• Sat, Apr 5 2008

Vaccine Awareness from David Kirby

The latest post about a hypothetical vaccine-autism link by journalist David Kirby argues that the CDC has “lost control of the autism argument.” Kirby suggests that the CDC—a government agency—is “out of touch” with the real concerns of “anxious and alarmed” Americans who are worrying about their children receiving “5 or more vaccines in one sitting.” (Note that Kirby, who has written plenty about the dangers of thimerosal, the mercury-based preservative that used to be in vaccines, has now shifted his concern to how many vaccines children receive at one time.) Kirby describes some “nasty emails” that some few pediatricians have sent him; these doctors are (says Kirby) up in arms as, thanks to the repeated reports in the media about an alleged vaccine-autism link, they must spend more and more time explaining “vaccine science” to “layperson parents.”

Kirby goes on to find fault with some of the major scientific studies (a study by Dr. Thomas Verstraeten in Pediatrics; a study from Denmark; reports from the Institute of Medicine) that have disputed a link between autism and vaccines and something in vaccines. Kirby suggests that anyone who believes these studies and what medical professionals say is not only wrong, but engaged in some kind of monumental cover-up—–a cover-up that Kirby offers to “explain” for those yet unitniiated in the (as Kirby sees it) wily ways of the CDC, pediatricians and the medical profession, vaccine manufacturers, and anyone who criticizes the claims of those who believe in a vaccine-autism link (and who gets subpoenaed for her efforts).

But Kirby’s post only offers up a new rehashing of his same old points. In Kirby’s writings, the word “autism” has become a synonym for a “child who is not normal and has certain health problems, preferably of a gastrointestinal and/or neurological nature and that are [says Kirby] NOT genetic.” I don’t see any argument about autism, as in actual autistic persons, in Kirby’s post—-it’s a position about vaccines and their “safety.” It is not about autism, or only about one small slice of the many things that need to get talked about regarding autism: Paying for things (therapy, services, utility bills). How to help your kid learn to stop at the sidewalk. How to teach your child to say his name and ask for a drink of water. How to teach your child to tell you he has to use the bathroom (preferably a bit before he actually has to). How to teach your child to stop pinching or biting (we’ve been able to). How to explain to your child to ride a bike.

During Autism Awareness Month, Kirby’s posts seem to be more and more about vaccine awareness, and to be anti-autism awareness and understanding what autism is. If we’re going to be “aware” of autism, it’s not vaccines that should be focused on, but on autistic children and autistic adults themselves and their needs, and how we can best teach, help, and understand them.

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  • Kev

    Bravo Kristina. Great post.

  • H6

    Imagine a split screen movie. On one side of the screen is a documentary about autism and on the other side is a documentary about Chronic Fatigue Syndrome.

    On both sides of the screen you will see people who distrust the Centers for Disease Control. In both documentaries you will hear people accusing the CDC of incompetence, foot-dragging and malfeasance. Children with Chronic Fatigue Syndrome are in many ways in the same political and scientific boat as children with autism.

    In both films you will sense that the CDC is failing to come to grips with a major public health issue. If you read the work of Hillary Johnson and Neenyah Ostrom on Chronic Fatigue Syndrome, you will sense that much of what goes on at the CDC is political in nature. It’s not a pretty picture.

    There is a lot for the autism activist community to learn about the history and politics of the CDC by focusing on its work (or lack thereof) on Chronic Fatigue Syndrome.

    The anti-vaccine crowd has been so negative about the CDC that it seems to be motivating the pro-vaccine people to defensively trust the CDC a little too much. Probably the safest attitude toward the CDC is to either trust but verify or not trust and verify. Just keep the focus on verification. In the process of demonizing Kirby and his supporters, it might be a big mistake to canonize the CDC. Even CDC scientists are only human.

    Studying the history of the CDC’s role in Chronic Fatigue Syndrome is a great introduction to the politics of contemporary American science, especially for anyone who thinks that science isn’t political.

  • http://daedalus2u.blogspot.com/ daedalus2u

    Actually CFS and autism share more than poor research by the CDC. They are both caused by low nitric oxide. In autism the low NO is mostly in the brain, in CFS the low NO is in the muscles. Nitric oxide is what triggers mitochondria biogenesis, so with low NO you end up with fewer mitochondria. In muscle that results in a profound exercise intolerance (your muscles simply don’t have the capacity to increase ATP production). In autism low NO triggers the “stress response” making people hypersensitive to stress (i.e. meltdowns).

