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When compassion is outshined by ignorance

In a media-saturated society, public figures have a disproportionate influence on people’s understanding of science and medicine. Most patients see their doctor no more than a couple of times a year, but they watch TV, go online, or read a paper daily. In our newspapers and in our news rooms, dedicated science reporters are becoming vanishingly rare.   A wide range of news sources seep into this gap, but perhaps one of the most unfortunate is the “celebrity health expert”.

Uninformed statements from celebrities are nothing new, but when the queen of the antivaccination movement gets to call someone else stupid, that’s news.

Comedian Dennis Leary did little to advance the cause of humor or medical knowledge when he wrote this:

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you – yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

There is no “autism epidemic” as such, but there sure is a lot of ink spilled in ignorance, and Leary certainly seems to have a surfeit of that.  But never fear, Jenny McCarthy will come to the rescue of autistic folks everywhere.

“My fight isn’t with Denis Leary, my fight is with the government — a bigger fish to fry. So I’m still gonna work on the vaccines and I’m still working on pediatricians and Denis Leary can go hopefully be more educated by every mother that stops him from this day forward to give him a piece of their mind,” she said.

Jenny is right—Leary’s comments are stupid, hurtful, and wrong.  But Jenny is very, very wrong in choosing her battles.  I’d argue that Leary’s comments are an opportunity for public education. The story is getting a lot of press, which gives us a chance to explain to people what autism is (a serious neuro-developmental disease) and what it is not (a joke, a fake label, a government conspiracy, a complication of vaccination, a case of heavy metal poisoning).

Jenny’s continued fixed, false beliefs about autism would, in anyone else, be simply pitiable, but in a celebrity, they can be at least as harmful as Leary’s unfunny riff.  

“Evan [Jenny's son] was non-speaking, hands flapping in the corner and didn’t know anyone was in the room,” McCarthy told Us. “Look where he is now. I healed a vaccine injury. The [Centers for Disease Control] and American Academy of Pediatrics won’t endorse or even look at our treatment.”

McCarthy is the blind queen of the “mother warrior” hive.  Without the help of actual evidence, she is convinced that her son had a “vaccine injury”, that this injury caused autism, and that she was able to cure his autism with implausible treatments.  She further feels persecuted because her “breakthrough” is being ignored by two large organizations (the CDC and AAP) who have nothing to do with investigating the implausible medical claims of individuals.

Science-based medicine has a lot to offer in understanding health and disease.  Autism spectrum disorder is a diagnosis that probably encompasses many different pathologies and etiologies.  This makes the study of autism more difficult, but not impossible.  To study a disease, we need to be able to define a case.  This isn’t easy with autism, but we do have some operational definitions that can be used in order to study the disease.  If we miscategorize a patient, for example as having autism when they do not, it will confound our understanding.

In studying a treatment for a disease, we may have anecdotes that guide our ideas for research, and we may have models of similar diseases that help us develop plausible treatments to try.

But plausibility is a sine qua non.  There is no reason to think that treating “autism” with a particular diet should be effective.  There is no evidence that failing to vaccinate children prevents autism, nor is there any evidence that vaccinating children causes autism.  There is no evidence that chelation, hyperbaric oxygen, or any other bizarre and dangerous therapy is effective.  But more important, there is no reason to think that these “treatments” should work, and our resources should be focused elsewhere.

I don’t doubt that Jenny McCarthy is passionate, and perhaps compassionate (Dennis Leary not so much).  But compassion wielded blindly as a cudgel  ceases to be compassion.  When a celebrity uses her disproportionate societal power to spread her own brand of ignorance, it’s up to those of us who know better to tell the truth.  Given how many people read this blog vs. how many people watch TMZ, we’re going to have to spill a lot of e-ink to make a difference.

Posted in: Science and the Media, Vaccines

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13 thoughts on “When compassion is outshined by ignorance

  1. wertys says:

    Leary’s subsequent clarification reads better..

    He says in a statement: “…If they have (read the book), they missed the sections I thought made my feelings about autism very clear: that I not only support the current rational approaches to the diagnoses and treatment of real autism but have witnessed it firsthand while watching very dear old friends raise a functioning autistic child.”

    So again it’s just another media-driven stunt by the anti-vax douchebags seeking to portray themselves as righteous purveyors of absolute truth…

  2. Could you provide some evidence for autism being “neurodegenerative”? This is news to me.

    Yes, I’ve seen claims that autism is a neurodegenerative disease, but these have come from individuals promoting anti-scientific views, including that vaccines cause autism.

    Also, while autism is now often called a disease, this view is at odds with what is known about autism (see Muhle et al., 2004, e.g.). It is not a science-based view, any more than is the claim that autism is neurodegenerative.

  3. Peter Lipson says:

    Neurodegenerative is my fault, my typo.

  4. Peter Lipson says:

    OK, fixed that, and I checked other posts of mine to make sure it was a unique error—it apparently was.

    That being said, most of the time that I have encountered commenters who say “such and such isn’t a disease” I find them to be Scientology cultists or some sort of denialist. Given that you corrected my error, I assume you had a more subtle point to make.

  5. Sorry to let you down, but last I looked I’m a researcher in the field (autism). And Muhle et al. (2004) is published not by Scientology cultists but in the journal Pediatrics.

