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Blame and magical thinking: The consequences of the autism “biomed” movement

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 gave my son autism”

Perhaps the most shocking of the two examples I saw last week was 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, right from the first paragraph, where 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? Mountain Mama is convinced that she and she alone is responsible for her son being autistic. She lives in fear of the day when her son learns of her role in making him autistic, the subtext clearly being 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 always neglect to mention or even consider, 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 very telling that Mountain Mama would use 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 relationship to 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 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. 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.

Another medical propaganda film, this time promoting “autism biomed” quackery

Last week, to add to the lovely specter of a new Stanislaw Burzynski movie approaching a mere week from tomorrow, I learned of an antivaccine movie currently in production. I actually learned of it based on an appeal from its producer for money to help her finish it. The “documentary” (in reality an infomercial) Canary Kids: A Film for Our Children, is being touted by the antivaccine quackery propagandists at the antivaccine crank blog Age of Autism. There’s even a trailer:

The makers of this film sure aren’t shy about promoting it—or making hyperbolic claims for it, either:

We live in a media age. It is time for a big media solution. It is time for a ground-breaking, paradigm-shifting film, made by an award-winning director, that will raise awareness in a meaningful and powerful way. A film that connects the dots for people. A film that shows how all children in this country are a part of the autism epidemic. A film that can be seen in theaters across the country.

I present to you, Canary Kids: A Film For Our Children. This is a documentary film that is being funded by us, the parents, the scientists, the writers, the advocates, the people who “get it,” who want everyone else to “get it” too. But we need your help.

I’m beginning to think that it’s a general rule among cranks, “brave maverick doctors,” and quacks that, if you can’t convince scientists and physicians based on high quality scientific and clinical trial evidence, then make a movie! Maybe I’ll call that Gorski’s Law. Oh, wait. I’ve called too many other postulates “Gorski’s Law,” such as “Gorski’s Law” as related to the Pharma Shill Gambit. Maybe I should publish a list of them, along with corollaries, kind of like the Ferengi Rules of Acquisition. Maybe I could call them “Gorski’s Rules of ‘Alternative’ Health.”

My egomaniacal desire for laws and postulates named after me that can be quoted in skeptical wikis aside (much like Mark Crislip’s desire for world-wide media dominance), this movie looks bad. Real bad. As bad as the latest Stanislaw Burzynski hagiography that’s going to be released direct to DVD in eight days. It’s hard to tell, because obviously the Canary movie isn’t done yet, and the purpose of this announcement is to hit up the faithful for money. Using a survey that found that people who watched Food, Inc. actually changed their behavior with respect to the sorts of food they purchased, the makers of this new antivaccine movie state explicitly what their goals are for this movie. They are, quite simply, to do grave damage to public health by undermining confidence in the vaccine program and to promote the quackiest of quackery to be used to “recover” autistic children:

So imagine the statistics coming out upon the release of Canary Kids:

People who watched Canary Kids were more likely to:

  • refuse vaccination and/or question their pediatricians about the safety and efficacy of vaccines
  • refuse antibiotics for their children’s ear infections or viral sore throats
  • eat organic whole foods
  • try homeopathy before pharmaceutical medications
  • replace toxic cleaning and personal care products with safe, green alternatives
  • write their Congressmen about toxic exposures in their communities

Now, that is the kind of change that can stop a health epidemic in its tracks.

No, that’s the kind of change that can cause a health epidemic by decreasing the number of children protected against vaccine-preventable diseases, thus degrading herd immunity and guaranteeing that the incidence of serious childhood illnesses will increase manyfold. It’s also the sort of change that could guarantee that children will die of diseases they don’t have to die from as parents choose quackery like homeopathy before they choose real medications.

This is the sort of change we don’t need.

Fortunately, I doubt that a movie that will obviously not be as slick as Food, Inc will be as influential. The message is also likely to be so heavy-handed that people will likely tune it out as an advertisement, which is what it will be, more or less, specifically an advertisement for autism biomed quackery. It is, however, interesting to me primarily because apparently the movie is going to codify the sorts of things that antivaccinationists have been saying, in which vaccines apparently cause pretty much every chronic disease known to children because, well, vaccines are evil in their eyes. Certainly no science links vaccines with these problems, but science was never the strong suit of people like the makers of this film.

