darold treffert and the archaeology of hyperlexia iii

Normal people want to believe that there’s a group of experts somewhere (they don’t care where) figuring out all the problems and taking care of them. “They” will certainly come up with something.

Part of getting a PhD is the demystification of experts. It’s an induction into a community of scholars, or whatever. A shift in identity occurs when you realize that you and all the stupid people in your grad program are the experts, and we don’t know what the fuck.

Right now I don’t have the energy to think a bunch about autism as a factor in Wittgenstein coming up with the idea of language games, but that’s what graduate training is. You learn to read texts that are otherwise impenetrable (“the literature”). A good way to think about these things is using Foucault’s concepts of “discourse” and “power/knowledge.”

The first video is a step-by-step guide to applying the concept. It’s a recipe you can follow to generate publications, as a Foucauldian. As I remember it, he’s basically summarizing The Archaeology of Knowledge. Everybody can do it, but nobody ever breaks it down for them that this is what academia is all about. The “experts” exercise power via discourse.

There’s a (university) discourse surrounding autism, which is the field of struggle between the neurodiversity movement and its enemies. The analogy between autism and race is intentional and valid. I’m more allowed to say that than other people because I’m a mulatto. See how that works?

It’s common for researchers to actively dislike the subjects of their research. People who hate rats and mice (developing bad rodent allergies is an occupational hazard). I was in the lab of a “translational psychiatry” person who clearly disliked addicts and the mentally ill for reasons related to family drama. Earlier I wrote about the sociologist of mulattoes. As shapers of discourse, elite experts are the official rationalizers of society. They know how to use “evidence” and “objectivity.”

Experts are the modern version of a priestly class. And sometimes the priests are haters. Meet Darold Treffert, MD:

He’s quite proud of Rain Man and all the stereotypes that came with it:

In this culture of information overload, TV and film makers know that the key to ratings is shock value. So when the subject of autism is covered, it is often the extreme cases that we see. Consider Rain Man, The Undateables, or Louis Theroux‘s 2012 documentary, Extreme Love. They tend to follow a similar theme, focusing on the meltdowns, the ‘stimming’, the social awkwardness designed to make the viewer cringe; and unfathomable mathematic, musical and artistic capabilities of the autistic individual. There will usually be a few hard facts hidden in there somewhere, but ultimately it is all about the entertainment value.

Our busy lives make selfishness a necessity. There are only so many hours in the day; how many of us have the time or the inclination to watch a sensationalist documentary and research the topic further, unless they have a specific reason to?

The second paragraph is also part of how power operates. The same “American” values created the busyness, the sensationalism, and the disinclination to dig deeper. Economists use models based on “rational actors” behaving selfishly. Seemingly-unrelated articles on the internet encourage humans to behave in the same way. Neoliberal discourse.

He wrote an account of his work on the movie, and this is the first paragraph:

Raymond Babbitt, the main character in the movie Rain Man, has become the world’s best known savant due to Dustin Hoffman’s remarkably accurate and sensitive portrayal of Savant Syndrome in that film. That 1988 movie, in its first 101 days, accomplished more toward bringing Savant Syndrome to public awareness than all the efforts combined of all those interested in this condition the past 101 years following Dr. Down’s 1887 description of this disorder. It is a memorable movie about a memorable savant. It won four Academy awards, including Best Actor for Dustin Hoffman and Best Picture for 1988. I was pleased to have been a consultant to that film. Because that film has served as the introduction for so many persons to savants, it is worth looking at some of the effort and activity that led to its creation, its authenticity and its success.

Ultimately it is all about the entertainment value, straight from the source:

That October 1986 version of the script was very different from the finished product. First of all, that early version had Raymond Babbitt’s mental handicap as mental deficiency rather than autism. A variety of persons, especially Dustin Hoffman, felt that the portrayal of an autistic person, with all the typical associated rituals, obsessiveness, resistance to change and relatively affectionless behaviors might make a more interesting character for Raymond Babbitt, one the public had never really been exposed to on screen. Also, autism would create an opportunity for a more complex interaction between the two brothers. That, of course, was a crucial and significant change and as it turned out, a very successful one. However it required a major rewrite of the script changing from the real-life savant model, Kim, whom Morrow had written about to a new, composite character. The savant skills remained but the basic disability was an entirely different one, now autism, with all of its distinctive, difficult and demanding characteristics and features.

