Myth, Religion, and Jenny McCarthy, False Prophet of Autism

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I'm teaching a course on Greek and Roman mythology this semester and last week we tackled this question:

Did the Greeks believe their myths?

That is indeed the title of a 1988 book by French historian Paul Veyne. He writes in his Introduction:

Did the Greeks believe in their mythology? The answer is difficult, for "believe" means so many things. Not everyone believed that Minos, after his death, continued being a judge in Hell or that Theseus fought the MInotaur, and they knew that poets "lie." However, their way of not believing these things is disturbing to us. For in the minds of the Greeks, Theseus had, nonetheless, existed. It was necessary only to "purify Myth by Reason" and refine the biography of Hercles' companion to its historic nugget...... The purification of myth by logos is not another episode in the eternal struggle between superstition and reason, dating from earliest times to the days of Voltaire and Renan, which would bring glory to the Greek spirit. Despite Nestle, myth and logos are not opposites, like truth and error.

The belief that vaccines or something in vaccines can be linked to autism has been called a myth" of autism. The question gets asked again and again (most recently by Orac in his post about framing and the "'empathy' gambit"): Why, in the face of clearly stated, well-supported evidence do people continue to believe that vaccines or mercury or, more recently, aluminum can "cause" autism? Why do people just keep on believing that there "must be a connection," when the evidence that they keep demanding is handed to them and painstakingly explained?

Dr. Paul Offit touches on some answers to these questions in chapter 10, "Science and Society," of Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure. One of the epigraphs to his book points to the religious undertone of belief among antivaccinationists; this is the epigraph, a quotation from Thomas Szasz:

When religion was strong and science weak, men mistook magic for medicine. Now, when science is strong and religion weak, men mistake medicine for magic.

It's a provocative statement though perhaps---as Orac wrote in his first post about Dr. Offit's book---not entirely accurate:

Actually, I would quibble about whether religion is actually weak these days. In this country, at least, fundamentalist religion, in particular fundamentalist Christianity, seems stronger than ever, permeating society so thoroughly that it is unthinkable that an atheist President will be elected in my lifetime. Elsewhere, fundamentalist Islam and other religions hold sway. Later in the book Dr. Offit makes the connection between religion and the antivaccine movement, which strikes me as a bit incongruous with this quote. However, the quote does characterize quite succinctly that what we are dealing with in the antivaccine movement is not science. Rather it is more akin to religion, because scientific evidence exonerating vaccines as a cause of autism rarely changes the minds of adherents to the antivaccine faith.

In his book, Dr. Offit points to a religious fervor behind the language of many antivaccinationists and to the zeal they devote to their cause, in the face of science and reason. An egregious example of this devotion is Generation Rescue, whose very name has religious overtones.

In Generation Rescue, Parent "Rescue Angels" are on a "mission" to "rescue" and "save" their children from the dread contagion of autism. The stated "mission" of Generation Rescue is "to discover and share the truth with families about the potential cause of their child's NDs[ [neurological disorders]. And consider this statement form their website about biomedical treatments:

Biomedical intervention for NDs is based on the belief [my emphasis] that the psychological symptoms of NDs are a product of the physical issues the child is experiencing and that addressing the physical issues will lead to an improvement in those psychological symptoms.

It's the "belief" of the band of Rescue Angels that something in the environment is the reason for what are called the "psychological symptoms of NDs" (the Generation Rescue website tries very hard not to use the word "autism"). "Belief" is what drives those who've drunk the anti-vaccine Kool-aid and joined the cult.

This sort of fervor is one reason that all the scientific studies in the world are not going to convince the "rabid," dyed-in-the-wool antivaccinationists. But it's not only those diehard "Rescue Angels" who are having some sort of effect, as suggested by the media's and even our culture's continued preoccupation with a supposed vaccine-autism link. Go to parent websites---especially websites for young children, such as Babble---and you'll find agonized discussion about whether or not to vaccinate, and are vaccines "safe."

