Update: British Bulldog Attacks Dr. Wakefield Again
Brian Deer – history repeating itself as farce.

Florida Autism Dad Writes to NIMH's Dr. Tom Insel

Fatherhood Managing Editor's Note: Here's a fine example of a parent/patient advocate (aka, a father warrior) educating the leadership to exact positive change.  Dr. Tom Insel is the Director of NIMH.

By Brian Scott

Dear Dr. Insel,

I am writing to you in hopes of convincing you that there is much to be learned by evaluating the possible relationship between a more aggressive vaccination schedule and the apparent increase in autism diagnosis.

In the last few years, there have been a series of articles published in widely respected journals that unquestionably point towards the presence of an ongoing inflammatory process in children with autism; and in some cases, specifically, in the brains of people with autism.  Considering these findings, I believe it is prudent that we find a way to determine if the artificial stimulations of our infants immune systems at an early age may be related to what has been observed at a diagnostic level. 

Specific examples of an ongoing inflammatory process in the brain and CNS of people with autism have been observed in at least three studies in the past four years:

In January of 2009 researchers in New York published "Elevated immune response in the brain of autistic patients.".  When compared with control samples, the brains of people with autism were found to have highly increased levels of several inflammatory cytokines, including TNF-alpha, IL-6, and IFN-gamma.  The authors concluded that localized brain inflammation may be related to the pathogenesis of autism.

In 2007, researchers in Chicago measured levels of cytokines in the CSF of children with autism.  What they observed was very highly increased levels of tnf-alpha in children with autism when compared to children without this diagnosis.  This paper is entitled: "Elevation of tumor necrosis factor-alpha in cerebrospinal fluid of autistic children"

In 2005, researchers at Johns Hopkins found that people with autism showed signs of immune activation at greatly increased levels compared to people without this diagnosis, in their paper, "Neuroglial activation and neuroinflammation in the brain of patients with autism".  Once again, there was a marked increase in pro-inflammatory cytokines in subjects with autism. 

On a more indirect measurement level, but corresponding well to observed increased head size in autism, in 2006, researchers at Washington University observed increased water retention in the brains of children with autism as opposed to children without a diagnosis.  The authors believe that this could be the result of an ongoing inflammatory process, and that this inflammation could actually be what drives increased brain size, as opposed to a 'lack of pruning'.  This study is entitled: "Gray matter abnormalities in autism spectrum disorder revealed by T2 relaxation".

There are, of course, many other studies identifying an inflammatory cytokine profile in autism, but I have only included those that speak directly to the CNS for purposes of brevity.  There should be no doubt, however, that the immune system in autism is dysregulated, and is skewed to a pro-inflammatory state. 

If we look for mechanisms by which a dysregulated inflammatory immune response might be generated in children with autism, we also have many recent studies wherein key upstream immune messengers responsible for controlling immune responses have been shown to be abnormal in autism. 

In August 2008, researchers from Yale published "Macrophage Migration Inhibitory Factor and Autism Spectrum Disorders".  This study found that children with autism had greatly increased levels of macrophage migration inhibitory factor (MIF) when compared to children without that diagnosis; and as levels of MIF increased, so did measures of autism severity. Increased levels of MIF has been well documented to be associated with autoimmune and inflammatory diseases such as asthma, arthritis, some cancers, and type 1 diabetes.  This particular study also utilized genomic mapping, and children with autism were found to be much more likely to harbor known MIF promoter alleles than their non diganosed peers. 

In this paper, the authors state:

"Thus, the central hypothesis underlying this research was that a genetic predisposition to a particular level of MIF production may lead to a proinflammatory profile of cell activation that, if present during a neurodevelopmentally sensitive period, might contribute to the etiopathogenesis of autism. "

In 2008, researchers at the University of California found that children with autism were much more likely to have decreased levels of transforming growth factor beta 1 (TGF-B1) when compared with children without a diagnosis.  TFG-B1 is a critical immune component that participates in the control of immune responses.  When circulating levels were measured, children with less TGF-B1, exhibited more severe autistic behaviors. This study is entitled "Decreased transforming growth factor beta1 in autism: a potential link between immune dysregulation and impairment in clinical behavioral outcomes."

Decreased levels of TGF-B1 were previously identified by researchers in Japan, in a study titled: "Decreased serum levels of transforming growth factor-beta1 in patients with autism.".

Thus, in a very real sense, at a clinical level, we have observed that children with autism have impaired ability to appropriately control immune responses by a variety of identified physiological measures; and indeed, as that impairment grows, so do measures of autism severity.   Taken together, observed inflammatory processes and abnormal messenger components constitute the observation of a susceptible subgroup; a population of children who have problems regulating immune responses. 