In fact, this film will create a diagnosis that will boil down to “vaccines cause every chronic health problem children experience.” You think I’m joking. Take a look. The name of the condition, according to the film, is “almost autism.” What constitutes “almost autism”? Almost everything. Basically, the filmmakers are trying to suck all parents into believing that their children are part of the “autism epidemic” (that almost certainly is nothing of the sort), whether their children have autism or not. In service of this “rebranding,” they redefine GI problems, asthma, pretty much any behavioral problem, or any chronic problem as “not autism”; i.e., caused by the same things they believe to be causes of autism, including (of course) above all vaccines. The filmmakers are very blatant about admitting that their movie’s message is all about marketing:

What is going to make someone come out to see Canary Kids? Canary Kids is not just about autism. For too long, people not directly affected by autism have looked the other way, because they can’t relate to autism. They don’t know what it is, they don’t see how it impacts them. They may not come out to see a film about autism, but they will come out to see a film about their kids.

Most people don’t understand that the asthma epidemic is directly related to the autism epidemic or that the obesity epidemic is related to the autism epidemic. They don’t yet see that the same environmental factors (pharmaceuticals, vaccines, toxins, diet, etc.) that cause symptoms of autism in one child are the very same environmental factors that cause symptoms of asthma in another.

I don’t know if this tactic is evidence that these people are true believers or truly cynical. It’s probably both, although I don’t know which predominates. Basically, because their message isn’t resonating very much outside of their little collective of vaccine-autism true believers, they’ve decided that the way to reach out is to try to convince parents whose children have any sort of health issue at all that the evil vaccines done it and that their children have “almost autism.” In this, they seem to be appearing to redefine autism to the point of their definition being no definition at all other than any condition their fevered imaginations come to view as being caused by vaccines, regardless of how they do it.

But who is this group that is making this movie? We learn that it’s a nonprofit organization called Epidemic Answers, which until now I had never heard of before. It was formed by a woman named Beth Lambert, whom I had also never heard of before, which just goes to show that, no matter how much I think I know the players in the antivaccine movement, I never quite do. There’s always someone out there attacking vaccines or forming some organization or another whom I don’t hear about until for some reason he or she pops up on my radar. Then, when that happens, I try to find out who the person is and what she stands for.

In the case of Lambert, it’s easy. She bills herself as a former healthcare consultant to pharmaceutical and device manufacturers and teacher. It’s pretty clear that she has no formal medical training, because if she did she would certainly advertise that on her book (yes, she’s written a book), A Compromised Generation: The Epidemic of Chronic Illness in America’s Children. She wrote it with a dietitian named Vicki Kobliner who runs a company, Holcare Nutrition, that touts “gluten-free, dairy free, low allergen, GFCF, SCD, GAPS, FODMAPS, and other appropriate diets” to treat a whole host of conditions. She’s also into “functional” medicine:

Through established scientific research and laboratory testing, functional medicine recognizes that ADHD is associated with imbalances in the levels of micronutrients (or vitamins and minerals used by the body for basic functions), neurotransmitters (necessary brain chemicals), and excesses of heavy metals in the body, among other dysregulated processes. Through diagnostic laboratory testing, clinicians can evaluate a particular patient’s imbalances and look for what might have contributed to these imbalances. For instance, deficiencies in micronutrients in the body (such as zinc, selenium, magnesium) can be explained by looking at the diet and how effectively or ineffectively the body assimilates these nutrients into the gastrointestinal tract.

Sadly, functional medicine is pure pseudoscience, as Wally Sampson has explained. It postulates “imbalances” in hormones and neurotransmitters, oxidation-reduction, detoxification and biotransformation, immune function, inflammation, and cell structure. It’s all so vague that these “imbalances” could mean almost anything, and when practitioners of “functional medicine” refer to them they usually do. Perhaps the most famous practitioner of “functional medicine” is Mark Hyman, known for creating “Ultrawellness,” the very name of which should tell you pretty much all you need to know about functional medicine. Yes, it’s quackery, full of supplements, dietary manipulations, and “detoxification.” “Imbalances” must be measured through a battery of lab tests and corrected with whatever woo functional medicine practitioners can dream up.