Antivaccine beliefs are as "powerful as a religious conviction," as Dr. Offit writes in Autism's False Prophets (p. 212). He discusses Andrew Wakefield ("for [whom], the question of whether MMR caused autism had moved into the realm of faith," p. 212) and the Reverend Lisa Sykes, an associate pastor at the Welborne United Methodist Church in Richmond, Virginia, who believes her son's autism was caused by thimerosal in vaccines and whose "judicial advocacy crusade" against vaccines and their manufacturers has been documented by Kathleen Seidel on Neurodiversity. But there's another voice of religious conviction among the antivaccinationists who provides the second epigraph for Dr. Offit's book. That epigraph is:

I [started] Evan on vitaming B12 shots twice a week, and I was honestly blown away by what I saw. His speech doubled on the days I gave him the shots.
--Jenny McCarthy, on curing her son's autism

In her first autism book published in September of 2007, Louder Than Words: A Mother's Journey in Healing Autism, McCarthy described herself as praying to all manner of saints (including Kateri Tekakwitha) on learning of Evan's diagnosis. In her latest recent round of media appearances in conjunction with the publication of her book on "mother warriors," McCarthy has been saying that she talked to God:

When Evan was first diagnosed, Jenny says he stopped speaking and began ignoring the world around him. As with most autistic children, she says Evan's personality seemed to be locked inside him--and she was determined to help him break through. "I made a pact with God the day Evan got his autism diagnosis," she says. "I said, 'God, show me the way to heal my boy, and I will teach the world how I did it.'"

Jenny McCarthy, former Playboy Playmate, has undergone a conversion----a religious experience---in the effort to "heal" her child from autism and (following her words above, said on Oprah earlier this month). She has, accordingly, been given (I'm following what I gather to be her logic in her above statement) a "mission" of "teach[ing] the world" and thus takes her place beside Andrew Wakefield, Lisa Sykes, and a whole host of others as the false prophets of autism.

And the falsity of McCarthy's message is all too apparent. A year ago, when her first autism book appeared, McCarthy described her son as "recovered" from autism. More recently, her son has been described as in an "autism battle"; he has been simply described as "autistic." Is it possible that McCarthy has (I'm just going, again, by her words) tricked herself about the "recovery" of her child from autism?

Or maybe she knows full well what is and what isn't and is simply saying what the moment calls for: Back in May 2007, in discussing her soon-to-appear book, Louder Than Words, McCarthy did not say a word about autism or vaccines, and talked about crystals and indigo children.

Dr. Offit's title for his book----Autism's False Prophets---is only too fitting. The pages in chapter 10 in which he describes the "religious conviction" about a vaccines-autism in Andrew Wakefield and Lisa Sykes are just the start and I think, given the mention of religion and science, of magic and medicine, more extensive discussion of this topic could shed some light on the fervor with which antivaccinationists cling to their hypotheses, and because of which the public is preoccupied with vaccines and autism, rather than issues like school programs and schools for autistic children.

But from the looks of it, the cult of the antivaccinationists and their false prophets have been hard at work spreading their creed and it would be well of them to look beyond the tenets of their faith and see how thoroughly they've mixed up medicine and magic, myth and science, in a biomed elixir.


Image courtesy of t-dot-s-dot.

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Kristina,

Thanks for this great post. I've had some of these thoughts rattling around in my brain, but have not had the time to fully explore and make sense of them. Now I don't have to ;-)

One other comparison that comes to mind is the creation/evolution debate. Or, more accurately, the Intelligent Design vs. Evolution debate. In both cases (ID and anti-vac), it seems that a group is taking the answer they "know" to be true and trying to make the "science" fit their answer.

This morning I was at a lecture and heard this quote from Margaret Thatcher that seems somehow appropriate:

"Nothing is more obstinate than a fashionable consensus"

The anti-vax crowd seem to be so caught up in their collective delusion that nothing will snap them out of it.

Joe

I would suggest that this is a symptom of a social/cultural disease that has become epidemic in modern society! People want answers, not questions, and a subset of that, is to find someone or something to blame when there is no certainty.

Good thoughts Kristina.

more extensive discussion of this topic could shed some light on the fervor

For me that's a significant point; to discover, or at least to use that already known about why we form these biases and dogmatic beliefs, and the means in which the information is conveyed, in the interest of formulating better means of conveying accurate information and reframing these issues.

