jenny mccarthy wants your kid to get measles: autism, vaccines, and stupid idiots

Also has to do with the fact that we're wired in fucked up ways, and don't always process risk and cause & effect well.

It had to be something someone did to them, right?

The psychological concept underlying this is the locus of control. Patients and other interested people (family, friends, even doctors/health care providers) variously perceive a given medical condition to be mostly or wholly explained by internal or external forces. This applies to both diagnosis/etiology ("why did this happen to me?") and to prognosis/course ("how can I live with this?").

In our society, almost all diagnoses/etiologies are perceived as external. The pathophysiological models we have for disease and illness are almost wholly objective/external/physical: genetics, toxins, infections, inflammation, nutrition, degeneration, etc. There is some room for an internal locus in terms of the individual's (or group's) responsibility for modifiable risk factors (smoking or overeating or whatnot) -- but even then the actual disease (lung cancer or a heart attack or whatnot) is external to the person suffering from it and additional external factors are blamed concurrently (genetic susceptibility, or just plain bad luck). People do joke about an impulse to self-harm while smoking or otherwise behaving recklessly, but in my experience these are mostly young people who don't yet truly believe in their own mortality. The closest most people come to a death wish is a shrug of resigned indifference.

It's worth pointing out that the popular conception of almost all of the psychiatric diagnoses and etiologies are considered to be external to the people suffering from them. Depression is a serotonin deficiency, schizophrenia has something to do with dopamine, post-traumatic stress disorder is caused by seeing something deeply upsetting, etc. The exceptions are the pervasive developmental disorders (autism included) and the personality disorders. From this point alone you can infer how deeply committed most doctors -- especially psychiatrists -- are to an external locus of control in explaining health and disease in their patients. See the recent NYT article "when all else fails, blame the patient" for an example from a prominent psychiatrist who writes up a cheerfully unrealistic case report as if to suggest that patients labeled with personality disorders are simply under-treated for mood disorders and will do just fine if given additional medications, etc. In this case, internal locus = blaming the patient.

Turning to prognosis/course, however, an internal locus of control becomes more acceptable, even admirable. Literally every single story written in praise of a heroic patient (Lance Armstrong, or Terry Fox, or the guy who dictated a book by moving his eyes because he was otherwise "locked in"/paralyzed) finds the most admirable point in the story to be the patient's refusal to "let the disease slow him/her down". Sure, there are some horrible external realities, but hurrah, triumph of the human spirit, etc, etc. Great parody of this from the Onion:

https://www.youtube.com/watch?v=gwFvNYSCmhM

That's the model we like for disease: "why do bad things happen to good people?". Deviating from this picture is hard for anyone to tolerate, doctors and patients alike. Doctors are hesitant to suggest that a patient's condition is not clearly caused/explained by external factors -- which will almost certainly upset the patient and his/her allies, while the doctor runs the risk of being embarrassed professionally if he/she has overlooked an obvious cause for the patient's illness (diagnosing irritable bowel syndrome that eventually turns out to be celiac disease). Even when psychological factors are mentioned in terms of diagnosis, external factors ("stress") are usually blamed. Meanwhile, except in cases of obviously fatal disease (like in the Onion parody), everyone wants to maintain the impression (less charitably, the illusion), that the patient retains full control over his/her life despite this affliction.

Having said that, people vary widely in their ability/willingness to maintain an internal locus of control when dealing with adversity. Controlling for objective measures, there is a huge variance in the ability of patients to recover/maintain their lives during or after an illness. Some people experience a given condition to be too disabling to function normally with it, while others with the same condition do much better and seem to feel much less ill. Of course, the "same condition" in that sentence is a dodge -- every illness has a huge subjective, personal component (symptom experience, social context, sick roles available), so much so that it's hard to say that any 2 people actually have the same condition.

