Before I weigh in on Frances vs. Greenberg, I should note that Frances once wrote me an email saying nice things about an essay I wrote and asked me to contribute an autobiographical narrative to his book Saving Normal. That book, like The Book of Woe, is set to be published soon, around the same time as the DSM-5, and it too concerns the existential crisis confronting psychiatry. (I declined to contribute a piece.) I must also disclose that the essay Frances noticed makes an appearance in The Book of Woe. Recounting a flap over the news that the DSM-5’s authors might strike Asperger’s syndrome from the manual—they did, in the end, though they promised that many Asperger’s patients would qualify for treatment under “Autism Spectrum Disorder”—Greenberg recalls a New York Times op-ed “by Benjamin Nugent, a writer whose psychologist mother, an expert in Asperger’s, had gotten him diagnosed when he was a teenager, but who, after he ‘moved to New York City and … met some people who shared my obsessions,’ realized he wasn’t sick at all.”
I bring this up in part because the experience of being incorrectly diagnosed has no doubt influenced my perspective on The Book of Woe. But I also mention it because Greenberg, who is an excellent, thoroughgoing reporter, makes an understandable slip in his summary of my essay. My mother hadn’t “gotten me diagnosed.” She’d arrived at my diagnosis herself, after consultations with teachers and experts dating back to my infancy. Starting when I was in pre-school, teachers called her into conferences to share their concerns about me. I liked to play by myself, bent over my little projects, and seemed not to hear when someone said something to me irrelevant to those projects. I jumped up and down and flapped my hands. I was a tree sloth on the soccer field. In elementary school I acquired a group of close friends, but was shy and bad at eye contact. Apparently, I was spooked by powerful smells and loud sounds. She consulted with a local expert on Asperger’s before the diagnosis was fashionable. Though I have no memory of this, she remembers reading aloud the criteria for Asperger’s from the DSM-IV when I was a teenager. In her recollection, I responded, “Sounds like me.” By then I was mostly just pretentious, but my mother hadn’t forgotten the behaviors I exhibited as a child. In our house, Greenberg’s view toward the DSM—that it shouldn’t be taken too seriously—prevailed. We, like Greenberg, were hippie Jews with dubious hairstyles who preferred narrative, psychoanalytic accounts of human suffering to diagnostic categories. By giving my suffering a name, my mother hoped to do me a service. When she put me in an educational video about Asperger’s a few years later—I agreed to be in it because I didn’t know what Asperger’s meant—she hoped she was doing Aspies an important service by showing them how normal an Aspie could be.
But I was intuitive about social interaction, and Aspies aren’t. (If you want to write fiction about people sitting around and talking, as I do, it can be useful to have some intuitive sense of social interaction. Although an advocate for Aspies might retort that perhaps I’ve studied social interaction precisely because I lack an intuition for it.) My mother’s well-intentioned diagnosis didn’t do me any lasting harm, but for a while it made me more paranoid and insecure than I might have been. The other subjects in that educational video, boys chanting in monotones about Power Ranger dolls and sea-creatures, were allegedly my neurological brethren, albeit from a different place on the spectrum. At 30, I might have shrugged it off. But I watched the finished video at 22, when the transition from dork to hopefully-semi-cool Brooklynite and aspiring writer was recent, fragile, and all-important. It made me feel insane.
This is why I’m sympathetic toward Frances’ argument that the DSM must retain its air of certainty, its command of the field, while also becoming more stringent about what it includes. My mother is a discerning psychologist who cares deeply about the happiness of her children. She’s disinclined to pathologize adolescent behavior. (When a counselor at my school diagnosed me with attention deficit disorder, she respected my refusal to take meds, and I am grateful for that to this day.) But she, like many therapists in the late ’90s, embraced Asperger’s as an elastic category. As Greenberg recalls, Glenn Gould and Vladimir Nabokov and Ludwig Wittgenstein were “all diagnosed—posthumously of course—into a Hall of Fame that, depending on which website you consult, also includes Isaac Newton, Emily Dickinson, and Albert Einstein.” If the DSM’s criteria for Asperger’s had been more restrictive—if it had borne the kind of black-box warning against overdiagnosis that Frances favors—it might have spared me and my mother shouting matches. Or, rather, episodes in which I shouted at her and she calmly reconsidered her position.
