An old woman reading — a magnificent painting done in the 17th century Netherlands
There is indeed one element in human destiny
that not blindness itself can controvert. Whatever
else we are intended to do, we are not intended
to succeed; failure is the fate allotted. Our business
is to continue to fail in good spirits. — Robert Louis Stevenson
Friends,
Accept what you are.
Do what you can.
Be glad you can do that.
These are lines I tell myself or some version of them. They help me carry on. I then try to follow them doing what’s in front of me to do that day, and doing what I tell myself I want to and shall do for the sake of events coming up that I can participate in. Participate to the best of my ability and if I can’t do what others do, live with it.
Very sad today because dear close friend for the past 4 years now has been diagnosed with terminal cancer. It has been so hard to live since Jim is gone. One can say live in and on yourself but to do this in my state of several dysfunctions takes strength, courage, cheer and yes friendships.
This one is hard. I have a new understanding — much better, much more accurate — of friendship, its limits as well as its gifts, can picture how many people live on themselves and with others. It’s probably salutary for me to see better, more clearly (like Lear is told to) but honestly I would have preferred to go to the end of my chapter without seeing. In reason or logically it should make me stronger to be able to see clearly, but like when I’ve done something that’s hard for me to do and then people tell me, each time it will get easier (say traveling or some technology), and the act(s) don’t at all get easier (but come accompanied by the same anxiety, intense reluctance, and when they are over the same intense relief). Perhaps seeing makes things more doable because I realize how others are what’s called striving or struggling to do them too. (Of course for some these acts come easy; such people are not admirable, just lucky in their genes, or circumstances.) I’m not sure seeing where others experience similar emotions and where they don’t, makes things more doable.
Roger Fry, self-portrait
“Second-hand books are wild books, homeless books; they have come together in vast flocks of variegated feather, and have a charm which the domesticated volumes of the library lack. Besides, in this random miscellaneous company we may rub against some complete stranger who will, with luck, turn into the best friend we have in the world.” — Virginia Woolf
I’ve been immersed in one of Virginia Woolf’s it seems to me now hundreds of masterpieces of writing, this one a full length biography of Roger Fry. She grasps that powerful turning points for him later in life were when he faced defeat, recognized what he could do and then flourished within his limitations so as to live out his extraordinary gifts. He was tremendously lucky in who he was born to: he automatically went to the best schools, had connections to get to places where he could meet minds equivalent in finest and insight to his own, and he was born sociable: could make and knew how to sustain friendships. I am so moved by his life style: he was partly homosexual and bisexual and sustained deep relationships among men and women that were unconventional. His rooms were beautifully decorated by true art (not what would fetch money or give prestige necessarily at all) and filled every where what he was doing: books, papers, easels, paint, his food on plates because he was too taken up with what he was doing to keep up with tidyness. A man after my own heart. Fry’s art was one she understood, his principles those she lived by as Fry had understood hers: she reveled in his life, wished she could have lived it.
I’m comparing Woolf’s book to Samuel Johnson’s life of Richard Savage, considered his masterpiece in biography. What a contrast from the point of view of failure. Savage a self-deluded wildly behaved “genius,” born with no advantages but that of “intellectual greatness” (Johnson’s phrase) whose “eminence” because of such gifts just made him a better known instance of of how such things contribute very little to worldly success, happiness, or fulfillment — all of which Roger Fry knew, partly the result of his having been born with the extrinsic advantages Savage lacked and didn’t know how to or in his world could not acquire. It was not just bad luck as Savage also had some innate awful traits of vanity, luxury, scorn for those beneath him (as he saw this), and he could not control ill-advised responses, like anger (when he desperately needed to). His sexuality is not clear; at the time (not in Johnson’s biography) he was linked to at least two women, one Eliza Haywood supposedly had a child by him, but I wonder if he was homosexual or bisexual. It is as extraordinary a story as Fry’s is, only far more flagrantly breaking all taboos. The man may have been in effect homeless, living on the streets, in taverns, for some 28 years; at 46 he died in debtor’s prison, surely from exhaustion and the terrible wear and tear of his body and mind as much as anything else. Johnson was 35 at the time he wrote the biography, living on little bits of money, and saw a possible fate for himself in Savage.
