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A Book Review (in The Federal Lawyer, June 2016)

In a Different Key:  The Story of Autism
By John Donvan and Caren Zucker
Crown Publishers, New York, NY, 2016. 670 pages, $30.

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Reviewed by Christopher C. Faille

Autism is part of who I am. Or, at least, I believe so. There’s never been anything so formal as a diagnosis, but people who love me, including some with credentials as health care providers, have told me, usually with some effort at softening the presumed blow, that I am “on the spectrum.” I have long since given up any impulse to argue the point.

I don’t believe I’ve ever owned the term “autism” in public before, so I will use this book review, then, as a coming-out moment. The readers of The Federal Lawyer know something of me, from my numerous book reviews in the magazine. You have had plenty of opportunities to judge both my analytical abilities and the sort of stylistic quirks that enter into my prose style. That doesn’t make you diagnostic authorities, but it does mean that you are an appropriate community to whom to speak about this aspect of my life.

I am in the second half of my sixth decade, and am very glad that in my younger
years I escaped categorization. I was always regarded as rather strange, sometimes as promising, sometimes as a sucker who could be talked out of his allowance, sometimes as the kid who could be goaded into saying funny things, and sometimes as someone stubbornly intent on creating disruptions. I have been regarded, in short, under a lot of headings, but never in my youth was I spoken of as autistic or as an example of Asperger’s syndrome or as anything else of the sort. This is likely for the best: I was well beyond all need for official diagnosis or classification before I started hearing such terms.

Looking People in the Eye

Eye contact is a big thing. For years—for decades—I struggled with it. It isn’t intuitive for me to look people in the eye while I speak to them. But I’ve learned, slowly over the decades, that it isn’t good to look away from their eyes either. People seem to associate that with dishonesty. (Why? I’m not sure. Does the supposed “look me in the eyes and say that” lie detector ever work?) One related problem, though, is that if I look at an interlocutor’s eyes too intently, then he or she will think I’m being creepy. So I’m between Scylla and Charybdis. I try to get it right, to look people just steadily enough in the eyes, but no more steadily than that. It’s tricky.

Neurologically, eye contact isn’t supposed to be tricky. According to the dominant working hypothesis in the study of autism, the human brain, beginning even before the first birthday, develops neural pathways that allow for a “theory of mind,” a process that is supposed to be complete by about age 5. These pathways mean that one thereafter proceeds on the premise that the other per-son, the one at whom you are looking, has a subjective side too and that he is looking at you, too, when your eyes meet. Autism, anywhere on the spectrum, is at its heart a consequence of some disruption in this process.

Yes, autistic folks can figure out that other people are thinking, too, but the important point is this: We have to figure it out—over and over again. The fact that we’re surrounded by other minds is itself
an inference, not a given. So tasks such as judging the right amount of eye contact strike us as puzzling, however much practice we get at them.

In a Different Key

I naturally approached this book with special interest, but with some anxiety as well. Perhaps it was because I find the easy resort to institutional confinement a personal affront. I’ll say more about confinement below.

Autism as an intellectual and medical construction is a product of the 20th century. As In a Different Key explains, the diagnosis of autism as it is understood today can be traced back to the work of Leo Kanner, the founder of the children’s psychiatric department at Johns Hopkins Hospital in Baltimore. In 1942, Kanner wrote to the mother of one patient that he had “come to recognize for the first time a condition which has not hitherto been described by psychiatric or any other literature,” one that consisted of the inability of certain children, including her boy, to relate to other people. He called this condition, “autistic disturbances of affective contact.”

In 1943, he would use “Autistic Disturbances of Affective Contact” as the title of an article he published in a professional journal. But the name obviously required shortening.

Before this time, psychiatrists had some-times used the adjective “autistic,” but they had generally used it to describe a symptom of schizophrenia, not as the name or part of the name of a condition unto itself. Turning in on the self, auto-ism, an inner-driven social withdrawal—this occurs periodically in the life of schizophrenics. But it is not a defining characteristic of schizophrenia: For sufferers with that condition, the social withdrawal comes and goes. For those with autism, by contrast, it is of the essence. This is the case wherever on the “autism spectrum” one finds oneself.