So we know where Lambert and Kobliner are coming from, and it is not from anything resembling a science-based perspective. Not surprisingly, she believes that in addition to lifestyle and diet, vaccines and “toxins” from the environment are the root cause of autism and pretty much every other chronic conditions children can develop, as seen in this interview:

This interview is very telling. In it, Lambert describes having a child with what she calls “almost autism,” who had sensory, skin, allergy, and behavioral issues. The funny thing is, apparently her pediatrician didn’t agree that the child had all these problems, because Lambert complains that every time she took her child to the pediatrician he would tell her that her child was fine and developing on-target. One wonders if Lambert was unhappy that her child was only developing “on-target” and was not developing far ahead of his peers. Whatever the reason, Lambert went doctor shopping and found a “Defeat Autism Now!” (DAN!) doctor. As many readers know, DAN! was a name for a set of “autism biomed” quackery, and DAN! doctors were doctors who practice such quackery. They were listed on the registry of the antivaccine autism biomed group “Autism Research Institute,” but the DAN! classification was dropped after 2011, and the ARI no longer maintains a list of DAN! doctors.

And guess what? The DAN! doctor found stuff wrong with her child—a lot of stuff! (Funny how that works, isn’t it?) Completely unsurprisingly, the problems he found were the same as those that DAN! doctors always seem to find in autistic children. Lambert also apparently used an “integrative” physician and dietician to do “comprehensive gut healing protocols,” whatever that means. She basically assembled a team consisting of the DAN! doctor, a woo-loving dietician, a homotoxicologist, a naturopath, and other practitioners of unscientific “medicine.” In other words, she assembled a team of quacks and entrusted them with the care of herself and her children. I realize I’ve written a lot about naturopathy, which is a cornucopia of just about every form of quackery known to humans, but what is homotoxicology? It turns out that it’s a quack discipline concocted by a homeopath, Hans-Heinrich Reckeweg, who believed that disease was the body’s attempt to dispel “toxins” and that homeopathic remedies can be used to correct this.

So what is this movie about? Let’s take a look:

The Canary Kids Film Project will take 7 children with a diagnosis of autism, ADHD, asthma, chronic Lyme or some other amalgamation of chronic (environmentally-derived) symptoms and provide them with free healing and recovery services for the period of 18 months.

The film will document their recovery journey while simultaneously providing an exposé on the factors that contributed to their conditions in the first place. Most importantly, the film will connect the dots for people so that they understand that we are all a part of the autism epidemic: Asthma, ADHD, allergies, Lyme, OCD, SPD, LDs, diabetes, obesity, Crohn’s, colitis, rare autoimmune conditions . . . we are all affected.

So basically, Lambert will take seven children with “with a diagnosis of autism, ADHD, asthma, chronic Lyme or some other amalgamation of chronic (environmentally-derived) symptoms” and subject them to the the full Monty of autism biomed quackery, including “detoxification” and “supplementation” treatment in order to “heal” them. It is indeed pure propaganda. Propaganda for antivaccine views and autism biomed quackery aside, I can’t help but wonder if, in fact, the motivation to produce this film is more than just a desire to sell the world on the idea that vaccines cause autism and all sorts of other health problems (almost autism). It would appear to me that the motivation is primarily to sell autism quackery to a broader audience by making a movie that will be in essence a series of testimonials. Does anyone believe that all seven of these children won’t improve? Of course they will, because the outcome is preordained and there wouldn’t be a movie if they didn’t all (or at least five or six of them) appear to make considerable progress. What a bargain for the mere price of $250,000, which is what Lambert is asking for! Sadly, I have little doubt she’ll get it and ultimately make this movie. Fortunately, on the surface it looks as though it will be so blatant that most people outside the autism biomed bubble will recognize it for the propaganda that it will be.

