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This past Friday, a government-appointed working group met for the first time to discuss research about the safety of immunizations. Federal health officials said that the meeting is not in response to the recent concession by the government that vaccines aggravated an underlying mitochondrial condition in 9-year-old Hannah Poling and led to symptoms of autism; the April 13th New York Times states otherwise:
The meeting, the first of more to be set, came amid new controversy about vaccines and autism — and a fledgling theory that vaccinations might worsen a rare condition called mitochondrial dysfunction that sets off certain forms of autism.
Said Dr. Bruce Gellin, head of the National Vaccine Program Office: “A crisis of trust is going to be a crisis of public health.” Health officials are concerned not only about the effects of the current outcry over the safety of vaccines on public health, but also how the “vaccine debate” suggests the level of mistrust and suspicion towards government health and science agencies.
Suspicion about vaccines is nothing new: People have been wary and fearful of vaccines since Dr. Edward Jenner pioneered the use of the smallpox vaccine in the late 1700′s – early 1800s:
Jenner was widely ridiculed. Critics, especially the clergy, claimed it was repulsive and ungodly to inoculate someone with material from a diseased animal. A satirical cartoon of 1802 showed people who had been vaccinated sprouting cow’s heads. [BBC]
And, as University of Michigan professors Alexandra Minna Stern and Howard Markel write in Health Affairs:
Especially in the 1830s, after an initial generation had been vaccinated and the incidence of smallpox had declined markedly in the United States and Europe, a vociferous antivaccination movement emerged. Sometimes antivaccinationists were protesting what they considered the intrusion of their privacy and bodily integrity. Many working-class Britons, for example, viewed compulsory vaccination laws, passed in 1821, as a direct government assault on their communities by the ruling class. In addition, by the mid- eighteenth century the rise of irregular medicine and unabashed quacker y encouraged antivaccinationism. For instance, irregulars generally viewed vaccination as a destructive and potentially defiling procedure of heroic medicine, akin to blood-letting. In addition, antivivisectionists, who abhorred animal experimentation, sometimes joined forces with antivaccinationists.
Stern and Markel note that American parents need “better access to and clearer explanations of the recent findings published in medical journals that confirm the lack of a link between thimerosal or MMR and autism or other neurological conditions.” This is indeed the case, but, even with greater public access to such scientific evidence disputing a vaccine-autism link, the belief that vaccines or something in vaccines can be directly pointed to as a cause of autism has so far proven more than difficult to dispel (see journalist Arthur Allen’s analysis of the vaccines-cause-autism myth).
And the case of Hannah Poling will only keep public doubt about vaccines alive—but what will the ultimate effects of all of this attention on vaccines on research and understanding about autism and autistic persons?
Sometimes it seems that “discussions about autism” are becoming essentially “discussions about autism.”
One example is a recent post on the New York Times’ Well blog by Tara Parker-Pope which asks if “a 9-year-old will change the vaccine debate.” Indeed, than a few people indeed think that the case of Hannah Poling will. As her father, neurologist Jon Poling, wrote in an April 11th op-ed in the Atlanta Journal-Constitution, “emerging evidence suggests that mitochondrial dysfunction may not be rare at all among children with autism” and that “mitochondrial dysfunction may be the most common medical condition associated with autism.” Dr. Poling calls on the CDC and other government science and health agencies to further research “how large the mitochondrial autism subpopulation is.” Whether vaccines play a “major or minor role in autism,” Dr. Poling requests that reform of the current vaccine schedule is necessary: Will, he asks, federal officials “heed the writing on the wall (scribbled by my 9-year old daughter)”?
Dr. Poling writes that “the mitochondrial autism scenario that my daughter has so eloquently painted has the CDC and public health experts logically cornered.” Certainly the Polings, by being very public about their daughter’s case, have carefully painted a case for how vaccines and autism, and mitochondrial conditions, might all be connected. And hopefully, whatever is found about such a connection, the attention focused on autism will spill over into heightened concern about education, services, and supports about autism; about what Hannah herself wrote on that wall.
pD,
One of the political problems of taking mitochondrial dysfunction seriously in autism is that it would potentially connect autism to the mitochondrial dysfunction in Chronic Fatigue Syndrome and AIDS which all may be caused by the virus HHV-6. HHV-6 is the virus that has been trying to come out of the closet as the real AIDS and CFS virus since its discovery in 1986.
Three supposedly difference epidemics actually all triggered to a degree (or completely) by one virus? That would cause the mother of all paradigm shifts and one that would threaten the public health establishment’s credibility for a century. An innocent mistake? Tell that to the marginalized whistleblowers and critics fighting the official line on AIDS and CFS for two decades. There’s a paper trail.
If you read Hillary Johnson’s book, “Osler’s Web,” you will find evidence that the CDC has been in a chronic state of denial about the connection between AIDS and CFS. If they haven’t been able to deal with that for two decades, how will they add autism to the mix?
By the way, this comes at a time when the CDC has been handed the task of also dealing with the detection of diseases caused by biological weapons of mass destruction. So trust and credibility are now at a premium at the very moment when the AIDS/CFS/Autism story could make the public skeptical of every word that comes out of the CDC.
The next president should go into the CDC (and NIAID) and drain the swamp.
Hello friends -
I think that the idea of a dearth of trust is dead on, and one that should have people in regulatory agencies very worried. The problem I see, is they don’t seem to be doing much about reversing the pattern.
By way of example, the government has had laboratory studies of the biological markers of Hannah’s mitochondrial dysfunction for a long time now; several months. It would seem logical that the thing to do would be to perform additional studies on the autism population to determine if, indeed, these same biological markers are more prevalanet in that population than those without a diagnosis.
