My letter in response to the LA Times article: Bringing science back into America's sphere on Chris Mooney's book "Unscientific America"
Lori, Chris and Sheril,
I am an autism parent with an MS is Clinical Counseling from Johns Hopkins University and a contributor to Age of Autism. I maintain my own blog at Adventures in Autism.
I saw Lori's piece today and would like to point out a few things that seem incredibly obvious from where I am sitting, but you genuinely don't seem to have on your radar (from what I could tell from the article), in regards to why America is not embracing "science" as you think they should. I hope you will be open to hearing from me for a moment, because there is a problem, but the problem may not be the public.
I feel like you may have confused actual hard "Science" with "things that most scientists think", as there seems to be a denial of the fact that scientific consensus has quite often been, and most assuredly still is in many places, wrong.
Chris and Sheril wrote: "...today this country is also home to a populace that, to an alarming extent, ignores scientific advances or outright rejects scientific principles."
I would put it to you that it may not be the "scientific principles" that are being rejected, but the principles of the scientists.
When my son regressed into autism following his 18 month shots and I spent a year trying to reconcile all of the contradictory positions of my own pediatrician, the AAP, the CDC, HHS, the "science" you say exonerates vaccines from autism causation, the whole of the research out there and the facts of my own son's case. What I found was a ridiculous mess.
What you keep referring to as "science" is making contradictory statements all over the place. It resembles nothing like the thing that "Science" is actually supposed to be, the methodical study of phenomena to figure out what is ACTUALLY, TRULY happening.
Yet the statements that scientists make claim that all the vaccine/autism questions have been answered, purport that all the possibilities have been explored and suggest that people should just kill what intellectual curiosity and concern for child safety that they have left and move on? How is that "Science"? How is that not laughable?
Case in point from Lori's article: "science has come in and we can't detect the correlation between a rise in autism diagnoses and use of childhood vaccines. And study after study has been done."
Yet "science" has never done a simple study that took a large group of vaccinated children and a large group of children whose parents chose not to vaccinate them, and compared them for autism incidence! Yet you suggest that it is time to let the vaccine/autism question go? The FIRST study that "science" should have done, still has never been done! And it may take an act of congress to actually make "science" do something it apparently really does not want to do. And that is only the beginning of the studies that have not been done.
Not to mention the fact that "study after study" is picked apart by other researchers, and even by lay parents, but those critiques are ignored by people like you who don't want to follow the actual scientific method. This same bizarre conversation is carried out over and over:
Mainstream science: "Here is a study... look no vaccine/autism connection".
Autism community: "Hey... look here... you guys forgot to carry the 3. Wait... half of our kids' medical histories are in the exclusion criteria!".
Mainstream science (now with their back to the autism community and facing the microphones): "Awww.... poor desperate, scientifically illiterate parents looking for someone to blame. At some point they really have to let go."
There are about a thousand questions on the vaccine/autism connection that neither scientists nor research has ever addressed, and the medical establishment won't even allow to be asked in their "pulpits" because "science" is the new religion and their dogma cannot be questioned. Scientists are the priests, and those who diverge from the canon are branded heretics. Vaccines are inherently "good" and cannot be "bad". The research that points to vaccines causing autism is treated like the evidence that priests were molesting young boys... ignored, buried and those who dared call attention to it are bullied into silence. And yet you have a problem with the suppression of discussion of evolution in churches? Again.... from where I sit, the hypocrisy of your statements are stunning.
The scientific community overstates the benefits of vaccination and understates the risks. And of course they do, vaccination is their baby. Yet they don't seem to have the insight to understand that there is a conflict of interest there. Last year the AAP sent a representative to a Defeat Autism Now! conference to evaluate the state of their science into autism/vaccine causation. They sent Louis Cooper of the Sabin Vaccine Institute, one of the inventors of the Rubella vaccine. Seriously? Lou Cooper is the objective guy that is going to return to the AAP and declare, "You know what guys... I think the vaccine I invented and that is my greatest accomplishment in life may be playing a role in an epidemic of lifelong and deadly neurological disorders that are striking around 1 in 100 kids! I think we may have caused an epidemic!"????