The price continues to be paid

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 indeed a lot to go through.

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.

Posted in: Health Fraud, Neuroscience/Mental Health, Science and the Media, Vaccines

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34 thoughts on “Blame and magical thinking: The consequences of the autism “biomed” movement

  1. rmgw says:

    Appalling stuff, but so revelatory of how the human mind is prone to work. One detail: “There are also many, many mothers who are hearing the following words for the first time, “Your child has autism.” “….would any real doctor/developmental psychologist actually talk about autism as though it were measles? “Have” autism? I thought we were all at various points on an autistic spectrum, just as we are on various others. One more detail casting doubt on this strange person’s narrative.

  2. cedge20 says:

    Thank you for this post! I am the mother of a young man with autism/Asperger’s syndrome; over the years I have been involved with special education issues and have gotten to know a lot of parents with kids with various special education needs … including one of the “thinking moms.” Sigh. The post you discuss—the post itself was chilling enough, the comments even more so. They presented not only a litany of pseudoscience, but also a clear picture of the other horrendous stuff some of these parents put their kids through: restrictive diets, clay-based “detox” drinks, chelation, hyperbaric chambers, etc etc. I read this blog off and on (mostly to torture myself, I guess), and have read about them shoveling castor oil and coconut oil down their kids’ throats, putting them through acupuncture, craniosacral therapy, back-to-back 24/7 sessions and specialists, and then marveling at the resultant gastric distress and/or bad behavior … blamed on autism. The most frightening thing to me is that they feel their campaign is gaining strength; I do hope they’re as misled on this!

    My only slight quibble with this comprehensive and interesting post would be to prefer a person-first terminology (children with autism rather than autistic children).

    @rmgw, I’ve heard that point before (I think it might be Grinker who first introduced me to the term “a drop of the aut”); a couple of years ago I commented to another SBM post that “Elizabeth Moon, in Speed of Dark, has a great line: All babies are autistic; some grow out of it. I think this has some application to the study; you see this divergence of behavior at a certain point. It may correlate to other environmental factors, but they aren’t the cause of it.”

  3. lsimons says:

    You mentioned Food Inc a few times in your post. Do you have any columns or reviews of this film? I am a registered dietitian teaching nutrition at the college level, and this movie was recommended by someone whose credentials I respect. I’m interested in your viewpoint before I consider showing the film. Thank you

  4. DugganSC says:

    It’s worth mentioning that autism and vaccines aren’t the only cases that mothers will be convinced they ruined their kid’s lives. Pretty much any mother winds up feeling like they could have “done more” whether it was quitting their job to spend more time with their kid, taking up a job so that there’d be money to provide more opportunities, home-schooling their children to give them a better education, sending them off to a local school to get more socialization… and yes, half of it’s contradictory. It’s human psychology. We never feel like we’ve done enough for our children.

    The narative regarding the St. Louis trip also kind of reminds me of that one movie, ”Love and Other Drugs”, where the guy is so focused on “curing” the woman he loves, that he doesn’t realize he’s making her miserable by dragging her to every new therapy (and yes, chelation therapy got a shout-out there).

  5. windriven says:

    Mountain Mama seems to me* to be suffering from a weird variant of Munchausen by Proxy, inviting attention and pity for herself for having ’caused’ something for which no rational person could hold her accountable.

    It is one thing to cast about for explanations – no matter how improbable – and quite another to wear sack cloth and self-flagellate for a ‘sin’ one didn’t commit. Catholic theology has some strange features but I believe that ‘original sin’ is the only non-first-person transgression for which Catholics are culpable.

    *not qualified to diagnose any medical or psychological condition but too cynical not to believe that the lady doth protest too much.

  6. David Gorski says:

    @lsimons:

    I have not seen Food, Inc.; so I don’t know if it’s good, bad, or indifferent. I can’t speak for the rest of the crew.

