On October 12, while presiding as the honorary chair for an Autism Speaks walk on the campus of Ohio State University, President Gordon Gee made remarks including the statement that “‘It [autism] should not exist.’” Melanie Yergeau, a 2nd-year Ph.D. student in English, wrote this letter, which is posted on the Autistic Self-Advocacy Network blog. As Yergeau, who notes that she has Asperger’s Syndrome, writes:

Until very recently, I have felt incredibly welcome at Ohio State—due to the interdisciplinary work of the Disability Studies Program and the Department of English, the Office of Disability Services, and the programs for high-functioning/Asperger’s adults at the Nisonger Center. I would urge you, as you continue in your autism advocacy, to consider what cure means to autistic individuals themselves, to familiarize yourself with organizations that actually appoint autistic individuals to their executive boards (e.g., the Autistic Self-Advocacy Network, or the Global and Regional Asperger Syndrome Partnership). In this regard, I find it important to note that none of the leadership or board positions of Autism Speaks are occupied by autistics: Autism Speaks speaks about autistics rather than for or with autistics.

As I read articles and listen to reports of the rally from my saddened autistic friends, I’ve noticed a trend in representation at Autism Speaks rallies like the one on October 12, 2008: autistics themselves have no voice. Any conversation that determines the fate of autism, I would argue, must consider the opinions, voices (however literally or metaphorically), and experiences of those on the autism spectrum. Although Autism Speaks admirably aims to help families attain necessary medical services, their cure-and-epidemic rhetoric frequently denies autistic individuals a most fundamental right—that of their personhood.

Read the rest of Yergeau’s thought-provoking letter.

“For families struggling with autism finding the latest treatments is a top priority,” begins an October 14th WCBStv story about “a controversial approach” that “is making headlines” (which, of course, has nothing to do with the actual efficacy of said approach). The approach is hyperbaric oxygen therapy and the doctor is Dr. James Neubrander, whose website refers to autism as the “treatable untreatable disorder!.” A hyperbaric chamber will set you back $21,000, WCBStv notes. Dr. Neubrander says that HBOT treats “decreases inflammation” and somehow altars the brain chemistry of autistic children and, while there’s no studies to back it up, he says:

“No, the studies are not there, but it doesn’t invalidate what we see. The studies are coming.”

It’s a familiar refrain about how “studies” and especially studies “in the future” will provide proof that some alternative treatment or other does what it it claimed that it does. Dr. Mark Geier and David Geier are also members of what some call the “autism treatment subculture” and continue to publish studies seeking to offer evidence for claims of a vaccine-autism link. At yesterday’s Pathophilia, the metabolite values used by the Geiers are under question—and this is important, as the Geiers seek to show that “levels of these metabolites—as markers of oxidative stress and “decreased detoxification capacity”—in children with ASD are significantly different from those in children without ASD.”

Pathophilia examines the figures by the Geiers and supplied by their cited references or other relevant sources. Details are here; here’s the conclusions:

Geier et al present metabolite values in children with or without ASD that are questionable. In particular, some values measured by Geier et al—for example, cysteine (whether total or free), oxidized glutathione, and total sulfate—are considerably different from those published elsewhere, including those values obtained or calculated from references cited by the authors. Other values from ASD or neurotypical subjects—for example, reduced glutathione and taurine—are within the reference ranges published in the literature.*** Only in the case of plasma free sulfate was the mean level in ASD subjects outside of the normal range provided by the substantiating literature.

Before any diagnostic or treatment recommendations can be made on the basis of this study (or any study, for that matter), results must be shown to be reliably reproducible by a different set of authors using more than one experienced, reputable laboratory, and any discrepancies between control values and those in the literature must be noted and explained. It should also be determined whether tighter controls, particularly in the form of age matching between autistic and neurotypical subjects, should be performed when comparing these metabolite levels. Last, the significance of any mean values in autistic children that lie within the published reference ranges, although they may be statistically different from a given study’s control values, must be considered cautiously.

In other words, of the metabolite values that the Geiers say are in autistic children, most do not match up with those found in other studies, including the studies cited by the Geiers. Does this study, then, have any application beyond itself—-or, what can do you with a $21,000 HBOT chamber, if you’re not able to cure autism with it?

My main priority as the mother of an autistic son is not to find those “latest” treatments, but to ensure he has the appropriate, and the best possible, school, services and supports that he needs to help him move forward into the future.

