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

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Have to smile at the ILX-med group avoiding studying by posting here. I've got a formative OSCE in the morning and lack all motivation to review at this late hour so i'm similarly wasting time. A ~lot~ of time, see below ad nauseum.

gbx, I like your attempt to draw parallels between T1DM and ASD. Bbut it doesn't really map out: there is no known brain lesion that causes (or even is associated with) ASD in the way that pancreatic beta-cell destruction renders a patient diabetic. There isn't a plausible mechanism for a connection between a change in immune status brought on by vaccination and a change in the child's socialization/communication skills, so any account of ASD's pathophysiology that relies on autoimmunity is oh-so-much handwaving at this point.

There are lots of brain diseases that we're pretty sure are autoimmune in mechanism, if not in origin (ultimate causes are hard to find in medicine). Multiple sclerosis is the paradigm example of an autoimmune disease of the brain. Another autoimmune neurological disease, ADEM (acute disseminated encephalomyelitis), is similar to MS in several ways, but unlike MS has been associated with vaccination. Most cases of ADEM happen in school aged kids, so the initial MMR is rarely if ever to blame. ADEM also happens after viral infections, far more frequently than post-vaccination, and its thought that vaccination against viruses such as measles actually results in a net reduction of cases of ADEM.

As a side note, the strongest evidence for a neurological disease caused by a reaction to vaccination is Guillain-Barre syndrome (GBS). GBS does occur in kids, but again, mostly school aged. flu shots and "booster" shots are the most likely suspects. Again, GBS is far more often thought to be post-viral or post-bacterial (Campylobacter, Mycoplasma) than post-vaccination.

Another side note: we have a plausible mechanism for post-infectious GBS ("molecular mimicry": Campylobacter epitopes shared with peripheral nerve myelin, immune cells get confused and attack the peripheral nerves once the infection is cleared) but lack any great theory for how a flu shot triggers GBS or how a virus (or less often a vaccine) triggers ADEM.

If you want to draw parallels/contrasts between ASD and autoimmune diseases, I'd suggest you start with ADEM and GBS. I think they have very little in common. For instance, both ADEM and GBS are monophasic, while ASD is not.

The main point i'd like to make is about the nature of autism as a disease. This is tricky to explain. Most of what i want to say is a gloss on Ian Hacking, especially 'Mad Travellers' -- an excellent book that I'd recommend to anyone who found the WSJ article upthread (about the tendency of autism diagnoses in LA to cluster in wealthier zip codes) interesting.

ASD diagnoses have been increasing rapidly. The natural question is why.

One argument, which I think is misguided, is that an increasing number of children are suffering, essentially, some kind of brain damage (or at least brain altering pathology), which is extrinsic to them and changes irrevocably the natural course their lives would otherwise have taken (and this change = autism). The child (and the child's brain) is healthy and normal at point X, then something happens that causes damage (or at least change), so that the same child is autistic at point Y. In its simplest form, this model accommodates a few explanatory pathologies: infection, toxin, malnutrition, etc. You can make the model more sophisticated: the child might be genetically susceptible to whatever the external factor is, so that the same MMR jab given to the child and his sister leaves one autistic, the other unaffected. Or you can have a dynamic, evolving picture, with autoimmunity at the center: something triggers abnormal function of the autoimmune system which either damages the child/brain in a one-shot deal or alters the child/brain's function in an ongoing sense in conjunction with altered nutrition or harmful exposures or whatever.

I would argue that all of those models share a common extrinsicality to their explanation of a given child's diagnosis of autism. They are understandably hugely appealing for reasons i'll come back to after sketching an alternate model.

I would argue that we might consider autism-spectrum behaviors as intrinsic to the life of the particular child in whom they appear. Brain lesions do not explain autism, nor does any other obviously discernable physical state (like seizures, say). Any explanation of autism needs to bridge the bio-psycho-social: the child's brain and biology, the child's experience of living (much of which is often opaque to us given the autism we're trying to explain), and the social (familial, societal) context in which that occurs. Which is not to argue that (given the results in LA county) rich families "cause" autism. Or that modernity (2010 vs 1980) does either. But that what we're seeing in the increasing rates of diagnosed cases of ASD is an interaction between the culture, the times, the families and their ideas, the children and their experiences, and yes, the physiology and pathophysiology of the children and their developing brains.

You might say: why paint with such a broad brush? Is there any evidence that broader social factors cause autism? Any evidence that there is ~no~ specific biological cause of it?