  7. Jann Bellamy says:

    Sounds like “Canary Kids” was written, produced and directed by a team of naturopaths. From “The Textbook of Natural Medicine” (2013), p. 937:

    “No causitive agent has been found for this developmental disease [autism], although many theories abound, including vaccinations, a genetic link, nutritional deficiencies, and reactions to chemicals or other enviornmental factors.”

    I suppose with this expansive view of what a “theory” is, we might also say there is a “theory” that the earth is 6,000 years old.

  8. David Gorski says:

    Well, Beth Lambert did say that a naturopath and a practitioner practicing “homotoxicology” were part of her “health care team.”

  9. mousethatroared says:

    DugganSC “It’s human psychology. We never feel like we’ve done enough for our children.”

    And of course, if the kids don’t “turn out”…If they have learning, mental health and/or addiction issues some people will insist that it’s because the parent’s didn’t do x, y or z – and if all else fails, the problem will be that the parents did too much.

    And it’s not just parenting, it’s everything – the assumption that individuals have the power and are responsible for preventing bad things from happen enables us to live in a glorious fantasy were bad things don’t happen to conscientious people.

    I’m suspect that it’s the allure of this control fantasy (even in the face of all the evidence) that fuels much of the pseudoscience you see.

    It about as effective as knocking on wood or counting to an odd number before turning on the lights, but it’s a lot easier to fool yourself with pseudoscience.

    Sorry, I digress.

  10. Alia says:

    @windriven
    I come from a Catholic family, I learnt all the rules as a child. And you know what? Actually, refusing to vaccinate can be construed as a sin. Against 5th commandment. Because as a good Catholic you mustn’t kill, your own person included. So by extension you should not drink, should not smoke, should keep a balanced diet (which overlaps with the cardinal sin of gluttony, too). And you should follow your doctor’s advice to keep yourself in good health. Including taking prescribed meds and vaccinating. Guess that Mountain Mama haven’t read her catechism too closely, though.

  11. MTDoc says:

    @wndriven

    Yes! Exactly what I was thinking, except I couldn’t remember how to spell Munchausen.
    That, of course, is child abuse.

  12. mousethatroared says:

    Munchausen Syndrome by proxy?

    This is one of my favorite criteria in the indications for MSbP “A parent who appears to be unusually calm in the face of serious difficulties in their child’s medical course while being highly supportive and encouraging of the physician, or one who is angry, devalues staff, and demands further intervention, more procedures, second opinions, and transfers to other more sophisticated facilities.”

    So a parent who is either unusually calm or angry and demanding when their child is sick.

    Some thoughts
    http://www.jaapl.org/content/34/1/90.full

  13. windriven says:

    @Alia
    I was raised Catholic myself, though by the age of 13 or so I was moving with purpose toward atheism. Nonetheless, at my parents’ behest I attended parochial schools and by and large thank them for a decent primary and secondary education. You make a good point about the body-as-temple teaching, though that always seemed more theoretical than practical – at least in the community where I was raised.

    @MTDoc
    Child abuse is precisely what it is (IMHO). I have a strong libertarian impulse but it short circuits where children are concerned. Modern America treats even mild corporal punishment with contempt (and sometimes with the steel claw of the judicial system) but parents who fail to protect their children from horrific diseases are considered to be well within their parental rights. Go figure.

  14. windriven says:

    @mouse

    Yeah, its not a perfect fit; that’s why I characterized it as some ‘weird variant’. But it seems to me that some of the broad outlines are there, for example “one who is angry, devalues staff”… MtnMama was done wrong by a medical-industrial complex that forced her to poison her child. Oh woe is she.

  15. Chris says:

    mtr:

    So a parent who is either unusually calm or angry and demanding when their child is sick.

    I understand your concerns. But in this case there is there could be an argument based on the following quotes from Dr. Gorski:

    The funny thing is, apparently her pediatrician didn’t agree that the child had all these problems, because Lambert complains that every time she took her child to the pediatrician he would tell her that her child was fine and developing on-target. One wonders if Lambert was unhappy that her child was only developing “on-target” and was not developing far ahead of his peers. Whatever the reason, Lambert went doctor shopping and found a “Defeat Autism Now!” (DAN!) doctor…..