I don't think that you have fully grasped what has happened in the vaccine/autism wars. A very large group of parents, physicians and researchers have made the accusation that mainstream medicine, the scientific community and public health authorities have created one of the largest iatrogenic epidemics of all time via an overzealous and under researched vaccine program. A very serious charge. Your community has responded to that charge by doing a minimal amount of shoddy research, in most cases paid for and carried out by the pharmaceutical companies that made the products in question and the agencies that made the policies that put these products into almost every tiny body in this country regardless of their risk factors, while simultaneously mocking those making the charge.
You have declared that YOU HAVE INVESTIGATED YOURSELVES AND FOUND THAT YOU ARE NOT GUILTY ON ALL CHARGES! And the policy makers among you have made sure that no appeal can be filed in an actual court where your accusers can bring evidence against you, compel you to testify under oath, or compel you to turn over internal documents, as you have passed legislation exempting yourselves from any liability or litigation. You claim innocence and just tell us that we have to take your word for it, as if "smart" also mean "honest", "incorruptible", "omniscient" and "looking out for the best interests of the public and all individuals".
Why in the world do you think that your reputation should be on the rise?!
What is happening is denial on a scale far grander than what transpired during the initial Semmelweiss Reflex. You want the public to embrace science, even the science that they don't want to face? You go first!
I started to write more on all of the corruption that is going on in the medical and scientific industries, but who has that much time.
Yes... to solve the problem that you want solved, reportedly that you want mainstream American to embrace "science", "Scientists are going to have to have a culture change."
But the change you suggest is the wrong one. You don't need more scientists (or more nerds rapping about super colliders), you need the scientists you already have to have a come to Jesus moment. The scientific community needs to understand that their hubris, arrogance, devaluing of the individual, ethical problems, legal problems, widespread conflicts of interest and constant denials of any evidence that is inconvenient to the advancements of their "scientific" agenda is the problem, and has to come to an end.
The scientific community needs a big dose of humility, and needs to consider the fact that their critics and those ignoring them, might have a few good points.
They need to listen to, and be able to cogently address their critics, instead of marginalizing and maligning them. And if they don't have an answer, they have to offer informed consent to the public and admit that they don't have an answer.
People see right through condescending BS. People have a tendency to treat you with the same dismissal with which you have treated them. What you are seeing may not be a "deep-seated streak of anti-intellectualism" but a deep-seated distrust of self-proclaimed "intellectuals" who openly disdain the unwashed masses, then wonder why their scientific pronouncements hold no sway with them.
Take minute and go read any autism/vaccine post on Orac's blog, as he is the rock star of the "woo" bashing 'skeptics' in your universe. Now pretend that you are a parent who has learned that thimerosal at nanomolar amounts causes mitochondrial dysfunction so severe that it can cause the cell to self destruct, and that HHS has conceded that in the Poling case mito dysfunction + vaccination = autism symptoms. And pretend that one of your questions are that if vaccines are known to cause Guillian-Barre, an autoimmune disorder in which the immune system attacks the central nervous system, then why can't they cause autism, an autoimmune disorder in which the immune system attacks the central nervous system? And pretend that you want to understand that if one vaccine contains enough adjuvant to stimulate the immune system sufficiently to put it on a search and destroy mission for viruses, then why do docs give five shots at once and claim it couldn't possibly overstimulate the immune system in some into a search and destroy mission for its own tissues; and why can't it cause the autoimmune state and neuroinflammation found in autism? And then pretend that you are confused by the stance of "science" that a fetus contracting Rubella is a known cause of autism, but that that a one year old being given a live virus rubella vaccine couldn't possibly cause autism; while remembering that VICP has ruled that Baily Banks would not have had ASD if not for his MMR.
And pretend you saw Julie Gerberding go on CNN and say that vaccines can cause autism and cannot cause autism.
And then pretend that you spend untold hours on pubmed and in chat rooms and on HHS/CDC/AAP web sites and you can't find any cogent answers for the questions you have. And pretend that your own pediatrician just got annoyed with you for asking questions he couldn't answer and then just stopped returning your calls.
And then go read Orac again (or any 'skeptic' blog or even your own article in the LAT) and ask yourself... 'why would any thinking person want to listen to us when we can't answer their questions and instead treat them with contempt to cover the fact that we can't answer their questions'?