Finally, in an animal model of autism, researchers from John Hopkins were able to create animals with distinctive behavioral and physiological characteristics of autism by administering an agent after birth; but only if that agent was given shortly after birth.  The agent in question, terbutaline, has been shown to increase concordance of autism diagnosis in twins.  Animals given terbutaline between two and five days after birth went on to display different behavioral profiles, as well as distinctive microglial activation previously observed in people with autism.  Animals given the agent between eleven and fourteen days after birth showed no such changes.  These physiological changes were persistent until at least thirty days.  This study is, "Neuroinflammation and behavioral abnormalities after neonatal terbutaline treatment in rats: implications for autism."

This bears repeating: by adjusting the timing of a dose of chemical after birth, researchers were able to create physiological hallmarks of autism. 

Taking all of this information together, we have learned many things.  People with autism have been shown to have a distinctly pro-inflammatory immune profile in their brains and central nervous systems when compared to people without autism.  From a mechanism of action standpoint, we have increasing evidence of how children with autism are predisposed to have problems regulating an immune response; with results expected to be skewed towards increased inflammation.  These two avenues of observations would appear to be completely consistent with one another.  In animal models, physiological features known to be compatible with what is found in autism can be created by adjusting the timing of an agent after the animal is born. 

Now, consider vaccines.

The underlying mechanism of creating an immunological memory is the initiation of an immune response by providing a small concentration of bacterial or viral proteins alongside aluminum salts.  In the past two decades, there has been a gradual but steady increase in the number of vaccinations given, and a corresponding decrease in the age at which those vaccinations are administered.  Concurrently, there has been an increase in combination vaccinations, which are well established to produce more pronounced immune responses (i.e., fevers) than the individual vaccinations which those particular diseases.  Simply, more immune challenges, at earlier ages, and those that are more likely to generate a robust immune response.

Unfortunately, our existing suite of research regarding autism and vaccination was constructed before almost all of the above observations were made, and as a result, these studies were not designed to attempt to capture information regarding a relationship between dysregulated immune responses and autism.  Unfortunately, any association between early aged immune response generation and autism are completely invisible to all thimerosal based studies.  Likewise, the remaining components of our research, MMR studies, only take into account vaccines that are given after a dozen, or more, earlier vaccinations are administered.  As such, our ability to glean useful information is hindered greatly; especially considering the impact of timing in the animal studies referenced above.  It is merely a statement of fact that our existing research based is comprised entirely of thimerosal or MMR studies. 

As a scientist, you must accept that as additional information becomes available, new theories are required to try to explain what has been observed.  For all the rhetoric concerning 'shifting goalposts' regarding vaccines and autism, one thing seems to be forgotten, or unknown; we now have much more information than we used to.  I would assert that it is unconscionable not to formulate new working theories based on our emerging understanding of the immune regulatory issues identified in autism; and we have no valid reason for these theories not to include artifically stimulated immune responses.   

Considering that we now know that children with autism are particularly predisposed towards having an impaired ability to control inflammatory immune responses; and indeed, that the timing of insults is critical in the developing nervous system, we no longer have the luxury of believing that there is no viable mechanism of action by which a more aggressive vaccine schedule can contribute to the pathology of autism.  Likewise, we have certainty that our existing research does not provide meaningful information as to the impact of initiating immune responses at earlier and earlier ages. 

In autism, we have observed abnormalities in the system that is at the absolute heart of vaccination, all vaccinations, and we have no research one way or the other as to if the two are related or not.  

Your decision will not be an easy one, but please consider that history will take note of your actions.  Unless all of the research I have referenced above is wrong in the exact same way, we have sufficient evidence to take steps to evaluate if artificially generated immune responses are associated with autism.  Unless you believe for some reason that all of the information I have included is incorrect, surely additional findings regarding the immunological dsyfunction in autism are likely to follow; and eventually more and more people will come to the conclusion that I have:

The foundation of the scientific method is that you only learn about what you actually analyze; in the case of vaccines and autism, as opposed to thimerosal and autism, or the MMR and autism, we simply have not performed any quality evaluations.  Without quality evaluations, it is impossible to actually know if there is a relationship between a more aggressive vaccination schedule and autism rates.  Considering what we now know about the handling of immune responses in autism, continuing to assert that vaccine research is a waste of resources constitutes either ignorance of our understanding of autism physiology, or outright denial of what has been observed in favor of political expediency. 