Is the situation always irretrievable? Is there any kind of an epiphany that motivates a "die-hard" to change a cherished belief? Or do you simply write off trying to persuade and look to those previously unexposed to the question? How much of it is tied into self-interest, previous investment in the belief, desire to impose control, and avoidance of cognitive dissonance?

(If I missed this in the book, other threads on framing, or other blogs or sites out there, please point me to it. Thanks.)

thanks much all---I've had these ideas circulating in my mind for some time and writing about Dr. Offit's book has helped me pull some things together. I'm meditating on that notion of a "fashionable consensus"...... McCarthy's first book is what you could call a conversion narrative; she's transformed herself (or says she has) from Playboy starlet to mother warrior on a mission from God for autism.

Very personally, I never like to think anyone would be stuck in die-hard" belief though the seemingly endless rounds of responding to comments from those who are really truly 110+% convinced that a vaccine cause their child to become autistic suggest otherwise. "Desire to impose control" and also desire to have simple clarity and some one cause, some one element that can be pointed to, and "avoidance of cognitive dissonance"-----those both have something to do with it; there just seems to be a very desperate attempt to say that something, and not one's genes, led to autism. I wonder if the effort of denying the facts has a lot to do with creating the fervor?

Orac has mentioned creationism and evolution in discussing vaccine-autism theory:

http://scienceblogs.com/insolence/2007/06/the_autism_omnibus_when_you_d…

I don't have a copy of Louder Than Words in front of me, but when I do (and when I get copies of the Mother Warrior book), it's the religious language I want to examine.

"The self-assured believer is a greater sinner in the eyes of God than the troubled disbeliever" -- Soren Kierkegaard.

O.K. I could not resist this thread on the religion of the anti-vax movement, in part, because I am what you guys would call a Creationist. Ahhh! Don't say it is so! Just kidding. Dr. Offit's statments regarding the religion of the anti-vax movement resonated with me, not because I feel that ALL Creationists are anti-vax, nor do I think Dr. Offit is suggesting such, but because I think the presumption here is that all who are anti-vax are Creationists or that their beliefs in the very least are akin to a religion. The statments in many of the posts while discussing AFP with regard to Creationists have caused me to think through much of the damage that Christians, in particular, do and have done historically under the guise of religious values. It saddens me that some in the scientific community do not see room for both faith and reason in these dialogues, because I feel that many will be alienated from such discussions who may need to hear the science disproving the anti-vax theories. Though some might adhere to the sheer religion behind their beliefs (I prefer Kristina's cult anology), I do think many Creationists not only respect science but believe science is, in effect, serving God's ultimate purpose in utilizing our free will and intellect to discover God through doubt and seeking truth in all matters. This being said, Kierkegaard's quote resonates in the matter of the faith behind not vaccinating versus the reason by which some of us chose to vaccinate. It is the self-assured believer who never doubts what he is told by a trusted friend, colleague, Bible study leader or pastor. That self-assured believer does not pose the questions necessary to find absolute truth. He drinks the red kool-aid of the prevalent religious hysteria and does not event think to be troubled with disbelief over the sheer magnitute of the beliefs being espoused and the propensity of those beliefs to harm others. Whereas, the troubled disbeliever finds Truth at the source of his disbelief. Jesus came to "give sight to the blind," and we must include Creationists in the debate so they might have sight and see Truth. Those who choose to drink the kool-aid will simply choose to drink kool-aid of the current cult and there is not much to be done with them. They have drunk from the trough of absolutes which are not so absolute. Let them drink their kool-aid. I know they have done considerable damage, but they will not ultimately prevail in this debate. Have a little faith.

By Ben's Mom (not verified) on 08 Oct 2008 #permalink

I would be interested in hearing what sort of a Creationist you are; you do not strike me as a close-minded sort of person at all, but a genuine seeker of the truth.

I like what you've said, Ben's Mom. I do not regard myself as a Creationist, though I am a Christian and I believe that God created the universe. I tend to consider the word "Creationist" to mean "believes the book of Genesis is meant to be taken literally". I don't take it literally. I regard Genesis as a collection of parables.