If you ask them, almost all patients will say they're doing the best they can under the circumstances of their illness. And we're inclined to believe them. We blame the disease if the patient is doing worse than expected (the guy who can't work for 3 months with a strained back muscle and normal MRI imaging has "a severe strain" and maybe eventually "chronic pain"), and credit the patient if the reverse is true (the woman with intractable rheumatoid arthritis who never misses a day of volunteer work has an "indomitable spirit"). It would be uncharitable, and unverifiable, to suggest otherwise.

One way to think of the medical profession is as a kind of police. We decide who's "really" sick, and who's not (Simpsons: "whoever has this stamp <INSANE> on his hand is insane"). Being "really" sick means having an external cause for illness that is not entirely the patient's fault. (This is important -- all ethical commitments aside, doctors and nurses do complain when taking care of patients' obviously self-induced conditions, like alcoholic cirrhosis or endocarditis from IV drug use). Once they get their hand "stamped", patients are free to withdraw from normal life into a sick role, as long as they are reasonably committed to doing their best to get better. From that point, patients are (variably) able to take on some responsibility for their recovery.

I know of one study that illustrates the point nicely. Patients with seizures were interviewed at length about their beliefs as to the influence of personal/psychological factors into their condition. Some of the patients had epileptic (neurological) seizures; the others had "pseudoseizures" (psychiatric/non-epileptic). The common thought among neurologists is that pseudoseizures are a conversion disorder, an expression of "stress" in the patient's life. Meanwhile epileptic seizures are thought to be almost completely external, albeit triggered in some cases by factors under the patient's control, like taking medications as prescribed, not getting drunk, and getting enough sleep.

Results: the epileptic group reported noticing a significant effect of their own psychological states on their seizures and condition in general. They believed they had more seizures when they were stressed or upset and fewer when they were doing better in general. In contrast, the patients diagnosed with psychogenic seizures denied any relationship between psychological factors and their non-neurological seizures. In other words, the epileptic patients had an external diagnosis but reported an internal locus of control, while the psychogenic patients were the opposite.

Which raises a couple of interesting questions. Does having an exaggeratedly external locus of control (denying any possibility that psychological factors could make you ill) "cause" illness? Note this is more or less the Freudian model for reaction formation. Or does the license/validation of an objective/external/"real" diagnosis allow people to recognize the role psychological factors play in their own lives (because they have permission to be sick, and don't have to lobby the system for privileges)?

Tying all this back to autism just briefly: autism is a condition that currently lacks a plausible external mechanism and that fairly recently was attributed to internal causes (internal to the family anyway, if not to the child himself). The idea that an illness has anything to do with intrinsic factors (who I am, not what happened to me) is often perceived as threatening/blaming, and it's not like we have much in the way of evidence that explains the cause of autism in that paradigm either. Stepping back from the search for an external cause of autism doesn't lead us anywhere in terms of prevention or cure.

So in the end it's understandable that parents of an autistic child who are not inclined to accept autism as intrinsic to the child ("that's just who he is") are driven to find an external cause/justification for what "happened". They are quick to emphasize that the child was completely normal before whatever point when the autism "happened". They are excited by any news of the discovery of a "cause" for autism. Even causes that do not provide hope for cure of established cases of autism (this is true of the vaccination theory) are exciting and emotionally validating.

The model of disease/illness I've outlined above may be useful for us as a society even if it's inaccurate in important ways (as I believe). It does produce significant collateral damage -- in this case a huge amount of emotion, expense and energy expended chasing a mirage, that the MMR jab causes autism.

I don't know if we can do better -- this model of disease may be the best we can do as a society, a useful illusion (insert Straussian reference here). Skeptic that I am, I'm not actually suggesting we should change course, let alone that we could if we wanted to. I'm just trying to explain why so many people are so consistently able to resist our scientific explanations for what went wrong.

Whoa

Barry Glassner's _The Culture of Fear_?

People do shift back and forth along a continuum of internal <-> external loci of control. Fear, almost by definition, is an experience of an external locus of control. Fear is a powerful motivator to "do something", even when that something has little benefit and significant downside. Sins of omission are worse than sins of commission, that kind of thing.