  • Regan

    Studying the history of the CDC’s role in Chronic Fatigue Syndrome is a great introduction to the politics of contemporary American science, especially for anyone who thinks that science isn’t political.
    ————
    I was thinking about AIDS myself, except that Randy Shilts was a better journalist who at least tried to put a little balance in the reporting.

  • http://incipientturvy.blogspot.com M

    “Kirby describes some “nasty emails” that some few pediatricians have sent him”

    To me, this is one of the things that really stands out about Kirby: he’s lost in his own little hero narrative. The “us versus them” mentality…it’s apparent and it’s self-serving. In everything he says about autism, I hear a big “Me”. It all goes back to David Kirby and his david-and-goliath ego-cult. Disagreement is good, necessary, but it should be inclusive…it should be about learning, growing…not “winning”, which is what he seems to be about (particularly when he says things like the CDC has “lost control of the autism argument”; an interesting thing for him to say since control issues are precisely what he’s suffering from).

  • H6

    When the full story of AIDS and its relationship to Chronic Fatigue Syndrome is known, Randy Shilts’s “journalism” won’t look so hot. He accepted everything he was told by the CDC’s AIDS scientists. At that time any journalist who didn’t get with the program would be cut off from access to the CDC and NIH.

    His CDC heroes helped create the paradigm that obscured the relationship between AIDS, CFS and many other medical problems.

    Unfortunately, their paradigm, which is still in place today, has prevented people from recognizing the HHV-6 explosion which also affects autistic children.

  • Leila

    I hate when the “awareness” I see out there on the streets is that people are getting more worried about vaccinating, but still don’t know squat about autism itself. Every time I tell an friendly stranger that my son is autistic, the response I get is “but he doesn’t look autistic at all!” and then they start talking about autism gaining epidemic proportions (1 in 150) and ask me if I believe that vaccines are the culprit. Usually I quickly change the conversation to what autism means.

  • http://www.autisticnation.com CS

    I would like someone to tell me what the source of Mr. Kirby’s income is? I’m unaware of anything else he does but comment on vaccines. Not to sound paranoid, but life isn’t cheap, especially if you live where Mr. Kirby does. I’m unaware of any work he does outside of vaccine autism. Can anyone shed any light on him?

    As far as I know, he has no connection to autism in his family, himself or through marriage. He doesn’t engage or explore the world outside the anti-vaxxers. Again, sorry to sound paranoid, but he seems to me to be a bit of a lobbyist of some sort. Could Handley and others be paying him?

  • http://parents.com/autismville Autismville

    If we’re going to be “aware” of autism, it’s not vaccines that should be focused on, but on autistic children and autistic adults themselves and their needs, and how we can best teach, help, and understand them.
    ******

    Thank you for this.

  • Linda

    Great post. This whole Kirby/McCarthy circus detracts from what is important. I am sorry for all the parents and loved ones distracted and worried about all the hoopla when the real focus should be on understanding and education. All of the negativity should really be love and acceptance right?

  • Regan

    H6,
    Not that it matters, but the point on Randy Shilts was that he managed to portray things as they seemed to be–full of uncertainties and usual human foibles on all sides of the story. I read what he said about the CDC and I wouldn’t say it suffered from an overabundance of hero worship, but neither was it the grand conspiracy painted now (personally I think that most bureaucracies are incapable of organizing for a really good conspiracy).

    But get where you are coming from. Thanks.

  • http://zoromski.blogspot.com Michelle Z

    We recently began reading your blog – and I just wanted to thank you. I love what a voice of reason & reality you write with. It’s a very calming contrast to the vaccine hysteria sweeping the Internet.

    Our daughter has autism. We are not trying to ‘cure’ her of it. It’s part of who she is. We feel our job is to best enable her to understand the world around her so she can live a happy life & contribute to society. And a large part of that is helping other people (and ourselves) understand how she sees the world.

    Anyway – just wanted to say thanks.

  • http://www.autismvox.com Kristina Chew, PhD

    @H6,

    You mention a movie with autism i it—-and all this about the CDC—and how the concerns about “greening vaccines” etc. have gotten wrapped up into—-and the conspiracy theories—–and the canonization/demonization of the various parties—–

    I rather think that it’s time for a good comedy to look at the numerous human foibles in this story, and to get to the heart of it all.