“They are surely happy,” said the prince, “who have all these conveniencies, of which I envy none so much as the facility with which separated friends interchange their thoughts.” — Samuel Johnson, Rasselas
Van Gogh, A Field with Poppies — Woolf begins and ends her biography of Fry with his utterances about poppies
I’ve been following a Future Learn course on autism for three weeks now and have some thoughts about it. It’s done by a group of people running a center in a British university (Kent) for people on the autism spectrum. They have a variety of degrees and positions that legitimate them — and give them salaries. What are they doing with this precious four weeks in public on the Internet they are given?
They persist in asking, Does Autism Exist? & seem to doubt there is such a condition. They know better. They present evidence it does, two of them are clearly autistic themselves — or Aspergers Syndrome as the high end of the condition, where people come closest to non-disabled functioning and are highly intellingent in reasoning, writing, reading, understanding, used to be distinguished. Logically from what they show, if it’s amorphous, cannot be confirmed by scientific method that is unassailable, and manifests differently, there is a (laughably) strong base of similarity. Like cancer, the basic disability or problem comes in different manifestations, but we don’t doubt cancer exists.
I’ve decided that they mean to counter intense hostility by the neurotypical world: my experience is the hostility only goes away when a NT has an autistic person in their family or as a friend. Even then, not all the time, and many inside a family especially (where they cannot get rid of the tie) want to doubt the person is autistic. How painful this is. How painful this Future Learn course. It means such people don’t want to recognize the autistic and refuse to acknowledge they exist. I know this is what people without disabling conditions do with disabilities (I’ve reviewed & read enough books on disability to know this), and with this one mental they can deny even more readily.
So I don’t exist. One of my daughters doesn’t exist. Aspergers Syndrome which describes the part of the spectrum she is on and I’m almost does not exist in the book any more.
The Future Learn course is doing little good to the Aspergers or autistic person: by spending so much time doubting autism, the speakers don’t have the time to go into individual characteristics. Or they don’t want to — two of the three weeks have been unusually short (less videos, less essays than most such courses). I suspect they fear evoking ridicule and hostility. Open objections that could become obnoxious. So they don’t talk about specifics autistic people can’t do, only try to assert through photos how autistic people are social, are made happy by having friends, just don’t know the unwritten codes and social behavior that gains and sustains them.
What they have been willing to discuss (again in general terms) are depression & anxiety as “co-existing morbid conditions.” The language chosen is, shall we say, unfortunate?
Then they show reluctance to say these two linked conditions result from autism & are a response to the way society treats the autistic and how society is organized along neurotypical lines w/neurotypical expectations. So I must spend 4 traumatic hours trying to upgrade a computer with someone’s help so I can even have an app for a power-point presentation; today four more for installation; and now my older daughter may help me learn to use this software and I know that still I might not be able to do such a thing in public. Too nervous. Or I can’t travel alone without it becoming an intense ordeal because I know I get lost. These are crippling conditions and it’s natural to be depressed, would be unlikely not to produce anxiety.
I’m sure they recognize the worst problems of the disabled are mostly the result of the way the larger society refuses to recognize and help them. Books on disability begin with this insight (see, for example, Fictions of Affliction). Deaf people have gone furthest with this, declaring themselves a simply culture, which is not quite so. Not to hear is to live in danger. The alphabet is based on oral sounds
You are given room to comment as “a learner” in these Future Learn courses and I watch people dialoging or commenting alongside one another. So I told the people who invented and have enacted this course they are not helping the autistic by this approach and they are not countering the hostility of the non-autistic by their innocent films (showing autistic and non-autistic babies interacting and then supposedly disproving stereotypical pictures of how autistic people look).
It’s them being timid and is, unfortunately, matched by timidity I’ve seen in other of these Future Learn courses: say on colonialism. The people there were afraid to offend (I now realize from having taught two courses in the Booker Prize book formula and discovered that people drop the course because they identify with the settler colonialists, the imperialists) and spoke in jargon-filled words (like marbles in their mouths) lest they be understood too readily.