As the October 1st issue of Scientific American Mind reminds us, words have power. I know this even more whenever I hear my son Charlie speak. He was very, very late to talk and he first didn’t talk at all, but used sign language. Today he speaks in short phrases and sentences, and almost-sentences.

A lot of words get thrown around about autism on the Internet, on blogs and newspaper and media websites and who knows where else. Too often, even most often, it seems that the vast percentage of those words are in the realm of misinformation, as the numerous mentions of notions about what causes autism, from power plants in Texas to the quite infamous hypotheses about vaccines and/or mercury. As Dr. Paul Offit noted on his Science Blogs Book Club post today:

A couple of bloggers praised the book for its tone, that I never appeared to get angry at the false prophets described in the book. The reason for that is that I’m not the father of a child with autism. If I were, I would have been quite angry. Angry because I think that the anti-vaccine forces have taken the autism story hostage. And angry that because of their influence, the media almost never carries stories about the real cause or causes of autism.

“Taken hostage”—-yes, that’s pretty much what has happened to autism discussions. Whether about education, safety concerns, how to get your child to eat more: Too often discussion devolves into “but look at this study” and “but you still can’t say 110% plus that there some vaccine won’t lead to some adverse effect in some child.” It’s an oh-so-endless game of bait and switch and if you, as I do, do not think that vaccines or something in vaccines can be linked to autism, it seems you’re d**ed if you do join in the fray, and doubly d**ed if you don’t.

The saddest thing, or thing that makes one maddest, is that–as Kev blogged today—autism has become a secondary concern in these debates. One has only to read the latest Age of Autism post by David Kirby about the “‘weaknesses and limitations’” of the CDC’s Vaccine Safety Datalink (VSD) to feel that much, if not most, of the discussion about vaccines and autism has strayed far away from talking about actual autistic people, like the boy who’s sitting across from me savoring fresh chunks of watermelon as I write this on a Thursday night: That boy lugged a whole quarter melon around a grocery store as we shopped, and slung the bag with the melon and a lot of other food items  over his left shoulder with a grin because he was doing it on his own, and didn’t need my help.

As Dr. Offit has also pointed out in chapter 5 of his recently published book, the information in the VSD needs to be read and interpreted with care; for instance, the VSD lists the diagnoses of children by codes, rather than from “direction information from medical charts” (p. 93). In the VSD (of necessity) it’s a database of information—a child is a code, a diagnosis, with certain features and symptoms; the portrait of a child presented in the VSD (or any database) is an abstraction, a distillation of certain features.

And shouldn’t the discussion about autism be about autistic people, and centered round what autistic people themselves have to say, rather than endless musings about bits of data and numbers and figures?

Over at Salon on his blog sWell blog, physician Rahul K. Parikh deconstructs David Kirby’s September 24th presentation to Congressional staffers. The presentation’s title was “The Vaccine-Autism Debate: New Developments from Science and Policy” and the PowerPoint slides and a write-up are posted on the Age of Autism weblog. Sullivan has been posting about the hearing as Vaccines on the Hill III, Vaccines on the Hill II, and Vaccines on the Hill. Liz at I Speak of Dream noted that this latest attempt to “indoctrinate congressional staffers” by the usual suspects in the anti-vaccine/pro-vaccine safety annals—-Davis Kirby, Mark Blaxill (VP of Safe Minds)—-gets a fail.

Dr. Parikh explains why after assessing the claims of each of Kirby’s slides with an eye to Kirby’s use of certain rhetorical strategies. Two examples:

Slide 3: “A New Autism Vocabulary” [compare this phrase to Kirby's constant rebranding of autism]

Here goes onto use many scientific terms here. Among them, “autoimmunity,” “neuro-inflammation,” “gliosis”

Assessment: Mr. Kirby tries to establish his credibility as “an expert” by using words we learn in medical school and college neurobiology class. All of these terms could describe mechanisms by which autism, or any other neurodevelopmetal disorder in children or the elderly, start and progress. But none are specific to autism. “neuro-inflammation,” for example, could just as easily describe what happens when an elderly person develops Alzheimer’s Disease. But the “principle of authority” technique he uses helps to establish himself as a guru who deserves our attention.

Slide 4: This slide appears to cite a commentary (NOT a STUDY) from the medical journal, Pediatrics (he uses the logo at the top).

