Constructing Autism

Unravelling the 'Truth' and Understanding the Social

Majia Holmer Nadesan

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781134355846
• Edition: 1
• Topic: Social Sciences
• Subtopic: Global Development Studies
• Index: Social Sciences

Autism is now considered to be one of the most common developmental disorders today, yet 100 years ago the term did not exist. This book examines the historical and social events that enabled autism to be identified as a distinct disorder in the early twentieth century.

The author, herself the mother of an autistic child, argues that although there is without doubt a biogenetic component to the condition, it is the social factors involved in its identification, interpretation and remediation that determine what it means to be autistic. Constructing Autism explores the social practices and institutions that reflect and shape the way we think about autism and what effects this has on autistic people and their families. Unravelling what appears to be the 'truth' about autism, this informative book steps behind the history of its emergence as a modern disorder to see how it has become a crisis of twenty-first century child development.

1 Introduction

This story begins with my son, Kamal, born September 5, 1996. Kamal, a beautiful, alert, and demanding infant, seemed unusually irritable and inconsolable beyond the “normal” period for these typical behaviors of infancy. Repeated visits to the clinic resulted in a diagnosis of an “overly educated” mother who doted excessively on her demanding son, even when Kamal failed to speak at two years. After all, Kamal was alert and clearly understood the words of those around him even if he failed to replicate them. The clinician attributed his behavioral oddities, such as his tendency to bang his head against the wall when frustrated and his clinginess, to his demanding and sensitive “inborn temperament.”

Unsatisfied with this account, I began to visit clinical “experts” in an attempt to understand and remediate Kamal’s behavioral oddities and lack of expressive language. A speech therapist’s suggestion that Kamal might suffer from a “personality disorder” led me to the office of a well-known child psychologist, who declared Kamal to be “autistic” but “probably not mentally retarded.” After delivering these incomprehensible and chilling words, the psychologist responded to my objections that Kamal could not be autistic because he was “so clearly affectionate” by asking whether I thought that he “really loved me.” I assumed she was implying that Kamal was incapable of love and at that moment my calm assurance in his love (because he was so very affectionate) dissipated. After all, how could he love me if he was indeed autistic?

Within a span of three months, my son’s “condition” was explained in terms of my mothering—my “over-education” and excessive ministrations—my son’s “inborn” temperament, a personality disorder, and finally autism. No words could describe my or my husband’s anguish. We felt that Kamal was lost to us. Yet out of this story grew my intense interest in the subject of autism.

Our story is not unusual. There are many autobiographical narratives written by parents of “autistic” children reflecting a similar search for explanations amidst competing diagnoses. Bewildered and desperate, many parents of recently diagnosed “autistic” children immerse themselves in the scientific and medical literatures on autism. Their successes (or failures) with the many therapies and interventions detailed in the “expert” literature are often published as triumphant accounts of parental assaults against the “fortress” of autism that holds captive their inner child. While these stories can be inspiring, they seemed to leave a gap in the existing literature on autism.

The medical and scientific literatures represent autism as a biological facticity that must be explained using the positivist methods and assumptions of the natural sciences. That is, the medical and scientific literatures often assume autism is some thing or things, some essential biogenetic condition(s), which will ultimately be unequivocally identified and known as a spatially centered genetic, neurological, or chemical abnormality through the efforts of scientists toiling in their laboratories.

In the literature directed to popular audiences or parents of autistic children (e.g., Maurice’s (1993) Let Me Hear your Voice: A Family’s Triumph over Autism), autism is a biologically based psychiatric condition to be therapied, remedied, assaulted in an effort to “save” afflicted children locked inside an autistic cage. The popularity of this literature is growing and its dissemination encouraged by the proliferation of Internet sites dedicated to autism support groups.

Yet, it became increasingly clear to me that autism, or more specifically, the idea of autism is fundamentally socially constructed. To make the claim that the idea of autism is socially constructed is not necessarily to reject a biological basis for the conditions or symptoms that come to be labeled as “autistic.” Rather, I use the phrase “socially constructed” to point to the social conditions of possibility for the naming of autism as a distinct disorder and to the social conditions of possibility for our methods of interpreting the disorder, representing it, remediating it, and even for performing it.