Your quote from Kirkegaard is a potent one; I'm going to add it to my quotelist. ;-) I think many of the high-ranking believers in any system (religious or otherwise) tend to fear doubt. They regard it as a weakness. On the plus side, this makes them appear far more certain, which is why people follow them. On the downside, by shying away from doubt or even demonizing it, they trap themselves into almost inevitably accepting an untruth as if it were true. After all, without doubt and without questions, how can we decide what to believe in?

You make a good point about unneccesarily shunning Creationists and such by creating a false equivalence between anti-vaxxers and Creationists. I find that many anti-vaxxers are not Creationists, and vice versa, so lumping them together may simply turn people off or make them defensive. That does no good.

I don't think we should just sit back and let them enjoy their kool-aid. We should speak our minds too. The free and open exchange of ideas is important. But perhaps you are right -- we are falling into the trap of seeing it as a conflict between nonsense and sense rather than as a bunch of weirdos on the fringe making a lot of noise. Maybe instead of focusing on debunking them, we should focus on spreading truth.

By Calli Arcale (not verified) on 09 Oct 2008 #permalink

In actuality, these days creationist tends to mean a person who does not accept the theory of evolution, almost always for religious reasons. Thus, you have "young earth" creationists who believe in the literal interpretation of Genesis, as well as "intelligent design" creationists, who accept the scientific consensus on the age of the earth and also accept that some evolution takes place but believe in "irreducible complexity," namely the mistaken belief that some biological structures are so complex that there is no way they could have evolved in a series of small steps from precursors under the influence of natural selection. In their view, God must have made those structures because evolution could not have.

Maybe instead of focusing on debunking them, we should focus on spreading truth.

I can't help seeing the value of this point of view. Sometimes it seems that the discussion devolves down into a myopic cage-match. Doesn't have to be an either-or, though. Do both.

As far as drawing parallels between creationists and the antivaxxers, perhaps that is interesting in terms of similarities of how belief systems might arise, the psychology and interpretations of science, but I believe that is about all that is relevant unless someone has some data showing that the two are necessarily connected. Without that, conflating the two groups together as necessarily having a connection seems a little to me like choosing to open up another front in a war, and not necessarily accurate or needed. First things first, one at a time, and pick the battles wisely.

Just my opinion.

I'm not sure religion is the right term, although I'm struggling to think of a better one. There's certainly the ideology of "vaccines cause autism" that is fervently believed in, as you illustrate here. I don't think it's just that, though - there's also a community and identity formed around it.

I wonder how strong that community and identity are in helping them block out science - people resist giving up either of them more strongly than they do in changing opinions. And to admit you were wrong and divorce yourself from such a community would be especially hard for the leaders of those groups like David Kirby. I don't know how to address this issue, but at this point it may be a better use of time than yet another study showing what we already know.

@strech

Perhaps simply "faith," even more than religion?

So many, or it seems that so many, have invested a great deal of energy and time, a great deal of themselves, in creating that "community and identity," and letting go of it would indeed mean losing a great deal of face. Perhaps that's why it seems more and more like there's a kind of cover-up (maybe not the right word) going on----the constant rebranding of autism, constantly moving the goalposts to find something else in vaccines (aluminum now), constantly trying to find a new angle to implicate the same agent, to hang on to the same creed.

Great post, Kristina!

I understand the comparison of antivaxxers with Creationists, with the whole rejection of science. But I think that Creationists do not get so "passionate" that they would threaten a researcher and his family. I feel the anti-abortion extremists are perhaps a more appropriate comparison with their "faith" and "passion" that is so extreme that many physicians and scientists have been threatened.

I have never had a Creationist in my face, losing control, turning purple with rage, spittle spewing out, while arguing their POV is the only correct one. It has only happened with the antiabortionist extremists and antivaxxers.

I feel the anti-abortion extremists are perhaps a more appropriate comparison with their "faith" and "passion" that is so extreme that many physicians and scientists have been threatened.

Just today my husband Jim reminded me about Operation Rescue.......

