On Newsweek: Three videos with interviews with Dr. Paul Offit, chief of the division of infectious diseases at the Children’s Hospital of Philadelphia and a professor of pediatrics at the University of Pennsylvania medical school; Robert Krakow, a New York attorney who’s the father of an autistic son and who is representing more than 75 families who believe a vaccine caused autism in their child; and myself. The videos are below or go here to Newsweek.—— And here’s a profile of Dr. Offit by Claudia Kalb in Newsweek.

According to the claim that vaccines or something in vaccines can be linked to autism—the source of much discussion and dissent for most of my son’s life—-autistic persons are “damaged” and “injured”; they were once “normal,” “typical” and “ok.” The notion that vaccines or mercury poisoning are the cause of autism not only poses some potential health hazards, but also creates an image of autistic children and adults as “less than [the rest of us]” due to a short; as “damaged goods.” Whereas, genetic studies on the causes of autism suggest that, far from being an “accident” that befalls an up-to-then “normal” family, autism is very much in the family. While neither my husband Jim nor I are autistic, we can detect many points of overlap between our boy and ourselves.

The words one uses to describe and represent autism shape our understanding of it. Last November saw the publication of a book edited by English professor (and father of an autistic son) Mark Osteen, Autism and Representation (full disclosure: I have an essay in it, about poetry, language, and trying to understand my son’s language). A book with a similar title, Representing Autism: Culture, Narrative, Fascination was recently published by Liverpool University Press. It’s written by English professor Stuart Murray who (another disclosure; I must watch my “conflicts of interest” in these conflicted times) I know: He spoke at the 2006 conference on autism and advocacy that my husband organized, and, before that, I responded to a paper that Murray gave on autistic presence and Bartleby the Scrivener (from Herman Melville’s short story).

I still need to read Representing Autism: Culture, Narrative, Fascination and a review (some of it available on Nature) by Simon Baron-Cohen makes me further interested. Writes Baron-Cohen:

According to Murray, whether we are making a film or writing a scientific paper about autism, we are superimposing categories on to it. For example, the major charity for families and individuals with autism in Britain, the National Autistic Society, was founded in 1962 as the Society for Psychotic Children. This shift in the name could have affected what we looked for and what we saw. Similar shifts occurred in the first scientific journal for autism research. Now called the Journal of Autism and Developmental Disorders, it began as the Journal of Autism and Childhood Schizophrenia. These changes signal how we used to believe autism was just the childhood form of schizophrenia, and how we used to think this condition only affected children.

We now know that autism and schizophrenia are distinct.

As Baron-Cohen further writes about Murray’s book, “one narrow slice of the autism spectrum disproportionately dominates public perceptions of the conditions”—-individuals with “savant” skills like Raymond Babbitt in the 1988 movie Rain Man and Christopher Boone in the 2003 The Curious Incident of the Dog in the Night-Time by Mark Haddon. Murray also looks at the “range of representations of autism in fiction” (Spock in Star Trek and Sherlock Holmes), and considers other, popular representations of autism:

Slanted views about autism can even be found in the research community. On the website of Autism Speaks, the major charity funding autism research in the United States, are the words “This disease has taken our children away. It’s time to get them back.” This is as clear a statement as one can find of autism as a disease, a view that many but not all autism scientists would endorse. Contrast this with Amanda Baggs’s online video In My Language (http://tinyurl.com/2pczl2), which she launched as a statement about her civil rights as a person with autism, to be recognized and understood as different but not diseased. Another website, Autistics.org, proudly proclaims that people with autism are simply differently wired, and names one of their online groups the Autistic Liberation Front. These statements, along with Representing Autism, serve as a valuable reminder that we need to challenge how we conceptualize such medical conditions.

I’ve long been fascinated, and sometimes troubled, with the question of representing autism. Charlie has plenty to communicate and not so many words and a lot (most) (all?) of what is known about him is based on what Jim and I say. I wrote about representing Charlie in this rather oldish post. What often fascinates, at times infuriates, and sometimes simply grates on me in reading about various theories of autism causation—let’s say, mercury—is that autistic individuals come across as so passive and so unable to do or be aware of much, and violent toddlers trapped in the body of a 200-pound teenager (as suggested in a recent article). My son has lots, lots, and lots of struggles—piano practice this evening exhausted both of us as Charlie kept squinting and tapping at keys with random fingers—but he is not “mercury poisoned” or something “damaged” or a “tragedy” and the association of these terms with autism limits how people understand autism, and autistic people.