Autistic people should be locked away forever. Treffert says:

A third crucial change was the ending. In the original script there was a “happy ending.” Raymond has changed so much that he does not return to the institution. He moves in with his brother, they go to ball games together and live happily ever after. While that makes a nice story, it also is an unrealistic one. The final script ending is as it should be. Raymond has changed slightly, some tentative closeness has emerged and one senses the beginnings of a transition, perhaps someday, to a life outside the hospital. It is a hopeful ending, but a realistic one, for all that one could expect in that six-day encounter is some new hope, not an accomplished cure.

Presumably, this is the kind of hospital Treffert had in mind. This footage is from 1983. On second thought, it’s better nobody diagnosed me in early childhood:


Treffert has a career based on keeping media representations of autism negative. This is the photo accompanying his Scientific American article Autism’s “Island of Intactness”. Note that, in the discourse, Scientific American explains reality to people who buy magazines when they go grocery shopping:

He leads with shock value:

My first introduction to autism was a rather jarring one. It was my first day on my child psychiatry rotation. The Department was in a house on the University Hospitals campus in Madison. As I approached the house I heard a very loud “thump! thump! thump! Sound, which literally rattled the rafters of the house.

Inside was a 12-year-old non-verbal, severely autistic girl banging her head on a school desk. She had a helmet on, but even that was not enough to muffle that awful sound.

It occurred to me then that somewhere inside that girl, troubled as she was, had to be some “island of intactness,” some uninjured element of reality and wellness, however hidden and deeply buried.

In 5th grade in the early 1990s, I was friends with the “ADHD” kid who used to get frustrated with his assignments and start shouting and banging his head surprisingly hard on textbooks, the table, etc. I remember having a conversation with him like “I hate myself.” “I hate myself, too.”

I used to hang out at his house. His dad was an enlisted guy. Come to think of it, there was a day when he heard Against the Grain playing and visibly disliked it or made a comment:

 


Childhood role model.

I got that friend into Bad Religion and also skateboarding. He didn’t stick with the skateboarding. In the vicinity of his house, there was an amazing stretch of sidewalk that functioned as a bank or launch ramp, depending on how fast you went. His dad said he wasn’t allowed to go over there with me because he “wasn’t that good” or was clumsy or something awful like that. I knew of at least one occasion on which his dad kicked him during an argument, but I knew how Serious Business it was to report child abuse, so I didn’t. There was another time that the friend beat a Final Fantasy game and started hollering “I killed him! I killed him!” His dad came in like “OMGWTF if the neighbors heard that?!”

Again, this friend hit himself in the head when he felt stupid, which was often. It’s true that he really needed to be sure to take his Ritalin and work on his problem behaviors. It’s not easy being in middle school with diagnosed ADHD and undiagnosed autism and an abusive father and a little sister who makes fun of you and a teacher who makes you feel bad. It’s like, unbearable to be in your own skin. Treffert wouldn’t know anything about it. He thinks there’s an invisible wall making self-injury beyond human understanding. Everyone agrees you’re bad and your dad taught you to hit people that are bad. Duh. Durrrrr.

I have been involved with the study of autism for many years. In fact I had the opportunity to learn about autism directly from Dr. Leo Kanner himself when he was a visiting professor at times during my medical school years. Dr.. Kanner was the first to identify and name early infantile autism in 1943. Following my psychiatric residency I started a Children’s Unit at a psychiatric hospital in Wisconsin. Most of the patients were autistic and it was there I also met my first savants that have also so intrigued me and have been the object of my research for over 50 years as documented in my 2010 book on the topic: Islands of Genius: The Bountiful Mind of the Autistic, Acquired and Sudden Savant.

