 |
Ich bin ein Autismer
May 10th, 2011
And maybe you are too.
OK, that’s an exaggeration. For both of us, I’m guessing. But a widely publicized study in the American Journal of Psychiatry indicates that the official prevalence rates for autism are much lower than they ought to be. They’re already pretty high–one in 110 kids, one in 70 boys, as the banner at the top of the Autism Speaks website proclaims. But the new numbers are really scary: one in 38, nearly three times higher.
This is a vexing problem. And skeptical as I am of psychiatric diagnostics, I don’t think the increasing rates of autism are due solely to a clever manufacturing and marketing campaign, which is more than I can say about some other diagnoses. For one thing, there’s no drug to drive the diagnostic juggernaut. For another, there isn’t much subtle about what the DSM-IV calls autistic disorder. Once you’ve seen one of these kids, shrieking and rocking, unable to talk, hard-pressed to respond to love, and and their shell-shocked, despairing parents, you’d have to be some kind of raving ideologue, or maybe just a Scientologist, to claim that the psychiatrists made up this one to line their pockets and feed their egos.
I suspect that the increase in autistic disorder is real and due to some kind of environmental hazard that is so diffuse that it’s hard to see, let alone to track. Free estrogens, heavy metals, too much flushed prozac (excreted and discarded) in the water supply, electromagnetic pollution from cell ophones and wi-fi, bad tv, who knows? But something is triggering this malfunction, or, as we used to say, a stress is turning a diathesis into a really bad disease.
So we can;’t blame this one on psychiatry. Or can we?
If you look at those CDC numbers (and I suggest you do; they’re surprisingly accessible, and the CDC provides simple explanations of their statistical charts and tables), you discover that they were derived by examining the records of kids already identified by doctors or teachers as having developmental problems. Most of them were already diagnosed with a developmental disorder; the CDC reviewed the notes, confirmed the autism diagnoses and added in the kids who had the symptoms but not the diagnoses and concluded that one in 110 of them qualified for a diagnosis along the autism spectrum.
Now, here’s the problem: the “autism spectrum.” At some point in the post-DSM-IV era, the decision was made to create an autism spectrum disorder (ASD) out of diagnoses ranging from Asperger Disorder to Autistic Disorder and taking in some other, mostly rare, DSM-IV diagnoses along the way, and to call it the autism spectrum. This move, which will be made official in the DSM-5, has the effect of declaring all these problems as variations on a theme, with the strong implication that they share some biochemical basis and differ primarily in severity and presentation rather than in essence. Scientifically, politically, and philosophically, this is a rat’s nest, which I won’t go into here, except to say that by creating the spectrum, psychiatrists (and neurologists) are claiming much more than they have proved. Which means that they set the agenda with what they think (and maybe hope) is the case, and subsequent research that uses the spectrum can only confirm that it exists.
Among the implications of the spectrum, however, is the fact that epidemiological research using it, like the new AJP study, will count kids with Asperger Syndrome as “autistic.” There is no doubt that this will increase prevalence rates, but it is still an open question by how much. Previous studies, like the CDC’s, just don’t provide an answer.
But the new research is clear on this question. Rather than looking only at kids already identified, this study looked at 36,800 students in a single Korean city in a single school year. Three hundred of the kids were already identified as special needs, and thus as having a high probability for a diagnosis; the rest were just your average kids on the street minding their own business and un-sick enough not to have come to the attention of the authorities. But after the numbers were crunched, the researchers concluded that many of them were evidently harboring a serious mental illness without knowing it: 2.64 percent of the school age population of Goyang City, Korea, is “on the spectrum,” or as Autism Speak(a cosponsor of the study) is sure to proclaim soon, one in 38 kids is autistic.
Now that is a stunning number, especially when you consider that only one in 133 (three-quarters of a percentage point) of the population had already been identified as autistic. In other words, if you go out looking for trouble, you’ll find it in one in 38 kids. But if you wait for trouble to come to you, only one in 133 will turn out to have the kind of trouble you’re interested in. Now that could be because of reluctance among parents (the researchers note among “cultural considerations” the fact that “autism impugns the child’s lineage on both sides and threatens the marriage prospects of unaffected relatives”) or ignorance or something. But it’s also possible (I would say likely) that autistic disorder (as opposed to the other disorders on the spectrum), the kind of suffering that is bound to come to notice, is relatively rare.