Consier a letter published in the August 7th New England Journal of Medicine by Dr. Jon Poling, the father of Hannah Poling, in response to a May NEJM article by Dr. Paul Offit in which he revisits the case of Hannah Poling. Dr. Poling being the father of Hannah Poling and therefore, assumedly concerned about anyone’s representation of her, writes:

By omitting critical information from my March 6, 2008, statement, Offit misrepresents my position. I said, “Many in the autism community and their champions believe that the result in this case may well signify a landmark decision as it pertains to children developing autism following vaccinations. This still remains to be seen, but currently there are almost 5,000 other cases pending.”

Offit’s remarks about Hannah’s case are not evidence-based. He has no access to my daughter’s personal medical records, legal documents, or affidavits. In contrast, physicians from the Department of Health and Human Services (DHHS) who studied this information recommended that the government concede Hannah’s case. The clinical history Offit presents contains significant inaccuracies, and the resulting conclusions are consequently flawed.

Offit confuses issues by comparing Hannah’s case with unrelated decisions in “vaccine court.” The Office of the Secretary of DHHS, through the Department of Justice, conceded Hannah’s case. There was no courtroom hearing and no decision from the “unusual vaccine court.”

Dr. Poling takes Dr. Offit to task for, specifically, “misrepresenting” Dr. Poling’s “position,” due in no small part to Dr. Offit not having access tp Hannah Poling “personal medical records” (on the disclosure of which, see this post; only two documents about Hannah Poling have been drawn on by the public, regarding her medical information). Dr. Offit’s conclusions about Hannah Poling are, according to Dr. Poling, “consequently flawed” and Dr. Offit is said to be in error for “confusing” the details of Hannah Poling’s case with those of other “unrelated decisions.” And yet, while depicting the case of Hannah Poling, his daughter, as separate and specific from the cases of other autistic children whose parents say they have been “injured” by vaccine, Dr. Poling writes that there is a “high frequency of mitochondrial dysfunction in autistic children” (he references this study), which would suggest that what caused Hannah Poling to “become” autistic has certain similarities to the situation of other children. Ought there not to be overlaps between the “details of Hannah Poling’s case” with those of other “unrelated decisions”?

Inevitable that any of us are prone to misrepresent Hannah Poling. I for one think (rightly or not) that Jim and I are the “best” at representing Charlie, and yet I wonder how my parental perspective, with its messy foundation of feelings and lots of love and worries about the great unknowns out there, can cause me to see things about Charlie that maybe aren’t exactly so, and thus to “represent” not so much him as he really is, but him as I think he is. And perhaps this is the case for any parent representing their autistic child.

I ought to note, Prof Murray is himself the father of three sons, two on the autism spectrum.

It was not unpredicted and it has happened again.

David Kirby is again rebranding autism in his latest post about fever, vaccines, and mitochondrial autism. Now it’s “vaccine-induced mitochondrial regression” and even something like “Mute Fever” (a “folksy” name that Kirby comes up with on the side, for reasons noted below). Over a year ago, he rechristened autism as Environmentally-Acquired Neuroimmune Disorder” or “E.N.D.”; more recently, it’s been “vaccine-aggravated mitochondrial disorder” and also “autistic encephalopathy.” Kirby seems to constantly change what he calls autism to suit the latest studies, findings, and documents available about autism, vaccines and (in particular) vaccine-related injuries. While this provides fine fodder for him to speculate about the causes of autism, it (rather obsessively, at this point) keeps discussion about autism focused on hypothetical causes—-and, in my household at least, new ways of labeling and categorizing autism are not helpful. It’s real changes (in legislation and policy, for example) and real solutions (like Charlie having APE everyday at school) that make the difference in his life, and so in ours.

But back to autism, rebranded. Kirby returns to the case of Hannah Poling, the 9-year-old Georgia girl whose “pre-existing mitochondrial disorder…. was ‘aggravated’ by her shots,” as conceded by the government a few months ago. He zooms in on one detail found in a “second concession statement” from the government in which it is specifically noted that, as Kirby writes:

…..the “cause” of Hannah’s “autistic encephalopathy” was:

“Underlying mitochondrial dysfunction, exacerbated by vaccine-induced
fever and immune stimulation that exceeded metabolic reserves.”

Kirby cites an unnamed expert on “mitochondrial dysfunction and autism that [he] interviewed, who has studied 30 children with regressive ASD at the same clinic” (the clinic and the specific study are also not identified). Kirby writes, again citing unnamed sources:

But if 20% of ASD kids have a mito disorder, and six percent of those kids regressed due to vaccines, then just 1% of all autism could be attributed to vaccine induced “mitochondrial regression.”

If 1% of all autism cases were actually vaccine-induced mitochondrial regression, this would suggest that another 19% of ASD cases may be mitochondrial regression induced by fever alone.