This illustrates another aspect of how discourse works. The book Neurotribes discusses the politics of Kanner vs. Asperger and how autistic you have to be in order to count. Kanner had self-interested reasons for portraying autism as super bad and super rare, raising his prestige as the world’s leading authority on it. People really do absorb some of the intellectual atmosphere of the place they get their advanced degrees from. Colleagues tend to share a certain mentality. Treffert is also fixated on extreme cases.

Note that Rain Man is only part of the impairment in normal people’s social behavior toward autistic people:


Unsurprisingly, Treffert has a hand in spreading some of those, too. He translated “but you can’t be autistic” into medical discourse by inventing a syndrome called “hyperlexia 3.” This is how he introduces it:

The first clue that Garret had autism was his fascination with the Federal Bureau of Investigation anti-piracy warning at the start of movies. This interest showed up when he was 9 months old. There were the baby blocks lined up like a Scrabble board, their letters in alphabetical order, and then delayed speech.

He received his autism diagnosis at age 2, when he could already read the labels of all the over-the-counter medications he passed while being wheeled down the drug store aisles. The doctor who diagnosed him dismissed his early reading ability as a “splinter skill” that didn’t warrant any special attention.

But Garret’s mother was unconvinced that her son had autism. He was not withdrawn. In fact, he was good at making eye contact and loved giving and receiving affection. When he was 3, a speech therapist transformed his knack for reading into a powerful teaching and learning tool. And as Garret grew older, his autism symptoms disappeared.

“He took up music and tae kwon do and excelled at both. His high school years were pleasant,” his mother says. “He had friends, went to the prom, played in two rock bands and, most importantly, was — and is — happy. He received two merit scholarships and just finished his first year in college on the Dean’s list.”

Garret didn’t ‘outgrow’ autism; he never had it. Instead, he has what I call ‘hyperlexia 3’ — a form of superior reading ability accompanied by some autism-like symptoms that generally fade over time. He is part of the approximately 5 percent of people diagnosed with autism as children who no longer meet the criteria for the condition. Many children who read early or speak late fall into that group. The dozens of stories I have heard from parents of these children suggest that hyperlexia 3 is real, is distinct from autism and deserves study as a separate condition.

Not so fast! The construct of hyperlexia comes from 1967, coined by Silberberg and Silberberg. Here’s a paper from the following year:

Several case histories of hyperlexic children whose abilities in word recognition are at a level significantly higher than their general level of intellectual functioning are described, and the impact of such a condition on the child is suggested as an object of research. In several cases presented, the hyperlexia resulted in environmental stress. The potentiality of later stress is expected to take the form of anxiety provoked by unrealistic assessment of the child’s abilities and by the high-level demands placed on him by teachers and parents. Several of the children described had been referred for testing as gifted children on the basis of word recognition ability alone, and one had been accelerated to a higher grade. One boy had not been detected as dyslexic until the fourth grade when it was found that although his word recognition was at grade level, his reasoning and comprehension abilities were similar to those of a high-level, educable mentally retarded child. This condition is often not detected earlier because of the emphasis on word recognition skills in the primary grades and because of the assumption of teachers and parents that if reading skills are high, other mental functioning should also be high. References are listed.

They came up with an operational definition using the tables in the “WRAT Manual,” which is an acronym for Wide Range Achievement Test.

Children are designated as hyperlexic if their reading score is one year above expected level in the first three grades and 1.5 years above expected word recognition level in the fourth, fifth, and sixth grades.

In reading the following passage, keep in mind that they’re using the 1968 definition of autism:

It was observed that [a 3-year-old girl] was able to sound out almost any word presented to her. However, much of this reading was manifested in an unusual way. For example, she often read in a perseverative manner. One incident was told concerning her reading herself to sleep by continuously reading a soap bar wrapper over and over again. When she was brought in, evaluation was impossible because of her behavior. Many of the symptoms exhibited caused the psychologist to suspect infantile autism and she was then referred for further study. It is interesting that, among the approximately thirty cases encountered by the authors, three were diagnosed as autistic and a disproportionately high number were evidencing behaviors typically associated with neurological dysfunction.