Well, no. But as I explained briefly above we do have several good models of what happens to the brain when it gets "attacked" extrinsically by the immune system (and of course, from other causes as well). Autism, neurologically speaking, doesn't look anything like those diseases. I can't prove a negative (that there is not and never will be any known biological process sufficient to cause autism). And i can't "prove" the model of "intrinsic" ASD, in part because the model is over-determined for multiple causes ("everything" plays into it). I will point out here that, neurologically speaking, it is not at all controversial to argue that experiences modify the brain -- that the life lived by a particular person (say, "enriched" education on one hand, or "traumatic" experiences on the other) is capable of changing the structure and function of the brain, right down to the level of epigenetic factors that modify how and when a gene is expressed by neurons and their supporting cells. We don't know the details of how that happens in a particular person, but we know that real brain changes are happening to all of us, constantly, in response to real/perceived situations. So saying that autism is intrinsic in my sense is not the same as saying that it's imaginary, or "all in the mind", or whatever. Changes in the brain from lived experience are concrete and real, but (unfortunately for science) variable and individual and dynamic, so they're hard to reduce to a purely pathophysiological model (like infection or autoimmunity) that can explain multiple cases across an entire society.

My explanation is probably sloppy, I hope you can follow the gist. I'm not up to writing rigorously at this hour. Recommend again Ian Hacking's "Mad Travellers", which explored this vein in more depth than I can manage tonight.

Back to the original question: why are we diagnosing more and more kids with autism? The extrinsic explanations are appealing: maybe it's an infection, maybe kids are eating too much garbage or drinking from the wrong kind of plastic bottle, or maybe its the MMR, triggering some disordered autoimmunity.

One reason why the extrinsic explanations are appealing is that they lead to testable hypotheses (ie, actual science) and possible interventions. If we can find a murine retrovirus, we can start antivirals. If we can blame thimerosol we can reformulate the vaccines, or cut them out all together and whoops! -- lose herd immunity. While Jenny McCarthy and her minions are certainly anti-Science, they're actually quite scientific in another sense: they've got a cause-and-effect model for what causes autism and they're following through on it. Their absurdity and inhumanity stems from their refusal to consider contrary evidence, but insofar as they get to choose the inputs into their model (heavy on Wakefield, light on everything since), they're at least internally consistent.

Next we could consider a cartoon version of the bio-psycho-social model i suggested above. Many people argue that autism rates have largely been unchanged over the years, "but now doctors are better at recognizing it". That gives some credit to the times we live in and the people we are, so kudos from me. But it raises a difficult question: where were the autistic children in 1975? how about in 1891? Renaissance Florence? Ancient Greece? Underlying this analysis is the assumption that autism is pretty much unchanged over time and across places and cultures. Again, it implies that autism itself is caused by something ahistorical and a-cultural (infection or autoimmunity or what-have-you) and we've just finally discovered a test that reveals the truth that's been hiding in plain sight all these many centuries past.

But that's the thing: there is no objective, impersonal test for autism. We can go back and test the bones of the Romans for lead poisoning but we can't retroactively diagnose one of Bach's kids with autism. in fact, it's hard to even know what that would mean. So here's an even more difficult question for the "just better at recognizing it" crowd: what would it be like to be an autistic child in France in 1891? or the parent of a child with autism in Heian-period Japan? That's a very hard question to answer, as long as you stay in character of the times and the place: we don't know what autism meant to them, the concept would be foreign and anachronistic in that context. Not only the concept of autism itself but many related ideas -- childhood and development, appropriate behavior with the family and at school -- would be similarly foreign and anachronistic. So even though the language we use to define autism seems universal -- delay/difficulty in communication skills, impaired socialization -- it certainly bears the stamp of the time and place of its coinage.

The trouble with the intrinsic model of ASD is that it doesn't lead anywhere fast. If my argument holds, and ASD is the product of some immensely complex and multidirectional interaction of a child's brain, his lived experience and his social context, it doesn't lead to much in the way of prevention or cure. Symptomatic management would be the rule indefinitely, as it is today.

Another major problem with the intrinsic model is that it can come perilously close to blaming. To make it clear on my part: I'm absolutely not saying that autism is the "fault" of the children who are autistic, or their parents, or even our society at large. This isn't meant to be a jeremiad, either -- "look how sick we all are in our modern, toxic world". I think the forces involved are almost completely out of our control as individuals, including as parents (I have a toddler and one on the way). I think the appearance and evolution of new/different ways of being human (like autism) are emergent from the chaos and incredible complexity of our situation as self-aware, recursively constructed entities. It's not your fault, if you've got Asperger's, it's not Jenny McCarthy's fault that her son is autistic, it's not "society's fault", either.