Your 'skeptic' community's message to the public and parents like me? "You are an idiot and we have nothing but contempt for you. Now think what we tell you to think and do what we want you to do, even if it doesn't make sense".
Treat your audience like crap, and they will leave. Claim to be a scientist and spout completely unscientific and illogical statements (mean ones at that), and no one will care what you say.
Chris, when your own suggestion on how to fix the problem that you have defined is to lean more about the people who are resisting your message, not so that you might learn from them as to where you might have gone off the tracks, not even so that you might enter into a mutually respectful relationship with them where you are on the same level (what with you being "super smart", "highly educated" and "doing great stuff" while they are way behind you on some imaginary starting point), but so that you might condescend to where they are in order to manipulate them into believing what you want them to believe... can you see that you can't even see what the real problem is?
It is clear from this article that those you target, you do not consider your equals.
"Smart" is not the only virtue, and it may not even one of the most important virtues. Look back at the people who have done the most damage to humanity through out history. You will be hard pressed to find a dummy among them.
Ginger, I posted at AoA as well but wanted to thank you on your own blog for writing this incredible response. You did a great job. I am a relatively new blogger but posted my reaction on my own blog at http://embracingwellness.blogspot.com/2009/08/fallacy-of-scientific-consensus.html
Girl, I nominate this article for BEST ARTICLE OF THE YEAR OR DECADE ON THIS TOPIC.
Whenever anyone starts the science argument with me. I mention scientist thought the world was flat and the sun rotated around the earth. At one time they thought Polio was caused by peaches, it was safe to take thalidomide, refrigerator moms caused Schizophrenia the list of mistakes goes on and on. Science is simply our best guess at the time. It is constantly changing and never absolute.
Just wanted to say great posting! Also share with you my vaccine experience. I have a child that immediately after his one year old vaccines started having diarrhea that would not go away for the next 5 years. At age 3 he was diagnosed with Ulcerative Colitis and Primary Sclerosing Cholangitis ( uncurable liver disease ). I KNOW AS A MOM THAT WAS CLEANING UP THE DIARRHEA THAT THIS STARTED THE DAY AFTER HIS 1 year vaccines. Now I have a child with an autoimmune condition for life. The neat thing is that his condition improves with IV Glutathione,,,just like Autistic children improve with glutathione. WIll a doctor acknowledge the fact that the vaccines caused it or triggered it ,,,no,,,,but it is documented in the medical literature. He was given half of a flu vaccine at age 5 and had to be hospitalized with bloody diarrhea. I was told to never give him a vaccine again. He will not be getting the H1N1 vaccine!
Ginger takes first prize for best blog that slams all the scientist for being bald faced, dirty dealing, double crossing, liars.
She right about everything, all they want is for us to buckle under and line up for more shots without questions.
And all the while knowing the vaccines don't work but are damaging to the body.
They do know, don't want to know and all because they know that when we prove that they did cause this epidemic, there will lawsuits into the next century on all of them. I say hell will be too good for them.
One of our members at the Feingold Association sent me the amazing post in response to the LA article. And as Kim Rossi said, we damn well better figure out how to prevent this before all our kids are on the Spectrum.
Did you know that actually one study - the only one I have ever found anyhow - was done comparing a group of vaccinated with unvaccinated kids. It was Yoneyama in 2000 - http://www.feingold.org/Research/vaccinations.html#Yoneyama - and while he was not considering autism, he did find that those who were vaccinated had many times more asthma and atopy than those who were UNvaccinated.
One problem with doing another comparison study is that it is simply hard today to actually find unvaccinated kids - and parents of those who choose to unvaccinate are often different in other respects, such as being more educated or having other children with autism. That causes a matching problem in research.