Kirby is arguing that there is some subset of people who have “mito issues” and then, “after normal births and development, suddenly stopped talking and regressed into autism, following some kind of childhood fever.” According to Kirby, this is what happened to Hannah Poling who (as he writes) did have fevers at 13 months prior to receiving her vaccinations, but did not at that point “regress” into autism.” Further, as Kirby says he has “also learned,”

Hannah has suffered from extensive bouts of fever ever since her autism diagnosis. Like with many ASD kids, her symptoms actually improve remarkably during these episodes, and when they happen, she seems to temporarily “come of her cloud.”

This temporary improvement was documented in the December, 2007 issue of Pediatrics in a study titled, “Fever May Briefly Alleviate Autism Symptoms.” The authors reported that, out of 30 ASD children observed before and after a 100.4 degree fever, more than 80% showed some improvement in behavior and other signs, and 30% showed “significant improvement.” Changes included longer concentration span, increased amount of talking and improved eye contact.

This is the study Kirby refers to, and some discussion about it. What’s missing in Kirby’s discussion of the study is how it’s directly relevant to Hannah: Does she “come out of her cloud” whenever she has a fever now, and how might other treatments and/or educational therapies also play a part in her (transitory, it seems) improvement? Further, the changes noted in the study about fever were not observed directly by the authors of the study, but were taken from questionnaires that parents had filed out, so the results of the study are somewhat anecdotal.

Citing the fever study helps Kirby’s argument in this particular piece, as he is arguing that it is something about the vaccines that Hannah received that made her post-immunization fever different—that resulted in that fever leading to “symptoms of autism.” And, this is why Kirby suggests that autism could be considered “Mute Fever”: If I follow Kirby’s logic, plenty of kids get fevers (and plenty of kids in “Africa and developing nations” even more so) and don’t become autistic (I guess that’s why he uses the word “mute”—not that all autistic individuals are mute; this seems to be a rather careless choice of words). Fever that leads to autism would then be “Mute Fever.” And so if Hannah and the other child in a test case, Alex Krakow, got fevers and then became autistic, there must be something else about that fever that “caused” autism—something else like…..vaccines?

(Had to slip in a rhetorical question; Kirby relies on this particular rhetorical device to build up his argument. A dozen or so rhetorical questions appear throughout his essay—not that rhetoric is the stuff on which science should be based.)

It being the very end of May, I suppose we might take Kirby’s latest post as a prediction of what he’ll be saying on his imminent visit to the UK. Certainly it seems that vaccines will be a topic of discussion: Mike Stanton at Action for Autism shows that the British Peer, Lord Hodgson, who is sponsoring Kirby’s visits, has a particular interest in thimerosal/thiomersal, the mercury-based preservative that has been pointed to (contrary to the scientific evidence) as a cause of autism. And though I clearly don’t think this is the direction discussions about autism anywhere should be headed, I’m always glad to consider theories and hypotheses—-unlike at a recent autism conference in Chicago, no ideas and certainly no one (especially journalists) ever gets expelled.

To read an article about the MMR vaccine and autism in today’s Telegraph, you’d think there was plenty of reason for the “debate” to be “reignited” thanks to Senator John McCain talking about an “autism epidemic”; recent statements about US health officials being too quick to dismiss arguments about vaccine as a cause of autism by Dr. Bernardine Healy; the case of Hannah Poling, in which the government conceded that vaccines “aggravated” an underlying mitochondrial disorder in Hannah and led to symptoms of autism; and a recent poster presentation at IMFAR about a study in which 13 vaccinated monkeys showed “increased aggression, impaired cognitive skills and developmental delay” after receiving vaccines.

Here’s what the Telegraph article doesn’t note:

Sen. McCain was widely criticized by scientists about his comment that the increase in autism is due to vaccines.

There is a lot of uncertainty and even controversy over how common mitochondrial disorders are in autistic children. In the case of Hannah Poling, it’s necessary to note that the government did NOT concede that vaccines cause autism.

The poster presentation is by Laura Hewitson, who (along with her husband, Dan Hollenbeck) is a petitioner in a Vaccine Injury Compensation Program. (And bloggers Larry Arnold and Mike Stanton comment on the notion of “conflict of interest.)

Though when journalist David Kirby speaks on June 4th in the UK, these things may not be mentioned: This American invasion of further evidence for the MMR/vaccine-autism debate is a lot less bullet-proof than the Telegraph suggests.

Mike Stanton of Action for Autism provides some more information and background behind Kirby’s visit to the UK.