The Legal Profession Since the  Mid-20th Century

For a sense of why this should matter to the bench and bar of the 21st century, one might look at an anecdote early in In a Different Key, about a distinguished midcentury lawyer, John P. Frank (1917-2002). Frank’s young son suffered from a severe brain trauma that impaired his intellectual development, speech, and growth. In the late 1940s, Frank found that every doctor he consulted suggested that there was no prospect for a life for “Petey” outside of an institution. So he consulted with two friends of his who worked outside the medical profession: Justices Wiley Rutledge and Hugo Black. Each advised him in strong terms against trying to raise Petey at home. The father eventually complied, and Petey remained institutionalized until his death from old age in 2010.

Petey Frank was not autistic, and his institutionalization is but a very small piece in the Big Picture of this book. His story is here to make the point that, even for someone such as his well-connected father, who was plainly disturbed by the idea of giving over his son to the care of strangers, there was an almost irresistible momentum in that direction because at-home care for a severely disabled child seemed unimaginable. If this was so in the minds of a former Supreme Court clerk such as Frank and of two justices who were close to him, one has to infer that it was so quite generally.

Around the time that John Frank was agonizing over this, Dr. Benjamin Spock published the first edition of his soon-to-be-famous book on child care. Spock advised against trying to raise a developmentally disabled child in a multi-child home. The parents in such a situation “become too wrapped up in a child who will never develop very far.” After that child’s institutionalization, they “will have more attention to give to their [other] children who need it.”

Much of this new book, by John Donvan and Caren Zucker, correspondents for ABC News, is a celebration of the countertrends that developed in the second half of the 20th century, a celebration in the form of a dis-cussion of the history of autism treatments. Key developments in this history have been driven by parents who resisted the sorts of pressure to which Frank succumbed. Thus, Donald Triplett, the young patient to whom Leo Kanner was specifically referring in that 1942 letter (also “Case 1” in Kanner’s later more formal write-up of the newly named disorder), has lived most of his life outside of institutions, in the town of Forest, Miss., among family and friends. Triplett lives there now as a retiree and a regular presence at the local golf course.

Deinstitutionalization has taken some hits lately, both in the popular culture and in the law journals. There is certainly the chance that it has gone too far in some respects or that it includes its own abuses. But the gist of this book is right. Deinstitutionalization has been much more of a blessing than a curse. It should be celebrated and prized in the hope that its gains will never be lost.

Lawyers, of all people, must understand that. Law is largely the business of classifying people where classifications are necessary (felons versus non-felons, for example). But lawyers ought to get and stay out of the business of classifying people where such classifications are not necessary and where they can do disastrous harm to innocent lives.

Three Controversies Involving Initials

Many fascinating questions are discussed in the course of this thoroughly researched book. I’ll arbitrarily focus on three of them for a bit. Donvan and Zucker give space to controversies over “applied behavior analysis” (ABA), “facilitated communication” (FC), and the measles, mumps, rubella vaccine (MMR).
ABA, a position in the lineage of Pavlov and Skinner, is the view that the cause of autism doesn’t really matter for purposes of treatment. Therapy should be centered on (in Donvan and Zucker’s paraphrase) “breaking complex skills into small components, reinforced by frequent rewards and occasional punishments.” This is controversial on a theoretical level because behaviorism has never been a consensus paradigm in psychology. It is controversial on a practical level in part because practitioners of ABA have brought a baroque imagination to those “occasional punishments.” Donvan and Zucker chronicle the experiments of a UCLA psychologist, O. Ivar Lovaas, who in 1965 actually used a cattle prod to administer electric shocks to autistic children. ABA has never lived down that cattle prod.

That is unfortunate, because ABA, in a somewhat kinder and gentler form, and in a number of variants, now does good work in school systems throughout the United States. It is now a weapon in the hands of the “good guys” in the trend toward deinstitutionalization. It might do even more such good work were it not for the heritage of suspicion left by its early days and Lovaas’ rough edges.

The FC controversy arose because autism patients at the dysfunctional end of the spectrum, those who seem utterly uncommunicative, nevertheless often have quite expressive faces. This observation was included, for example, in the writings of Kanner, who drew attention to the “impression of serious mindedness” on the face of one of his patients, and who wrote that they were all “unquestionably endowed” with unexpressed cognitive potential. Such impressions give their parents and other observers hope that their loved ones’ communication of those locked-away thoughts can be facilitated in some manner, perhaps by friendly hands assisting a patient’s own hands in typing on a keyboard.