The concept of hyperlexia was created to account for a group of children that would have later been diagnosed as having Asperger’s and later as ASD Level 1. As the definition of autism changed, it looks like nobody revisited the creation of hyperlexia.

The construct of hyperlexia is also a product of the school situation, as noted by its creators:

It is not the existence of such a trait which needs investigation. Rather, it is the impact of such a condition on the child which should be the object of research. Conceivably, some children exist who would fall under the rubric of hyperlexia, and yet this condition has caused them no problem. It must be noted that the cases described above were encountered in the practice of school psychology. It is therefore conceivable that our small sample does not represent all children who can recognize words in a precocious manner, but only represents children for whom this condition was upsetting. Presently, attempts are being made to locate other cases to determine whether there are some hyperlexic children who have no problems in school adjustment, and whether the necessary adjustments in instructional materials cause administrative difficulties.

As a vantage point, the school system isn’t the place to observe all the autistic traits. The school day revolves around suppressing them at great personal cost. To keep people like Treffert happy.

Meltdown. There’s no turning back now. It all has to come out.

Then comes the exhaustion — for him and for me. He can’t reflect on it because it’s all just too much. He just needs to recharge now, as do I. It’s so hard being a mom on the receiving end of the delayed effect because it holds no prisoners, and it doesn’t care who it hurts in the process. So I can’t even begin to imagine how it must feel for my son.

As his mom, I know there would have been telltale signs throughout the day. But they’re small clues that can be easily missed, as he would have been largely compliant, so therefore no one would have realized there was any problem. But I know as the day progressed, his complexion would have become paler as the energy sapped out of him with each passing hour.

He may have struggled to eat his lunch due to high anxiety. A nervous giggle would have squeaked out when his teachers tried to speak to him. He would have put his head down on the table during lessons, or possibly rocked back and forward on his chair to calm himself down. And as the pressure mounted and the clock ticked toward home time, there may have even been some finger picking and sleeve chewing.

My son shows these signs of stress through his body language and gestures. He can’t always communicate his needs verbally, so they can get missed. And to be honest, I don’t think he’s able to recognize this rising pressure himself until it’s too late most of the time.

The can be a common challenge facing many children on the autism spectrum. Some children are able to contain their feelings all day at school, with the teacher blissfully unaware there’s a problem. However, the stress hormones are slowly building and building inside these kids. This creates a Jekyll and Hyde sort of situation that can put incredible pressure on families — especially if teachers don’t understand or believe what the parents are telling them.

In 2011, Treffert wrote a paper called Hyperlexia III: Separating ‘Autistic-Like’ Behaviors From Autistic Disorder; Assessing Children Who Read Early Or Speak Late.. He popularized his classification system on the Scientific American blog.  What do these children look like?

“In an earlier column titled “Oops. When “autism” isn’t autistic disorder,” I outlined three types of hyperlexia, or precocious reading ability, which is sometimes an element of a diagnosis of ASD. Type 1 are neurotypical children who simply read way ahead of their chronological age. Listening to a 4 year old reading books to his or her nursery school classmates is a startling experience.

Type 2 are children in which intense fascination with letters and numbers, along with early reading and remarkable memory represent ‘splinter skills’ as a part of autistic syndrome disorder (ASD)

Type 3 are children who likewise show intense fascination and preoccupation with numbers and letters very early, along with precocious reading skills and remarkable memory. They do have “autistic-like” symptoms or behaviors but those disappear over time as the child gets older. The outcome in these children is much more positive than those with ASD to their benefit and the great relief of their parents.

