The price of antivaccine fanaticism, 2013 edition

That the myth that vaccines cause autism is indeed nothing more than a myth, a phantom, a delusion unsupported by science is no longer in doubt. In fact, it’s been many years now since it was last taken seriously by real scientists and physicians, as opposed to crank scientists and physicians, who are still selling the myth.  Thanks to them, and a dedicated cadre of antivaccine activists, the myth is like Jason Voorhees, Michael Myers, or Freddy Krueger at the end of one of their slasher flicks. The slasher or monster appears to be dead, but we know that he isn’t because we know that he’ll eventually return in another movie to kill and terrorize a new batch of unlucky and invariably not so bright teenagers. And he always does, eventually.

Unfortunately, the myth has a price, and autistic children pay it when they are unlucky enough to have parents who have latched on to this particular myth as an explanation for why their child is autistic. One price is blame. Parents who come to believe the myth that vaccines cause autism also express extreme guilt that they “did this” to their children, that it’s their fault that their children are autistic. At the same time, they have people and entities to blame: Paul Offit, big pharma, the FDA, the scientific community, pediatricians. As a result, the second price is paid: Their children are subjected to pure quackery, such as “stem cell” injections (which almost certainly aren’t actually stem cells, given the provenance of the clinics that offer such “therapies”) into their cerebrospinal fluid, and what in essence constitutes unethical human experimentation at the hands of “autism biomed” quacks. Meanwhile these same quacks reap the financial benefits of this belief by offering a cornucopia of treatments to “recover” autistic children that range from the ineffective and usually harmless (such as homeopathy) to the ineffective and downright dangerous (dubious “stem cell” injections by lumbar puncture into a child’s cerebrospinal fluid). These treatments drain the parents’ pocketbook and do nothing other than potential harm to the children. These prices are intertwined, and just last week I saw examples of both prices on full display at various antivaccine blogs. Worse, the concept appears to be metastasizing beyond vaccines. As more and more scientific evidence fails to find even a whiff of a hint of a correlation between vaccines and autism, the One True Cause of Autism, which was once vaccines or mercury in vaccines, has become the Many True Causes of Autism, in which vaccines (it’s always the vaccines) mix with pharmaceuticals, pollution, diet, and chemicals to produce autism in a manner that is a lot harder to falsify than the older, all too scientifically testable hypothesis that vaccines cause autism.

I described an example of the price last week when I took note of how an antivaccinationist named Beth Lambert was shilling for money to complete a film in which she plans on subjecting seven autistic children to “autism biomed” quackery in order to “prove” that this quackery heals “vaccine injury”—or injury due to the multifarious combinations of toxins (which, I note, always include vaccines). That was bad enough, but I saw something worse over the weekend, namely a post promoted in the antivaccine crank blog Age of Autism about a post in another antivaccine crank blog The Thinking Moms’ Revolution (in reality The Not-So-Thinking Moms’ Revolution), entitled How I gave my son autism.

It’s a chilling read. In fact, I don’t remember reading anything quite so disturbing in a long time. The blogger, who goes by the ‘nym Mountain Mama, begins by writing about how she was raised Catholic and therefore believes in the concepts of reconciliation and absolution, forgiveness and redemption, introducing her topic thusly:

My spiritual beliefs have evolved and changed over the years, but the idea of forgiveness is still critical to how I walk through life. There are things I have done for which I know God forgives me. However, I’m pretty sure that I will never forgive myself, for my transgressions are embodied in a beautiful seven-year-old who tells me daily that I am “the best Mom in the universe.” I know the truth. And someday, so will he. All of these “unforgivable” actions were done with the best of intentions, but we all know what they say about “good intentions” and “the road to hell.” I am admitting here for all the world to see: I gave my son Autism. I did it. Me. And no one can ever take that away.