Katy Murphy as Jenny Wren from the 1998 Our Mutual Friend by Sandy Welch
From Charlotte Mew’s The Changeling
Sometimes I wouldn’t speak, you see,
Or answer when you spoke to me,
Because in the long, still dusks of Spring
You can hear the whole world whispering;
The shy green grasses making love,
The feathers grow on the dear grey dove,
The tiny heart of the redstart beat,
The patter of the squirrel’s feet,
The pebbles pushing in the silver streams,
The rushes talking in their dreams,
The swish-swish of the bat’s black wings,
The wild-wood bluebell’s sweet ting-tings,
Humming and hammering at your ear,
Everything there is to hear
In the heart of hidden things.
But not in the midst of the nursery riot,
That’s why I wanted to be quiet,
Couldn’t do my sums, or sing,
Or settle down to anything …
I’ve finally taken to sitting in my sunroom, only this week through the windows I saw much rain. It is very quiet there, no TV, no computer, no radio, just a silent clock. A comfortable chair, tables, lamps, some of my books, two smaller bookcases of DVDs, a thick cream-beige rug, the walls a soft light green. I read more this way. Settle down to my book friends.
My room of my own in the evening: during the day imagine Snuffy cat sitting along the top and Clarycat by the radiator, me in the chair …
I know some peace here,
for peace comes dropping slow
Miss Drake
Under the Sign of Sylvia II 
I love that you spoke your truth to the course creators. Society’s awareness can leap ahead in one area and inch along excruciatingly in others. I’m not aware that you’ve shared yourself this way before. The courage of a writer is one of the most moving things.
Yes I hope I can leave it there, in other words do not receive any responses which justify the Future Learn course people’s timidity ….
A friend’s comments suggested this to me about this Future Learn’s inhibited way of presenting autism, half denying the condition exists as a common disability: To openly admit a minority population of autistic people, is to risk such people becoming “othered” and pathologized as GLBQT people are. Advertising and making generally known far more about autism among great swatches of the population had the opposite effect intended. The person is presented with great hostility without acknowledging this and immediately “courses” are proposed to change them. NT parents of autistic children try this. Most US psychology for depression & anxiety today is training in social coercion of the self (CBT plus drugs). To label people publicly is risk not getting an important scholarships, fellowships – and with all that has been put in public Trump & his regime are cutting decently trained social workers in schools helping all sorts of disabled people to navigate the places’ sharks. (“Mentally ill people, not guns, cause these regular US slaughters.”). She asked how do we navigate this? I am not naive enough to believe the truth will set us free
When I followed the Future Learn course on autism, I (and others following) found grating the leader’s continual repetition of the idea there is no such thing as autism, when all she was presenting went to demonstrate there is. I felt she was bending over backwards to people who would not be swayed by her course anyway.
Well the NYRB has printed a review-article by Lisa Appignanesi which demonstrates that Hans Aspergers was a Nazi sympathizer and his theories about asocial children were used to kill (yes kill) children so identified. It is a damning indictment. She is reviewing a very angry book by Edith Sheffer who (if you read carefully) dedicates it to a son who she feels the categorization hurt badly. Aspergers in this article is something people are accused of, stigmatized by and is an invention, one of these medical categories that gains popularity (like bipolar) because it is seen to be useful. Sheffer apparently concedes (as does Appignanesi) that services are made available, help to children when young, that help enormously, but notes that the growth of the term coincided with the determined cut down of funds to psychiatry, the new turn to CBT with its social coercion techniques (think good thoughts, join a club) and the closing of asylums. Where asylums did not close and were decent places, the numbers of diagnosis did not rise.
She objects to the use of this term as a primary self-definition.
