Understanding Autism

Parents, Doctors, and the History of a Disorder

Chloe Silverman

• Publisher: Princeton University Press
• Year: 2011
• ISBN:
  9781400840397
• Topic: Ciencias sociales
• Subtopic: Antropología

How the love and labor of parents have changed our understanding of autism Autism has attracted a great deal of attention in recent years, thanks to dramatically increasing rates of diagnosis, extensive organizational mobilization, journalistic coverage, biomedical research, and clinical innovation. Understanding Autism, a social history of the expanding diagnostic category of this contested illness, takes a close look at the role of emotion—specifically, of parental love—in the intense and passionate work of biomedical communities investigating autism.Chloe Silverman tracks developments in autism theory and practice over the past half-century and shows how an understanding of autism has been constituted and stabilized through vital efforts of schools, gene banks, professional associations, government committees, parent networks, and treatment conferences. She examines the love and labor of parents, who play a role in developing—in conjunction with medical experts—new forms of treatment and therapy for their children. While biomedical knowledge is dispersed through an emotionally neutral, technical language that separates experts from laypeople, parental advocacy and activism call these distinctions into question. Silverman reveals how parental care has been a constant driver in the volatile field of autism research and treatment, and has served as an inspiration for scientific change.Recognizing the importance of parental knowledge and observations in treating autism, this book reveals that effective responses to the disorder demonstrate the mutual interdependence of love and science.

One

1

Research Programs, “Autistic Disturbances,” and Human Difference

Historians of medicine like to make the point that explanations for disease reflect the historical moments in which those explanations were produced. They incorporate not only clinical observations but also notions of the “good life” or of the “typical person” and anxieties about the pressures and stresses to which human bodies and minds are subject.¹ Diagnostic categories are mutable things. They make groups of subjects visible and distinct by describing them, but they then set them free to carry on their business, to resist, reshape, and reform that definition through their own actions. In other words, disorders constitute a modern process for creating types of humans, or what Ian Hacking calls “making up people.”²

Disorders are useful ways for doctors to think about medical categories, but just what symptoms—or type of person—a disorder refers to may change a great deal over time, whether through bureaucratic fiat or through the activism of groups who adopt or reject a medical definition. In this respect, autism is like many other disorders. Practitioners may maintain that through the course of their long careers they have gained the ability to recognize autism on sight as, one expert suggested, one might learn by studying a range of examples to recognize the distinctive style of a particular artist.³ Still, much about the diagnostic criteria, practices of identification, modes of treatment, and daily experience of autism has changed, and changed radically.

Autism has commanded increasing international attention since the early 2000s, to judge from the press coverage, books, weblogs, and specialized research publications. The increase parallels the growth in federal funding authorizations for autism-related research in the United States. The Children's Health Act of 2000 called for the coordination of autism research efforts across the National Institutes of Health and authorized unprecedented federal support for investigations in the area. These provisions increased under the 2006 Combating Autism Act. This fascination and concern with autism is by no means unprecedented. Time magazine profiled Leo Kanner, who first wrote about autism, in i960.⁴ Life magazine reported on O. Ivar Lovaas's work with autistic children in 1965. And Bruno Bettelheim's 1967 The Empty Fortress met with both critical acclaim and immense popular interest. These are works that I will return to in later chapters.

By most standards autism is a new disorder. It is startlingly recent in origin compared to familiar conditions like tuberculosis or kidney failure, but it is even recent compared to bipolar disorder or schizophrenia, which originate in descriptions dating from the mid to late nineteenth century. There are some historical descriptions of “feral children” that are likely candidates for retrospective autism diagnoses. Nineteenth-century medical records also depict children with symptoms that might fit present-day criteria. Yet the authors of those descriptions did not believe that they had identified a unique set of pathological symptoms or that they were pioneering the diagnosis of a new disorder.⁵ They made no difference to medical practice. They certainly didn't cause parents to look at their remote or late-talking child and wonder whether they ought to bring him or her in for an evaluation.

Autism is also a very modern disorder, with all of the implications of that term. It is characterized by expert knowledge. It is subject to systems of measurement and quantification. It became visible through attention to language and communication failures, and it has been framed in terms of numerous overlapping systems: the family, sensory feedback loops, brain damage, biochemistry, and metabolism. Because the symptoms of autism could seem so obviously the result of atypical development and yet simultaneously so amenable to explanations that assumed an environmental cause, it came to share shelf space with other childhood disorders of uncertain etiology like attention deficit hyperactivity disorder or even severe childhood allergies.

In order to represent the emergence of autism as both a diagnostic category and a term applied to specific sets of people, it is necessary to explore several issues. The first is the development of standard descriptions of autism and their relationship to different theories of causation. The second is the application of these criteria to the practice of epidemiological surveys. I look at the effects that changes in criteria have had on findings about autism rates. The third is the use of published screening and diagnostic instruments.