The evaluation of your decision regarding funding prioritizations will continue for a long time; and I must admit, I do not envy your position.  Throwing aside, for the moment, the very legitimate concerns of questioning the policy of vaccination, you should ask yourself, will it stand up to scientific scrutiny in the future? 

Best wishes. 

Brian Scott

Brian is the father of Luke, a five-year old child with autism. He and his wife, Tracy Stewart, are passionate autism advocates and help lead NAA Florida to increase awareness, services and rights for families affected by autism. Luke has improved tremendously through the use of biomedical and behavioral interventions.

Comments

Gabriella True

I learned a lot from your article. Thank you for that. Thank you for takingthe time to write it, I hope you send it to more people too. I plan to read it through a few more times too and put it on my facebook page where i put articles that resonate with me so I can find them again and share them with others

Twyla

I agree that this is a great letter and I hope you will post it and send it (or various versions of it) to many!

I don't agree that it is a waste to send it to Insel. We have to keep trying. The more parents speak up, the more chance of being heard. You never know who in his office might read it. And much better to try and not be heard than to say years from now, "I didn't write to the most powerful people because I assumed they would not pay attention to me."

I truly believe we are on the verge of a shift in general perspectives. There is just too much evidence that autism involves inflammation of the brain, and too many parents reporting their kids' vaccine reactions. It just can't be ignored forever. And the more we all write and lobby, the sooner people will become aware.

John Klemetsrud

Brain, bravo, bravo. Not only intelligent and well thought, but through all of it you retained that human parental quality that only a loving parent could obtain. Keep it up man.

Heidi N

Great letter! But frankly, after listening to the IACC via live webinar, I predict he will feel the tension of trying to continue the denials, but not pay any attention to it. It appears they do not fear any of us. They only answer to their bosses, who they obviously fear more than us. Lawsuits or Congress are the only things that will change things. Although, our continuing perserverence will definitely ammount to something at some point.

Natasa

I agree with others, great letter, but totally wasted on Insel. That person does not care. Sending it to the White House would at least give it one in a hundred chance of being read.

Kathy Blanco

Found this, and relates to Brians post

A second cause of mitochondrial energy disorder is inflammation associated with the release of excess nitric oxide. The herb Ginkgo Biloba selectively increases the release of nitric oxide synthase, the enzyme that reacts with arginine to produce nitric oxide. It should be avoided in this instance. Excess nitric oxide can cause uncoupling of oxidative phosphorylation as well as inhibiting the Krebs cycle enzyme, aconitase. This will result in organic acidemias, and low mitochondrial energy production. Lactic acidosis and carnitine deficiency in autistic patients suggest excessive nitric acid production in mitochondria (Lombard, 1998, Chigani, et al, 1999), and mercury may be a participant. Methyl mercury accumulates in the mitochondria, where it inhibits several mitochondrial enzymes, reduces ATP production and Ca2+ (calcium) buffering capacity, and disrupts mitochondrial respiration and oxidative phosphorylation (Atchison & Hare, 1994; Rajanna and Hobson, 1985; Faro et al., 1998). The behavior associated with excess NO production in the autist is maniacal laughter.

Cindy Keenan

Brian,
Add my voice to those suggesting you post this letter at a few more mainstream sites. Any intellectually honest reader would be forced to consider that the question of a link between vaccines and autism has most certainly NOT been asked and answered.

Kathy Blanco

Brain, excellent~!

Inflammation, infections, resulting tissue damage, damaged detox pathways exhausted by oxidative stress, ongoing and initial toxins during development and otherwise, this is the cause of autism. That's a pretty narrow research field...how long will that take to prove? EONS..because it all implicates what man has done to our kids. And, if man has caused it, he will deploy ever method to hide the incontravertable truths of damage. And in that hiding, they are copable to acts of treason/infantacide on the american children of our nation and all others.

I've been in this autism biz for almost thirty years. My kids are not kids anymore, they are full grown adults, with destinies that should have been.

Where is the destiny of our nation, which still wants to believe that these murderers have our best interests at heart? And do I want to "work with them"? NO. I know of only one method they understand, profit loss. IF the autism community doesn't do such, and tries to play the game of "making vaccines safe", and other products and procedures that harm continually, they are not seeing the gigantic interlocking puzzle pieces of autism. It is in fact, a modern day designed disease. Until we get that...the time for change is never.

jruch

I think this is a great example of vaccine related research that needs to be done, and thanks for the education.

I also think posting it elsewhere could help raise the level of the discussion. You might try emailing it to kos regular DemFromCT – their email address is on their profile page. I have no idea what the response may be, but this writer is tapped into health policy, currently sees no link between vaccines and autism, but is open to more research on autism and mentioned possible susceptible groups. Critical Dune is another poster who has crossed paths with Obama and was been open to research on vaccines and autism, but I have not found an address for this poster.