Following the “Oops” article I received numerous reports from parents who identified with hyperlexia 3. “You just described my child,” the puzzled, and relieved parents would write as they read the case examples in my Wisconsin Medical Journal article in December, 2011. I reviewed those reports and recently did an analysis of 165 of them with the following findings:

  • In all the cases there had been a confusing journey of various diagnoses, sometimes ASD/Aspergers or its variants, or else a wide range of others from hyperactivity to anxiety disorder to speech delay.
  • Age of onset of hyperlexia skills was 24.6 months
  • Age of first professional contact was 44 months
  • Certain features caught the parent’s attention in the hyperlexia 3 group as being different from ‘autism’ as usually described. For example their child demonstrated less withdrawal, more eye contact, the ability to seek and give affection and in general overall increased social proficiency.
  • Additionally while some “autistic-like” behaviors were present such as repetitive behaviors, insistence on sameness, occasional stimming, echolalia and increased sensory sensitivity, those symptoms disappeared as the child grew older.
  • 11 cases that mentioned adult outcomes indicated 9 persons were attending college and having successful, independent lives. They continued to be exceptional readers which helped their collegiate performance and aided their careers. 2 cases were described as needing supervision because of continued autistic characteristics
  • Having an ASD diagnosis applied to their child at any point was a source of great distress for all parents.

Basically, when kids were autistic but not severely fucked up, the parents needed a new label to relieve their great distress. In the 2011 paper, which is supposed to be the canonical description, Treffert of course doesn’t provide clear guidance on differential diagnosis. That’s because Hyperlexia III is just autism where the parents did a better-than-expected job:

These children read early, often showing striking memorization abilities, and sometimes have precocious abilities in other areas as well. They may show unusual sensory sensitivity, echolalia, pronoun reversals, intense need for sameness and resistance to change, specific fears or phobias, have lining/stacking rituals, and/or strong visual and auditory memory. Unlike children with ASD, however, they are often very outgoing and affectionate with family, even though reserved and distant with peers and would-be playmates. They do make eye contact and can be very interactive with persons close to them. These children seem quite bright, inquisitive, and precocious in some areas overall. Reading and memorization are conspicuous and often quite amazing. There may be other autistic-like behaviors as well. But over time, they fade, and these children are then quite typical for their age. The prognosis for these children is excellent as they outgrow the “autism” they never had.

That’s what my mom said. “But you made eye contact.” The crux of the matter is whether we’re dealing with type II hyperlexia, the one that’s still autism. This is the complete description:

Children in the type II category have hyperlexia as a splinter skill as part of an autistic spectrum disorder. They read voraciously, usually with astonishing memory for what they read, and often have other memorization abilities, sometimes linked with number or calendar calculating skills. These splinter skills are seen along with the characteristic language, social, and behavioral symptoms seen in autistic spectrum disorders. They usually carry a diagnosis of autistic disorder, Asperger’s disorder or pervasive developmental disorder (PPD/NOS [sic]). These cases include the several subtypes of autistic disorder such as classic early infantile autism, or late onset, regressive autism.

In this group, it is the hyperlexia as a splinter skill that raises the question of savant syndrome. But for even those for whom the diagnosis of autism spectrum is appropriate, the precocious reading and decoding abilities can be used as a tool to support the development of language and reading comprehension, language expression, and social skills. Clinical presentation, course of illness, and prognosis are those seen in autistic spectrum disorders.

Part of oppressive discourse is that it’s something “everybody knows.” Everybody knows black people are stupid, autistic people have no emotions, etc.

There’s also a category mistake going on. Autism is a neurodevelopmental trajectory. Autism is diagnosed with a behavior checklist. When it suits him, Treffert is aware that the same behavior might happen for multiple reasons, e.g., autism or “hyperlexia III.” Treffert hasn’t considered the possibility that “normal” behavior can happen for multiple reasons, i.e., people called “high-functioning” learn to pass. This makes them capable of doing things normally reserved for real people, like having jobs or experiencing affection.

The existence of “high-functioning” autistic people threatens the whole dehumanization project. High-functioning people are excluded from the discourse any time they say something unpopular about anything.

Case in point. Autistic person (Kassiane of Radical Neurodivergence Speaking) posts epic rant and out come the functioning labels.

Autistic dudes, and yes I do mean dudes, specifically straight cis dudes, and moms of autistic straight dudes as well, we need to have a conversation. By which I mean I am going to tell you to stop doing something, you’re going to cry about it, and it’s not going to be my problem at all. You’re going to persist in making it my problem no matter what I do, but it’s not.

