower seeds? Any of these things have as much claim to causing autism as vaccines (which is to say, none).
I’m not trying to make light of your experience, at all. I’m just saying that the severity of something doesn’t have any bearing on the facts about its origin.
I get confused myself over the “just nerdy” thing, because this touches me personally. My boyfriend - who to my experience has very few, if any, signs of autism - was diagnosed autistic as a child. His family believes he has autism and uses this fact in arguments. But I see none of it, and I can’t figure out if he miraculously recovered, was only extremely mildly autistic to begin with, or was misdiagnosed. (He certainly is nerdy.)
March 12, 2008 at 10:00 am
There are many unknowns and few “truths” when it comes to most subjects dealing with autism spectrum disorders. Mistakes have been made by parents and the medical community. Parents like Dr. Poling have asserted that vaccines caused “autistic like behaviors”. Current studies address the issue of vaccines causing autism, not the lesser subset of “autistic like behaviors”. There are currently no studies that can verify the “rarity” of Mitochondria disorders in the general population or the ASD population according to the Mitochondria association that I found on the web. Doctors often misquote the time range that Thimerosal was removed from vaccines except the routinely administered influenza vaccine. 94% of this years flu supply contained Thimerosal
The unknowns continue down to the lowest level of who is autistic. Because of the currently used set of criteria from the DSM-IV, doctors may misdiagnose 20% of their patients
http://www.springerlink.com/content/b081u2j54705m240/
The current list of criteria may also be used as a replacement diagnosis for MR, proving that DSM-IV is incapable of defining ASD or providing differential diagnosis criteria between MR and ASD. After the doctors over diagnose or mis-diagnoses, these same doctors rarely actually treat these patients.
The only real truth is there is an epidemic of ignorance when it comes to defining ASD, diagnosing ASD, and treating ASD. Given all this, how could any study possibly find what causes ASD?
March 12, 2008 at 10:06 am
Annoying comment:
“If something is wrong with a child many parents feel the need to be able to place the blame somewhere external to themselves. These parents want to be angry at something.”
Have you been exposed to children with severe ASD?
Autism is not a naturally occurring event. Of course there is “something” that caused it. Vaccinations and the toxic chemicals, excluding thimerosal, such as aluminum and formaldehyde, are not good for children either.
Its not about anti-vaccination, it’s about safe vaccinations.
March 12, 2008 at 10:49 am
Blind Watchmaker said “We need commercials showing fetal rubella syndrome, H.flu meningitis, babies with pertussis on ventilators, and mumps tragedies. How quickly the public forgets the days of the iron lung.”
That would not bother the Mercury Militia. They do not care.
I know from personal experience that the most vocal have absolutely no understanding or empathy for those parents of kids who suffered from actual diseases.
Oh, and Dave… My son had a seizure disorder. His last very major seizure was during a time he had a now vaccine preventable disease when he was little over a year old. It may or may not be the reason for his inability to speak and his still evident severe learning disabilities (age 19, community college with disability services).
Yes, some of us have been dealing with disabilities and ill chilren way before there was an Internet.
And if it is just about safe vaccinations, why does the Mercury Militia still scream about thimerosal when it has been removed from pediatric vaccines (there are even thimerosal free influenza vaccines)? Oh, and now they are going on about other ingredients… or just the vaccines themselves. Also, they scream about the MMR, which has been around since 1971 and has never contained thimerosal (was there a big jump in autism in the early 1970s?).
This might explain some of the effects of vaccines:
http://archpedi.ama-assn.org/cgi/content/full/160/3/302
So tell me, which vaccine in the present pediatric schedule is more dangerous than the actual disease? With real evidence. Show us how much more horrible the MMR is than rubella was during the 1960s, or measles in the USA between 1989 and 1991, or the small mumps outbreak in the American Midwest where four people lost their hearing and several young men might have become sterile:
http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5520a4.htm.