    … snip…

    And guess what? The DAN! doctor found stuff wrong with her child—a lot of stuff! (Funny how that works, isn’t it?)

    I personally don’t think it is normal to seek out someone to actually diagnose a child with something after being assured that child is perfectly fine. But then again, that is just me. My oldest has never been perfectly fine, and I would have rather not had to deal with all of the medical issues, ambulances, therapy hours and hospitals (note: this is the last week of cardiac rehab! Yippeee!).

  16. Alia says:

    @windriven
    When I was a kid and getting ready for my first communion, we all got little books to help us prepare for our first confession. They included a list of questions to help us decide what is a sin. And I very well remember a question that went like “Have I always followed my doctor’s advice?” And there were also questions about alcohol and cigarettes and other substance abuse. So at least over here at that time this point was stressed.

  17. Chris says:

    Blockquote fail… (and I hope I did not italicize the page), the last bit is not a quote:

    I personally don’t think it is normal to seek out someone to actually diagnose a child with something after being assured that child is perfectly fine. But then again, that is just me. My oldest has never been perfectly fine, and I would have rather not had to deal with all of the medical issues, ambulances, therapy hours and hospitals (note: this is the last week of cardiac rehab! Yippeee!).

  18. mousethatroared says:

    @windriven – I don’t mean to argue that MtnMama is well-adjusted, only offering a side note of skepticism on the diagnoses of MSbP. It is a rather interesting topic in and of itself – but rather OFF-topic. So I will leave it be before DG swats me with his ruler. ;)

  19. mousethatroared says:

    Chris – “I personally don’t think it is normal to seek out someone to actually diagnose a child with something after being assured that child is perfectly fine. But then again, that is just me.”

    I agree and disagree, I guess. Maybe it’s a matter of degrees. One of the boys in my son’s first speech preschool had been diagnosed with CP and autism. His mom said that she brought up concerns about his development at well-child visits after 12m and the pediatrician had reassured her. When he was not close to walking at age two and the doctor continued to reassure her, she decided to check with a second pediatrician and then was referred to specialists quickly.

    Also I’ve heard several parents of children with HL say that they had to get second opinions or insist on referrals when their child’s speech was delayed before the hearing loss was discovered…Although, that is becoming less common now with newborn testing.

    But these are cases where the child is clearly in the red flag area of standard milestones.

    On the other hand, with my daughter (first child) I was anxious about several thing…such as her not walking at 16 months and some periods of severe tantrums she had when she was younger. I did trust my pediatrician’s reassurances. I am very glad I did and also that there are resources such as Quackwatch. It would have been very easy for me to fall for the ATTACH therapies if not.

  20. Chris says:

    mtr, I understand. I remember the “wait and see” days. But the difference she went to a DAN! doctor, and not another pediatrician. Also, we are not told the age of the child.

    Our family doctor was perhaps a bit more vigilant about referring our son to a speech pathologist and pediatric neurologist because of his history of seizures.

  21. mousethatroared says:

    @Chris – yeah, I know. I guess I’m trying to find the line between normally cautious and overly anxious or paranoid behavior. I’m focusing away from the extreme represented by MtnMama because I think that many folks aren’t extreme. They may find themselves struggling with a difficult but nebulous concern about their child at first, then get caught up in a lot of misinformation….leading them down a mistaken path.

    Also, I’m probably focusing away from the MtnMama situation because it’s really sad and frustrating.

  22. Calli Arcale says:

    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,

    This is not a problem — you see, CDs and MP3 have one very important fundamental feature in common — they are digital! So it is digital recordings that cause autism, and now with digital video flowing through the air, surely we can expect a veritable tsunami of autism cases in the next five years!

    :-P

  23. David Gorski says:

    So you’re saying that Sirius-XM Satellite Radio causes autism? I’d almost believe that. :-)

  24. lizditz says:

    Thanks, Dr. Gorski, for this comprehensive overview and the problems with “Almost Autism”. My hope is that the film doesn’t get made, but I think my hopes are footless.

    Autism parent cedge20 wrote,

    My only slight quibble with this comprehensive and interesting post would be to prefer a person-first terminology (children with autism rather than autistic children).