The epic comment thread (as one long-time reader put it) about Adam Race and the parish of St. Joseph’s rages on. Goes without saying that it’ll be of more than a little interest when a hearing is held in June. But back to a legal, autism-related matter of a different kind:

Yes, the proceedings in the Autism Omnibus, aka “vaccine court.” Week 2 of the hearing just finished. Two 10-year-old autistic boys, William Mead and Jordan King, are serving as the test case to determine whether or not some 4900 families should be compensated: These families have all filed claims with the U.S. Court of Claims alleging that vaccines caused autism and/or other neurological problems in their children. Audio recordings of each day’s testimony are available from the Vaccine Program/Office of Special Masters.

The bloggers at Left Brain/Right Brain have been noting the testimony of various “experts”:

• Elizabeth Mumper, a expert witness for the Petitioners, the medical director for DAN/ARI and founder of the Rimland Center.
• Dr. Robert Rust, the Thomas E. Worrall, Jr. Professor in Epileptology and Neurology, and Professor of Pediatrics at the University of Virginia.
• A Dr. Johnson (the post comments on why his qualifications are not specifically noted).

Mentioned in Dr. Rust’s testimony are some alternative treatments for autism that I had certainly never heard of. Both are apparently used by Dr. John Green III of Oregon for one of the boys: Earthworm eggs and a fecal enema. Mentioned in Dr. Johnson’s testimony was criticism of a study that found that thimerosal had neurotoxic effects in mice (the Safe Minds website has a pdf file of the study). Dr. Johnson specifically raised concerns about the poor quality of the tissue slides in the study; these slides were said to show abnormalities in mice injected with thimerosal.

Another study about thimerosal and neurological damage appeared this week and, too, there was more than a little to critique. The study has three co-authors, Heather A. Young, Assistant Professor of Epidemiology and Biostatistics in the George Washington University School of Public Health and Health Services, and David A. Geier and his father, Dr. Mark Geier. The Geiers have frequently been consultants in “vaccine-biologic cases before the no-faulty NVICP [National Vaccine Injury Compensation Program] and in civil litigation,” and Dr. Geier has also been an “expert witness,” as noted in the an Acknowledgment at the end of the new study. The new study received funding from the Autism Petitioners’ Steering Committee of the NVICP; this committee represents parents and is chaired by lawyer Clifford Shoemaker, who specializes in vaccine-injury litigation—just a few conflicts of interest behind a “scientific study.”

Further, questions were raised about whether or not the Geiers had received IRB [institutional review board] approval for use of the Vaccine Safety Database (VSD). B. Martin, MD, raised a number of questions and, later in the week, looked carefully at a letter by the Geiers to the IRB office of the Kaiser HMO (the Geiers were seeking approval to use data from Kaiser). Dr. Martin notes that the Geiers’ letter suggests

….a government conspiracy to keep the VSD data from the public, and more specifically from themselves.

This is familiar stuff in the vaccine-autism debate, in which various parties (in potentially paranoid fashion) have more often than not accused the government and government agencies like the CDC of withholding information about vaccines and other matters of public health. More analysis of the new study can be found at Epi Wonk, who—noting that the study has “a lot of problems” (enough for five posts, of which this is the first—specifically asks if this is a case of scientific fraud or just playing with data. (Go to Respectful Insolence for a further take-down of the new study.)

It was noted in the post about Adam Race and the restraining order filed by Fr. Daniel Walz that there was an impasse of sorts about Race’s “dangerous behaviors,” the decision to file the restraining order against his parents, and, too, his very presence in church; about whether he ought to be excluded. Generally in discussions about autism the question of whether vaccines or something in vaccines can be linked to autism is the cause of a lot of impasses in the conversation—-if you read the posts on the Autism Omnibus hearings at Age of Autism, you’ll see a different perspective.

But however much disagreement about what causes autism and how to “treat” it, there is some consensus about how parents of autistic children try and know they have to do the best by their children, and ven if it sets them up for public aspersion and accusations of “blame.” Frankly I am glad to be involved in the tumult of discussion. In the not too distant past, many—too many—children like my son Charlie would have been institutionalized at a young age and there’d be no discussion of how to teach autistic children to attend church services, or to be in school, to be in society. Sure, it’d be a lot “easier” for some if these questions of including autistic individuals did not need to be discussed, because the autistic individuals weren’t around.

For those who have been quite consistently arguing about the “unreasonableness” of a “dangerous” autistic child being in church—-I am grateful that we can discuss (argue) about these issues.

It seems that journalist David Kirby, who writes regularly about vaccines/mercury/something environmental as the cause of autism, will be at a special briefing at the Houses of Parliament on June 4. That’s the very same day as the Green Our Vaccines rally, which is sponsored by Talk About Curing Autism (TACA), Generation Rescue, HEAL Foundation - Healing Every Autistic Life and Moms Against Mercury. The rally’s to be held in Washington, DC: Looks like June 4th (which is the birthday of Socrates, Aesop, and the first Ford) is going to be “do vaccines cause autism?” sort of day on both sides of the Atlantic. (More raised eyebrows here.)