That hope became a movement, largely catalyzed by an Australian woman, Rose-mary Crossley, who first developed FC in order to communicate with a young woman diagnosed with cerebral palsy. FC was introduced to the United States, and to the world of autism treatment, by a Syracuse-area activist, Doug Biklen, after a visit to Australia and an eye-opening meeting with Crossley in 1988. The FC movement grew exponentially for a period, but its fortunes quickly reversed in October 1993, with the broadcast of a PBS documentary about a trial in Maine a few months before. That trial had sparked an experiment that demonstrated convincingly that there was no real communication from the autistic “witness,” because the facilitator was in fact guiding the hands she was supposedly just supporting.

This leads us to MMR. In a press conference at London’s Royal Free Hospital on Feb. 26, 1998, Dr. Andrew Wakefield said that children he had seen in the previous year or two had shown autistic behaviors soon after receiving this vaccine, and he speculated on a causal link between the for-mer and the latter. “I do not think the long-term safety trials on MMR are sufficient,” he said. This sent public discussion and debate on autism, and much medical research as well, into what turned out to be a dead end. What Donvan and Zucker call “the vaccine scare” is only now receding.

I won’t elaborate on any of these three subjects, but I recommend that you read the book, and the detailed discussions of each of these controversies, for yourselves. Donvan and Zucker are thorough, conscientious, and scrupulous in giving credit where credit is due, and they accord empathy even where some discredit is due. What I will discuss a little further now is Asperger’s syndrome. Is it simply another name for the high-functioning end of the autism spectrum? Or is it a separate though kindred disorder?

Hans Asperger

As a simple matter of chronology, Hans Asperger has priority over Kanner as the founder of this particular field within child psychiatry. Asperger gave his first lecture on the subject in 1938, and he, like Kanner four years later, used the word “autistic” in a consciously revisionist sense, distinct from its then-established use as a symptom of schizophrenia.

Asperger’s patients, at least superficially, seem to have suffered from a different and far less disabling malady than Kanner’s. Most of the boys Asperger studied (in the words of Donvan and Zucker) “seemed to strive for connection with others, usually adults, but those relationships were filled with anxiety and were undermined by the boys’ difficult personalities, which did not invite warmth and understanding. They failed to form friendships with other children, who teased them mercilessly.”

These boys made little eye contact, seldom picked up on nonverbal signals, and were physically clumsy in a way that exposed them to teasing and ostracizing. The physical clumsiness is a point that puzzles me personally. I own up to it in my own experience, and it is certainly part of the stereotype of the “nerd” that hovers over discussions of Asperger’s. But how does it relate to the other characteristics in this cluster? How in particular might it follow from a glitch in the development of a “theory of mind” as it is hypothetically coded into neuronal connections? Does physical grace imply an ability to see oneself as a spectator would see one?
Also consistent with the “nerd” stereo-type, Asperger’s patients often possessed intellectual skills, though these could seem to people around them to be oddly focused and misdirected. One boy that Asperger described was obsessed with drawing geometrical figures in the sand. In his case, that proved a very functional obsession—that boy would acquire a Ph.D. in astronomy and find a mathematical error in Isaac Newton’s work. Newton? More on him in a moment.

Knowledge of Asperger’s work remained almost entirely confined to the German-speaking world for decades. It wasn’t until the late 1970s that Lorna Wing, a psychiatrist affiliated with Maudsley Hospital in London, brought the diagnoses of autism and Asperger’s into close contact. She did so in part because she thought the phrase “Asperger’s syndrome” (which she coined) would fall more gently upon the ears of concerned parents than the scary term “autism” and in part to bolster her developing idea that autism is a single spectrum or (another term she used) a continuum.

Asperger himself never endorsed the idea that the two disorders are different points of the same spectrum. The one time that he and Wing met and discussed the matter, he pressed his view that the two syndromes are distinct. “We cordially agreed to differ,” Wing wrote later. Wing’s view is now the dominant one, and Asperger’s syndrome is now (usually) used as a synonym for the high-functioning end of the spectrum.

Newton and Leibniz

Asperger’s view is a bit as if the German co-founder of calculus, Leibniz, had refused to contest Newton for credit for that achievement, claiming instead that the two men had each discovered a somewhat different body of mathematics. But Newton’s intellectual heirs had figured out that the differences were a matter of notation only, and had given a certain notational style the name “Leibnizian calculus.”

Aside from the rare publications on the syndrome that now bears his name, what else was Hans Asperger doing during the 1940s? As a physician working in Vienna, Austria, through the years of Anschluss and war, he could not have avoided contact with the Nazi medical bureaucracy. In 1992, when Asperger had been dead for a dozen years and when the World Health Organization included the syndrome named for him in its “international classification of diseases,” pressure mounted for the American Psychiatric Association (APA) to include this syndrome in its Diagnostic and Statistical Manual (DSM). In 1994, the APA included Asperger’s as one of only two new diagnoses admitted into the DSM-IV. As a consequence, a number of influential psychiatrists at the time became very curious about Asperger’s own life story. At first they found little, and no smoking gun.

