I don’t think it’s intuitive for a lot of people that psychiatric labels are names for patterns of behavior and that’s it. A diagnosis fits you if you’re acting a lot like the pattern, in the opinion of someone whose opinion may or may not count for bureaucratic purposes. The underlying reality doesn’t change when you drape different names over it. The problem is how to choose among all the available descriptions of reality. Those descriptions often have different purposes, where accuracy is only one of the possibilities.
I want to make an analogy between psychiatric language and the “technostrategic discourse” used by defense intellectuals to talk about nuclear war. The original Carol Cohn paper is great and worth reading all the way through. It’s a cliche to point out the coldness of the phrase “collateral damage,” but it’s not as common to mention that it’s part of entire military mindset. There’s a specifically military way of talking. The premise of Cohn’s article is that she was mindful of the changes she noticed in herself as she spent time around defense intellectuals and learned to talk like them.
In other words, what I learned at the program is that talking about nuclear weapons is fun. The words are quick, clean, light; they trip off the tongue. You can reel off dozens of them in seconds, forgetting about how one might interfere with the next, not to mention the lives beneath them. Nearly everyone I observed–lecturers, students, hawks, doves, men, and women--took pleasure in using the words; some of us spoke with a self-consciously ironic edge, but the pleasure was there nonetheless. Part of the appeal was the thrill of being able to manipulate an arcane language, the power of entering the secret kingdom. But perhaps more important, learning the language gives a sense of control, a feeling of mastery over technology that is finally not controllable but powerful beyond human comprehension. The longer I stayed, the more conversations I participated in, the less frightened I was of nuclear war.
How can learning to speak a language have such a powerful effect? One answer, discussed earlier, is that the language is abstract and sanitized, never giving access to the images of war. But there is more to it than that. The learning process itself removed me from the reality of nuclear war. My energy was focused on the challenge of decoding acronyms, learning new terms, developing competence in the language–not on the weapons and the wars behind the words. By the time I was through, I had learned far more than an alternate, if abstract, set of words. The content of what I could talk about was monumentally different.
Consider the following descriptions, in each of which the subject is the aftermath of a nuclear attack:
Everything was black, had vanished into the black dust, was destroyed. Only the flames that were beginning to lick their way up had any color. From the dust that was like a fog, figures began to loom up, black, hairless, faceless. They screamed with voices that were no longer human. Their screams drowned out the groans rising everywhere from the rubble, groans that seemed to rise from the very earth itself.
[You have ways to maintain communications in a] nuclear environment, a situation bound to include EMP blackout, brute force damage to systems, a heavy jamming environment, and so on.
There is no way to describe the phenomena represented in the first with the language of the second. The passages differ not only in the vividness of their words, but in their content: the first describes the effects of a nuclear blast on human beings; the second describes the impact of a nuclear blast on technical systems designed to secure the “command and control” of nuclear weapons. Both of these differences stem from the difference of perspective: the speaker in the first is a victim of nuclear weapons, the speaker in the second is a user. The speaker in the first is using words to try to name and contain the horror of human suffering all around her; the speaker in the second is using words to insure the possibility of launching the next nuclear attack.
Technostrategic language articulates only the perspective of the users of nuclear weapons, not the victims. Speaking the expert language not only offers distance, a feeling of control, and an alternative focus for one’s energies; it also offers escape from thinking of oneself as a victim of nuclear war. No matter what one deeply knows or believes about the likelihood of nuclear war, and no matter what sort of terror or despair the knowledge of nuclear war’s reality might inspire, the speakers of technostrategic language are allowed, even forced, to escape that awareness, to escape viewing nuclear war from the position of the victim, by virtue of their linguistic stance.
The difference between the two quotes about nuclear war wasn’t their accuracy. It was their purpose and which aspects of the situation they emphasized. Psychiatric labels are similar. They imply a whole mindset about the human condition, and they have their charms. The mistake is thinking that they’re the exclusive description of reality. That would be black-and-white thinking.