Where is this study? In all of their TV performances and OP Ed pieces, why hasn’t a single representative of the CDC, AAP, or FDA said, ‘We really need a better understanding of how common this actually is; and therefore, we are initiating a clinical study of a thousand children with autism, a thousand without, and performing analysis for the biological markers we found in Hannah. We expect to have those values available in a few months.’?
In all seriousness, can anyone think of a valid reason such a study has not been commissioned?
This would be a big step in restoring confidence; the notion that they are actually interested in looking for answers. I don’t get that feeling right now.
Take care!
- pD
Einstein said that advances in science can only come with passionate resistance to the dogma of authority.
There have really only been two scientific advances in autism research. Kanner’s 1943 article which defined the syndrome. Kanner was a child psychiatrist. The second great advance came with the publication of Rimland’s book in 1964 proving that infantile autism was not a psychogenic condition but rather a biological condition. Kanner recognized Rimlands work but Rimland did not have a medical degree.
I’m not so sure about what constitutes “better informed” at this point; what of the problems with this sort of debate is that it is not about the day to day practical needs of autistic children and their families.
The most important thing to focus on in these discussions is education and services to help autistic students achieve their best potential.
The real threat to AIDS/CFS/Autism elites is that in this information age the rubes can be better informed even if they don’t have a degree. If Thomas Kuhn wrote his “Structure of Scientific Revolutions” today he would probably caution that paradigm shifts can come from the better minds among the rubes. Paradigm shifts in the past, according to Kuhn, often came from the less established or new members of the scientific profession. He might also note that science can no longer be the closed society it used to be. He might even say, to the alarm of some of the elite, that today’s rube is tomorrow’s elite.
The other threat to the elites is that many of the rubes affected by AIDS/CFS/Autism are informed and smart enough not to be browbeaten by anyone who claims that they speak for “science” or that anyone who questions the elite or the establishment is trapped in a bitter life of magical thinking (to borrow the Obama word of the hour).
“It’s the same mechanism that leads us all to tell stories of all kinds to make sense of what’s going on around us.”
I agree. This is both what we do, and what works best. I might prefer that it be otherwise, privilege the research, but it’s the stories that touch people and persist.
If I’m not mistaken, “pied” means “spotted”
The “piper” is a metaphor for “plague”
I’m sure the folks of Hamlin knew what it was when they saw it. The story lives on, not because it’s an out of date 13th century mechanism for coping with overwhelming tragedy for which there was no practical help. It’s the same mechanism that leads us all to tell stories of all kinds to make sense of what’s going on around us.
@H6, A little too polarizing—-rubes trying to cross the Rubicon and elites electing to stick to science. Not so sure that either side really dominates; certainly consensus will not easily be reached, as Roy Richard Grinker wrote last June in the Wall Street Journal:
http://unstrange.com/media_wallstreet.html
There are some teachers who really deserve to be considered “elite” in their dedication to helping kids who they spend the whole day with, and their efforts are showing now and in decades to come. Very best.
@M, you are too kind!
The politics of autism seem to be leading to a battle between two groups who could be defined as “the autism elite” and the “autism rubes.” The autism elite trust the government and tend to see any challenge to public health credibility as conspiracy theorizing. The autism elite think that they are more informed and more reasonable than the rubes who have “suspicion” and are “wary and fearful.”
AIDS and Chronic Fatigue Syndrome divided up this way, too. In AIDS the AIDS elite helped support the government’s pronouncement that HIV is the cause of AIDS, and they helped undermine the credibility of the AIDS rubes who doubted the HIV theory by portraying them as conspiracy theorists full of “suspicion and “wary and fearful.”
The same thing happened in Chronic Fatigue Syndrome. The CFS elite attacked the CFS rubes who think the government is lying about the nature and scope of the CFS epidemic. They are also portrayed as conspiracy theorists full of “suspicion” and “wary and fearful.”
In all three of these political medical issues (and they are very political) it is important for public health officials to cultivate the elite to keep the rubes from dominating the debate.
Whether the elites have, in the long run, actually helped anyone with AIDS, CFS or autism may have to be determined many decades from now.
If I could choose one super-power, it would be the ability to mentally access relevant Kristina Chew posts at the drop of a hat (well, I would probably choose flying, but this would be a close second).
That mention of Hamelin says a lot—–here’s another reference to the “pied piper of autism”:
http://www.autismvox.com/the-pied-piper-of-autism/
In reference to the evidence disputing a vaccine-autism link: the problem with the evidence is not that it’s ambiguous. The problem is that it fails to generate a compelling personal story. Should a mountain of evidence disputing the link accrue…it will be up against writing “scribbled” by a 9-year old. It’s unfortunate, but research will never be enough. Compelling stories have always trumped evidence.
In 1284, when something terrible happened to the children of Hamelin (a small town in Germany): my guess is that a mysterious pied piper did not actually show up and lure the kids away using group-hypnosis. But had the villagers concluded “We’re not sure what happened”, it’s unlikely the story would still be around today.
Thanks for the kind words—-my son did have his vaccines; he was not “typically developing” from the start. Very best—
Very nice article. It will be interesting to see what comes of this. I have 5 children and one has Autism. His symptoms or Autistic traits began very early on and We had made sure he did not get mercury vacs. None of our children did. I just hope they can figure out a way of vaccinating without all the crap currently in the vaccines. Reading what is in the vaccines is pretty scary. Granted looking at the ingredients in some of the food we eat is just as scary. Thanks for the article
Brad
Letscureautism.com