But just because it's not someone's fault, and it's not imaginary, doesn't mean it's "caused" by some incredibly obscure pathophysiological process. That's not how socially constructed conditions work: they don't have a clearcut cause, no one's to blame. They just ~are~ part and parcel of life in our world in the year 2010.

Obviously this is not the usual medical model of understanding autism, or much else really. You could even say the idea that autism is socially constructed and therefore "intrinsic" is incommensurate with the medical approach, because it leads to no tests and no treatments. That's a fair point.

So why bother making this argument at such great length?

Two points: First, I would hope that we might see autism more in terms of other alternate/unusual ways of being than as a disease. I think that's more accurate -- I think autistics have more in common with hikikomori (shut-in Japanese teenagers) than patients with multiple sclerosis (which has its own social and psychological factors but is fundamentally a disease of a biological process damaging the brain). And i think its more humane -- what i've read from Temple Grandin and other high-functioning autistic people is that they themselves see their ASD condition as part of who they are, not as something afflicting them. Having said that, I recognize that the trend in medicine and in the popular mind's understanding of the medical world is precisely in the opposite direction -- I don't think HuffPost commenters are going to be giving up the quest for a magic bullet anytime soon.

Second, personal reasons. I'm almost done my training in Neurology, and i've found precious little in my studies to encourage this kind of thinking about people or diseases. Way back when I read a book of Oliver Sacks case studies (including an account of Temple Grandin) and decided neurology was the place where I would find both objective medical models of biological pathophysiology and subjective accounts from people living through the experiences of diseases of the brain from the inside. Turned out to be much more the former than the latter. My loss.

Anyway, sorry about the length. Thanks for your patience and interest if you've read this far.

Cricket riding a tumbleweed (Plasmon), Friday, 5 February 2010 09:20 (fourteen years ago) link

I'm skimming at work and there's plenty of reasonable and interesting stuff in yr post there but I think what you're describing is Asperger's or the "higher" functioning end of ASD. Kids with profound Autism are recognisably impaired far beyond potential social causes. I don't think we're gonna find 1 cause of ASD either, which is one reason we talk about a spectrum yeah? But it's important to remember that the deep end of the spectrum is a lot more severe than just oddity or lack of social imagination.

Oi'll show you da loife of da moind (Noodle Vague), Friday, 5 February 2010 10:30 (fourteen years ago) link

plasmon that was utterly absorbing, thank you

Tracer Hand, Friday, 5 February 2010 10:42 (fourteen years ago) link

Yeah Noodle's concern is mine - my experience in working with the severely autistic is that it doesn't seem correct to describe them as just people with a different way of thinking about things or of interfacing with the world; we're talking about profound self-care difficulties, communicative impairment (as vs. different styles of communication, which in milder Asperger's might be a fair descriptor)...I mean, there is a real possibility that the behaviors we see in difficult cases of autism really are just a very, very different lens through which the person is viewing the world, but I'm skeptical of that model, just because of the severity of the behavior & its impact on kids I worked with. it'd be hard to describe a lot of the more chaotic & destructive behaviors in terms of the response it might be seeking.

Lee Dorrian Gray (J0hn D.), Friday, 5 February 2010 10:45 (fourteen years ago) link

I guess in general I come across that severe autism alongside other disabilities and maybe that has an effect but if I remember correctly there are far more people whose ASD diagnosis falls at that end of the spectrum. There's a danger in conflating ASD with Asperger's, naturally enough cos it's kind of the "public face" of the spectrum, but we do need to remember that it's a v. broad spectrum and can be radically different at one end from the other.

Oi'll show you da loife of da moind (Noodle Vague), Friday, 5 February 2010 10:50 (fourteen years ago) link

isnt it possible to recognize that autism can be "another way of being in the world" without resorting to a model of disease?

max, Friday, 5 February 2010 12:30 (fourteen years ago) link

has anyone read about ramachandran/others work on autism and 'mirror neurons'? shit is dope

max, Friday, 5 February 2010 12:32 (fourteen years ago) link

If my argument holds, and ASD is the product of some immensely complex and multidirectional interaction of a child's brain, his lived experience and his social context

sounds like we're living in a greg bear novel ;_;

dyao, Friday, 5 February 2010 13:27 (fourteen years ago) link

isnt it possible to recognize that autism can be "another way of being in the world" without resorting to a model of disease?