The commentary was about a conference convened in 2007 at the Insitute of Medicine to discuss the opportunities for research into and treatments of autism. Below the big header, Mr. Kirby writes, “The environment may play a significant role in triggering autism” and that “genes alone cannot account for its cause.”

Assessment: There is nothing said here that experts on both sides of the vaccine “debate” would disagree over. Genes + Environment = disease. It’s true for every chronic disease from Asthma to Diabetes to Heart Disease. A more accurate thing for Mr. Kirby to do would have beeen to actually cite his sources. It helps keep him accountable and credible.

I should note, however, the commentary he cites doesn’t mention vaccines at all.

And so on for several more slides; Dr. Parikh sums his analysis up with this:

There you have it. Mr. Kirby effectively uses fancy medical lingo to build his credibility and tell us things we already know, relies on science that he can’t cite the source of or that can’t be applied beyond Monkeys, gives us book reports on mitochondrial diseases and neuro-inflammation, calls court decisions and quotes from famous people proof of his point.

Just what was that point, anyway?

Further testimony to the fact that never was (and never should have been) any controversy over vaccines and autism, and that the belief that there is has been kept alive with a fair amount of propaganda?

So with Mother Warriors: A Nation of Parents Healing Autism Against All Odds, Jenny McCarthy’s new autism book out, I decided I need to fess up.

I am a retired Warrior Mom.

“Warrior Mom” is the term that Jim used to use when I got into a certain “those administrators haven’t heard the last of us” “did that doctor listen to one word we were saying” “if we don’t do it this way he’ll never get it” “I know best because I’m the mom” state of mind—-that kind of defiant, mother-bear-out-to-protect her cubs mode. I was determined, I’d read everything book and article and stared at websites on my computer screen for so many hours and I was the person who spent the most time with Charlie—–surely I knew the most, and the best.

In some cases, I did. In other cases, I didn’t, and I’d wonder if it was precisely my determination and sense that I had to be right about what to do for Charlie that sometimes blindsided, and blinded, me. Like more than a few parents, my initial feelings of despair, loss, anger, sorrow, and chaos on learning of Charlie’s diagnosis were, I thought, to be overcome by taking matters into my own hands, learning how to the therapies and doing “research” about causes and treatments.

I first read about the special diet on the internet in June of 1999. I stopped at a health food store on the way home and, armed with a pile of printed-out recipes for gluten- and casein free foods, proceeded on home and announced to Jim, wheat has got to go.This all occurred in the days prior to Charlie starting any educational therapies. Jim and I had not been able to get Charlie to come to us when we called him (sometimes, indeed, he flopped down on the ground when we did). We had no faith in our capacity to teach Charlie at that point. But the diet was a different story. Charlie ate very few things in those days as it was, so just starting the special diet meant having to get him to eat something new, and that seemed a good thing.

I wanted, I styled myself, to be like some kind of super mom. And my biggest fight—-the obstacle that seemed to be in the way of all—-was autism.

What changed me was nothing dramatic, nothing revolutionary. When Charlie was 7 to 9 years old and having so much trouble, I started to sense that being the mom-always-ready-to come out kicking and screaming was not the best way to be. I needed to think less, if you will, histrionically about how I’d do anything for Charlie, anything, and focus on strategy, sizing things up, building allies and staying calm.

In McCarthy’s first autism book, Louder Than Words, there are numerous scenes of her (one while clad in Bugs Bunny pajamas, as she notes a few times) screaming and calling for help and doing whatever it takes to get those EMT workers there for her son. This is “Mother Warrior” behavior, the screaming and speaking loudly, the near-hysteria, the willingness to make a fool and spectacle of oneself in the interest of getting the best for one’s child. McCarthy’s taking a lead role in the Green Our Vaccines rally added more to her Mother Warrior credentials, as she made her personal political. She shall be “politically active” in a green kind of way and talk about helping kids, challenging doctors, etc., etc.. For her appearance on Oprah today, McCarthy’s asked people to ask her a question: The Mother Warrior Shall Speak.

These days, while I’ve more to say than ever, I try even more to listen. The “fight” with autism is over, and we accept and hope. We’ve let go of recovery and know that autism is lifelong. I no longer feel I have to deliver a mini-autism-awareness-information lecture when someone looks askance at Charlie.

Sometimes, I kind of feel he’s protecting me.