Callie, I have not even thought in these terms since college, i.e. Creationist, Evolutionist, faith, reason and imagination. Thank you, Orac, for defining the labels by which we try to understand the complexities behind belief systems. I am married to a theologian, but I do not play one on T.V. I disdain labels for many reasons, but one reason in particular is that extremists cause others to misconstrue certain labels based on the hatred behind their individual beliefs. I am absolutely horrified by the threats many have received by the anti-vax crowd, and the first thought I had upon reading about the threats aimed at Dr. Offit and his family were of the anti-abortion extremists. It is no wonder many in our society equate the terms "Evangelical" and "Christian" with extremism. It is no wonder the anti-vax crowd has been equated with Creationism, even though I do not believe for one minute that all who adhere to the anti-vax sentiment are Creationists. Could it be that all of this "religion" is actually "politics" under another guise? That would be my supposition. The concern I am primarily trying to articulate correlates to the polarization of any individual in any of these discussions. ASD and the acute social health implications of clusters of our population not vaccinating their children are non-discriminatory. At the end of the day, it does not matter if one is of a particular religious creed, no creed at all, wealthy, poor, educated, or not. What matters is getting the truth out to the masses and repeating that truth in the language of the audience at hand until the myth is dispelled. AFP is so timely, and I do not think there is any mishap in the timing of its release. This book and the intelligence behind some of the posts in this book club are finally a voice of reason in the midst of all the emotion behind the anti-vax debate. In AFP Chapter 10, Dr. Offit quotes philosopher Bertrand Russell stating: "Popular induction depends upon the emotional impact of the instances, not on their number." It is such a natural inclination for a parent to want someone or something to blame when their child is different than they might have expected. We are socially indoctrinated (pardon the religious entendre) to disdain differences and want conformity, and any divergence from what is perceived to be a predisposition for the typical is rejected. "Success, recognition, and conformity are the bywords of the modern world where everyone seems to crave the anesthetizing security of being identified with the majority" (Martin Luther King, Jr., Strength to Love, 1963). I disdain labels because I do not want to be identified with the majority. I do not need the anesthetizing security of being like everyone else, nor does my son. A hospice worker once told me that "denial is morphine for the soul."

By Ben's Mom (not verified) on 09 Oct 2008 #permalink

Excellent summation, Kristina. The comparison with creationism is quite apt, and also a bit ironic. I'd bet that most anti-vaxers think of themselves as much more enlightened than them crazy bible-thumpers, though their thought patterns are very similar. Some other commenters appear to have taken this post to mean that you think anti-vaxers are also creationists, but unless I misread you completely you're simply pointing out that both have a profound faith in their beliefs, and nothing is likely to change them.

It's been argued that a tendency toward religion is innate in the human race, and I think there's a lot of empirical evidence in favor of that stance. The percentage of my acquaintances who rejected the religion of their parents but know when Mercury will next go retrograde is rather high.

Ben's mom has a good point about threats of violence coming from anti-choicers rather than creationists. I can't recall any creationists being more threatening than saying "You're going to Hell." Hmmmm. Must muse on that a while.

One other comparison that comes to mind is the creation/evolution debate. Or, more accurately, the Intelligent Design vs. Evolution debate.

You had it right the first time, Brett.

I have never had a Creationist in my face, losing control, turning purple with rage, spittle spewing out, while arguing their POV is the only correct one. It has only happened with the antiabortionist extremists and antivaxxers.

Storkdok,
Funny. I had something similar happen to me too with some who hold strong anti-vax sentiments. 'Really quite disturbing. The faith I can understand, although I may not agree with the reasons for it--the vitriol is something else.

Does anyone have insights on that?

I'm glad that you all have the luxury of being 'scientific' around this'. For me it's much more personal. If you heard the way my son screamed for hours when as a six month old baby he got the Dpt shot, you might have your reservations about vaccines as well. Anecodotal evidence supports there's some type of connection between certain of the vaccines and autism. Ask yourself this...Why is it that we warn pregnant and nursing mothers to stay away from eating shellfish due to the mercury content, but it was okay for years to put thimeresol in the vaccines; injecting mercury directly into the tiny defenseless bodies of newborn babies?

Jennie McCarthy simply shares her story. I don't think that makes her any sort of false prophet. She's just a Mom who went through some tough experiences; experiences a lot of Mom's with autistic kids go through.