    Reducing autism to a disease process has not been very successful (across decades of research) in generating good predictions, much less in helping autistics. Nor has presuming that autistics are defective nonautistics (for just a few examples, models of autism based on damage to typical human brains, like agnosia models and the amnesia model, have been notable failures).

  6. Peter Lipson says:

    As I said, I suspected you had a more subtle point to make. It’s interesting, and while I don’t think I entirely agree, I think I understand your point.

  7. Michelle B says:

    Regarding M. Dawson’s comments: Are congenital defects diseases? They could possibly lead to diseases perhaps, but are they actually diseases in themselves? If autism is caused by delayed cerebral development, then wouldn’t autism be more a physical/mental/emotional state derived from anatomy/physiology present at birth?

    Anyways, Peter L has a lovely writing style, particularly appreciated: McCarthy is the blind queen of the “mother warrior” hive.

  8. Michelle B says:

    I did not meant to equate autism with congenital defective states either (though you could certainly conclude that I was from my rather sloppy earlier comment). I am just trying to wrap my head around what constitutes autism.

  9. “But compassion wielded blindly as a cudgel ceases to be compassion. When a celebrity uses her disproportionate societal power to spread her own brand of ignorance, it’s up to those of us who know better to tell the truth. Given how many people read this blog vs. how many people watch TMZ, we’re going to have to spill a lot of e-ink to make a difference.”

    Yes, yes!!! And it is so great to have doctors speaking out against her anti-science, anti-medicine position!

    Right before my son was born, I was very nearly taken in by this “zomg vax haz mercury” nonsense myself. It was from reading blogs written by doctors that I learned better!

  10. Anne B says:

    Good intentions coupled with ignorance (in Jenny’s case, ignorance of science) can result in some dumb statements. As the mother of an autistic child, I appreciate it when doctors take the time to publicly counteract some of the ill-informed things that people say about autism. I want to thank you, Dr. Lipson, for doing that.

    However, I have to say that your comment that “most of the time that I have encountered commenters who say ‘such and such isn’t a disease’ I find them to be Scientology cultists or some sort of denialist” is one of those dumb statements. Whether certain conditions should be classified as diseases is an important issue in the field of bioethics. For an example, see Jackie Scully’s essay in Nature, “What is a Disease?”

    Also, I think that if you were more well versed in autism research, you wouldn’t have made that statement as a way to trivialize a comment from Michelle Dawson, an autistic person who has co-authored a number of peer-reviewed publications on her groundbreaking research in the area of autistic cognition. She also recently represented herself and won the first lawsuit in Canada upholding the rights of autistic workers under the Canadian Human Rights Act, Dawson v. Canada Post. To belittle Michelle’s comment raising the legitimate question of whether autism is properly described as a disease is just, well, dumb.

    As Dr. Scully says in her article in Nature, we tend to think that we know what disease is without really having a definition for it. She discusses how what counts as a disease changes over time, with different conditions becoming pathologized (e.g., osteoporosis ) and de-pathologized (e.g., homosexuality), and some of the results of classifying a condition as a disease or disability. She concludes:

    “[S]cience never simply reflects cultural understandings; it simultaneously helps craft the definitions as well. Choices of such mundane things as disease models and diagnostic criteria, then, are not just about research agendas or commercial influences. At their heart they embody profound ethical debates about identity, human rights and the tolerance of difference.”

    The idea of autism as a disease is a fundamental premise of Jenny McCarthy’s approach to it, and it is by no means universally accepted by mainstream autism researchers, autistic people, or their families. An unthinking acceptance of that premise seems unwarranted to me.

  11. mandydax says:

    Thanks to wertys for that clarification. Taking something that Denis Leary says out of context can easily make him sound like the titular character of his famous song, but do remember he is a comedian and comedy often depends on hyperbole. I wouldn’t be surprised in the least if he ended the bit with something along the lines of

    Jenny you want to know why your kid won’t pay attention, why he doesn’t seem to know anyone is there? I have a theory. Maybe if parents today were more like parents when I was a kid, he’d get slapped up side the head. “Hey! I’m talking to you!”

    He’s not really known for being subtle much of the time. I think he has mellowed a bit with age, though. :)

  12. daedalus2u says:

    Anne, excellent comment.

    I would go even farther, I think that the autism spectrum disorders are not disorders at all, but rather part of the normal spectrum of human development due to stress in utero. The fundamental trade off between the quintessentially human characteristics, language and communication and tool making.

    Because the size of the maternal pelvis is limited, the size of the infant brain at birth is limited. The limited size of the infant brain, limits the cognitive processes that that brain can support. When times are good, competition will be with other humans, a well developed theory of mind to communicate with and manipulate those other humans is important. When times are hard, a well developed theory of reality is needed, to understand reality and so make the tools and other inventions needed to survive.

    The limited brain size at birth forced humans to evolve to optimize the neuroanatomy of the infant brain at birth to optimize the cognitive functions that infant is going to need to perform over its lifetime. Essentially every other organ is known to be epigenetically programmed in utero, it would be completely preposterous to assume the most important organ, the brain was not. That epigenetic programming is what causes what we call the autism spectrum disorders (other things too no doubt).

    I have just posted a blog on this,

    Theory of Mind vs. Theory of Reality: The tradeoff along the Autism Spectrum

    http://daedalus2u.blogspot.com/2008/10/theory-of-mind-vs-theory-of-reality.html

  13. The Blind Watchmaker says:

    What causes children to become “Indigo” children?

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