Charlie and I went to the playground today.

That probably doesn’t seem to be anything much to report, especially given other things going on this week. Charlie and I haven’t been to the playground in a while—in several months—and there was a time when we went at least twice a day. After school and before dinner. Mid-morning (on a weekend or holiday) and sometime after 3pm. Many posts when I first started blogging recount those hours of Charlie climbing and trying to walk up slides with the summer sun beating down on us.

With the sun just starting to set, Charlie climbed up a rope net. He’s so tall now that he really only had to reach out his hands to grasp the wood edge and pull himself up. He tramped up the slides several times, then went down the rope net. I walked around, trying to guess if the stormclouds would finally leave the sky—-today was a crazy weather day, sunny one moment and a driving downpour the next. Yes, I no longer have to keep constant watch on Charlie, lest he lose his balance or forget to duck so his forehead doesn’t bump a metal bar. Just in the past few weeks, he seems to have gained a inch or so: The playground poses no challenges, not anymore.

Jim was giving a lecture in Manhattan; after the playground, Charlie said “yes” to brown noodles—-shrimp chow fun from a Chinese restaurant that proclaims “NO MSG!” on its menu. We each got a plastic dish of steaming, slightly gooey-sticky noodles with green onions. Charlie opened both fortune cookies. One said,

Success is a journey, not a destination.

Too appropriate—life with Charlie is a journey of faith, love, grit, and hope.

The other fortune said,

Watermelon [and gave the Chinese word, xi gua].

This post tells a bit about Charlie’s longstanding fondness for this particular fruit (we’ve got a half-plus in the fridge right now).

It was a peaceful mom-and-boy kind of evening, with Jim calling to check in. In years past—when Jim was teaching at night and commuting from central New Jersey up to the Bronx daily—-there were a lot of mom-and-boy kind of days. Sure, we’d go out—Charlie did gymnastics class in those days, and some verbal behavior sessions, and there were inevitable trips to Target, grocery stores, malls, and book and toy stores—-but these were interludes in the long stretches of time. Sometimes, it was a tough day and it just seemed better to shut the door to strangers with raised eyebrows.

Yes, it got lonely, though, of course, we were never alone, me and Charlie together. I started blogging in June of 2005 in part because I just wanted to connect. As Charlie’s behavior problems increased, we could feel ourselves keeping more and more to ourselves, becoming more and more isolated. I blogged and—yes, it’s not the same as meeting people face to face and shaking hands and drinking coffee at the same table—-but when you blog, you don’t have to get a babysitter, and you can do it anytime—when Charlie was sleeping, or when Jim took him on a bike ride. And certainly it’s through the internet and blogging that I’ve “met” more people who have a stake in what gets said about autism.

Still I can’t forget the sense of shared experience and recognition I felt when, some years ago, I was at a conference and, when I asked why I was there, said “I have a child with autism.” “So do I,” both of my breakfast companions said, almost simultaneously.

I try to only go to things now that are nearby, in New York or Philadelphia (Washington D.C. is a bit of stretch, to tell the truth). Charlie seems to miss me more now that he’s older, for the sake of his sense of order (and mine, too).

Right now the Autism One conference is being held in Chicago. “Healing” and “recovery” from autism aren’t things I worry about, as you know if you’ve been reading here for a while (and you’ll also know I’m not world’s biggest fan of the conference’s keynote speaker, Jenny McCarthy). I was interested to see that AutismOne features a whole section on “Health and Happiness,” and specifically on “Mom’s Health and Happiness.” Sessions have topics like “Let Go through Radical Self-Forgiveness” and “The Blame Game” and “Are You Predisposed?”—topics which remind me that, for all that we say that “no one believes in the refrigerator mother theory of autism,” parents (mothers in particular) are still blaming themselves. Not because of being “cold” or “withdrawn” parents, but because of their genes, or of something they ate or didn’t eat during pregnancy, or because they realized they lived too near a power plant. And for sure, parents feel an (invisible) accusatory finger pointed at them when child “misbehaves in public,” or when something tragic like this happens.

So sure I’ve got my views about vaccine court and the ethical lapses of some research about thimerosal and autism. The news that got me excited today was about Pennsylvania allowing Medicaid funds to be used for autistic adults: I think a lot these days about Charlie’s future, about job possibilities and where he’ll live. Already Jim and I have reached another milestone in our life parenting our boy growing up into a teenager: Jim has given Charlie his last piggy back ride (and has a sore back to prove it).

I think a lot about how I hope Charlie will know that we’re always with him, even if we can’t–won’t—always be here beside him. And I hope he can always keep a piece of the peaceful easy-feeling we shared one May evening, on the playground and over chow fun with a taste of watermelon, one more evening on our journey together—who knows the destination?