  • Ms. Clark

    CS,

    The question is could lawyers like Shoemaker and Sell and Powers be paying Kirby. Kirby is a PR man. Literally. Besides being a sloppy writer and making some money from being a journalist, he’s been a PR man. He’s had is own PR business. Doing PR is how he supported himself for some time.

    So, Hello! If the mercury malicia wanted to hire someone to write a book (they had done all the legwork, according to Kirby himself, he just compiled a bunch of documents handed him by Safe Minds into a story) they would want someone to go on a book tour and keep the hysteria alive by peddling it at conferences, etc. So, why not hire a professional PR man who happens to have a chip on his shoulder against the CDC?

    What I see is that Kirby is telling the story that he wished he could have about AIDS. I think he wanted to be the next Randy Shilts, but that he wouldn’t die shortly after his book was published… The cover of EoHam is similar to the cover of “And the Band Played On” in my opinion. The copies I have of both, they are both bloody red color.

    Anyway, Shilts severely criticized the CDC and other agencies in his book, but also criticized the gay community, so many in the gay community didn’t like the book, he uncovered things they didn’t want known.

    And I dare say that Shilts was sincere in what he wrote. Kirby wants to play David against Goliath with the CDC and it’s all about HIM as noted above. He has no connection to autism, he told me so in an email. He also indicated no particular respect for some of the wacky acting parents. He indicated that he thought the were pretty weird.

    No doubt, some of the goofier ones are on the spectrum themselves and are obsessing on getting the last molecule of mercury out of their kids (no, I changed my mind, that’s not autistic, that’s psychotic).

    Anyway, Kirby’s behavior maps onto to the behavior of a paid shill, a flack a PR man. Someone must be paying him. I would guess it’s whoever is handing him court documents like those from the Poling case… let’s see who was the lawyer for the Polings… uhmmmmmm….. hmmmmm.

    Clifford Shoemaker of Vienna, Virgina, maybe?

    So maybe Kirby and Shoemaker have a friendship going on there where they share information about where they want the media to go chasing next so that Shoemaker and others have a somewhat better chance at winning in court?

    Photos of Kirby with the lesser known parents have him looking like someone who has been forced to eat a bar of soap. I have one of him looking quite angry at having to pose with a bunch of local moms. He’s not in this for the fun.

    Oh, and it appears that he has done some work for the UN, development agency or something. google: David Kirby undp.

    The identifiying information about the David Kirby who works for the UNDP seems to match up with this David Kirby. And David Kriby spoke for UN TV (cable channel or something from the UN) about the terror of autism about to hit the entire planet. I think that was in 2005 or 2006.

    It seems very unlikely that all his flacking is done out of the goodness of his heart.

    But the malicia are not likely to be honest about who is paying him, either. They haven’t been up until now and Kirby’s been at this for a few years now.

  • http://www.autismvox.com Kristina Chew, PhD

    There is another David Kirby, who is a poet and English professor in Florida:

    http://www.davidkirby.com/

    Prior to reading Evidence of Harm, I had read some of Kirby’s articles in the travel section of the New York Times (like this and this).

  • http://www.autismschmatism.blogspot.com KC’sMommy

    Hi Kristina,

    I know I am a bit off topic for this post but wanted to share the awesome news with you. K.C. is a bike rider! I just posted a video on my blog! Can you believe it?

  • http://compostermom.blogspot.com Daisy

    Would Kirby consider my son’s autism non-existent, since it is very likely genetic?

  • http://www.autismvox.com Kristina Chew, PhD

    @KC’s mommy, fabulous news—just read your post!

    @Daisy, guess he’d have to say the same about Charlie…..

  • http://hareega.blogspot.com Hareega

    I’m an infectious disease specialist. It’s interesting to see that when it comes to medical information, people are trusting journalists more than doctors and more than the fourteen well-conducted studies that ALWAYS failed to show any link between vaccinations and autism.

    When your child gets sick, take him to a journalist and don’t waste your pediatrician’s time.

  • Ms. Clark

    Hareega,

    What the extremists do is “take their kid” to a Yahoo! Group like the mb12valtrex group, where a mom of a child in Asia posted that her son had had a high fever for several days in a row. She said that beside the fever he seemed to be well enough.