And yes, autism has a performative component, as known by every parent who struggled to meet the criteria for government and educational services for their child. For the social services agent, I must stress (and even exaggerate) Kamal’s maladaptive behaviors. For his teachers, I stress Kamal’s high intellect in order to avoid having him labeled as “mentally retarded.”¹ For his peers, Kamal performs “normality” in the context of the school playground by stifling his odd interests and masking social awkwardness in order to “fit in” with the other children. For those parents with whom I have shared the “secret” of Kamal, I carefully engineer their interpretation of his diagnosis to ensure their “understanding” for his oddities without engendering their alienation. Although there is a biological aspect to this condition named autism, the social factors involved in its identification, representation, interpretation, remediation, and performance are the most important factors in the determination of what it means to be autistic, for individuals, for families and for society.

This book attempts to redress this limitation in the vast corpus of literature on autism by addressing the social conditions and practices that enabled autism to be identified, labeled, and remediated in the early twentieth century as well as those conditions that prevail today that enable the labeling of childhood autism, particularly high-functioning childhood autism, an “epidemic” with dramatic increases in diagnoses up to 1000 percent.² Although much maligned, “autism” as an epidemic has also captured the public imagination as a disorder that is regarded simultaneously as both threatening and fascinating. Therefore, exploration of the social conditions involved in the production, interpretation, and remediation of autism is important not only for people intimately involved with autism, but also for those interested in how social institutions such as medicine, psychology, and psychiatry, and even the popular media, constitute and shape our ideas about normality and difference in the context of economic and political environments. Thus, what is at stake in this exploration extends beyond “autism” as a distinct disorder to include the ideas and practices whereby we constitute everyday life and social institutions, including the processes that will ultimately produce the opportunities for personhood in the early twenty-first century.

Autism, as I will argue, is a disorder of the early twentieth century while the high-functioning variants of autism such as Semantic Pragmatic Disorder (SPD), Pervasive Developmental Disorder (PDD), and Asperger’s syndrome (AS) are fundamentally disorders of the late twentieth and early twenty-first centuries.³ This is to say that as a distinct psychological disorder or psychiatric disease, autism could not have emerged in the nineteenth century, even while I concede that there have been, no doubt, people throughout history who have displayed the symptoms we now group and define as autism.⁴ The idea of autism could not have emerged as a distinct disorder because within the diagnostic categories of nineteenth century (and earlier) thought, autism was unthinkable. If autism was unthinkable within the scientific taxonomies, medical nosologies, and medical practices of nineteenth-century thought, “high-functioning” or “shadow” variants of autism were largely unthinkable diagnostic categories until the mid- to late twentieth century.⁵ It was not until standards of normality had been formalized and narrowed and standards of pediatric screening extended to a child’s earliest years that children with PDD, SPD, or AS (or Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD)) could be widely identified, labeled, and therapied. And so the history of autism in all of its forms must be contextualized within the evolution and transformation of medical practices, the development of professions such as psychiatry, psychology, social work, and special education, many of which either emerged or were professionalized in the early twentieth century.

The history of “high-functioning” forms of autism must be further understood in the context of new standards for parenting that emerged mid-twentieth century and new economic and social conditions surrounding the purported “information revolution” that began in the 1960s. As I will argue, the public’s fascination with autism, particularly its high-functioning forms, stems in large part from the idea that people with autism are technologically gifted and are particularly adept with computer technology.⁶

The scientific search for understanding the essence of autism in the late twentieth century must also be contextualized within a new matrix of practices that seeks to explain social behaviors in terms of genetic markers, which are seen as entities that will ultimately be linked (deterministically) to the whole repertoire of human behaviors. Likewise, the popularization of neuroscience, fueled by the development of new neural imaging technologies, plays an important role in shaping the scientific study and understanding of autism. Late-twentieth-century efforts to link genetics and neuroscience provide a new paradigm for representing and predicting the social significance of human differences that will, no doubt, play an important role in the identity politics of the early twenty-first century.

Finally, alternative explanations for interpreting the rise of autism diagnoses must be explored. In particular, environmental discourses play an important, although somewhat marginal role, in explaining and preventing disease at the end of the twentieth century. These environmental discourses, particularly when coupled with biomedical frameworks, play a role in the political debates surrounding the causes of autism.

In sum, this book addresses the social complexity of autism, embracing the ambivalence and contradictions associated with its interpretations and remediations, not only to understand its social construction but also to gain insight into some of the cultural frameworks of interpretation and social practices that are leading us into the twenty-first century. Moreover, the book pointedly demonstrates that contemporary understandings and practices are inflected by historically rooted philosophical assumptions and theoretical frameworks of interpretation. Historical significations often implicitly shape the problem space and context of understanding for current approaches to studying, representing, and treating autism.