"disorder" is the term, right, though you could argue (probably persuasively) that "disorder" is just the psych version of "disease." while I can dig that families/friends/interested parties might be coming from a "if people would look at this as just a difference, not a deficiency, it'd be a cooler world" standpoint, there's also a need for funding for both research & treatment (including housing; many autistic people are just too much to handle at a home level). You won't get much funding for something that you've gone out of your way to classify as a different way being.

I haven't read ramachandran but just reading a summary of the mirror neuron idea - I mean - this is what's tricky about talking about psych pathologies. the underlying pathology results in a person who thinks, feels, behaves differently. the person is not the pathology, and I'm guessing yr point is, "there's nothing 'wrong' with autistic people." but, I mean, this is a classic question with psych maladies: if we say there's "nothing wrong," then why are we devising treatments at all? at root is the way that people have a pretty animal horror of anything that codes as "unwell" I think & that's a whole ball of Levi-Strauss & Foucault iirc

Lee Dorrian Gray (J0hn D.), Friday, 5 February 2010 14:30 (fourteen years ago) link

i wasnt associating the ramachandran thing with the the being-in-the-world question for what its worth

max, Friday, 5 February 2010 14:36 (fourteen years ago) link

i recognize its a thorny question anyway and not one which i have a strong opinion about in any direction

max, Friday, 5 February 2010 14:37 (fourteen years ago) link

my point is more--are there specific medical/institutional/funding reasons why autism 'disorders' cant be considered a specific way of bitw that requires certain assistance but that doesnt need a 'cure'?

max, Friday, 5 February 2010 14:38 (fourteen years ago) link

my point is more--are there specific medical/institutional/funding reasons why autism 'disorders' cant be considered a specific way of bitw that requires certain assistance but that doesnt need a 'cure'?

you know actually a little google reveals I'm wrong about whether you can get funding for the more brainy-interactive side of autism research: http://www.researchautism.org/professionals/funded/index.asp

Lee Dorrian Gray (J0hn D.), Friday, 5 February 2010 14:50 (fourteen years ago) link

obv. I haven't read these studies but just given their breadth it looks like you can get funding for any number of approaches. 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).

Lee Dorrian Gray (J0hn D.), Friday, 5 February 2010 14:53 (fourteen years ago) link

btw I would like to say of the teachers working in the classrooms when I did my clinical rotations through a sheltered school for autistic kids: they are saints walking the earth, getting paid almost nothing to do some of the most challenging work there is

Lee Dorrian Gray (J0hn D.), Friday, 5 February 2010 14:55 (fourteen years ago) link

Kids with profound Autism are recognisably impaired far beyond potential social causes.

False dichotomy.

"Profound impairment" describes a state of (severely) impaired/altered brain function, recognizable in a social/personal context. Says nothing about cause. I want to suggest that psychological, social and cultural factors can cause (or at least are inseparable from whatever is causing) exactly that profound impairment, including the physical changes in the brain/person so affected.

Meanwhile, nothing about "social causes" should necessarily suggest that their effects are negligible. Consider teen suicide. Few would deny the relationship between psychological/cultural/societal factors and clusters of teen suicides (such as Canada's James Bay communities). Few would attempt to attribute suicidality to autoimmunity or toxic exposures or malnutrition. And few would blame the agency of the teen who kills herself ("it's not her fault"). And yet a 13 year old dead from her own hand is at least as "profoundly affected" as any autistic.

Cricket riding a tumbleweed (Plasmon), Friday, 5 February 2010 20:54 (fourteen years ago) link

A relative started hinting at a 'vaccine=autism' conspiracy yesterday, and when I got home the first thing I did was fire up this thread...not that I'm planning to go burn down her strawman but I am gobbling up as much information as I can now, to prepare for the time when it comes up in conversation.

<3 this thread so much. Will keep following along, though I'm pretty sure I shan't have much of intellectual value to contribute.

I knew med students would prove useful to me one day (lol, jk...plz put scalpels down)

VegemiteGrrrl, Monday, 8 February 2010 22:25 (fourteen years ago) link

Has anybody read Barry Glassner's _The Culture of Fear_? I've just finished the chapter where he does talked about vaccine scares during the 80s & 90s, and his point still holds:

A scare can continue long after its rightful expiration date so long as it has two things going for it: it has to tap into current cultural anxieties, and it has to have media-savvy advocates behind it.