Paul Offit, M.D., chief of infectious diseases at the Children’s Hospital of Philadelphia and professor of pediatrics at the University of Pennsylvania School of Medicine. He is frequently quoted regarding the controversy over a vaccine-autism link; he emphasizes the importance of vaccines for public health. Dr. Offit is, accordingly, not exactly a beloved figure among those who claim that there is a link between autism and vaccines and has even been the recipient of death threats.

In the May 15th New England Journal of Medicine, Dr. Offit revisits the case of Hannah Poling in light of the recent history of the Vaccine Injury Compensation Program (VICP). With the start of  another case in “Vaccine Court” on Monday, Dr. Offit’s essay is certainly timely, though I’m sure he’ll receive merciless “jabs” (may as well use the pun at this point) on the web and elsewhere by those who believe that there is, beyond a doubt, a link between autism and vaccines.

Dr. Offit states that the VICP’s consession to Hannah Poling—that vaccines aggravated her underlying mitochondrial disorder and caused symptoms of autism—-was “poorly reasoned” for four reasons:

1. “…whereas it is clear that natural infections can exacerbate symptoms of encephalopathy in patients with mitochondrial enzyme deficiencies, no clear evidence exists that vaccines cause similar exacerbations.” It is even recommended that children with these deficiencies receive all their vaccinations, as they are especially susceptible to infections.
2. “…..the belief that the administration of multiple vaccines can overwhelm or weaken the immune system of a susceptible child is at variance with the number of immunologic components contained in modern vaccines.”
3. “…although experts testifying on behalf of the Polings could reasonably argue that development of fever and a varicella-vaccine rash after the administration of nine vaccines was enough to stress a child with mitochondrial enzyme deficiency, Hannah had other immunologic challenges that were not related to vaccines. She had frequent episodes of fever and otitis media, eventually necessitating placement of bilateral polyethylene tubes.” As Dr. Offit notes, this is not an atypical medical history for a child; just reading “otitis media” reminded me of my son’s ear tube operation, just over nine years ago.
4. “…without data that clearly exonerate vaccines, it could be argued that children with mitochondrial enzyme deficiencies might have a lower risk of exacerbations if vaccines were withheld, delayed, or separated. But such changes would come at a price. Even spacing out vaccinations would increase the period during which children were susceptible to natural infections,” including such diseases as chicken pox, pertussis, and pneumococcus.

Dr. Offit compares the concession in the case of Hannah Poling to two earlier cases in which “the VICP seems to have turned its back on science”: In 2005, Margaret Althen was successful in claiming that a tetanus vaccine had caused her optic neuritis; in 2006, Dorothy Werderitsch successfully claimed that a hepatitis B vaccine had caused her multiple sclerosis. Even though the scientific literature did not provide evidence of such claims,

VICP ruled that if a petitioner proposed a biologically plausible mechanism by which a vaccine could cause harm, as well as a logical sequence of cause and effect, an award should be granted.

“Plausible” means

“apparently reasonable and valid, and truthful”

—-and apparently reasonable and valid, and truthful, is not the same as something (a hypothesis of autism causation, for instance) being actually reasonable and valid, and truthful. And perhaps this is why the fate of the vaccine-autism link is being tested, and perhaps decided, in the courtroom rather than the lab. If it’s “a logical sequence of cause and effect” that is needed to explain that “biologically plausible mechanism,” those who can construct the most forceful (but not necessarily true) arguments—those who know best to use language to build a case for a purported vaccine-autism link—have something of an advantage. It seems that it is not science that is going to be the decisive factor here, but the power of argument, and, too, of rhetoric.

It is precisely language that is that has become problematic for scientists in disputing the claims of those who contend that there is a link between vaccines and autism. As Dr. Offit writes at the end of his article:

After the Polings’ press conference, Julie Gerberding, director of the Centers for Disease Control and Prevention, responded to their claims that vaccines had caused their daughter’s autism. “Let me be very clear that the government has made absolutely no statement . . . indicating that vaccines are a cause of autism,” she said.5 Gerberding’s biggest challenge was defining the term “autism.” Because autism is a clinical diagnosis, children are labeled as autistic on the basis of a collection of clinical features. Hannah Poling clearly had difficulties with language, speech, and communication. But those features of her condition considered autistic were part of a global encephalopathy caused by a mitochondrial enzyme deficit. Rett’s syndrome, tuberous sclerosis, fragile X syndrome, and Down’s syndrome in children can also have autistic features. Indeed, features reminiscent of autism are evident in all children with profound impairments in cognition; but these similarities are superficial, and their causal mechanisms and genetic influences are different from those of classic autism.