This kind of attack was not mentioned in the Future Learn course. Appignanesi says that autism as a theory is an outgrowth of the development of child psychology in the 1930s. It’s probably not a coincidence that the first definition in medical handbooks of homosexuality as a deviant illness emerges in the 1940s. We do have to remember psychiatrists come with their prejudices too. I know from experience there is an intransigent dislike of autism because an intransigent hostility towards the person deemed non-social, lacking “community competence.” And the future learn course relied heavily in the early phase of the weeks on studies of children and different ones developing differently.
What does remain seemingly irrefutable in the article is Hans Aspergers did evil using his theory.
NYRB, July 19, 2018
http://www.nybooks.com/articles/2018/07/19/hans-asperger-dr-death/
It is behind a pay wall.
Long-deceased Viennese doctors, unless they’re called Freud, rarely make newspaper headlines. But one has recently done so on both sides of the Atlantic. On April 19, the academic open-access journal Molecular Autism published a detailed article by the Austrian medical historian Herwig Czech about Hans Asperger, the Viennese pediatrician whose name has since the 1980s designated a syndrome that forms part of the wider autism spectrum. Like many prominent Austrian medical figures of his generation, Asperger’s wartime record of involvement in some of the deadliest aspects of Nazi medical practice had long remained unquestioned or was glossed over. Now he stood exposed as having been far from an opponent of Nazi thinking; racial hygiene was, in fact, at the center of his beliefs.
The historian Edith Sheffer’s book Asperger’s Children was published a month after Czech’s exposé. Her research was contemporaneous with his and draws on the same archival sources, but books take longer. Hers is an impassioned indictment, one that glows with the heat of a prosecution motivated by an ethical imperative. She charges Asperger with a heinous medical crime: sending at least thirty-seven of his child patients to their deaths. Herta Schreiber, who had suffered meningitis and diphtheria, was just short of three when her de facto death certificate was signed, in part on the grounds that she was “an unbearable burden to the mother.”
Accused with Asperger is the whole of the Nazi ideological apparatus that converted a diagnosis—a highly personal form of human assessment—into the first rung of a routine killing machine. Finally, Sheffer wants to indict the entire capacious category of autism, which she argues includes too many different kinds of people alongside the high-functioning, often talented, but somewhat relationally challenged people who have been given the diagnosis of Asperger’s—a diagnosis that for the US has now been shifted, in the most recent Diagnostic and Statistical Manual of Mental Disorders (DSM), into the broader autism spectrum.
The term “autistic” originated with the talented Eugen Bleuler, director of the Burghölzli, the pioneering psychiatric hospital in Zurich. In the early part of the twentieth century some of Europe and America’s best physicians spent at least a season there. Bleuler valued Freud’s insights and took a cue from psychoanalysis in his efforts to attend to unconscious mental processes and listen to patients’ words. Among the staff was Carl Jung, whose patient Sabina Spielrein also became a well-known psychoanalytic practitioner and the teacher of the famous psychologist Jean Piaget. Patients were seen individually twice a day: doctors were instructed to write down everything they said, whether or not it sounded like nonsense.
In the detailed description of the group of schizophrenias he included in a 1911 book, Bleuler coined the term “autistic” to characterize thinking—something that, unlike many, he was certain was going on in his patients—and feeling that were more than usually introverted, self-absorbed, and lashed with fantasies. He said he owed the term to Freud’s “autoerotism,” which described an infant’s inner fantasy life prior to any engagement with the external world. Autistic thinking took place “in symbols, in analogies, in fragmentary concepts…in crude offenses against logic and propriety.”1 In Bleuler’s understanding, schizophrenic patients suffered from a breakdown in the relation between thoughts, feelings, and actions; from ambivalence (another new term, which Freud picked up from him), as well as from delusions and hallucinations. Freud folded the idea of autistic thinking into his own theory of the narcissistic state of earliest infancy, when inner and outer life were not distinguishable.
Autism as a separate diagnostic category did not exist for Bleuler, Freud, or indeed for any doctor until 1943. What brought it into being was the birth of a new field: child psychiatry, with its close observation of behavior and its measurements and assessments carried out in schools, hospitals, or institutions.