You can draw some nice societal parallels. After 9/11 everyone feels scared and powerless. Bush invades Iraq in part to give the country a sense of control and power again. (Thomas Friedman: "Suck on this!", the Ledeen doctrine "pick up a crappy little country and throw it against the wall").

The impulse is authoritarian. Alice Miller is good on this. So's Bob Altermeyer.

I'm still always just a little leery of listing too far back in the "this isn't a disease" direction - it's hard to get public funding for housing for any population whose pathology isn't strictly classified as a treatable disorder. "treatment" is sort of the middle-ground term between "cure" (crazytalk) and "assistance" (harder to fund).

Excellent point. Another job for the Disease Police. Of course a fair amount of serious medical research has far less benefit to the human condition than less scientific/technological approaches to caring for those in need.

Yeah, I was gunna ask; can you write a bit using this line of thinking on current American politics and the multiple pathologies on display lately?

kingfish that request is a little cheeky after Plasmon has already written more, and with more clarity, than you or i will manage in a month

plasmon! I am v glad you are on this board, and in the "profession," as it were.

i guess "shocked" isn't the word, but I am dismayed by many of my peers total disinterest in discussing, uh, "issues" like this.

yeah man Plasmon your posts are a joy. the profession will be richer for your diligence!

btw plz give a lunch lecture on external/internal loci of disease to my class thx

sort of not kidding btw

lol at mccarthys wikipedia

Most recently, she has written books about parenting, and has become an activist promoting the incorrect claims that vaccines cause autism[3] and that chelation therapy is effective against autism.

Very interesting posts, Plasmon. Thanks.

(Had not thought about it before but definitely v. familiar with impulse to find external causes for my own comparatively minor medical problems - most of them could be happily put down to "here is some genetic bad luck" and obviously that would be as out of my control as finding something more specific, but it is somehow a whole lot more reassuring to think "well I was fine until THIS happened to me / this is a result of xyz abnormality which is maybe because I was born premature", etc)

Thank you, Plasmon. I believe you've stated a lot of things that I've believed to be true, with more clarity than I'm capable of.

The idea of the medical system as a police, and with some conditions being more valid than others, is going to give me a lot to think about.

Wow, Plasmon, thanks. That's probably the best and least condescending explanation for the anti-vax mindset I have ever read.

(and yeah, on a personal note, you really contextualized a recent year-long go 'round I had with a specialist that led me to begrudgingly accept a (misguided and incorrect, it turns out) SICK stamp, which really did impact my behavior and mindset as far as settling in to a "sick role." I have been feeling kind of blerg about that whole situation and seeing a nice, clinical explanation for my behavior is helpful.)

I think one interesting wrinkle wrt autism and control, that I stabbed at earlier, is that it is ~not~ the patient him/herself seeking the external diagnosis for his/her condition, it's the parents. So you have a party external to the patient seeking an external explanation, while the patient himself may be indifferent to the etiology.

*bookmarks plasmon's post*

yeah I already emailed it to some med school pals

(hope that's ok plasmon!)

Seriously the #1 biggest disappointment with medical school I've had is that I came from the social sciences, but the social sciences are completely ignored at my school (and from what I have gathered, at most other schools), except for a class on Ethics that just totally misses the point and essentially can be boiled down to a handful of vague clinical scenarios and the theme of "you should not be a bad doctor". (The one enjoyable part of this is that inevitably everybody ends up posting Facebook messages of like "I HATE ETHICS" and then like their aunt or someone will be like "Umm...isn't it kind of important to be an ethical doctor?" and basically we all come across like amoral monsters.) Like, in grad school I had the opportunity to go to these Clinical Social Science Case Conferences, where usually one of the anthro MD/PhDs would present a patient they had treated, and how they attempted to conceptualize how the patient dealt with their illness and how they interacted with the various structures of medicine, and this was probably the one thing that made me be all "Wow I really would rather be an MD."