Herta Schreiber and others

It wasn’t until 2000 that a persistent researcher discovered the smoking gun. In 1941, Asperger signed a letter consigning a two-year-old girl named Herta Schreiber to a facility where, as he surely knew, she would
be killed. The “Spiegelgrund,” an institution in Vienna that served as a killing machine in the guise of a children’s hospital, made a practice of dosing children designated for death with the anti-seizure drug phenobarbital. This would cause a breakdown of lung function spread out over a period of weeks, and the child’s death would be officially attributed to pneumonia.

Herta had been sick “all spring,” suffering from encephalitis, an infection-caused inflammation of the brain, which Asperger thought might be causing her severe personality disorder, seizure disorder, or, in the language of the day, “idiocy.” Asperger had a final solution for the problem. He wrote a letter about Herta that echoed Nazi ideology: “When at home, this child must present an unbearable burden on the mother, who has to care for five healthy children. … Permanent placement at the Spiegelgrund seems absolutely necessary.”

The records of the Spiegelgrund include notes from a conversation with Herta’s mother weeks later, when she said through tears that she recognized that Herta’s death would be better than allowing her to live in a world where she would experience constant ridicule and cruelty. No third choice was imaginable in the Vienna of the time. Herta died of “pneumonia” on Sept. 2, 1941.

A Reasonable Inference

Nor was Herta unique, except for the clarity of Asperger’s signature in connection with her name. She was not his only connection with the grisly machinery of the regime. Other newly unearthed records show that, in February 1942, Asperger represented the city of Vienna on a commission that reviewed the health status of 210 children living in a mental hospital. The commission split those 210 into four groups: those still too young for compulsory schooling, those who were of the right age and could benefit from schooling, those too old, and those who were of the right age but who were not educable. They assigned 35 children to that final not-educable group. They were to be “dispatched for Jekelius Action.” That is not a very mysterious bit of code: Erwin Jekelius, the fiancé of Hitler’s younger sister, was the director of the Spiegelgrund.

I suspect that there is a reasonable inference to be drawn here, which Donvan and Zucker don’t draw, presumably out of caution. It is that it is not just coincidental that the patients on whom Asperger made
his famous observations, those who came to be the empirical basis for his “syndrome,” were high functioning. They were high functioning because low-functioning children with analogous difficulties would become subject to Jekelius Action rather than to any prolonged period of clinical observation. The case for treating Asperger’s as something distinct from autism may have always rested on a very grim sort of evidentiary selection bias.

I believe it is best if we just call the condition of such folks, myself likely included, “high functioning autism.” When that gets to be too much of a mouthful, just say HFA. There is no need to memorialize Hans Asperger.

Since Sandy Hook

There is no need to memorialize Adam Lanza, either, but I do need to mention him in order to conclude this overlong review of a very fine, thoughtful, and moving book. Lanza was the perpetrator of the Sandy Hook Elementary School shooting, in December 2012. As part of the normal course of events in the United States, after such a shooting, there was first an outcry about the ease with which the perpetrator obtained the guns, in this case a Bushmaster XM 15-E2D and a Glock 20SF, with which he shot and killed 20 children and six adults.

Then there was a backlash against that outcry. Because Lanza had once been diagnosed with Asperger’s syndrome, the backlash took the form, in some quarters, of a demand to know why someone with Lanza’s mental illness was walking about free. In other words, part of the response to Sandy Hook was a backlash against deinstitutionalization.

Fortunately, the re-institutionalization bandwagon never gathered steam. But it may remind some of us that the benefits of a “spectrum” understanding of autism aren’t just empirical. They are moral. By postulating a continuum from behavior that it quite normal though a bit quirky on the one end, to that of the nightmare cases of people who are locked up in their own skulls and stuck in meaningless repetitive behaviors, on the other end, scientists such as Wing remind us that normalcy itself is precarious. If we make it a habit of institutionalizing people simply because they share some characteristic with a mass shooter, then few if any of us will be safe.

Comments

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  3. Wow, that is a lot of interesting information you packed into one blog post! I did not know all that information about Asperger's Syndrome but found it very interesting to learn about. I know a few people on the spectrum and this has given me a little more insight to their diagnosis. Thank you for sharing!

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