    No one in the group said, “Good gosh woman, get that kid to the doctor!!!” Instead one person offered that putting raw egg whites on the soles of a child’s feet is a good cure for a fever. Others said that giving him liquid calcium ought to do it. There was a discussion on how it was that the egg whites needed to be applied, the mom never having had done it before….

    I’m always amazed that more parents don’t report that their kid died or was hospitalized due to some stupid experimentation or other.

    These are people who say it’s bad to take an antibiotic for an infection and the the fever is all good, and it’s dangerous to take Tylenol (it destroys glutathione), and it’s bad to take aspirin if it’s the flu…

    I expect we’ll see an lot of scarlet fever and rheumatic fever among autistic kids whose parents are “biomed” fans. Because they don’t believe in antibiotics.

    There are some of these parents who love to see things like rashes and vomiting because they are seen as a sign of a “healing regression.”

    So yeah, take your kid to a journalist if he gets sick, or to a Yahoo! group peopled with his fans, and don’t complain about how evil your doctor is if you wind up having to take your kid to a funeral home.

  • http://www.autismvox.com Kristina Chew, PhD

    And arm flapping is due to an ulcer (as someone told me).

  • H6

    The Tuskegee Syphilis Experiment ended because of the efforts of a journalists Edith Lederer and Jean Heller.

    This was after a public health care worker named Peter Buxtun tried unsuccessfully to get doctors to shut it down.

    Journalists do have their uses. You never know when you’re going to need one.

  • http://www.autismvox.com Kristina Chew, PhD

    I guess occasionally a doctor is needed too—–all kinds of occupations as in the Ballad for Americans.

  • Chuck

    Several pediatricians/doctors that we took our son to for medical attention were just as much a waste of time as journalists. They were incapable of getting vital statistics such as temperature, pulse, or listen because our son was uncooperative and THEY didn’t understand why. My son left an ER with a diagnosed sprained ankle, unwrapped, un-splinted, because he was in pain and the doctors became frustrated and couldn’t do anything because he would not sit still after being there for four hours. I think a journalist would have been really handy at that time.

  • H6

    Kirby is getting a taste of his own medicine. When he was involved with Liz Taylor and Amfar he was working with an organization that helped undermine the credibility of dissident voices in AIDS research. Amfar aided the government in discrediting any scientific doubts about the official definition and cause of AIDS.

    If you don’t know about the HIV debate and data that undermines the whole HIV theory of AIDS, you can partly thank Amfar. It’s all been swept under the rug.

    Now he knows what its like to challenge city hall.

    Of course, if you’re a supporter of the official line on AIDS, you’ll want to give Kirby some credit where credit is due.

  • http://www.autismvox.com Kristina Chew, PhD

    very interesting…… thanks.

  • Regan

    Kristina said,
    “I rather think that it’s time for a good comedy to look at the numerous human foibles in this story, and to get to the heart of it all.”
    ——————
    I can’t believe I actually thought about who one would cast (for instance who would Will Farrell best portray?)…

    I wish that Joan Didion was doing more writing these days and was interested in doing a summing up–she, in all that I’ve read, is a cool-headed and sharp-eyed observer of irony, disinterested and intelligent arbiter of the human factor of these kinds of situations, and an excellent essayist.

  • http://daisymayfattypants.blogspot.com Emily

    I don’t understand all this reference to “belief” when it comes to things like this. My neighbor told my husband that she doesn’t “believe” in vaccines. He thought that was odd, given that vaccines do, in fact, exist. I think it’s very telling that for some people, this whole “conspiracy theory” crap is much more a matter of faith than a matter of being informed. When people start using the language of religion and emotion to try to quell the findings of science, I start to get very very nervous. And irritated.

  • Chuck

    I used to have a “belief” in vaccines when I was a child and there were just a few vaccines that did the job at least for me. My beliefs were put to the test with my first born. When my youngest was born, my beliefs were put to rest by cold, hard painful facts. By the time my youngest was four, every member of my family had suffered due to vaccine failures and adverse reaction. The cold hard facts of the years of suffering of my family have put my “beliefs” in vaccines in the same place as the beliefs I had about Santa Claus or the Easter bunny.