But THIS, man. I kind of want to rummage through PubMed or Google Scholar looking for an article to accompany this and assemble my finest team of nerds to discuss this, like I was able to do back in grad school.

protip 4 u C-L

I sat in on a bioethics consult two weeks ago here at the university hospital and it was like "oh thank god there are working physicians actually working through his stuff in a meaningful way." See if you can get a chance to attend one at yr hospital; really great stuff. I'd love to post even vague, tantalizing details but they'd be enough to triangulate the pt in this case, so no dice.

WTF: Bill Maher is an anti-vaccine nut?! And a germ denialist, to boot???

funny typo "his" haw

Hahaha I am trying to think about the right way to position myself into such a thing, since my way into the Bioethics Committee meetings would be through the lady who runs the Ethics course, and she makes me sad inside. The easiest thing to do would be to lie and be all "I am SO INTERESTED in Ethics class, I want to get more Ethics", even though I spent last week's lecture looking through an article in the Bulletin of Medical History, but I wonder if "Look, your class sucks, I am dying here, let me play at full speed" would work.

we've got a student comm on bioethics, which coordinates with the on site bioethics consultant. tho she is, I guess, our de facto "ethics" course director (it's actually rolled into a larger course that addresses cultural stuff, law, complementary med, etc. which is so sprawlin and half assed and sucky) so maybe it's the same in yr case.

we're actually setting it up so that we(comm members) get pages via google voice when there's a consult requested. neat!

Not nec trying to be cheeky w/ my request, it's just that Plasmon writes well and at length on this stuff, and with the proper ILX extended deconstructory style tha. Nabisco used to do on all the politickin' threads.

Plus, I'm happy that Alice Miller & Dr Bob Altenmeyer got mentioned, as I feel their stuff is bleedingly crucial to understanding WTF has been going on, and I wish more people would read & rep for them(other than me). Heh.

is there an ilx rolling med school thread?

yes!

ONE OF US ONE OF US ONE OF US

haha

plasmon sent your post to a couple of med students in my program - its really thoughtful. thanks.

link plz? xp

medical school

holy shit gbx are you still getting laid at this very moment?

he is a perpetual sex machine. md.

http://www.huffingtonpost.com/jenny-mccarthy/whos-afraid-of-the-truth_b_490918.html

the huffington post is generally sucky, but fuck them

way too much retarded stuff to even begin unpacking, but this is some great science -

The idea that vaccines are a primary cause of autism is not as crackpot as some might wish. Autism's 60-fold rise in 30 years matches a tripling of the US vaccine schedule.

it EXACTLY matches a 60-fold increase in American use of the term "shart"

the internet causes autism, as well as hispanic people

Who's afraid of the truth? Usually the people it would hurt the most.

~makes u think~

all my health care bros check out that "study" she linked to for a good laff

I do not think I will get laffs from it, this shit pisses me off so bad

My hatred for Jenny McCarthy has increased twenty-fold since she stopped appearing on Singled Out. Hence, MTV game shows caused autism.

I could use a laff

keithlaw I'm still not clear on how or why a woman who is known primarily for shedding her clothes is seen as an authority on immunology.

Jenny McCarthy’s honesty, humility and humor have enabled her to transcend the boundaries of her roles as comedian, actress, host, best-selling author and influential activist in the world of healing and preventing autism.

Shes claiming she's met "hundreds" of "recovered" autistics? WTF?

People dont recover from autism ffs, do they?

trayce, haven't you met hundreds of recovered gays?

Oh of course, yes, how silly of me.

Seriously, are parents just going "oh little oscar is really quiet and never behaves himself - HE HAS AUTISM!" or something.

vaccines aren't necessary! nobody gets measles any more!!

If you could vaccinate the whole world and no-one got measles for a generation or two, would measles come back if you stopped?

exactly! it's like unions, we just don't need em anymore