The CDC did not immediately send out a message proclaiming that “this concession does not mean that the government says that vaccine cause autism”: By not sending out such a clear and direct statement, a great deal of debate arose, and is still raging, about the government “conceding” regarding Hannah Poling’s case.

And, as Dr. Offit points out, what exactly is meant by “autism” in regard to Hannah Poling is not entirely clear, due to what is known about her “global encephalopathy” that was “caused by a mitochondrial enzyme deficit.” While she displayed the “difficulties with language, speech, and communication” that are regularly noted as pointing to an autism diagnosis, the causal mechanisms and genetic influences” for those difficulties are “different from those of classic autism,” as Dr. Offit writes. If the level of autism awareness were not as high as it is now, and if autism were not being said to be more and more common, would Hannah Poling still have been said to display symptoms of autism? Or would some other disorder or dysfunction be emphasized?

And, if the VICP had “more rigorously” defined what it means by a vaccine causing harm, perhaps there would not be such grounds for the cases of Margaret Althen, Dorothy Werderitsch, and Hannah Poling. Dr. Offit indeed calls on the VICP to create such criteria, or further risk eroding “public confidence in vaccines and hurt those whom it is charged with protecting.” Dr. Offit is well aware of the popular press’ and the internet’s role in fanning and refueling the flames of vaccine misinformation. A few days ago, Dr. Offit was quoted in the Washington Post as saying

“I think that what’s so endearing to me about the anti-vaccine people is they’re perfectly willing to go from one hypothesis to the next without a backward glance.”

And, it seems, quite willing to change how “autism” is referred to: As Kev at Right Brain/Left Brain has been noting in his coverage of the latest round of “Vaccine Court,” the lawyers for the petitioners and an expert witness have been carefully defining autism into sub-groups such as “regressive autism” and “clearly regressive autism“: Does this mean there is also “unclearly regressive autism” or “clearly progressive autism”?

These shifts in theories of what causes autism can become the basis for new treatments that are said to potentially “cure” autism. For instance, chelation, in which the body is “detoxified” of “heavy metals” and of mercury via medicines and “chelating agents,” is said to be a treatment specifically for autistic children. As Orac points out in a recent post, chelation has also been suggested as a treatment for other conditions, including atherosclerotic coronary artery and peripheral vascular disease. There’s a multimillion dollar “clinical trial” on chelation as a treatment for coronary artery disease being sponsored by the National Center for Complementary and Alternative Medicine (NCCAM); Orac points readers to an article about Why the NIH Trial to Assess Chelation Therapy (TACT) Should Be Abandoned—they don’t, as he writes, call it “cheat-lation” for nothing.

And more and more one wonders if, when the last of the 4900 cases in the “Vaccine Court” has been closed, will anyone feel just a little cheated for having made this their focus.

On April 11th, a new document in the case of Hannah Poling was filed. The document—Order Deferring Ruling on Petitioners’ Motion for Complete Transparency of Proceedings—-can be read here. The petitioners are Terry Poling and Jon Poling, the parents of “Hannah Poling, a minor.” The respondent is the Secretary of Health and Human Services. The Polings have requested that two Rule 4 Reports filed by the respondent be disclosed. (A Rule 4 Report is filed by respondent in a vaccine proceeding and incorporates medical information pertaining to the petitioner.)

One report states that Hannah’s seizure disorder was “not related to her vaccinations”; the second states that this was the case and that she qualifies for compensation. In late February-early March, it was learned that respondent’s Rule 4 Report had been made “publicly available in an electronic format.” The conclusion of the document is to defer a ruling on the petitioners’ motion for “complete transparency of proceedings”; while both parties express “willingness” to “provide consent,” such has not yet been reached.

Journalist David Kirby wrote his first post about the case of Hannah Poling on February 25th. On February 26th, in a post entitled The Vaccine-Autism Court Document Every American Should Read, Kirby posted (as he writes) a “verbatim copy of the US Government concession filed last November in a vaccine-autism case in the Court of Federal Claims, with the names of the family redacted” and noted that this document was the subject of his February 25th post.

A discussion about the new document is ongoing at Left Brain/Right Brain. I’ve summarized the document below (click on “read more”). A key distinction made in the response to the petitioners, the Polings, is about what constitutes “information” and what is considered “evidence.” Respondent argues that “evidence” is a narrower term and that there is “information” in the reports whose disclosure has “certain limitations” placed on it, in accordance with section 12(d)(4)(A) of the Vaccine Act.