    I must have a different circle of autistic friends and acquaintances, because to a person they strongly prefer “autistic” (sometimes capitalized) to “person with autism”. See, for example, Jim Sinclair’s 1999 article, Why I Dislike Person-First Language, or Lydia Brown at the Autistic Self-Advocacy Network, Identity-first language, published in 2011.

  25. DugganSC says:

    Admittedly, the number of children can make a difference too. I wonder if a large number of these children being overdiagnosed are either the first child (the parent has nothing to compare against other than their peer’s accounts of how their child is walking at 3 months and composing symphonies at year two) or second child (his older brother walked at 10 months. It’s 11 months now and Johnny just wants to scoot…). Or, as my mother used to joke (I come from a family with six children, as did my mother), “When your first child swallows a nickel, you rush them to the emergency room. Your sixth child swallows a nickel and you tell them it’s coming out of their allowance.” You learn not to panic.

    And yes, most mainstream Roman Catholic teachings guide against abusing one’s body. How to interpret that varies from person to person. As with most moral teachings, the Catholic doctrine of Conscience comes into play where you will ultimately be judged not only in whether you did the right thing, but also on whether you did what you believed was right (how the overlap works is a matter of theological debate, but the rub of it is that a “good” action is only good if it’s both the right thing to do and you believe it’s the right thing to do. It’s not an easy teaching, since it basically states that in cases where we disagree with the dogma, we aren’t serving God by following the dogma without conviction, but if we break with dogma and go our own path, we still run the risk of being wrong and being judged by that. Straight and narrow path. :)

  26. windriven says:

    @David Gorski

    “So you’re saying that Sirius-XM Satellite Radio causes autism?”

    Depends on who you’re listening to ;-)

  27. Zetetic says:

    Ginger Taylor: http://www.blogger.com/profile/04200286625735078479

    Impressive non-credentials!

  28. ksadrieh says:

    My advice to MountainMama: chromosomal microarray (http://www.ncbi.nlm.nih.gov/pubmed/23425232). At least you will have a 10-20% chance of really knowing what to blame…

  29. fishchick says:

    I’ve been educating people with autism for 11 years and have an 8 year old on the spectrum. I have worked with several “bio-med moms” and I believe that they genuinely want the best for their kids. However, at some point they internalized a message that their child is broken and can be fixed… If they find the right thing to do to make that magic happen. Imagine the pressure you’d feel if not only you thought you’d caused your child’s ASD but were also the one person that could fix it? It leads to bad things, like kids taking 30 plus supplements and day and being on diets so restrictive they have to be restrained from eating out of the trashcan after class snack. I wish there was someone “on our side” out there sharing better information, but alas nobody is going to make a living telling people their kids with autism are great.

    Personally, I am firmly convinced that my husband and I did cause our child’s autism, as our families are full of what they call the broad autism phenotype. However, she’s fantastic so it doesn’t keep me up nights. (Well, actually, it does, because she doesn’t sleep a lot.)

  30. elburto says:

    @Chris -

    I personally don’t think it is normal to seek out someone to actually diagnose a child with something after being assured that child is perfectly fine

    But…,but… if a child is neurotypical, able-bodied and mentally and physically healthy, how can you get that life-giving Martyr Mommy attention?

    They have all the “positives” of having a “broken” child, such as attention, unconditional positive regard from online support groups like AoA and TMR and from DAN! type quacks, and that sense of feeling special because they have magical intuition

    . All that comes without the negatives like the intense care and support needed for a child who’s ill or disabled, hospital visits, the fear that every hospital visit could be the last, or that dread every morning when opening the child’s bedroom door.

    There’s an interesting paper on “Munchausen’s by internet”* that has a section about this type of induced illness/factitious disorder inflicted on others.

    I was actually an online FoaF of Emily McDonald, who’s mentioned in the paper. There was suspicion that she’d actually induced two of her labours early in order to experience again the attention and support she got after her first or second pregnancy ended in her giving birth to an extremely premature “micropreemie”. She was thoroughly convinced that no jury could find a mother of sick children guilty. The great news is that Dakota was really thriving last time I heard about her.