(that was answered on Orac’s blog yesterday by some idiot blaming mercury in Japan… ummm… the MMR does not contain mercury, try to do better)
March 12, 2008 at 10:54 am
In the mid-twentieth century, parents (actually, mothers in particular) were blamed for their children’s autism. They were cruelly presumed to be cold and withholding mothers–a charge that says more about expectations of women than it does about the etiology of autism. So, please bear this in mind–I think it’s extremely unfair to write that “if something is wrong with a child many parents feel the need to be able to place the blame somewhere external to themselves. These parents want to be angry at something.” It’s only recently that mothers of autistic children weren’t automatically assumed to be responsible for their children’s heartbreaking conditions.
However, I also have to question Dave’s statement that “Autism is not a naturally occurring event. Of course there is “something” that caused it. Vaccinations and the toxic chemicals, excluding thimerosal, such as aluminum and formaldehyde, are not good for children either.” To be sure, there should be more research into what the costs are and will continue to be of our “better living through chemistry” lifestyle, although the vaccination shibboleth has been thoroughly discredited. There is some interesting, new-ish research by historians on illness and disability in history that may help shed some light on the possible causes of autism. For example, Rab Houston and Uta Frith’s book _Autism in History: the case of Hugh Blair of Borgue_ (Oxford, 2000) makes the case that this 18th Century landed scotsman was autistic, and their sources are the legal proceedings documenting evaluations of his fitness to marry. (He was frequently referred to, in the argot of the time, as an “idiot” or a “fool.”
Well-documented case studies like this one may spur researchers on to uncover genetic rather than environmental causes of autism, and in that case autism may indeed prove to be a “natural” condition (or at least one that is not caused by modernity and its toxins, but that may be endemic in human populations across time). PLEASE NOTE: I’m not vouching for the book or its argument–I haven’t read the book myself, but rather am passing it along to Pal MD’s reading audience for your consideration.
March 12, 2008 at 12:02 pm
Wow, quite a set of responses. First, just to reassure everyone, I was not trying to imply that many autistic kids are “just nerdy”; only that the the definition of ASD has broadened significantly over the years, making it less of an epidemic, and more of a redefinition surge in diagnosis.
Not all diseases have a cause that is easy to point at, as much as the Daves of the world might wish. As Historiann pointed out correctly (dispite her sad misuse of the word “Shibboleth”, but I won’t tell anyone, er, oops, i just did, sorry, prof), mothers were usually blamed for autism and schizophrenia. According to one knowledgable source (OK, my mom), they were known as “refrigerator mothers” because their supposed coldness caused kids to be autistic.
Just as that was a disproven hypothesis, so is the vaccine connection. We are never likely to find one cause for “autism” or any other “spectrum disorder” as these syndromes encompass many different diseases.
Research into causes of various ASDs is ongoing, with genetic causes already having been found for some of the rarer types. Just as important, research is continuing into treatments. Given the huge diversity of people currently covered by the ASD label, some will need intensive life-long treatment, and some are just a little odd. Many physicians, were they evaluated, would fall into an Aspergers category—socially a bit limited, but brilliant in their field…
(And I hope Historiann doesn’t mind a good-hearted jab : ) )
March 12, 2008 at 2:28 pm
In the mid-twentieth century, parents (actually, mothers in particular) were blamed for their children’s autism. They were cruelly presumed to be cold and withholding mothers–a charge that says more about expectations of women than it does about the etiology of autism.
While I agree that social expectations probably played into this claim, I wonder if some of it wasn’t an example of people observing a correlation and mistaking it for causation. At least some autism has a genetic basis. Therefore, the parents of the autistic children under study might themselves have been on the autistic spectrum and so might have appeared “cold” to neurotypical observers. Also autistic people tend to be rather sensitive to being touched, among other things, so the parents might have learned not to be too aggressively “warm” and demonstrative with their autistic kids. So the observation that autistic kids tended to have “colder” parents might be real on some level, but the explanation of what it meant still completely confused.
March 12, 2008 at 4:01 pm
Hear hear Pal.