See what I mean? See how chilling this is? It’s horrifying! Mountain Mama is convinced that she and she alone is responsible for her son being autistic. So consumed with guilt and self-loathing is she that she lives in fear of the day when her son learns of her role in making him autistic. The subtext is clearly that her son will blame her and even come to hate her for having made him the way he is. The other subtext is that Mountain Mama appears to be wondering if God or her son can ever forgive her for the evil that she believes she has done to her son. The expression of guilt at having “caused” one’s child’s autism is something I’ve seen before. Having long perused antivaccine blogs, websites, and discussion forums, I’ve seen innumerable times when parents have blamed themselves for vaccinating their children and vowed never to do it again. What is striking about Mountain Mama’s post is the sheer number of ways that she believes she has caused her son’s autism, beginning with prenatal ultrasounds:

I had at least five while I was pregnant. I was assured that they were completely safe. Heck, you can get them in malls, so I assumed they were pretty benign. Wrong! While I didn’t get ultrasounds in malls, I didn’t research them either. Ultrasounds have, in fact, been implicated in autism among other neurological disorders. While there is no definitive “causal link,” enough has been found to warrant further research and precautionary measures. According to this article, “Research shows populations exposed to ultrasound have a quadrupled perinatal death rate, increased rates of brain damage, nerve cell demylienation, dyslexia, speech delays, epilepsy and learning difficulty.” Sound familiar?

Well, yes, but none of these things are autism. In any case, the article Mountain Mama cites is from a chiropractor webpage that conflates an FDA warning about 4D “vanity” or “keepsake” ultrasounds that can be obtained in clinics in malls and are not done for medical reasons with medical ultrasound. As the FDA warning itself states, unlike medical ultrasounds, which are usually performed in the shortest time reasonable to get the necessary information, these “keepsake ultrasounds” sometimes require an hour to get a video of the fetus. Even though there is no convincing evidence linking prenatal ultrasounds with adverse health outcomes, be they autism, neurological conditions, or premature death. Basically, the FDA warning was an exercise of the precautionary principle based on the principle of “we just don’t know.” Conservatively and wisely, the NIH Consensus Statement on Diagnostic Imaging in Pregnancy states that ultrasound examinations solely to satisfy parental curiosity about the sex of the baby, view the fetus, or for educational purposes “should be discouraged” and that examinations without medical benefits shouldn’t be done, reasonable recommendations for any medical test.

One can argue whether or not the FDA overreacted given the lack of evidence, but it probably did not because it’s a general principle that medical tests should not be done for nonmedical reasons because their use under such situations is all risk and no benefit. From an ethical standpoint, even if the risk is not known or is very, very tiny, one can make an argument that it’s not a good idea to do medical tests when they are definitely not indicated. Certainly, there is not enough evidence to justify self-flagellation by a mother that she caused her child’s autism because she got the recommended prenatal ultrasounds. Indeed, a recent study and review of the literature fail to find evidence of a correlation between prenatal ultrasounds and autism, and the arguments that blame ultrasound examinations for autism boil down to the same sort of arguments used to blame vaccines for autism: The increase in autism diagnoses correlates with the increased use of prenatal ultrasound; i.e., confusing correlation with causation.Moreover, there is a confounder that the people who think ultrasound examinations cause fetal abnormalities, and it’s this. Complicated pregnancies usually require more ultrasound examinations, as the obstetrician keeps a much closer eye on them. Complicated pregnancies also have a higher probability of fetal death or neurological abnormalities. If that confounder isn’t carefully controlled for, of course there’s a correlation between the number of ultrasound examinations and adverse outcomes for the child!

The litany of things that Mountain Mama blames for her child’s autism balloons up to nine items, including Lortab/acetaminophen, antibiotics, Pitocin, high fructose corn syrup, C-section, other drugs, and, of course, vaccines, about which she writes:

People, I know what happened to my kid. I KNOW. I watched it. Ginger Taylor has been compiling studies for years that link vaccines to autism. That list has now reached over 60 studies.

Another word – Don’t bother making comments arguing about vaccines. I won’t post them. I am fully aware that there are children with autism who weren’t vaccinated. I am not suggesting that vaccines are SOLELY responsible for EVERY child’s autism. I KNOW, however, that they caused irreparable damage to my son’s immune system which ultimately led to his autism. There. Done.