Some other numbers bear this out. The overall rate of those “other ASDs” was roughly twice that of the autistic disorders. One in 106 of the overall population had autistic disorder; one in 58 had another ASD, and presumably many, if not most, of these were Asperger cases. To put it another way, out of any thousand of these children, 9 had autistic disorder and seventeen had another ASD. Now this could simply reflect the fact that Asperger’s is more common than autistic disorder, which is undoubtedly true. But that’s the point. Maybe it isn’t such a good idea to fold a muchlarger category into a smaller one, and then to use the name of the smaller (and more severe) disorder for both of them.
Not that it’s a good thing that one out of every 58 kids qualifies for an Asperger diagnosis and one in 106 has autistic disorder. But it’s at least a little less frightening than the idea that one in 38 is autistic, especially when the commonly held meaning of “autism,” accurate or not, is the head-banging, shit-throwing, totally regressed nightmare child, while the head of Facebook is widely thought of as an “Aspie.” And this is exactly the kind of problem that jiggering diagnoses can lead to: increased prevalence that can’t be easily dimissed as a statistical artifact, that indeed seems plausible until you engage in some deconstruction of the terms of the research. A study like these needs a hermeneutician as much as a statistician.
And one other thing: What are we to make of the fact that the prevalence of autistic disorder in the Korean study–one in 106–is so close to the CDC’s prevalence figure for autism (1 in 110)? Could it be that the CDC numbers, by relying on cases thast have already come to the attention of doctors or teachers, inadvertently filter out most of those “other ASD” cases? Is it possible that what the Korean study really shows is what happens when a diagnosis is actually applied to a population, and that the answer says more about the diagnosis than the population?
2 Comments »
Don’t Try This At Home
May 10th, 2011
Well, actually, that’s pretty much the only place you can adopt a kid. But if you’re thinking about adopting, or if you’re just curious about it, or if you want to read a story about, among other things, greasy spoons, social workers, my choices in automobiles, my testicles, my wife’s fallopian tubes, our sex life, hospitals, and my sartorial tastes, then this is the one for you. I wrote it a while back and it ran in Tin House and was anthologized in their Cooking and Stealing anthology, which featured much good writing and thus worth the three bucks amazon is now charging for it. But my contribution is here for your downloading pleasure.
http://www.garygreenbergonline.com/media/littlebrownshack.pdf
No Comments »
this just in, a couple of months later
May 6th, 2011
A review I wrote for the Nation of some books about how the Internet is ruining us.
http://www.thenation.com/article/159279/my-monster-my-self-nicholas-carr-and-william-powers
And coming up, also in the proletariatti’s house organ, a review of David Brooks’s latest. You can read it here second.
No Comments »
Is there anything serotonin can’t do?
May 6th, 2011
My blog friend Frank in Florida writes
No doubt you’ve seen the latest humoral news in the New York _Times_, where we’re advised that “it’s worth listening to serotonin no matter what it has to say.” Would love to see you weigh in on your blog. Here’s the link:
http://www.nytimes.com/2011/05/03/science/03angier.html
Actually, I hadn’t seen it. But now I have. And someone has made the mistake of encouraging me. So.
First, let me say that Natalie Angier is one of my favorite science writers. And that’s not only because she selected one of my articles for inclusion in one of those Best American anthologies. It’s also because she writes sentences like this:
Other researchers have determined that serotonin in the gut helps orchestrate the remodeling of bone, the lifelong buildup and breakdown of osteoclasts and osteoblasts that make the human skeleton such an exciting organ system to own.
I mean, talk about making a silk purse out of a sow’s ear, or, in this case iambic pentameter out of clangy biojargon. Which is nothing compared to what she has done for the vagina (not that the vagina isn’t already a silk purse or anything). And it (the passage, not the vagina) is funny too.