I wonder if there could be an early test for an unusual immune response that could serve as the basis for alternate vaccination schedules on a mass scale, without necessarily involving a large percentage of the population – maybe a set of skin pricks to produce immune system/allergy apgar type grading. If you identified 100% of those predisposed to autism and a grey area of the population 4 times the size, you could still achieve 95% herd immunity, especially since you may achieve higher vaccination rates through confidence in a delayed schedule. . It drove me nuts to hear the doc say my son’s repeated (nearly monthly) ear infections were normal for kids in daycare.

“It is merely a statement of fact that our existing research based is comprised entirely of thimerosal or MMR studies. “ There sees to be an almost purposeful lack of imagination in limiting conversation of environmental trigger theories to thimeresol and MMR, especially in the obsession with bashing Wakefield. There appears to be an opinion that if they really go after these two theories, they will never have to talk about vaccines and autism again. While mitochondrial research and rational discussion seems like a no brainer, the “please don’t say our kids are damaged” crowd has already walked out of the room high fiving the manufacturers and policy makers.

Sit down everyone, we’re not done yet.

Randy

Wow.

I'm thinking of Marie McCormick and her comments a couple of years ago - how "concerned" she was over the amount of scientific illiteracy "out there".

It appears Brian did not just fall off the turnip truck. I'd think this point would be hard to argue, even with blinders on.


Garbo

So much nicer and calmer than I'm able to muster! Let's hope this reaches Insel on a day when his tiny little heart is beating and his blinders are put away.

David Taylor

Sure, it's a fantastic letter. But it will be quickly tossed because Brian is not a "medical professional" and thus cannot really "understand" the scientific and medical questions in play.

Brian, I urge you to post your letter at a high visibility blog like dailykos.com

WE SHALL OVERCOME

Brian, outstanding letter. Anything coming from the no-vaccine-connection camp pales in comparison with efforts like these, it gets reduced to what it is: completely ridiculous and purposedly deceiving.

Please circulate it widely. As the "super letter" commenter suggests, well compiled information such as this needs to be forwarded to media outlets and to the highest levels of government, above and beyond Issel's, just in case he decides not to act upon it.

meg

Succint and deadly. I can't imagine a legitimate counter argument.

Super letter

Brian Scott, this is a great letter but I think it has been wasted on Insel because right around "Now, consider vaccines..." his head would have probably gone bust. "What, you want me to consider vaccines? Impossible."

You might be better off sending this to the President, who might actually do something about it, assuming he can actually get to read it.

Either that, or send it onto Sharyl Attkisson at CBS news who seems to be the only sufficiently intelligent mainstream reporter capable of bending her head around this complicated problem. The rest of them check out at "consider vaccines" when vacant thoughts begin to penetrate their grey matter....

Jenni Byrd

Thank you Brian. That is a fantastic letter.

karenatlanta

Whatever the genetic predisposition, whatever the underlying immune disorder, could anyone weather the live viruses and bolus dose of Mercury these developing infants get?
Especially when there is no policy established to stop "doubling up" missed wellness shots.
We will never know the full story until we study vaccinated vs unvaccinated populations long term.
They symptoms are as diverse as the child's genetics- Asthma, ASD, ADHD and a host of other auto-immune disorders.
Thanks for the beautiful letter, so aptly said Brian.

Caroline

I totally agree with Brian. I believe my daughters immune stem was compromised either when I had the flu jab as I was concieving my daughter (unknowingly at the time!)or when she was given the BCG at only a few days old in hospital. I then believe that the further childhood vaccinations continued to damage her immune system until she had her MMR which sent it over the edge and the autistic symptoms started to appear.I also believ there could have been a genetic predisposition to my daughter autism as I do have family members suffering with Bi-polar2 and OCD and naracistic behaviours.
I have given my 13 year old daughter many therapies and interventions including glyconutrients, derived from aloe vera, to help heal her immune system, vitamin therapies, DMG and homeopathy to help detoxify her body from the vaccine damage as well as many other interventions and therapies which have now helped her to be the sociable, communicative young lady she is today! She still has ASD BUT ASD DOES'NT HAVE HER!

I am currently gathering and researching information to help me when I start a "Masters" in Autism later this year and I must say, I can't believe how things still haven't really moved on a lot from ten years ago, as far as I can tell so far anyway!

I am hoping to achieve the Autism MA to continue helping other parents and their children and siblings further than I am already, and in a more professional way.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)