Bleuler’s patients were all adults. Children, if they were seen to be mentally ill or considered “deficient” in some way, were put in the care of hospital neurologists (as Freud had been, in his earliest medical position) or institutions. Then, throughout the 1920s, psychoanalytic thinkers like Melanie Klein and Anna Freud turned their attention to the inner life of the infant and child. Theories of child development soon arose, many of them based on the close observation of behavior. It was this latter emphasis on behavior rather than on inner life that tilted the balance toward the kinds of categories today’s DSM uses to classify mental disorders.
A stand-alone category of early infantile autism didn’t come into use until 1943, when the psychiatrist Leo Kanner published his “Autistic Disturbances of Affective Contact” in the journal Nervous Child. The article, heavily endebted to his Austrian colleagues Georg Frankl and Anni Weiss’s work in Vienna’s Curative Education Clinic, concentrated on eleven young patients, eight boys and three girls, who had been observed and assessed by a variety of diagnostic tests, plus parental reports. Kanner argued that despite the borrowing of Bleuler’s term, these children’s profiles were not precursors of adult schizophrenia. What they had in common was an “extreme aloneness.” They had no interest in others and had not established relationships with their parents or other children. They had, however, a good relationship to objects that didn’t change in appearance and position. Their speech was disturbed in various ways; they had an anxious and obsessive desire for sameness that manifested itself in repeated acts and speech. They also had excellent rote memory. Kanner’s children all had professionally successful parents, who he noted were not warmly affectionate toward their offspring: this led him to the rather unhappy later hypothesis that “refrigerator mothers” might have something to do with his small patients’ autism.
In Germany as well as Austria during the Nazi period, death, as Sheffer notes in her book, was often “a treatment option” for doctors. With the aim of purifying the state, Nazis designated not only Jews, Roma, and homosexuals as toxic subjects—the first two slated for elimination—but also the disabled, those of “inferior hereditary material,” patients in mental institutions, and children who were judged likely to become an ongoing drain on the public purse. Young people who didn’t or couldn’t conform, who were not gemeinschaftsfähig—able to demonstrate what Sheffer translates as “community competence”—regularly ended up in the so-called T4 euthanasia program, named after its headquarters, Tiergartenstrasse 4 in Berlin, home of the Charitable Foundation for Curative and Institutional Care.
In Vienna, whose population enthusiastically welcomed the Nazis, such children were sent to be murdered at the notorious Spiegelgrund, part of the Steinhof mental hospital complex in the Vienna Woods. Ironically, the Steinhof itself had been designed by the great architect of the Vienna Secession, Otto Wagner, in the reforming first decades of the century, when it had been seen as a pioneering project to improve the lives of the ill. “The child euthanasia program reveals an intimate dimension to extermination,” Sheffer writes:
Doctors personally examined the children they condemned. Nurses personally fed and changed the sheets of children they killed. They knew the children’s names, voices, faces, and personalities. Killings were typically done in the children’s own beds. Death came slowly, painfully, as children would be starved or given overdoses of barbiturates until they grew ill and died, usually of pneumonia.
Sometimes their brains or other body parts found their way into research jars—a fact only disclosed in the late 1990s.
Asperger was part of the assessment apparatus that determined the fate of such children. Though no death warrants signed in his name exist, and though he claimed, like so many of his countrymen did after the war—despite prior vocal enthusiasm or fellow-traveling—never to have been a Nazi sympathizer, it is clear from the archival evidence Sheffer expertly amasses that he knew he was signing off on children’s fates. Crucially, too, his notions of what constituted “autistic psychopathy” in childhood, which he described most fully in his 1944 treatise of the same name, were deeply influenced by Nazi ideology.
Earlier researchers, like the science journalist Steve Silberman in Neurotribes: The Legacy of Autism and the Future of Neurodiversity (2015), have claimed that Asperger—who lauded his autists’ special, if eccentric, talents—was neither a Nazi sympathizer nor a participant in the euthanasia program. Silberman, like many in the field, may have been relying on the redoubtable German developmental psychologist Uta Frith, who spread Asperger’s fame from her base in the UK and remained willfully blind to his implication in Nazi ideas and practices. Perhaps the photographs of him have counted in his favor. They show a tall, fair man of impeccable bearing who would look good in the short trousers of the Wandervogel, the boy-scout-like groups he and the Nazis favored. Asperger did use some positive language about the more educable children in his care, but Sheffer’s analysis clearly tilts the balance against him.