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  • http://daisymayfattypants.blogspot.com Emily

    Chuck, I’m sorry that your family had adverse reactions to vaccines. The son in a family I know had a severe hemolytic reaction to vaccines and they do not get them, for obvious medical reasons. He is protected against many illnesses by virtue of herd immunity.

    We all make instantaneous and non-instantaneous decisions about our children every day, often decisions with a life or death outcome that we cannot even foresee–including sending them to school, driving them places, flying with them, administering medications, feeding them peanuts, sending them out to play in the spring when bees and fire ants are swarming– and for a very very very small percentage of families, there is a risk with vaccinations, although it is not a deadly risk. The rest of us who vaccinate provide protection for these few who cannot.

    And the failure of the chicken pox vaccine to achieve complete coverage is widely acknowledged. I’ve already pointed out in a separate post what would arise medically, socially, and economically were there to be zero coverage against chicken pox. Even the partial coverage confers tremendous benefits.

    None of these things involve a belief system. The fact is, vaccines exist. It is not a matter of belief. The facts also are that they are incredibly effective in the target outcome, which is preventing widespread transmission, especially in the pediatric population, of many unquestionably deadly diseases.

  • Chuck

    It is a fact that vaccines exist. It is a belief that all are necessary and that all are incredibly effective. The only other fact that I can see is that life is a deadly disease and the use of science and resources for the greater glory of life is a highly subjective belief.

  • http://daisymayfattypants.blogspot.com Emily

    I just don’t like the “exit stage-right, slam door, oooooooh, burn” kind of exchange, so…OK…sure, whatever. A fact is a fact. Numbers and analyses and studies support what I’ve stated as fact. You throw in irrelevant bons mot (I use the term loosely) for the mere purpose of verbal sparring and infer things that I do not imply and say a lot of silly stuff that makes any useful exchange impossible. Perhaps it makes you feel better, and that’s just fine (I’m OK, you’re OK), but I’ve tried a couple of sincere posts to you expecting some kind of reasonable discussion, and that hasn’t transpired. So….OK…whatever.

  • http://www.autismvox.com Kristina Chew, PhD

    @Regan,

    Yes, we could use Joan Didion here and now; I’ve found her Year of Magical Thinking more than helpful.

  • Chuck

    I have given nothing but the most sincere of posts given the trials and tribulations my family has had to endure due to ignorance, intolerance, and incompetence. If the only thing that two parents of autistic children can agree to is to disagree, then I see little hope for acceptance or understanding for our children in this society. Whatever.

  • http://parents.com/autismville Autismville

    I have The Year of Magical Thinking sitting on my bookshelf. Never got around to reading it.

    Thanks for the reminder…

  • H6

    People concerned about the CDC’s treatment of autism may want to join forces with the Chronic Fatigue Syndrome community. This post is a snapshot of what the CFS folks have had to deal with at the CDC.

    http://journals.aol.com/kmc528/Lifeasweknowit/entries/2008/04/05/more-on-the-canadian-consensus-document/1993

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  • http://hareega.blogspot.com Hareega

    I’m so glad those vaccine-doubters were not around 30 years ago, when smallpox was eradicated from the whole world because of the success of VACCINATION. Smallpox killed 30% of its voctims, and now it’s gone because of vaccines!

  • Chuck

    The smallpox vaccine probably had one of the highest adverse reaction reports of most of the major vaccines. My wife suffers to this day due to this vaccine.

  • http://hareega.blogspot.com Hareega

    Chuck, I’m sorry for your wife. Some people also suffered from the oral polio vaccine (ironically they got polio from it) but this side effect was extremely low (less than 1 in a 100,000) ,

    Everything in medicine comes in the end to risk vs. benefit, and in all the vaccines used today (not sure about the shingles vaccine yet) the benefit clearly outweighs the risk.

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  • http://autismspectrumdisorders.bellaonline.com Bonnie Sayers

    I was quite disappointed, but not shocked to see RFK Jr on the cover of the April/May Spectrum magazine. Their covers are always so dark and not enlightening for the autism community.

    I am dealing with puberty in two kids on the spectrum and need guidance for the formative years.

    We don’t even bother with the autism walks, and the Pasadena one is this weekend. I will be busy with Stanley Greenspan online course instead helping myself and my own family instead of organizations that take it all from the community.

  • http://www.acnetreatmentdigest.com acne-care>

    the small pox vaccine has some weird side effects, i know a friend of mine who got it.

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