In other words, don’t bother Mountain Mama with evidence. She don’t need no steeenkin’ evidence, other than that which she cherry picks. I do, however, find it hilarious that Mountain Mama would cite a list compiled by, of all people, Ginger Taylor as her “evidence.” If there’s a single person who embodies the arrogance of ignorance when it comes to vaccines, is a master of cherry picking studies, and thinks she knows more than real scientists, it’s Ms. Taylor, who is a true believer who attended Jenny McCarthy’s antivaccine “protest” a few years ago and believes that Andrew Wakefield is the victim of a “witch hunt.” Indeed, many of the studies she lists do not show what she thinks they show or have at best a tangential relationship to autism or no autism at all.

As for the other potential causes, Mountain Mama cites a Medical Hypotheses paper as evidence that there is a link between Augmentin and autism. As is frequently the case with articles in this vanity journal that is not peer-reviewed but is known for publishing all sorts of pseudoscientific nonsense such as HIV/AIDS denialism, antivaccine quackery, and more, the argument boils down to handwaving and speculation about biochemical mechanisms and confusing correlation with causation, along with an uncontrolled “study” allegedly linking Augmentin to autism. This was a “study” so bad that even Medical Hypotheses published a refutation of it that pointed out the nonsensical nature of the claim:

Her non-prospective, non-randomized, uncontrolled “study” of 206 autistic children found that members of her cohort had received 893 courses of amoxicillin/clavulanate and 1587 courses of other antibiotics. Without data on appropriately-matched control children, her data fail the “white shoe test”. Had she found that, of 206 autistic children, 205 wore shoes on a regular basis, and of those, 200 regularly wore a pair of white shoes before age one, would she suspect white shoes cause autism? Suppose further she found 125 students whose white shoes were fastened with Velcro® instead of shoelaces. Would she associate autism with Velcro®? Velcro® would certainly pass Fallon’s “timeline test”: there were very few Velcro® fastened shoes before the 1980s.

I’m so totally going to remember this analogy. My favorite one is the “CD analogy,” in which I point out that the rise in autism prevalence correlates very nicely with the introduction of CDs in 1985 and how CDs supplanted LPs as the most common medium on which music has been sold. Of course, then we have the difficulty of the last several years, during which MP3 files downloaded from various online services have become the preferred medium for consuming music, but I have a substitute: The “Internet” analogy, in which I point out that the rise in autism diagnoses also correlates very well with the explosion in Internet usage since the early 1990s. The analogies write themselves.

The evidence cited by Mountain Mama for everything else on which she blames her son’s autism is similarly weak. For instance, she also blames her child’s autism on her having to have a C-section to deliver him, citing a single non-peer-reviewed observation on a website as evidence why she feels that way. Now, there is some weak evidence that C-section deliveries might be associated with a higher risk of autism, but it’s pretty weak. Besides, what would Mountain Mama have done otherwise? By her own account, it sounds as though she really needed the emergency C-section.

In the end, the list goes on and on:

I can think of many more things I did wrong that I am sure contributed to my son’s health crisis. I will mention diet, toxic cookware, benzocaine teething gel and toxic building materials but won’t elaborate because at this point, common sense should dictate. I am writing this to try to hit the biggies that people really need to research to make better decisions than I did.

Is there anything Mountain Mama didn’t do to cause her son’s autism? Reading her confessional, it’s hard to think of any. After telling readers not to bother to try to urge her to let go and forgive herself but instead to send it around to everyone they know because:

No child should have to endure what mine has endured. No mother should ever have to experience the kind of torturous guilt I live with every day.

The mistakes I made were, by and large, recommended by healthcare professionals. That is no excuse. My son’s health was MY responsibility. I could choose to follow the recommendations or not. Even a small bit of research would have changed the outcome for my son. There are women, as we speak, who are on the way to the doctor for their second or third ultrasound. There are mothers dosing their babies with acetaminophen before their shots. There are expectant moms being hooked up to Pitocin drips. Some moms are administering unnecessary antibiotics for yet another ear infection and haven’t made the connection that their baby’s immune system is failing. There are also many, many mothers who are hearing the following words for the first time, “Your child has autism.” Help them.