Born near Vienna in 1906, Asperger trained at the city’s university during the 1920s. It was a time when an experimental children’s clinic, focusing on Heilpädagogik—which Sheffer translates not as “therapeutic” but as “curative” education—flourished under Erwin Lazar. Like many other doctors and psychologists across Europe and in the US after World War I, Lazar was interested in “dissocial” youths and in distinguishing between the social, physical, and psychiatric reasons for their difficulties or criminal behavior. Ideas of therapeutic education abounded. August Aichhorn, who was persuaded by Anna Freud to run a child guidance center for delinquents alongside the Vienna Psychoanalytic Society, used these cases as the basis for his famous book Wayward Youth (1925). It was translated into many languages and reviewed in the UK by Donald Winnicott, the pioneering pediatrician and analyst.
Poverty, a desperate home life, and parental predations began to be seen as shaping these children’s psychological and mental lives and contributing to their delinquency. Yet once the social, the psychological, and the medical were conflated, it made a difference whether they were being assessed from the political left or the political right. For those in the latter group, a “wayward,” rebellious youth who didn’t fit into the normal cohort could land in a general category of undesirability—those “defective” individuals who were, according to right-wing politicians, a burden on the nation and, according to eugenicists, harmful to what we would now call the gene pool.
In Austria and Germany, as in the rest of the West since the nineteenth century, eugenic thinking was popular. In Britain—where it was launched in the 1880s by the statistician Francis Galton, Darwin’s half cousin, who was much influenced by his Origin of Species—the emphasis of such thinking lay largely on positive eugenics. Reformers both on the left and on the right supported intelligence testing and “breeding for the best,” in the hope that the general “standard” of the population would be raised. In Scandinavia, and particularly in Nazi Germany and Austria but also in the US, the emphasis was on negative eugenics. Forced sterilization programs for “undesirables” of all kinds persisted after World War II. North Carolina continued its enforced sterilization program of the “mentally defective or feeble-minded” until 1977. Five thousand of the 7,686 people sterilized there were black. Indeed, the wide acceptance of sterilization in various countries may be one reason that the Nuremberg Trials paid little attention to this heinous aspect of Nazi purification policy, which compounded sterilization with euthanasia.
Hans Asperger was a self-proclaimed eugenicist and a right-wing Catholic. He worked briefly with the staff of the progressive clinic that Erwin Lazar, a student of Bleuler’s, had led. It was in this clinic that many of the earliest ideas on autism originated, in particular with two of its talented staff who would soon emigrate to America. The Nazi sympathizer Franz Chvostek, who ran the so-called swastika clinic at the University of Vienna, became his ally, and he was abetted in his climb through the ranks when the Vienna Children’s Hospital was taken over by Franz Hamburger, an ally of Chvostek’s. Both men were known eugenicists and believed in mass sterilization. Hamburger fired most of the hospital’s Jewish staff, and in 1931 Asperger, aged twenty-five, became one of his early appointees.
In 1934 he was made head of the Curative Education Clinic, where he worked alongside the notorious Erwin Jekelius, an early SA member. With Hamburger, Asperger took part in the “Motorized Mother Advising” unit, traveling the Austrian countryside to provide medical advice to parents, but also creating a register of “hereditary feeblemindedness,” among other ills. After the Anschluss, Sheffer writes, Asperger’s other professional comrade, Jekelius, became “the most prominent figure in child and adult euthanasia in Vienna, directing the killing centers of Spiegelgrund and Steinhof.”