Gentlemen, stop going to autism meetups to ‘find a girlfriend’. Stop. No. Do not collect go do not collect $200. Do not do this.

I can already see you whining “but how am I supposed to get a girlfriend?” as though that is my responsibility. And that’s the problem. Autistic men come to autistic groups with the sole goal of finding someone who will take over for their mom in keeping him fed and all that, and also have sex with them. And that’s awful. Don’t do that.

First, we do not owe you shit. “We’re both autistic and you make my pants tingle” is not a basis for a relationship. I am not your mom. If I wanted a son I’d make one who was smaller than me and who I could raise to not be a manchild who felt entitled to women’s labor and attention. I do not want a son. I especially do not want to adopt you and also have sex with you. That dynamic is fucked up, dudes…

And even if you do have your shit as together or more together than I do? That doesn’t mean you have attractive qualities. Are you super hot? Funny? Kind? Interesting? A lot of the guys who hit on me at these things are…none of the above. No one likes to date boring unpleasant people. Autistic women are allowed standards. And “well she’s really hot and autistic so I want to date her” gets exactly nowhere with me. Great! Your pants are tingling! That is a personal problem! For you to work on! Yourself!

I have witnessed this phenomenon, and a commenter on the original blog concurs:

OH MY GOD FUCKING YES, THIS. ALL OF IT.

I stopped going to several autism support groups when I would walk in as one of only a few afab people and be swarmed by straight autistic dudes very aggressively flirting, even after I explicitly said I have a partner and am mono and uninterested. I even had one time where a guy said to my face, My fantasy is to date an Asian girl with aspergers because I also have it so this would be perfect!!! And I was thinking all like, WOW letting your racist fetish show much?! Plus assuming my gender and that I’m desperate enough to date anyone who asks. Gross. Fuck this.

The interesting thing is to watch the functioning talk put to use by an autistic man offended by those sentiments:

The author is high functioning enough to be annoyed by lower functioning autistic men, but not high functioning enough to realise that she literally just told a bunch of guys with often profound social disabilities to magically get better.

Misogyny is not a symptom of autism. Men who pretend they aren’t deliberately instructed in sexism are full of shit. For example, my brother’s childhood nickname for me was “Beast.” I remember learning about the Beastie Boys from my sister, around 3rd or 4th grade. The song “Girls” is super catchy. Such is how the patriarchy operates:


The commenter, “t0xicd0g,” explains his conclusion that the woman complaining is “high-functioning”:

Because they are reasonably self aware, highly literate, and aware of larger structures and ideologies in society, such as the knowledge that a mother asking a woman to date her son is not right, or that there are social cues that these guys are missing.

This awareness and ability is practically the definition of high functioning.

Yet she can’t see that what she’s angrily suggesting these guys do is basically ‘get better’ from something you can’t really get better from. Really high functioning people can pass in society, they can learn how to deal with people, get jobs; adults who are still having to live at home with their parents? Probably not so much. The author is guilty of thinking “Well, I have autism and I know these behaviours are wrong, so there is no reason that these other autistic people shouldn’t also know this”. It ignores the possibility that there might be people lower on the spectrum of functional behaviour who really can’t see what she means.

The reason that I’m a “high functioning medical cannabis patient” and not a “homeless drug addict” or “on disability” is that grad school and the tech industry tolerate more abnormal behavior than most jobs, and I had the language skills to get those jobs. I also had opportunities to prove I can do hard things that aren’t generally available like high school debate or a program that paid for me to graduate high school with an AA (books not included). Then I had a PhD. Despite being a doctor myself, I’m often dismissed in various ways when I go to the doctor. Black people in hoodies cannot possibly know more about their problems than a doctor who met them 15 minutes ago. Because discourse.

Not having the concept of discourse cripples people’s ability to fight back against it. I’ll observe that I learned about Foucault in debate, not the normal school curriculum, and that debate is generally for rich people and elitist. Rich people are already educated in how fucked up they are. They just don’t care.