Tuesday night at the grocery store, after I’d bagged green bananas and cracker boxes and packs of vegetables and frozen egg rolls and sushi (not frozen), I handed Charlie two bags to carry. With the complexities of motor-planning in mind, I helped secure one bag on his shoulder and he lifted the second one up in his hand, and headed out the automatic door to the car. I followed, with only one bag.

Most of the food is for Charlie—-a growing boy looking out for others needs to build his strength.

‘Tis September and, it seems, the season for autism books: Started off the month with Dr. Paul Offit’s Autism’s False Prophets: Bad Science, Risky Medicine and the Search for a Cure and now here comes Jenny McCarthy’s autism book #2, Mother Warriors: A Nation of Parents Healing Autism Against All Odds , and accompanying appearances on Oprah, video clips, and the like.

So there you have it. The Vaccine Doctor and the Autism Mom Heroine. In this script, Jenny and her following of David(a)s are poised, too-good non-toxicness products in their hands, to take on the evil Goliath of the Medical Establishment, Big Pharma, the dreaded CDC. I guess we should look out for flying stilettos (or maybe Crocs; warrior moms have to take their kids to the pool for sensory relief) while hearing refrains of “Just Say No to Jabs,” “Vaccines Can Take a Vacation,” and “For Shame, Bad Doctors!”. Moms in distress fighting to their last, giving it their all, to save their child: You need look no further than Bambi for this plot, and the doctors with their shots get equated with the guys with the munitions. (Get it, they shoot.)

It’s an emotional topic, this vaccine-autism business. But the problem is, developing vaccines and treatments, conducting studies to figure out what causes autism, whether thimerosal has anything to do with it (it doesn’t)—these are the stuff of scientific study, and emotions cloud things up. But how parents feel—about what “made” their child autistic, about who listens when they’re hurting—-plays at least some part in the choices parents make. So in responding to Dr. Rahul Parikh’s review of Autism’s False Prophets does journalist David Kirby appeal to emotions, entitling a post Dr. Rahul K. Parikh, I Am Becoming Embarrassed For You. Kev at Left Brain/Right Brain responds with David, I am not embarrassed but puzzled. Dr. Parikh responds by listing the rhetorical, but not science-based, tactics used by Kirby:

attacking the messenger, citing irrelevant science, moving the target, demanding that alternative views to theirs be squelched, or relying on slick slogans and celebrity endorsements

Thrust and parry.

Dr. Parikh notes that he has been smacked down by Kirby: Fighting words, via a metaphor from the wrestling ring, if there ever was one.

And now that we’re gonna have all these warrior mothers jumping into the fray, looks like this latest round of the vaccine-autism “war/controversy/not a controversy/debate/not a debate because they science says that vaccines don’t cause autism”—-looks like it could get at least a little ugly-toxic-heated.

Me, being the mother of an autistic son, and a mother who knows vaccine didn’t cause him to be autistic, I’ll be trying to side-step way through the midst of the fray, and see who floats, and whether or not there’ll be a surprise plot twist.

Friends are expecting babies, friends have recently had babies, friends are thinking about having babies.

A discussion about the book The Curious Incident of the Dog in the Night-time and autism in the summer school course I’m teaching ends with a question from one of the high-school students: “But what can you do to make sure your baby’s 100% ok?”

Something called the “Ultimate Baby Shower” in Boston only seems likely to reinforce fears and worries in expecting mothers. Should they pay $2,195 down plus $125 a year to a company called ViaCord to store their umbilical cord blood? Parents are told that banking cord blood is an important precautionary measure “in case the child develops a life-threatening blood disease later in life.” Writes Beverly Beckham in the August 3rd Boston Globe:

……isn’t this striking fear into people and dividing them too, into mothers who can afford to bank blood for their children and mothers who cannot?

Why is it that fear rules our lives? Fear of something being “wrong” with a baby. Fear that the $60 car seat isn’t as safe as the $260 one. Fear that a mattress might be too soft or too hard. Fear of toys made in China and clothing made of non-organic material. Fear of plastic and talcum powder, of cancer and autism, of mosquitoes and dog bites, of a bus sliding off a road, of undertows, of staph infections, of crossing the street, of kidnappers and molesters and terrorists?

We believe that if we’re vigilant and plan ahead and follow every rule, we can keep our children safe. But the truth is we can’t protect them from everything.

Seems like “fear of autism” is not only looming for new parents in New Jersey.

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.

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.

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.