Asperger first mentioned “autistic psychopathy” in 1938, but it had already been described by two talented Jewish staff in the clinic earlier in the 1930s: Georg Frankl and his soon-to-be-wife, the psychologist Anni Weiss. In 1937 Frankl emigrated to the US with the help of Leo Kanner. At Johns Hopkins he worked with Kanner and eventually Weiss, who had emigrated in 1934 and spent a few years at Columbia. In Vienna they had together identified in high-functioning children “the disruption of affective contact” that became a classic part of the autistic spectrum. Asperger never credited his Jewish compatriots in his speeches or writings.
Sheffer probes Asperger’s affinities with Nazi psychiatry, particularly his use of the term for soulful belonging, Gemüt, at once an assessment of character and of unity with the Volk. A failure in Gemüt slipped into definitions of psychopathy: the term gemütlosen Psychopathen was applied to children who were withdrawn, willful, isolated, whose “confinement of the self…led to a narrowing of relations to their environment.” Not to conform or fit into the state’s stereotype of a healthy body and a healthy mind could mark one for elimination.
Children born out of wedlock, teenage loners, “delinquents,” unconventional adolescent girls whose stepfathers and stepmothers worried about their sexuality—all such undesirables could find themselves with a fatal diagnosis. Killings in Spiegelgrund began on August 25, 1940. By the end of the war, at least 789 children had perished under the euthanasia program; some had physical, some mental problems, and others simply didn’t conform to the time’s definition of “normal” and couldn’t, according to the doctors, be integrated into the community.
Sheffer dramatically incorporates the voices of the few children who survived the sadistic terrors of the psychiatric regime into her account, as well as extant case notes. This makes for an anguishing text. It also gives one pause. How did Uta Frith—who taught many of the neuropsychologists and cognitive psychologists who now lead the field and, in 1991, made the first English translation of Asperger’s text on autism—manage to overlook his Nazi affiliations? Sheffer tells us that Frith chose not to publish Asperger’s preface, which gives a clear indication of his Nazi sympathies. But then the city of Vienna, ever slow to acknowledge its record of active collaboration while pleading its “occupation” under Nazi rule, only memorialized the children who had been killed at Spiegelgrund in 2002. One of its chief euthanizing medics, Heinrich Gross, like Asperger himself, went on to have a successful postwar career.
Starting in the 1960s, the numbers of children with “autism syndrome” diagnoses rose and rose. Nonpsychoanalytic researchers gained prominence in the field and rejected Kanner’s theories about “refrigerator mothers.” Instead they favored measuring behavior to abet epidemiological research and the study of entire populations. What we now call evidence-based medicine, which focuses on statistics rather than individuals, was on its way. An epidemiological study in Britain by Victor Lotter in 1966 showed that autism was to be found in 4.5 of every 10,000 members of the child population. This number kept rising as institutions for the care of the mentally ill were closed throughout the 1960s and attempts were made by governments to integrate all children into the school system.
The figures also grew because the definition of autism syndrome now stretched to include children who had never acquired speech and might suffer from various kinds of “retardation.” With this reclassification, by 2006 the reported rate was 116.1 per 10,000. As the historian Bonnie Evans has noted, in France, where institutions for “retarded” children did not close, the numbers of people diagnosed with autism remained small.2
Meanwhile Britain and the US shared experts and evolving descriptive language for a range of behaviors and conditions that fell into the autism spectrum. In the third edition of the DSM, autism moved out of the diagnosis of adult schizophrenia to become a subcategory of “pervasive developmental disorders” (PDD). By the time DSM–IV was published in 1994, the criteria for a diagnosis of autism were “a qualitative impairment in social interaction” and “communication,” plus “restricted, repetitive and stereotyped patterns of behavior, interests and activities”—all setting in before the age of three. The diagnosis also included a delay or abnormal functioning of symbolic or imaginative play.
Asperger’s name first appeared in English-language medicine in 1981, when the British psychiatrist Lorna Wing published an account of a syndrome she named after him, drawing on his 1944 treatise on autistic psychopathy. In that paper, Asperger described children, some of them “little professors,” who lacked the ability to interact with others. “Asperger’s disorder,” a new subcategory of PDD included in DSM-IV, was distinguished by the fact that children showed no delay or deficit in intelligence or cognitive abilities or verbal communication, but like other autistic children exhibited impairments in social interaction and behaved in repetitive and ritualistic ways. Soon, Asperger’s became widely known as the high-functioning end of autism. In the popular media it was variously attributed to nearly all men and certainly all nerdy men: brilliant computer geeks, scientists, husbands who never adequately looked at or spoke with their wives.