I’d have “hyperlexia III” and not autism if you diagnosed me on the basis of stereotypes of people about PhDs, which is the kind of thing Treffert is doing. I don’t appreciate being used as the poster-child for silencing myself. Darold Treffort can go fuck himself.

He really is personally responsible for years of suffering that stem directly from sucking at things without explanation.  He greatly obfuscated the explanation, using his ability to write like a psychiatrist.  Psychiatry really is a literary genre, as demonstrated brilliantly and at length by Sam Kriss.  This is one of the most eloquent critiques of mainstream psychiatry that I’ve ever read, but it would be lost on many psychiatrists because it violates the norms of discourse. Reviewing the DSM-5 as a novel just isn’t done.

Great dystopia isn’t so much fantasy as a kind of estrangement or dislocation from the present; the ability to stand outside time and see the situation in its full hideousness. The dystopian novel doesn’t necessarily have to be a novel…Something has gone terribly wrong in the world; we are living the wrong life, a life without any real fulfillment. The newly published DSM-5 is a classic dystopian novel in this mold…

Over two inches thick and with a thousand pages, it’s unlikely to find its way to many beaches. Not that this should deter anyone; within is a brilliantly realized satire, at turns luridly absurd, chillingly perceptive, and profoundly disturbing.

If the novel has an overbearing literary influence, it’s undoubtedly Jorge Luis Borges…Here, we have an entire book, something that purports to be a kind of encyclopedia of madness, a Library of Babel for the mind, containing everything that can possibly be wrong with a human being. Perhaps as an attempt to ward off the uncommitted reader, the novel begins with a lengthy account of the system of classifications used—one with an obvious debt to the Borgesian Celestial Emporium of Benevolent Knowledge, in which animals are exhaustively classified according to such sets as “those belonging to the Emperor,” “those that, at a distance, resemble flies,” and “those that are included in this classification.”

Just as Borges’s system groups animals by seemingly aleatory characteristics entirely divorced from their actual biological attributes, DSM-5 arranges its various strains of madness solely in terms of the behaviors exhibited. This is a recurring theme in the novel, while any consideration of the mind itself is entirely absent. In its place we’re given diagnoses such as “frotteurism,” “oppositional defiant disorder,” and “caffeine intoxication disorder.” That said, these classifications aren’t arranged at random; rather, they follow a stately progression comparable to that of Dante’s Divine Comedy, rising from the infernal pit of the body and its weaknesses (intellectual disabilities, motor tics) through our purgatorial interactions with the outside world (tobacco use, erectile dysfunction, kleptomania) and finally arriving in the limpid-blue heavens of our libidinal selves (delirium, personality disorders, sexual fetishism). It’s unusual, and at times frustrating in its postmodern knowingness, but what is being told is first and foremost a story.

This is a story without any of the elements that are traditionally held to constitute a setting or a plot. A few characters make an appearance, but they are nameless, spectral shapes, ones that wander in and out of view as the story progresses, briefly embodying their various illnesses before vanishing as quickly as they cameA sufferer of major depression and of hyperchondriasis might eventually be revealed to be the same person, but for the most part the boundaries between diagnoses keep the characters apart from one another, and there are only flashes. On one page we meet a hoarder, on the next a trichotillomaniac; he builds enormous “stacks of worthless objects,” she idly pulls out her pubic hairs while watching television. But the two are never allowed to meet and see if they can work through their problems together.

This is not to say that there is no setting, no plot, and no characterization. These elements are woven into the encyclopedia-form with extraordinary subtlety. The setting of the novel isn’t a physical landscape but a conceptual one. Unusually for what purports to be a dictionary of madness, the story proper begins with a discussion of neurological impairments: autism, Rett’s disorder, “intellectual disability”. The scene this prologue sets is one of a profoundly bleak view of human beings; one in which we hobble across an empty field, crippled by blind and mechanical forces whose workings are entirely beyond any understanding. This vision of humanity’s predicament has echoes of Samuel Beckett at some of his more nihilistic moments—except that Beckett allows his tramps to speak for themselves, and when they do they’re often quite cheerful. The sufferers of DSM-5, meanwhile, have no voice; they’re only interrogated by a pitiless system of categorizations with no ability to speak back. As you read, you slowly grow aware that the book’s real object of fascination isn’t the various sicknesses described in its pages, but the sickness inherent in their arrangement.