I could also adapt what you said about physicians for academics, especially scientists:
“Many science Professors and eminent scientific researchers, were they evaluated, would fall into an Aspergers category — socially a bit limited, but brilliant in their field.”
In fact, in some scientific fields, like molecular biology, I would almost be ready to go from “many” to “the majority of”… But maybe it’s just the ones I’ve met.
I seem to remember British austism expert Prof Simon Baron-Cohen arguing that the “autism spectrum” is effectively one end of the human spectrum between “super empathic, no systematising ” and “systematising, zero empathy”. If one accepts that, then the divides between “Asperger-y” “geeky” and “normal” would just be a question of where to fix the cut-off.
March 12, 2008 at 4:05 pm
excellent post and very good comments. I can’t really add anything, except that I’ve always found that 1/150 autism statistic unbelieveable, although I do believe that I myself suffer from many of the symptoms of autism in a mild form.
March 12, 2008 at 4:32 pm
‘Research into causes of various ASDs is ongoing, with genetic causes already having been found for some of the rarer types. Just as important, research is continuing into treatments. Given the huge diversity of people currently covered by the ASD label, some will need intensive life-long treatment, and some are just a little odd. Many physicians, were they evaluated, would fall into an Aspergers category—socially a bit limited, but brilliant in their field…’
Our daughter received a PDD diagnoses after a large round of immunizations at Children’s Hospital Oakland after extensive testing. We moved to Southern California to pursue intensive therapy with a Developmental Pediatrician, Pediatric Neurologist, Speech therapist…I am not in any way your crazy crusader. I want to see what’s put into a child’s body safe. She is now characterized as Asperger’s.
What offends me about many of these comments is “odd” or “geeky” or what’s normal or not? I have met many an individual with a full range of personalities who do not fall on any spectrum. Regardless of the cause, I know my daughter notices when someone calls her “odd” or “geeky” and she cries tears just as you and I do. She has worked quite hard to come this far.
Wh
March 13, 2008 at 6:35 pm
Last week CNN had Mrs. Don Imus commenting on the Georgia case: how barf-inducing! It is amazing to me that the media give air time to anti-vax crusaders as though they represented a legitimate point of contention in the medical community. I live in NJ which is now a hot bed of anti-vax activity partially because Gov. Jon Corzine has invoked the wrath of these groups by requiring additional vaccines for school children. Thanks for the post on this issue, Pal.
March 13, 2008 at 6:39 pm
Yeah, the Imus’s are particularly vile. Mix stupid with paranoid, and give it a microphone…
March 13, 2008 at 7:46 pm
Mercury was once used in a lot of medicines, the doses used in vaccines are very mild. The doses of mercury that were used in teething powders were on the order of a grain of calomel, about 50 mg of mercury per dose. That is 50 mg, about 4,000 times the dose of mercury in a vaccine (12.5 micrograms). These are the levels of mercury that caused pink disease. Pink disease killed multiple children a year. They were killed by mercury poisoning. Teething powders containing a grain of calomel per dose were sold by the many millions of doses per year for many years. Many millions of children received thousands of times more mercury from teething powders than children a decade ago ever received from vaccines.
Let me repeat that. Many millions of children received thousands of times more mercury from teething powders than any children ever received from vaccines.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=10645305
Were there millions of cases of autism when those children were being given such doses of mercury?
March 14, 2008 at 12:46 pm
Doesn’t mercury in the teething powder go through a different filtering process (digestive tract) then the mercury in vaccines? Different filtering processes and different toxic exposure could explain the difference between teething powder and vaccines.
Diagnostic criteria at that time were not as broad and there were only a relative handful of doctors who even knew about the diagnostic criteria. Autistics at that time would have been labeled as MR, Schizophrenic, Idiot, or something of that type.
March 14, 2008 at 12:50 pm
It would depend on the type of mercury that was in the teething powder. I never knew about it.