Read more

In the past several months, more and more scientific studies have added evidence that disputes a link between thimerosal and rising autism rates, and that link autism to mercury. Concurrently, a number of studies offer further evidence about genetic of factors and autism. Also at the same time, proponents of the view that some external, environmental factor can be linked to what is called “regressive autism” have been on a steady campaign to redefine and “rebrand” autism. Journalist David Kirby, whose 2005 book Evidence of Harm is subtitled “Mercury in Vaccines and the Autism Epidemic: A Medical Controversy,” has been offering a number of new monikers for autism, including “Environmentally-acquired Neuroimmune Disorder” (”E.N.D.”) over a year ago and, more recently, “vaccine-aggravated mitochondrial disorder.”

Is mercury in retrograde—is it falling by the wayside—as the cause of autism just as “bad mothering” has?

Not even a year ago, Kirby, in investigating a supposed “autism cluster” in Northvale in northern New Jersey, was “[wondering] about known neurotoxins lurking just outside the school, and especially mercury.” Ever since he (in his own words in the April 27th Huffington Post) “leaked news of the Federal government’s admission that vaccines had triggered autism in a little girl named Hannah Poling,” Kirby’s focus has become mitochondrial disorders.

Mitochondria are the “fuel” of a cell that convert sugar into energy (and which, according to a new study in PLoS-Genetics, may also be a sort of “‘command center’” that decides cell division). At least 1 in 4000 people worldwide have mitochondrial deficiencies; the Mitochondria Research Society estimates that more than 50 million adults have diseases in which mitochondrial dysfunction is involved, and that of the 4 million children born each year in the US, “up to 4000 develop mitochondrial diseases.”

In his latest piece seeking to link vaccines to autism, Kirby argues that the case of Hannah Poling—whose underlying mitochondrial disorder was found to have been aggravated by vaccines, resulting in her developing autistic symptoms—is “neither isolated or unusual.” Kirby reports that one more child, “a young boy from New York,” also (like Hannah Poling) has “dysfunctional mitochondria” and was therefore “susceptible to autistic regression, triggered by a vaccine-induced overtaxing of the immune system.” Kirby highlights that this boy (whose name he does not mention) was “selected to replace Hannah Poling as the first-ever thimerosal ‘test case in so-called Vaccine Court,” after Poling’s case was withdrawn following the government’s concession. And now, this boy’s case has also been withdrawn because “just been found with many of the same unusual metabolic markers as… you guessed it, Hannah Poling.”

Besides not mentioning the name of the New York boy, whose father is Bob Krakow, the President of A-CHAMP (”Advocates for Children’s Health Affected by Mercury Poisoning”), Kirby does not mention—as Kev at Left Brain/Right Brain points out—that the medical report on Krakow’s son does not mention fever or raised temperature. As Kev writes,

If I recall correctly, it was a key part of the Hannah Poling scenario that the vaccines had given her a fever and it was this which aggravated her underlying mitochondrial disorder and in turn caused her autism. Alexander Krakow’s medical report mentioned no fever at all.

Kirby rather tries to suggest that Hannah Poling and Alexander Krakow are just the first of many hypothetical cases of autistic children who have an underlying mitochondrial condition:

“We want to pursue an additional theory, not a different theory,” the boy’s father told me. “We are by no means abandoning the thimerosal theory of causation but, in the context of the test case, the thimerosal theory would have eclipsed our other evidence, including evidence of metabolic dysfunction,” such as impaired mitchondria and low cellular energy.

Following the Poling concession, he said, “I saw right away that we needed to pursue the mitochondrial theory,”but the lead attorneys did not see it that way. “Perhaps they did not properly understand the concession, and believed the finding was of a rare, genetically caused mitochondrial disorder,” as the government contends. “I think they rightly want to keep clear focus on thimerosal in the test case, and not muddy the presentation with other theories.”

Or perhaps the thimerosal theory is seeming to be more and more a theory, and hypothetical?

Kirby then seeks to suggest that the fact that two children whose cases have been brought to the “Vaccine Court” by their parents, and whose cases have been withdrawn in order to “pursue an additional theory,” is enough to suggest that Hannah Poling’s mitochondrial condition is not so “rare” after all. Here his language shifts from the specifics of the mitochondrial conditions of two particular children, Hannah Poling and the second child, to speculation about estimated indefinite numbers of autistic children with these conditions:

Some estimates of mitochondrial dysfunction in children with autism range as high as 20%-30%. But among the regressive subset of cases (virtually all of the claims in Vaccine Court) up to half of the children might show signs of it.[my emphasis]

What is needed to support this latest theory of autism causation is to find, or to hope to find, that there is a sort of hidden hoard-like number of autistic children who also have mitochondrial conditions, or it’s not going to be so easy for Kirby and others to keep talking about a so-called autism epidemic.

Though if such children with such conditions are not found, it seems likely that some other cause will be, and that some will find a way to link it to vaccines.