The neutral tone of this list belies the significant emotional consequences of each of the practices. Theories about the cause of autism have been sources of wrenching pain for parents, just as authoritative and often dire descriptions of autistic limitations have confused and frustrated the people to whom they have been applied. The possibility that the rising reported incidence of autism represents an epidemic has been the subject of fervent editorials, irate hallway confrontations at otherwise sedate conferences, and several full-length books. Meanwhile, the question of early diagnosis and the potentials and dangers that this represents is a source of real concern to many professionals and parents.

Much of the early research on autism originated in the disciplines of child psychiatry and abnormal psychology. Researchers often consciously or unconsciously incorporated the elements of theories that were popular in their discipline at the time into their descriptions of autism. Later, new tools for studying the brain came to be seen as potential keys to autism. Experts were also concerned with identifying research populations and constructing broad-based cognitive theories, using their study of atypical development as a window onto typical development.

Real populations are messy and difficult to manage, epistemologically and institutionally. A diagnosis describes some shared characteristics, but it is mute on the matter of individual difference. The children that were most useful to researchers were “pure types,” those who expressed the social, behavioral and communicative deficits in autism without the complication of comorbid medical or genetic conditions or impairments so severe as to render testing impractical or impossible. The difficulty, as with many research populations, is that such pure types did not always reflect the needs of clinicians and parents—who must treat children of all types—or the natural history of the disorder in human populations.⁶ By framing autism as a behavioral syndrome, researchers have elaborated on the nature of many of the deficits but few of the underlying causes. They have produced even fewer insights into intermediary mechanisms, and less still into the tasks of managing daily life.

A few elements in the history of autism distinguish it from other psychiatric or neurological disorders that have been affected by the same overall trends in theory or diagnosis. First, autism has often been construed as a disorder of love. Researchers spoke of the absence of “affective contact” in children, others of the lack of bonding in parents. Second, parents have never been far from expert discussions about autism treatment and autism research. They have been incorporated into theories of etiology and built into research programs as well as the daily practices of treatment. Third, the history of autism has been resolutely experimental. Although some published histories tend toward the view that autism research progressed over time toward more empirical and experimentally based work, both autism researchers and the parents who consumed, modified, and translated the researchers’ work for their own purposes have seen themselves as experimentalists from the beginning. As the ethologist Niko Tinbergen and his wife Elisabeth put it, in the course of daily life, “‘experiments by nature’ happen all the time to autistic children. Parents, visitors, strangers met in the street, and last but not least doctors perform them, but usually without being aware of it.”⁷

Describing Autism

Autism has been treated alternately as a psychological, neurological, behavioral, or genetic disorder, often paralleling trends in medical research and popular interest. Leo Kanner, a pioneer in the field of child psychiatry who headed the Behavior Clinic for Children at Johns Hopkins University in Baltimore, introduced the diagnostic category of autism to the world of medicine in his 1943 case series of eleven children, published in the second issue of the journal Nervous Child. During the next two decades, while the number of children receiving the diagnosis was still quite small, child psychologists and psychiatrists recognized the need to standardize use of the term.

It is hard to fault Kanner's descriptions, which were models of careful observation, but the category and the range of interpretations that “autism” could encompass quickly slipped beyond his control. As a disorder that seemed to straddle the divide between the psychological and the neurological, between affect and brain chemistry, autism became a subject about which biologically oriented psychiatrists and their more psychoanalytically inclined colleagues struggled to find common ground. Kanner should not have been surprised. The confusion began with his original descriptions of children who seemed to represent “pure-culture examples of inborn autistic disturbances of affective contact,” a psychological problem that nonetheless seemed to have its origins in disordered biology.⁸

Leo Kanner was in a good position to discover a new disorder. He was born in the Ukraine and immigrated to the United States from Germany in 1924 after receiving his medical degree and doctorate. Although he had avoided the depredations of Nazi Germany, he had a keen sense of the injustice of conventional approaches to treating people with intellectual disabilities, and he became an advocate for their rights. Kanner argued that research on mental deficiency ought to be placed firmly within the concerns of child psychiatry, education, and guidance, as an issue central to the study of all human development, and not “merely an appendix.”⁹ As the author of a definitive textbook in the field, Kanner had virtually invented the specialty of child psychiatry. The Behavior Clinic for Children that he was tapped to head in 1931 became a model of its kind. As the director of a teaching clinic that was part of a department of pediatrics, Kanner developed a style of instruction based on case consultations with interns. This meant that the most difficult and complex cases were usually referred to him or to a close colleague, leaving Kanner with a wealth of examples to draw on in his writing.¹⁰

In the introduction to the issue of Nervous Child that featured his article, Kanner distinguished between studying inborn inabilities to form affective contact and studying intelligence. “‘Mind’ has much too often been identified with ‘intelligence.’”¹¹ Kanner and his colleagues were interested instead in the formation of emotional relations and in the idea that some children might have difficulties in this area in much the same way that some children had physical or mental impairments.