It is unclear whether this common usage contributed to Asperger’s disorder disappearing as a separate diagnosis from DSM–V (2013) and being merged into an autism spectrum disorder. (Asperger’s remains in the International Classification of Diseases, which is maintained by the WHO.) We don’t know whether the autism spectrum will eventually emerge as a single neuro-developmental disorder with causes that scientists will track, whether the current pandemic is linked to environment or genes, or whether it’s a single disease at all (rather than a reclassification of various others).
What is clear is that by now the disparate cohort who bear the diagnosis of autism has grown hugely, and that for many such people their diagnoses have had a primary part in their self-definition. For some, this medical identity can urge them toward much-needed special care or special schooling. It can also have, as Sheffer indicates, a negative effect—perhaps like all group identities, which assume similarity where there is substantial difference. This book is dedicated to her son, Eric, who she indicates has suffered from the “act of classification.”
The philosopher of science Ian Hacking has wonderfully described the phenomenon of diagnostic categories “making up people.” A large set of social factors contribute to the popularity of a diagnosis, which in turn creates the lenses through which we see ourselves and others. The growth of the autism diagnosis has been set in motion by patient activism, statistical conflation, websites, blogs, and chat rooms, art exhibitions, provision of services specifically for that diagnosis, media portraits, Web and medico/political campaigns, books such as Andrew Solomon’s prize-winning Far From the Tree, and the attention of talented writer-doctors such as Oliver Sacks. All these combine to create a particular kind of being who, for better or worse, bears an identity that is a medical diagnosis, most often a psychiatric one that at once stigmatizes and destigmatizes. In Rewriting the Soul (1995), Hacking traced the noisy rise of Multiple Personality Disorder. That diagnosis has now all but disappeared.
Sheffer clearly wishes the diagnosis that bears Hans Asperger’s name would disappear, and indeed any “totalizing label based on varying traits” rather than a set of physiological causes. Autism imprisons children in a single classification and affects their being in the world and their treatment by others.
It may be that because of Sheffer’s work, as well as Czech’s, Asperger’s name will disappear from diagnostic classifications and fade from the popular consciousness. Whether that will suffice to dismantle the entire category of autism is doubtful. There are too many vested interests in the campaign for greater recognition, research funds, and services to sufferers. Campaigners, as well as many doctors and psychologists, are vocal in repeating that early diagnosis reduces parental anxiety and children’s loneliness, provides access to special schools, and helps children develop in the best possible way. Until another set of classifications arrives to deal with the considerable challenges that now go under this name, autism will likely be with us.
If I have one cavil with this impassioned book it is that Sheffer, in making her case against Asperger and Nazi mental health policy, perhaps too readily and speedily folds the enthusiastic and necessary reforms of the 1920s welfare state—with its far-reaching hopes of improvement for an impoverished class and hapless children—into the vicious Nazi state. Of the tireless medical reformer Erwin Lazar, she writes that while “seeking to improve the care of children,” he “expanded a system that in time would ultimately control and condemn ‘dissocial’ children.” It is true that a state that prioritizes society and the social good may end up creating an assessment apparatus with norms of behavior that sometimes lead to the ostracizing of those who are different and lack Gemeinschaftsfähigkeit or “community competence.” But this also happens in many states that prioritize individual rights and liberties and have no welfare apparatus whatever. As many countries after World War II have shown, welfare arrangements need not lead a state to do away with its own citizens.
1
Eugen Bleuler, Dementia Praecox or the Group of Schizophrenias, translated by Joseph Zinkin (1911; International Universities Press, 1950), pp. 66–67. ↩
2
“How Autism Became Autism: The Radical Transformation of a Central Concept of Child Development in Britain,” History of the Human Sciences, Vol. 26, No. 3 (July 2013). ↩