But I see Frank’s point. It’s not that the article is inaccurate, although this also nicely wrought sentence
Five years later, scientists found serotonin in brain extracts as well, and they soon learned that the recently invented hallucinogenic drug lysergic acid diethylamide worked by tapping into the brain’s serotonin system and that if you took too much LSD you might end up wearing hair garlands and overusing the word “wow.”
as everyone who’s memorized my book knows, is not quite accurate. LSD was discovered pretty much when serotonin was (late 40s, although serotonin had actually been identified in the 30s), and the connection was made not by figuring out that LSD “tapped into the serotonin system” but by recognizing that LSD had a molecular structure related to serotonin (both are tryptamines; LSD contains within it the serotonin molecule) and deducing that its consciousness-altering effects must be somehow related to the fact that there is serotonin in the brain. But whatever. It’s a nice, cracky sentence, and it manages to convey a little Angier bio (as she does later when she talks about her psychiatrist) even as it gets across the rudiments.
So the article didn’t quite get under my skin like it evidently did Frank’s. Maybe that’s because my underskin is already full up with all the breathless neurotalk out there, the latest fMRI finding that proves that our mental life isn’t just a figment of our imaginations. But I see his point. Like here
For all the intricacy, serotonin in the brain has a basic personality. “It’s a molecule involved in helping people cope with adversity, to not lose it, to keep going and try to sort everything out,” said Philip J. Cowen, a serotonin expert at Oxford University and the Medical Research Council. In the fine phrase of his Manchester University colleague Bill Deakin, “it’s the ‘Don’t panic yet’ neurotransmitter,” said Dr. Cowen. Given serotonin’s job description, disturbances in the system can contribute to depression, anxiety, panic attacksand mental calcification, an inability to see the world anew — at least in otherwise vulnerable people.
A basic personality? A job description? A fine phrase? It’s one thing to be breezy and entertaining when dealing with eyeglazing content, and in the process informing people of something interesting and maybe even important about themselves and their world. It’s another entirely to deepen misunderstanding by, to borrow from Dr. Hyman, committing the error of reification. It’s a molecule, Natalie. Not a personal assistant. Its “involvement” (and someday I’ll get to the evasions neuroscientists commit in their language, the way they cover up their lack of understanding of just exactly how all those molecular events give us conscious experience by using imprecise verbs that still somehow manage to convey a linear causality) in our conscious lives is no smarter or more personal than, say, bacteria’s “involvement” in digesting our food.
One could as easily say, “We use serotonin to keep ourselves calm.” Of course, there would be a metaphysics involved, as blog friend Matthew recently reminded me. And indeed there is some kind of dualism lurking in that statement. But, and this is my point, there is metaphysics at work in the scientists’ formulation as well, one that I find more distasteful than my own, as it cancels out human agency and replaces it with neuromyth. And Angier makes like the question of which myth to believe doesn’t even exist.
Actually, this reverence for serotonin reminds me of somethign Homer Simpson once said. It’s in the monorail episode, just after he saves Springfield by lassoing the runaway train to a huge donut sign. “Is there anything a donut can’t do?” he asks.
No Comments »
Finally someone is really listening to Prozac
February 10th, 2011
One of the things that seems to really get psychiatrists’ dander up about my book is my contention that the invention of antidepressants leads to the invention of depression. They argue back, sometimes impolitely, that antidepressants were invented by doctors seeking to treat a common and under-recognized scourge that has afflicted people in all times and places. But in a recent study, researchers inadvertently support my hypothesis by proposing precisely what I suggest: that psychiatric diagnosis be changed to reflect what drugs are doing.
First, a little recap. While it appears to be true that some portion of the population (I would say a much smaller portion than falls under the diagnostic criteria for major depression, dysthymia, adjustment disorder, etc.) suffer from the “inexplicable unhappiness” that Hippocrates observed, it is also true that antidepressants weren’t created to treat those people. Rather, as my book recites in painful detail, they were discovered when people took new drugs and unexpectedly felt better than well. The allure of such drugs is obvious. What is less obvious is how to market them in a society reluctant to let people simply take drugs to feel better—a problem exacerbated by the Marsilid scandal of the 1950s (an early “antidepressant” that killed a few people and came to be denounced as a “pep pill”) and by the Valium/Xanax scandals of the late 1960s and early 1970s, in which public scolds, some of them Congressmen, railed against the widespread use of minor tranquilizers and denounced users as little better than potsmokers (and their doctors as drug pushers). As a result, for many years, antidepressants wandered around in the pharmaceutical wilderness, a treatment in search of a disease.