March 14, 2008 at 6:24 pm
I had a back and forth with a “mercury causes autism” advocate on Dr Novella’s blog.
http://www.theness.com/neurologicablog/?p=203
She eventually gave up.
There are some links there to physiology of mercury. The Burbacher TM paper shows that ingested methyl mercury produces a much higher blood level and brain level of mercury than does the same mercury dose as injected thimerosal. Thimerosal does deposit somewhat more inorganic mercury in the brain than does an equivalent dose of methyl mercury (maybe 2x). There has been no data to suggest that that difference is important or that it causes any harm.
Methyl mercury is the form of mercury in fish. A can of tuna fish has more mercury than a vaccine dose. The Burbacher paper shows that methyl mercury is very well absorbed and produces higher blood and brain mercury levels.
I cite a paper there where mercury content of brain tissue from people with autism (n=9) is compared to that in controls (n=10). It is about the same, the difference was not significant.
Maybe the kinetics of calomel absorption are different, but when you give 4,000 times more, they have to be hugely different for the 4,000 times greater dose to not be worse. Some children received multiple doses of these teething powders.
Lots of children did die from pink disease (probably hundreds) which we know now was mercury poisoning. No one has contracted pink disease and no one has died from pink disease from receiving a vaccination containing thimerosal.
March 15, 2008 at 7:10 pm
Was the mercury content of the brain tissue study done prior to 1994 and the change in DSM-IV or after?
March 16, 2008 at 1:36 pm
John, There is only the one study of mercury levels in autistic brains that I have seen, and that was published in 2008. The time of death of the subjects wasn’t listed in the paper and the average age was 12. The youngest was 7, the oldest was 32. The range of brain mercury levels in the 9 autism cases was 3.2 to 80.7 and in the 10 controls 0.9 to 35 pM/g. When the averages were calculated only 6 of the autism cases were used getting an average of 25.11 +/- 8.25 vs. 14.93 +/- 3.26 in 10 controls. There is no explanation of why 9 autism cases were tested for mercury but only 6 used in the statistical analysis. Perhaps it is a misprint. In any case the difference is reported to be non-significant. Even 80 pM/g isn’t that high. Levels in Japan are reported at around 314 pM/g (averages from a table).
There haven’t been many studies of brain levels of mercury in humans that I have been able to find. I have only seen reference to about half a dozen studies from around the world, and the mercury levels pretty much tracked the usual fish consumption of the population, with Japan and Korea higher and with the Faroe Islands 2-3 times higher. Normal dietary intake is highly variable.
The ratio of mercury in hair to cerebellum was reported as 71.5 and 74.6 in studies where the cerebellum mercury was 26 and 314 pM/g. The ratio was remarkably similar despite a 15 fold difference in mercury levels. Mercury in the brain likely has a shorter lifetime than in the hair, so the hair integrates exposure over longer periods. If those ratios hold (and there is no reason to suggest they should not), then there are many individuals with much higher levels of mercury in their brains who do not have autism. That would put the Faroe Islands brain mercury levels in the 500 pM/g range, more than an order of magnitude above the autistic levels found in the McGinnis study. The incidence of autism in the Faroe Islands is no different than any place else.
What is interesting in looking at a lot of the literature again is that oral methyl mercury is absorbed better and produces higher blood and brain levels than does methyl mercury injected IM. This was observed in mice where the same dose of oral methyl mercury produced 3x higher brain concentrations both 24 hours and 7 days after dosing. This was for methyl mercury oral and injected.
The oral methyl mercury to IM thimerosal ratio was about 7. Equivalent doses of oral methyl mercury produced 7 times higher brain mercury levels than did the same dose of thimerosal injected IM. In thinking about the reasons for this, transport into the brain is active, via amino acid transporters. That transport is going to depend on the concentration in the blood. The mercury in fish is methyl mercury. If mercury from dietary fish is better absorbed than IM thimerosal, then almost any level of fish consumption is going to deliver more mercury to the brain that will childhood vaccinations.
I have put some more stuff on pink disease on Dr Novella’s blog.