Oddly enough, I agree, but not in the way Mountain Mama would probably want. No parent should have to live with such guilt. Unfortunately, in Mountain Mama’s case, the guilt is unnecessary, not based on any evidence, and destructive, both to her emotional well-being and to the health of her son. This is the price of the myth that vaccines cause autism. The guilt imposed on parents was bad enough when they believed in only one major cause of autism, vaccines. Now that the list of culprits has expanded in the wake of the discrediting of Andrew Wakefield and the studies suggesting a vaccine-autism link, we see in Mountain Mama an example of guilt due to everything she did before and after her son was born. While it might be a common human reaction to blame oneself when one’s child is not “normal” and has special needs, in the case of Mountain Mama and thousands of mothers like her, the price is a self-blame so intense that it informs everything she does. Unfortunately, it also leads her to the second price paid because of the myth of vaccine causation of autism.

The concept that vaccines cause autism has been thoroughly refuted from a scientific standpoint, but it lives on in “autism biomed” communities. Whether as a result of the increasing level of scientific evidence refuting the connection between vaccines and autism or for other reasons, the concept of seemingly everything under the sun (but especially vaccines!) as a cause for autism exacts a steep price, both from the psyches and pocketbooks of parents and from the health and well-being of autistic children, who are subjected to innumerable forms of quackery in the quest to “recover” them, as discussed above. This is the sort of price that drives parents to flit from dubious practitioner to dubious practitioner looking for the “cure” that will work. Two other recent examples of this were featured on—where else?—The Thinking Moms’ Revolution blog. In the first post, Denial Land, a woman going by the ‘nym Lionness expresses regret that she let her son have a hepatitis B vaccine and that she agreed to have a flu shot while pregnant, blaming herself for her son’s autism in much the same way that Mountain Mama did.

Then, in a post entitled The Things We Do For Love, a blogger going under the ‘nym Sunshine describes her quest last week to get her child to a new practitioner. She begins by describing walking into the airport one day last week at 2 PM for a flight to St. Louis but being told that the flight was canceled. I’m guessing that her flight’s cancellation most likely had something to do with the same snowstorm that hit Kansas and Missouri so hard it canceled a conference that I was scheduled to speak at, and almost stranded me in St. Joseph’s, MO. It also gave me a lovely taste of sitting several hours in the very crowded Kansas City International Airport as my flight home Friday was progressively delayed by half-hour increments and only got out about seven hours after it had originally been scheduled. If I had been starting out at home on such a journey, I’d simply have canceled. Not Sunshine. Instead of simply turning around and going home to reschedule her son’s appointment in St. Louis, which would have been the most sensible thing to do in such a weather-induced travel emergency, Sunshine finagled a flight through Detroit, which was delayed, causing her to miss her connection, ended up spending the night in Detroit with a “Thinker” (the name members of the “Thinking Moms’ Revolution” apparently call each other), and finally caught a plane that connected through Atlanta to go to St. Louis. At this point she:

Saw practitioner, drew blood, got new protocol, PAID BILL.

And then flew back home, concluding:

4 flights. 2673 miles. 30 hours start to finish. We were in St. Louis for a grand total of 6 hours.

This is what we do for recovery. For healing. For our beautiful kids. All in the name of love.

Remember, during this whole time she had an autistic boy in tow. One can only imagine the stress on the child. I have no doubt that Sunshine loves her son and thinks she was doing all this in the name of love, but I have to wonder how much of her actions are driven by guilt, the same sort of guilt that drives Mountain Mama. Running through four different airports and staying in the home of a stranger to try to get to St. Louis despite a snowstorm, all to see a new practitioner, who is no doubt no more science-based than any previous practitioners she’s taken her son to, are rather extreme actions.

She and her son continue to pay the price for a pseudoscientific belief not based in evidence, as do thousands of parents and autistic children.