When various historical forces—the FDA’s insistence that drugs be specified for particular diseases, the American Psychiatric Association’s turn to a descriptive psychiatry, Nixon’s War on Drugs, the invention of SSRIs—converged to anoint depression as that disease, antidepressants, as we all know, hit it huge, and suddenly there was an epidemic of depression. But there remained a problem for the drug companies: as I’ve described here, the connection between the drug and the disease has always been tentative and contingent. The poor performance of antidepressants in clinical trials is probably in part the result of trying measure them with a test (the Hamilton Depression Rating Scale) that is poorly matched to the actual effects of the drug. Sticking with the Hamilton bolsters the case that these drugs are antidepressant medication, but at the high cost of amassing data indicating that the drugs are not effective—data once suppressed but now embarrassingly public.
The predictable backlash—claims that antidepressants are simply tricked out placebos—misses the real point, which is that researchers have been so intent on insisting that the drugs cure depression, and cooking the books accordingly, that we don’t have any systematic understanding of what antidepressants actually do. But that doesn’t mean there isn’t an emerging consensus. Consider the data recently mined by a group of Canadian scientists. They looked at an epidemiological study of over 20 thousand people, of whom 1441 had been prescribed antidepressants in the past year. Only 718 of them, fewer than half, met the criteria for a psychiatric diagnosis within a year of their prescription. And one quarter of them didn’t qualify for a diagnosis at any point in their lives. These results correspond nicely with those of a group of French data miners. They looked at insurance company records and determined that 53 percent of patients who received antidepressant prescriptions had not been diagnosed with any of a long list of disorders for which antidepressants are indicated or used off-label. So it may not matter as much as you think that antidepressants don’t work for depression or their other official or unofficial indications, because most of the time, that’s not what they are being used for.
So what are the actual uses of antidepressants? Why are people getting the prescriptions and taking the drugs? While they don’t meet diagnostic criteria, still, according to the Canadian researchers, “results suggest that these individuals …have other forms of mental health difficulties and needs for mental health treatment that may not be recognized in the DSM-IV.” In other words, people aren’t just randomly showing up at doctors’ offices and emerging with prescriptions for Prozac; they are “experiencing difficulties” with which they and/or their doctors think the drugs will help.
But what kind of difficulties? Another group of researchers suggests an answer. They gave Paxil to 120 depressed people, placebos to sixty, and cognitive-behavioral therapy to another 60. Then, instead of just comparing their Hamilton scores, they also measured changes in the subjects’ personalities. As expected, there wasn’t much difference in the effects of the various treatments on depression. But Paxil changed people’s personalities much more than the therapy or the placebo. Paxil takers scored lower on something called Neuroticism and higher on something called Extraversion than they had at the beginning of the trial, while the other groups’ personalities remained stable. The strongest effect of antidepressants, in other words, is on your personality. The antidepressant effect, the researchers suggest, is secondary, a side effect due to the drug making you happier with who you are.
Of course, that’s the last thing the drug companies want you to think. They’ve spent an awful lot of money reassuring the public that their drugs don’t change our personalities. If that’s the main effect of the drugs, then they’ve got some explaining to do. Or at the very least, they’d better get busy inventing a new disease for their drugs to cure—and it better be a better disease than Prozac-deficit disorder. And here, to get back to the point I started with, is where the Canadian researchers are offering some help. Lest their their study lead to a dangerous conclusion—that “the prescribing of antidepressants is appropriate among individuals lacking psychiatric diagnoses”—they suggest that “the nosological approach should take lower level psychiatric symptoms into consideration so that treatment options can be studied and administered.” In other words, psychiatrists should do exactly what they claim they never do: rejigger their diagnoses to accommodate the drugs they prescribe. Better they should lower the bar to entry than admit what is really going on. Better they should pathologize more of us than to relinquish some of their hard-earned (if ill-deserved) power.
2 Comments »
|
 |
|