However, there is another possible - and easy - study never done: Waring in England has long found that kids with autism (and ADHD too) are low to very low in the enzyme phenol-sulfotransferase (PST). I believe that other problems with sulfate metabolism may also be found or may be easier to measure. Well, now, if there is a difference, that could mean either:
1. Kids with low PST are going to be at risk and should not be vaccinated, or
2. The vaccine suppresses PST so that those on the lower end of the normal level can be pushed into a deficiency, or
3. Some kids are deficient at birth and they are the ones who will get autism regardless of vaccination.
Now do you see the format for a simple study? It's called MEASURING the level of PST or sulfate at birth. MEASURING again after vaccinating these normal babies. MEASURING again at age 15 months whether or not they have been vaccinated .... do the kids not vaccinated get low at that time if they weren't low before? Or do the kids who are normal become abnormal after each (or some) vaccination?
So, here is my message to the scientists:
Science should not be about second-guessing anybody or making proclamations. If you want to DO any science, then MEASURE SOMETHING. Who knows? We might actually discover that certain kids are at risk ... before we damage them.
On the other hand ... the scientists would be hard pressed to know what to say if they find that the PST of ALL kids is suppressed, moving the entire bell curve to the left ... it sure would cost somebody one heck of a lot of money to untangle that mess ... so you can certainly understand why this study may never be done -- they may actually discover the world is not flat and put all the mapmakers out of business.
Please please ... Get some funding, lobby for change, and do your OWN scientific ... yes SCIENTIFIC studies ... get help from all 'these' scientists on what the best practices are ...
Your own research will be invaluable!
This post was a great 'opening act' for my research into the dangers of vaccines. It was easy for a beginning reader to understand, and allowed me to think of my own questions that I can further research on my own. In this day and age, people act like 'being an individual' means dressing differently and listening to unpopular bands. I find it distressing that people who demand answers and think for themselves aren't considered 'individuals', but bothersome troublemakers who are looking to 'blame' someone for a tragic occurrence. You are an individual, and I applaud your thoughtful posting.
Just saw the LA Times article. I love (not!) the so-called scientific objectivity that compels Mooney to proclaim that religious belief is an obstacle to science.
With astounding ignorance like that, how can he have credibility on any other issue? But this attitude is representative of precisely why "science" is being pulled off its pedestal.
To borrow a phrase, 'science has not been tried and found wanting, it is still wanting to be tried...'
Ginger, this is regard to your statement: “There are about a thousand questions on the vaccine/autism connection that neither scientists nor research has ever addressed, and the medical establishment won't even allow to be asked in their ‘pulpits’ because ‘science’ is the new religion and their dogma cannot be questioned.”
This is an extremely accurate assessment.
It seems, after spending over a year reviewing scientific literature, that there is really no safety first approach to vaccines. It seems that the declaration that “science” is in use with regard to vaccine safety is a total sham.
The process appears to go something like the following: (1) come out with a new vaccine, then (2) do a modest clinical trial that cannot possible look at all acute and chronic risks, then (3) declare the vaccine a success, and then(4) conduct the real vaccine safety trial on the public with children used as guinea pigs.
Consider for example the published medical correspondence from 1959 to 1961 regarding “safety” of thalidomide.
“For nightly hypnosis, however, satisfactory alternatives are available. Dichloralphenazone (" welldorm ") gr. 20 nightly, and thalidomide (" distaval ") 50-100 mg. nightly, have proved completely satisfactory for home and hospital use and are, in our opinion, much to be preferred for routine sedation and should completely supersede barbiturates for this purpose. The wide margin of safety of thalidomide in particular, as reported by De Souza(1) and Burley(2) is a further recommendation of its use.”
T. N. RUDD, R. N. GREENHALGH, Southampton General Hospital
“It has always been our aim to disseminate all information, good or bad, about thalidomide by every means available to us, and a reference to peripheral neuritis was included in our literature as early as August, 1960, after we had come to hear of only six cases.”
The Distillers Company (Biochemicals) Limited
“It is claimed that this drug is non-toxic in that it does not produce untoward effects even if taken in large overdose. This claim is based on animal experimental work in which it proved impossible to determine a minimum lethal dose.”
L.P. DeSouza Southampton
The historical fact that these “experts” ignored the basic statistical principal that Absence of evidence of harm is not evidence of absence of harm seems to be lost on modern medical “experts” when it comes to vaccine safety.
And... excellent response! Thank you!
how beautifully and succinctly (and SMARTLY) you have summarized our struggle. It will be hard to dispute your logic. But as you have stated, it's not really about being smart, is it?
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