In this passage from The Anti-Romantic Child, the autistic little boy was doing his thing, and the diagnosis caused a massive overnight shift in his mother’s, and thus his own, reality. She didn’t think, “My son has some issues and this label will accomplish getting him help for those issues.” She was “made to feel” this:
Benj was the sure thing, the bedrock, the fulcrum of our lives, the meaning of our lives, really. And then, just a few months later, as the evaluations began, the child I thought I knew was gone. Benj had been our refuge from the storm, our unadulterated, uncomplicated, simple joy. And then suddenly he was the storm, he was complicated and confusing and terrifyingly at risk.
One of the most painful things about those first days was that I was being made to feel that all the things that I’d considered unique and special about Benj were instead uncontrollable manifestations of a disorder. He was not unusual; he was typical, ordinary, a classic case. He didn’t have an interesting mind; he had faulty wiring. He didn’t have a distinctive personality; he had a syndrome. His jubilant recitations of Robert Frost’s “Fire and Ice” and “Nothing Gold Can Stay” and the word- and note-perfect renditions of many of the songs from The Sound of Music, West Side Story, and Oklahoma! were not the result of a love or appreciation for poetry or music but rather a mindless parroting. His animated recitation of scripts from Between the Lions and Sesame Street was not a dazzling display of his powers of memory as much as it was “perseveration,” “echolalia,” “video talk,” and was to be discouraged. His ability to line up his letter blocks in alphabetical order and to make number chains from 1 to 20 was a compulsion, not a pleasure. His seeing letters everywhere–in the shape of his food (a string of spaghetti was an S) or the curve and lines of a piece of jewelry (earrings of mine were Ts, a linked bracelet I had was seven Os)–wasn’t perceptive or imaginative–these were ominous signs of obsession. His not responding to questions or not turning his head in response to a voice wasn’t a sign of single-minded focus on an engrossing activity so much as it was an inability to engage with the outside world…
…While we danced around to “Here Comes the Sun” or “Skip to My Lou,” Benj as buoyant as ever, I’d clench my nails into my arm or bite the inside of my cheeks hard to keep from breaking down, and would run to the bathroom afterward to sob, kneeling on the floor and running the water so he wouldn’t hear me.
These precautions may have been unnecessary, as Benj seemed, as always, unusually insulated from my emotional state. Benj’s obliviousness to the larger situation, his living in his own world, which had once served as a balm and a solace, now enhanced the pathos of the situation. He seemed to have no understanding or awareness of the radical change in his parents’ consciousness about him, and showed few indications that he sensed that anything at all had changed. They say children always know when something is up, but I really don’t think he did. And that his unruffled indifference was, in fact, a symptom of the disorder only heightened its poignancy for me.
It becomes possible to pathologize everything the child might conceivably do, and parents do just that. This is how all those fears about echolalia turned out:
When I first realized Benj was hyperlexic, I’d feared that the beauty and significance of the poems he’d seemed to love might have been utterly lost on him. But now, to my amazement, he was writing haikus about birches in winter, using similar images, moods, and attitudes in his own writing; they’d been stored in him, they’d influenced and shaped him. Poetry mattered to him; it seemed to help him make sense of his experience.
It made me laugh to realize that this blog is a kind of echolalia, to the extent that I’m quoting other people at length to express myself.
After figuring out that her son has issues, Gilman noticed all the autistic, or at least “broader autism phenotype,” things that her husband did. She doesn’t describer her own behavior in the same way.
What struck me is that she obviously has a special interest in Wordsworth. Lots of people like Romantic poetry, but do they go to grad school over it? She reprints a letter her son wrote apologizing for too much “chess talk,” but she relates everything back to Wordsworth. There’s an appendix of Wordsworth poems in the back. Poems are quoted every few pages, throughout the book. She uses her special interest as an escape and a coping mechanism, just like me:
I wanted practical help and yearned for penetrating insight, emotional resonance, and imaginative expressiveness. And so what I devoured–had an insatiable appetite for–were nonfiction books by pediatricians, developmental psychologists, neurologists, therapists (Stanley Greenspan, Howard Gardner, Oliver Sacks, Mel Levine, Antonio Damasio, T. Berry Brazelton, Pema Chodron, Jon Kabat-Zinn) and pure literature–not writing about literature. Yeats and Ishiguro, Gilead and Great Expectations, Shakespeare and Austen and Toni Morrison, Rilke and Nabakov and most of all Wordsworth got me through this most difficult period. I read while standing in lines at the bank or supermarket, sitting in the lobby of Benj’s school, in the waiting rooms of doctors’ and therapists’ offices, while nursing (a ton while nursing), while on phone hold. I carried books with me everywhere and used every opportunity to read. It kept me going.