Kanner opened his article with an epigraph by child psychologist Rose Zeligs that suggested at least one source of his fascination with these children:

To understand and measure emotional qualities is very difficult. Psychologists and educators have been struggling with that problem for years but we are still unable to measure emotional and personality traits with the exactness with which we can measure intelligence.¹²

His ambitions stretched beyond defining a specific disease entity, “autism,” a term he borrowed from Swiss psychologist Eugen Bleuler, who had used it back in 1910 to describe symptoms of schizophrenia.¹³ Kanner hoped to point the way to a subfield dealing with a range of emotional deficiencies. Nonetheless, the article did not suggest precise mechanisms through which children might become affectively impaired, but merely described eleven cases in exacting detail.

The publication straddled two perspectives on children exhibiting deviant or perplexing behavior. Nervous conditions, or those syndromes that seemed to stem from aberrant mental processes, had once been the province of private neurologists. Children who were “feebleminded” were generally treated with the assumption that their condition was permanent and lifelong, and not on the whole caused by psychodynamic processes.¹⁴By 1943, both categories were becoming the province of psychiatrists. Psychiatrists had struggled for status within the medical profession and had often found themselves stuck in bureaucratic positions within asylums rather than winning prestigious research appointments. As they began to adopt methods that combined the techniques of psychoanalysis with clinical medicine, they became newly confident of their security within the institutional structure of hospitals and clinics.¹⁵

Perhaps because Kanner largely abstained from presenting any explicit theory about the causes of autism in his careful description, scientists and advocates have found in it support for a range of positions in the debates that emerged since the publication of his work. They have interpreted it as a condemnation of unresponsive parenting, as a prescient identification of genetic or hereditary aspects of autism, as a careful documentation of the many medical conditions that can occur alongside autism, and as a chronicle of symptomatic and diagnostic unity in the context of clinical heterogeneity.

Kanner himself leaned toward an organic interpretation of autism. He thought that it was caused by an innate, structural difference in the brains of the children, but his writing left the possibility open for multiple interpretations. Starting in 1938 a set of children had arrived at the clinic at Johns Hopkins with symptoms that stood out “so markedly and uniquely from anything reported so far” that each case deserved an independent discussion. Instead, he offered a “condensed” description of the history and behavior of the eight boys and three girls. His presentation of these eleven cases as a group worked to establish them as a meaningful set that might be tracked over time to better establish the existence of this new diagnostic entity.¹⁶ As a colleague of his would later write, Kanner's “genius” was to identify a set of stable traits in the midst of such vast individual variation. Later generations of psychiatrists would modify these criteria with consequences for the number of children diagnosed and for theories of the causes of the disorder, but they would maintain that it was Kanner himself who had “recognized the essential core of the disorder.”¹⁷

The children who had arrived at the clinic were a remarkable group. None appeared to have any intellectual disability, although one, Virginia, had been “dumped” in a state school for the feebleminded where she stood out as unlike any of the other children. Donald, the first case, had exceptional memorization skills, but rarely used language to communicate, instead repeating nonsense phrases like “‘Chrysanthemum'; ‘Dahlia, dahlia, dahlia'; ‘Business;’ ‘Trumpet Vine’; ‘The right one is on, the left one is off’; ‘Through the dark clouds shining.’” He seemed uninterested in the people around him and didn't desire affection. He had trouble with pronouns like “you” or “I,” so that when he wanted a bath, he would say “Do you want a bath?” repeating the phrase that his mother would use with him. He hummed to himself and flicked his fingers in the air, was fascinated by spinning objects, and liked to line up beads and blocks according to color. He hated deviations from routine and demanded that his mother adhere to certain “rituals,” repeating a precise verbal exchange with him, for instance, at every mealtime. Nevertheless, in the three years following Donald's initial visit, he gradually became more oriented to his surroundings and his mother expressed surprise at how well he was doing when she visited his classroom at school.¹⁸

The other children in Kanner's case series behaved in similar ways. Frederick was terrified of egg beaters and vacuum cleaners, and he repeated questions that were put to him rather than answering them directly, a symptom called echolalia. While it was hard to get him to cooperate on intelligence tests, he performed well on tasks that required recognizing and manipulating geometric shapes. Richard, who seemed physically healthy on the whole, was drawn to light switches and didn't seem to speak at all until, at four years old, he said “good night” to his foster mother. Elaine “independently went her own way” at nursery school, “not doing what the others did.” For instance, she “drank the water and ate the plant when they were being taught to handle flowers.” When she was placed in a residential school, she learned the names, eye colors, and other features of all of the children, but “never entered into any relationship with them.”¹⁹

Although many of the similarities among the cases emerged through his simple reiteration of details, Kanner waited until the end of his paper to discuss the similarities among the cases in depth. The central feature of these children, Kanner believed, w...