    As a formerly sick non-NT kid who will not have children because of the risk of them inheriting one or more of my health problems, the thought of a mother who’s apparently actively disappointed that her child is healthy and NT, makes me want to throttle her.

    My partner and I would be the type of mothers who would probably take “Your child is totally healthy and well” as the signal to throw a huge party, celebrating our gratitude that our kid wouldn’t suffer like we have. That’s why these Martyr Mommies, competing over who’s got the sickest, most “damaged” child, actually make me cry, or occasionally throw up.

    Oh and YAY for the end of cardiac rehab. I know it must be a huuuge weight off your shoulders.

    @fishchick – Keep up the good work at home and at work. Your charges who aren’t lucky enough to have you as their mother at least get a positive, accepting person in their lives who treats their autism asjust a difference in how they experience the world, and not a disaster that means they’re defective and worthless until they magically become NT.

    * http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3510683/

  31. elburto says:

    As a formerly sick non-NT kid

    Bad phrasing. 6am and I’ve had an hour of sleep, and what I meant to say that I was a former child, like these kids are now, not a former sick/disabled and non-NT person!

    That would require more than magical thinking and realigning my chakras, sticking needles into me, or my mother’s combination of homeopathy and prayer.

  32. cedge20 says:

    @lizditz, thanks for the links! I found the Autistic Self-Advocacy Network piece very interesting. At some point I’ll have to ask my son which he prefers :)

  33. mousethatroared says:

    elburto – I sympathize with your thoughts, but just a point from the other side of the fence. Not all physically healthy NT children are easy to parent. One can have a completely healthy child with no diagnosable “condition” and still be dealing with some pretty extreme and even dangerous behaviors. While I am happy that I took my pediatrician’s reassurances that my daughter was “fine”, at the time, We genuinely needed help parenting my healthy NT daughter.

    Following the advice of various books on parenting recommended by our home study social worker and pediatrician failed or even seemed to make things worse. The two family counselors that our pediatrician gave me recommendations for (reluctantly, after warning that many other psychologist/psychiatrist teams in the area just prescribed Ritalin to all their patients) either didn’t return my calls or wouldn’t accept us due to having the wrong insurance. Luckily, between following some preschool discipline techniques and a book I came across by Douglas Riley*, I was able to manage the issues with my daughter, but I had to sort through plenty of useless and outright bad information. It seems to me that people who are struggling with similar issue are just the type who will be taken in by the idea of “Almost Autism”.

    *A book called “What Your Explosive Child is Trying to Tell You” which would probably take a lot of criticism from this group on it’s chapter on chemical sensitivities, but a couple of the other chapters genuinely helped us.

  34. pharmavixen says:

    @ Elburto: thanks for the link to that fascinating article on Munchausen by internet. Over the years, in the course of arguing with people on-line who insist that their illness was “cured” by some sCAM they are promoting, I have wondered how commonplace it is for people to fake illnesses, then claim to have been cured by some woo or other. Especially all the people who claim to have had “stage 4 cancer,” which was eradicated by high doses of vitamin C/prayer/ coffee enemas/chelation, whatever.

    On another site, I have been engaged in a sometimes heated discussion with a couple of people, one of whom insists her schizophrenia was cured by orthomolecular medicine. I believe the putative ex-schizophrenic never had schizophrenia in the first place – her symptoms sound more like a severe anxiety disorder, though I have not said so; I avoid making armchair diagnoses or getting too personal in general. The really interesting part of the discussion is the other participants, who have been virulent in their attacks on me for “silencing” the “lived experiences of a psychiatric survivor.” As I continue to protest that orthomolecular medicine has been found to be ineffective, citing links, protesting that all sorts of schizophrenics have tried vitamin B6 and it hasn’t worked, etc, the response has been a sort of group-think, where they are trying to shame and discredit me into leaving the discussion. Basically, people on-line don’t seem to be as interested in learning something as they are in being a part of a community, however wrong-headed.

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