This, from the mother of a child with hyperlexia. Here, she explains why she uses context-appropriate, delayed echolalia to communicate:
But while on the one hand, I felt the loss of what I’d dreamed and hoped for more strongly because of Wordsworth, on the other, I found in Wordsworth a language with which to express both the depth and breadth of my loss and the possibility of its recompense. Wordsworth gave me the thought and the words for the lump in my throat. He gave me an elegiac vocabulary. His words housed my thoughts and gave shape and contour to my feelings. He assuaged my sickness, my sense of wrong. He gave me solace and comfort.
Not so different than having Bad Religion lyrics for every situation.
She also got paid to research and talk about her special interest.
The languages of psychiatry and subjective experience can be very different, because they have different purposes. One gives meaning to our lives. The other judges people from the perspective of relatively conservative well-to-do white people, often for insurance billing purposes.
Autism isn’t the only dimension of personality on a spectrum. Depression and schizotypy come to mind. Everybody does most of the criteria of most mental illnesses, at least sometimes. Most people don’t do them hard enough or consistently enough to have life problems. The big question is: why are they having life problems?
It’s clearly true that society is dysfunctional in many ways, that that’s extremely stressful, and that prolonged stress brings out the crazy in people. Psychiatry does have the assumption that society is fine built into it. It might be a fact that someone is having life problems due to their behavior, but do we blame the individual or society? What’s the behavior, specifically?
The problem is that too many mental health professionals haven’t given serious thought to what problems neoliberalism might have. Neoliberalism, like all prejudices, is experienced as the way things obviously are. Whether you like neoliberalism or not, you have to at least be capable of it to become a mental health worker, generally speaking. The families and social environments of people with graduate degrees are more likely to experience society as generally working for them. They’re less likely to have experienced bullshit structural setbacks, making personal failure the only intuitive explanation for them. It’s self-reinforcing, since they’re all talking to each other and they all agree that we need (a very specific kind of) “evidence-based treatments.”
Having had a good education, I can say from experience that it’s jarring to walk into a “low-income” classroom and see what school is like for the majority of people. From inside the bubble, it’s very easy to judge ignorance in others, because didn’t they hear the same things in school that you did, repeatedly? Actually, no. They did not.
If you didn’t really know that, you’d make all kinds of judgmental assumptions about your patients due to the fundamental attribution error. There’s a presumption against them, which a lot of them can sense intuitively. The eye of psychiatry only sees pathology.
Seeing everything as a “symptom of autism” and therefore pathological is a mistake. Autism is a construct. A “symptom of autism” is something in your life which could be used as an argument to support you meeting a checklist item. The labels wouldn’t be appropriate for story time with your child, because diagnosing them with a problem isn’t the purpose of story time. In a sense it’s true that autistic people act a certain way because their brains developed a certain way. That’s also true of everyone. “Because he’s autistic” is a bit of an empty explanation for why someone does something. I thought I had reasons for doing things before getting diagnosed. It’s not like the word “autistic” is enough to replace getting to know me.
I think it says a lot that autistic people are considered to be good at math and bad at abstraction and imagination. Only someone who doesn’t like or understand math could believe all those things simultaneously. That’s a clue that we’re dealing with a set of biases instead of something rational.
Not everyone shares those biases, or starts out sharing them. But look at how they infected Priscilla Gilman’s relationship with her son. The medical discourse shifted her into a pathologizing mindset, which had a pervasive effect on her life.
I didn’t experience my diagnosis like that at all. It was interesting and explanatory. I still experienced my preferences and opinions as legitimate, and they’re more complicated than “because I’m autistic.” It adds to the explanation, but it’s not enough.
The difference is that I don’t try to make psychiatry the whole basis of my worldview. It’s a lens on things. Carol Cohn was still able to write about how talking like a defense intellectual changed her mindset. It didn’t completely take over her mind, because she didn’t let it. Priscilla Gilman writes that she was “made to feel” stuff about her son at a few points in The Anti-Romantic Child.
Detachment can be a good thing.