Sex Sexual (kingfish), Tuesday, 9 February 2010 08:00 (fourteen years ago) link

http://twitter.com/JimCarrey

Slightly obsessed it seems.

Ned Trifle II, Wednesday, 10 February 2010 17:37 (fourteen years ago) link

And then you read the comments on the article he's drawing yr attention to...and you realise he's relatively sane.

Ned Trifle II, Wednesday, 10 February 2010 17:43 (fourteen years ago) link

What the fuck is wrong with these people???? Seriously. SERIOUSLY.

she is writing about love (Jenny), Wednesday, 10 February 2010 17:48 (fourteen years ago) link

Time on hands, not too bright, public platform.

Are you reelin' in the SBs? (Noodle Vague), Wednesday, 10 February 2010 17:49 (fourteen years ago) link

I'm calling it Jim Corr Syndrome.

Are you reelin' in the SBs? (Noodle Vague), Wednesday, 10 February 2010 17:49 (fourteen years ago) link

I had to do some Googling and wow. That guy is something else.

she is writing about love (Jenny), Wednesday, 10 February 2010 17:52 (fourteen years ago) link

I kind of wonder if part of the "vaccinations made our children ill" crowd is just in denial that their kids could have anything different or wrong about them. It had to be something someone did to them, right?

mh, Wednesday, 10 February 2010 20:45 (fourteen years ago) link

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.

Sex Sexual (kingfish), Wednesday, 10 February 2010 20:48 (fourteen years ago) link

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.

Cricket riding a tumbleweed (Plasmon), Thursday, 11 February 2010 10:08 (fourteen years ago) link

Whoa

Sex Sexual (kingfish), Thursday, 11 February 2010 10:10 (fourteen years ago) link

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.

Cricket riding a tumbleweed (Plasmon), Thursday, 11 February 2010 10:26 (fourteen years ago) link

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?

Sex Sexual (kingfish), Thursday, 11 February 2010 10:39 (fourteen years ago) link

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

Tracer Hand, Thursday, 11 February 2010 14:21 (fourteen years ago) link

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.

werewolf bar mitzvah of the xx (gbx), Thursday, 11 February 2010 15:02 (fourteen years ago) link

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

Lee Dorrian Gray (J0hn D.), Thursday, 11 February 2010 15:03 (fourteen years ago) link

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

werewolf bar mitzvah of the xx (gbx), Thursday, 11 February 2010 15:04 (fourteen years ago) link

sort of not kidding btw

werewolf bar mitzvah of the xx (gbx), Thursday, 11 February 2010 15:04 (fourteen years ago) link

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.

dyao, Thursday, 11 February 2010 15:14 (fourteen years ago) link

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)

canna kirk (a passing spacecadet), Thursday, 11 February 2010 15:16 (fourteen years ago) link

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.

mh, Thursday, 11 February 2010 15:37 (fourteen years ago) link

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.)

she is writing about love (Jenny), Thursday, 11 February 2010 16:35 (fourteen years ago) link

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.

werewolf bar mitzvah of the xx (gbx), Thursday, 11 February 2010 16:48 (fourteen years ago) link

*bookmarks plasmon's post*

vag gangsta (k3vin k.), Thursday, 11 February 2010 17:43 (fourteen years ago) link

yeah I already emailed it to some med school pals

(hope that's ok plasmon!)

werewolf bar mitzvah of the xx (gbx), Thursday, 11 February 2010 17:46 (fourteen years ago) link

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.

C-L, Thursday, 11 February 2010 18:44 (fourteen years ago) link

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.

werewolf bar mitzvah of the xx (gbx), Thursday, 11 February 2010 18:55 (fourteen years ago) link

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

throwbookatface (skygreenleopard), Thursday, 11 February 2010 18:56 (fourteen years ago) link

funny typo "his" haw

werewolf bar mitzvah of the xx (gbx), Thursday, 11 February 2010 18:56 (fourteen years ago) link

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.

C-L, Thursday, 11 February 2010 19:03 (fourteen years ago) link

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!

werewolf bar mitzvah of the xx (gbx), Thursday, 11 February 2010 19:08 (fourteen years ago) link

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.

Sex Sexual (kingfish), Thursday, 11 February 2010 21:57 (fourteen years ago) link

is there an ilx rolling med school thread?

dyao, Friday, 12 February 2010 00:55 (fourteen years ago) link


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