Who, after all, would want to compile an exhaustive list of mental illnesses? The opening passages of DSM-5 give us a long history of the purported previous editions of the book and the endless revisions and fine-tunings that have gone into the work. This mad project is clearly something that its authors are fixated on to a somewhat unreasonable extent. In a retrospectively predictable ironic twist, this precise tendency is outlined in the book itself. The entry for obsessive-compulsive disorder with poor insight describes this taxonomical obsession in deadpan tones: “repetitive behavior, the goal of which is […] to prevent some dreaded event or situation.” Our narrator seems to believe that by compiling an exhaustive list of everything that might go askew in the human mind, this wrong state might somehow be overcome or averted. References to compulsive behavior throughout the book repeatedly refer to the “fear of dirt in someone with an obsession about contamination.” The tragic clincher comes when we’re told, “the individual does not recognize that the obsessions or compulsions are excessive or unreasonable.” This mad project is so overwhelming that its originator can’t even tell that they’ve subsumed themselves within its matrix. We’re dealing with a truly unreliable narrator here, not one that misleads us about the course of events (the narrator is compulsive, they do have poor insight), but one whose entire conceptual framework is radically off-kilter. As such, the entire story is a portrait of the narrator’s own particular madness. With this realization, DSM-5 starts to enter the realm of the properly dystopian…

The narrative voice of the book affects a tone of clinical detachment, one in which drinking coffee and paranoid-type schizophrenia can be discussed with the same flat tone. Under the pretense of dispassion this voice embodies a whole raft of terrifying preconceptions. Just like the neurological disorders that appear at the start of the book, mental illnesses appear like lightning bolts, with all their aura of divine randomness. Even when etiologies are mentioned they’re invariably held to be either genetic or refer to other illnesses such as substance abuse disorders. At no point is there any sense that madness might be socially informed, that the forms it takes might be a reflection of the influences and pressures of the world that surrounds us.

The idea emerges that every person’s illness is somehow their own fault, that it comes from nowhere but themselves: their genes, their addictions, and their inherent human insufficiency. We enter a strange shadow-world where for someone to engage in prostitution isn’t the result of intersecting environmental factors (gender relations, economic class, family and social relationships) but a symptom of “conduct disorder,” along with “lying, truancy, [and] running away.” A mad person is like a faulty machine. The pseudo-objective gaze only sees what they do, rather than what they think or how they feel. A person who shits on the kitchen floor because it gives them erotic pleasure and a person who shits on the kitchen floor to ward off the demons living in the cupboard are both shunted into the diagnostic category of encopresis. It’s not just that their thought-process don’t matter, it’s as if they don’t exist. The human being is a web of flesh spun over a void…

If you don’t believe that people really exist, any radical call for their emancipation is just sickness at its most annoying…

For all the subtlety of its characterization, the book doesn’t just provide a chilling psychological portrait, it conjures up an entire world. The clue is in the name: On some level we’re to imagine that the American Psychiatric Association is a body with real powers, that the “Diagnostic and Statistical Manual” is something that might actually be used, and that its caricature of our inner lives could have serious consequences. Sections like those on the personality disorders offer a terrifying glimpse of a futuristic system of repression, one in which deviance isn’t furiously stamped out like it is in Orwell’s unsubtle Oceania, but pathologized instead. Here there’s no need for any rats, and the diagnostician can honestly believe she’s doing the right thing; it’s all in the name of restoring the sick to health. DSM-5 describes a nightmare society in which human beings are individuated, sick, and alone. For much of the novel, what the narrator of this story is describing is its own solitude, its own inability to appreciate other people, and its own overpowering desire for death—but the real horror lies in the world that could produce such a voice.

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