Try not to think of those who are leary of vaccines as propoganda spewing religious fanatics. Instead realize that you are facing just scared parents with no other answers. Parents who've been abandoned by the medical community. Parents who ask "If not vaccines...what else you got?"

Read Chapter 6. It is a different kind, and there is much more mercury in fish (and it is just not shellfish), and pediatric vaccines are now available without thimerosal.

Really, read the book.

"Jenny McCarthy simply shares her story. I don't think that makes her any sort of false prophet."

If it was as simple as 'sharing her story', then a lot of this fuss would not be happening. She's a parent who shares her story and then presents it as being the absolute truth regardless of what more experienced and qualified people, with vastly more data at thier disposal, have to say about it.

"Instead realize that you are facing just scared parents with no other answers. Parents who've been abandoned by the medical community. Parents who ask "If not vaccines...what else you got?""

Other way around. If you can't accept "We don't know enough yet" as an legitimate answer then you're the one who has abandoned the medical community* in order to fulfill your own need to know, running the risk of sacrificing your childs care needs along the way.

*which isn't even the whole of the mainstream autism treatment community by a hell of a long shot. It's amazing how many anti-vaxxers claim to have been 'abandoned' when they barely show basic knowledge of who they've supposedly abandoned by. As long as people keep running to altmeds then mainstream services will have trouble justifying keeping open, you'll have a repeat of the old scenario where services didn't exist at all. Mainstream medicine won't be able to help you then because there won't be the services to make a refferal to.

We've fought for the last 40+ years to get to this stage, please stop trying to f*ck it up for all of us.

Thanks so much Kristina for being such a great resource for the autism community. I've long admired your blog for its honesty and rationality, and was so interested to read your thoughts on Dr. Offit's book. I just finished it (a little late, I know) was so so surprised at all the background information about the controversy I didn't know. I consider myself pretty immersed in autism research and the sensitivities of the community, and I was really just blown away. I hope researchers and parents/people with autism can find some common ground in the need for research. There has been an increase in autism, beyond just more people being given the label, and the one thing we seem to have proved that's NOT behind it is vaccines. I don't think we'll ever move past this debate without a major research effort that can unlock the neurological basis of the disorder and, if they're out there, environmental triggers. And another thing everyone needs to rally behind- access to proven treatments for all children with autism, and more programs for adults with autism. So many parents live in fear of what will happen to their children when they're gone because there are so few programs for adults with autism, or programs that teach teenagers with severe autism to live independently. Thanks again Kristina for your blog and your thoughtful review, I hope you continue to give voice to those in the community who believe in sound research. And convert some of those that don't!

"Jenny McCarthy simply shares her story. I don't think that makes her any sort of false prophet."

If it was as simple as 'sharing her story', then a lot of this fuss would not be happening. She's a parent who shares her story and then presents it as being the absolute truth regardless of what more experienced and qualified people, with vastly more data at thier disposal, have to say about it.

"Instead realize that you are facing just scared parents with no other answers. Parents who've been abandoned by the medical community. Parents who ask "If not

the community, and I was really just blown away. I hope researchers and parents/people with autism can find some common ground in the need for research. There has been an increase in autism, beyond just more people being given the label, and the one thing we seem to have proved that's NOT behind it is vaccines. I don't think we'll ever move past this debate without a major research effort that can unlock the neurological basis of the disorder and, if they're out there, environmental triggers. And another thing everyone

Dr. Paul Offit is by no means an impartial judge of vaccines. He makes millions of dollars every year from his vaccine patents. Rev. Sykes took her case to the courts and her public officials where she was ignored due to the millions of dollars pharma gives to politicians. Her new book, Sacred Spark, gives verifiable proof via government documents and transcripts that mercury laced vaccines do cause autism. She took her case to the church because the church is not beholden to pharma money and therefore can expose the truth. Her activism isn't a religious crusade it is a scientific one. Continue to hide behind your millions of dollars and lies if you will but the verifiable truth is now out there and the United Methodist Church, millions of members strong, back her scientific research.

I can't help seeing the value of this point of view. Sometimes it seems that the discussion devolves down into a myopic cage-match. Doesn't have to be an either-or, though. Do both.