Of course, it was the DSM that launched the Asperger’s craze in the first place. The DSM-IV’s publication in 1994 was the moment the hitherto obscure disorder, which had never appeared in previous editions, entered the mainstream. Allen Frances feels responsible for the explosion of diagnoses; it was under his watch that the expansive DSM-IV criteria for Asperger’s made it in. (At the last minute, and, Frances tells Greenberg, too loosely defined). By “saving normal,” Frances means that he wants the next generation of psychiatrists to erect a bulwark against the wanton expansion of diagnostic boundaries.
Whereas Greenberg sees more honor in frank ambiguity:
“No one knows what would happen if psychiatrists simply let themselves out of their epistemic prison by no longer pretending to know what they can’t know. No one knows what would happen if they simply told you that they don’t know what illness (if any) is causing your anxiety or depression or agitation, and then, if they thought it was warranted, told you there are drugs that might help (although they don’t really know why or at what cost to the brain, or whether you will be able to stop taking them if you want to; nor can they guarantee that you—or your child—won’t become obese or diabetic or die early), and offer you a prescription.”
That sounds pretty appealing when the examples you use are “anxiety or depression or agitation.” In fact, as Greenberg points out a page later, the above conversation is probably the one a lot of family doctors have with their patients when they prescribe antidepressants. But what if the example you use is the autism spectrum, and the patient is a kid? It seems problematic to tell a 10-year-old, or even a 20-year-old, that she might be on the autism spectrum. Can you imagine taking on adolescence while harboring the knowledge that you might be socially and/or cognitively impaired? Would you be able to say, “Aw hell, this quote-unquote disorder is just an intellectual construct anyway”? That strikes me as a situation in which transparent conjecture might cause substantial harm.
And besides, a lot of medicine is mysterious, not just psychiatry. Doctors of all kinds are forced to make educated guesses as a matter of routine. They still try to follow an exacting set of common guidelines for treatment. Greenberg anticipates this argument, countering that “psychiatry, much more than other medical specialties, is still deeply in the debt of ancient medicine.” But he does not address the intrusion of politics and culture on all manner of healthcare. Surely the debate about whether childbirth should be medicalized is a cultural and political one. As is the fight over whether we should consider an ailing 95-year-old “sick,” when said 95-year-old demands constant medical attention and a poor 40-year-old can’t afford to see a doctor. If the difference between psychiatry and the rest of medicine is a matter of the degree of uncertainty, is psychiatry really trapped in its own “epistemic prison?”
There is a reasonable case for a psychiatric bible designed to nip protestant speculation in the bud and written in a papal cast of mind. Greenberg argues persuasively that the current DSM encourages psychiatrists to reach beyond their competence. But perhaps we can save the DSM by making its definitions of mental illness stingy enough to encourage reticence. That DSM would not be hard science but a set of highly constrictive rules about what you are allowed to prescribe a patient and under what circumstances you’re allowed to evoke a diagnosis. It seems to me—and I am a novelist, not a mental health professional, and so have no dog in this fight, no drug company consulting gig, no claim on insurance payments to protect— that the DSM’s great purpose should be to curb the exuberance with which enterprising doctors and laymen invent, buy, and sell diagnoses for fun and profit. To be sure, this is a Kissingerian stance: Let’s prop up the dictator with the medals on his chest so long as he keeps the guerillas at bay. But if the DSM ceases to be the sourcebook doctors and patients use to determine the parameters of diagnoses, other sourcebooks will proliferate. Like those websites spreading the good news that Nabokov and Dickinson had Asperger’s.
I’m impressed by Greenberg’s reporting, his subtlety of thought, his dedication to honesty, and his literacy. I made almost coital sounds of assent, reading The Book of Woe, when Greenberg rebutted public health bureaucrats with Melville. But I list toward Frances in the great debate Greenberg stages over how to save psychiatry. Greenberg has written a very good book. But before we kill off the DSM, let’s recall another line from The Confidence-Man. It’s on page two: “Where the wolves are killed off, the foxes increase.”
The Book of Woe: The DSM and the Unmaking of Psychiatry, by Gary Greenberg. Blue Rider Press.