Recognizing the problematics associated with the vocabulary of social construction, particularly when applied to a psychiatric disorder that is undoubtedly real/material in terms of its symptoms and effects, I will attempt to clarify my position and objectives before proceeding further:

• Without denying that autism has a biogenetic component, I aim to explore the matrices of social practices and institutions that enabled the identification and interpretation of (the idea of) autism and, later and in more depth, (the ideas of) high-functioning forms of autism, particularly Asperger’s syndrome, as distinct psychiatric disorders.

• I will argue that the matrix of practices and institutions that enabled the identification and interpretation of classical autism was historically specific, as is the matrix that is contributing to increased rates of diagnoses for high-functioning forms of autism. However, the historical specificity of these matrices does not preclude the tendency for current understandings to be framed in relation to historically rooted interpretive paradigms.

• I will argue that the contemporary matrix of practices and institutions used to identify, label, and therapy autistic people contributes to the production and interpretation of the behaviors, self-awareness, and “other” awareness of people understood as autistic.

• I will explore how ideas about autism reflect and shape societal norms and expectations and opportunities for personhood.

This project, involving an exploration into the social construction of autism, will be organized into the following chapters.

Chapter 2 contextualizes this project in several ways. First, it introduces the reader to current psychological criteria used to identify autistic spectrum disorders and provides a brief history of their emergence in the early twentieth century. Second, it introduces and explores the thesis that biological diseases, particularly autism, and the clinical practices developed to “cure” them are fundamentally cultural in origin and remediation. This thesis does not reject a biological component to autism; rather, the argument forwarded here is that the emergence, identification, and treatment of disease are always infused with cultural practices, values, and frameworks of interpretation. Third, this chapter provides the theoretical framework for exploring how autism can be understood historically as a “niche” disorder whose interpretation, representation in research practices and in the popular imagination, and remediation reflect cultural preoccupations and concerns.

Chapter 3 addresses the historically embedded psychiatric niche conditions that enabled the identification and emergence of autism and Asperger’s syndrome in the early twentieth century. Accordingly, the chapter provides a social history of the material institutions, professional identities, and cultural values that enabled Kanner and Asperger to name autism and Asperger’s syndrome and frame their meanings in relation to the diagnostic categories of their time. Kanner derived the name for autism from Eugene Bleuler’s descriptive account of schizophrenia. Asperger also invoked Bleuler’s idea of autism but recontextualized the concept within the framework of a personality disorder. Ultimately through the discussions of this chapter and the next it will be evident that the matrix of institutions and practices that engendered the identification and exploration of autism in the works of Leo Kanner and Hans Asperger in the 1940s was dependent upon the emergence of a new, early-twentieth-century psychiatric model of the medical subject that centered childhood psychopathology, personality, and social relationships/interpersonal dynamics. The role of childhood in this matrix is addressed in Chapter 4.

Chapter 4 addresses the historical niche conditions that enabled early-twentieth-century psychiatrists and physicians to address mental illness in children. In particular, the chapter contextualizes the works of Leo Kanner and Hans Asperger within early-twentieth-century child guidance and mental hygiene movements, which together brought childhood into focus as a legitimate sphere of psychiatric inquiry. Moreover, the chapter traces this new focus to social institutions and professional identities that emerged in the nineteenth century. The chapter argues that the early-twentieth-century interest in childhood was a direct function of the expansion of compulsory education, the late-nineteenth-century interest in childhood “development,” and the child-saving movement. The new professionals—child educators, child psychologists, and social workers—all played a vital role in ensuring the convergence of events and institutions that provided the conditions of possibility for Leo Kanner to “discover” autism. These same trajectories enabled Hans Asperger to identify Asperger’s syndrome as well, although in the context of European institutional and social relationships.

Chapter 5 explores in depth how autism emerged in professional research and clinical practices as well as in the popular imagination in the United States and Britain in the mid- to late twentieth century. The chapter addresses how two dominant psychological paradigms, psychoanalysis and cognitive psychology, shaped professional and popular understandings of autism in the context of distinct historical circumstances that were specific to the post-World War II period and to the late-twentieth-century “information revolution.” Accordingly, the psychoanalytic construction of autism as an ego shipwrecked on the shores of object relations for lack of adequate mothering is historically contextualized when compared to the cognitive articulation of autism in relation to the vagaries of computational intelligences. Cognitive psychology’s interest in and research about high-functioning forms of autism are of particular relevance because they point to late-twentieth-century representational practices that center the young child’s brain as a locus for research and therapeutic intervention, as well as to “parent-centered” bourgeois practices and interpretive frameworks that articulate childhood as the locus of class mobility, particularly in the context of the “information” age. The chapter will conclude that autism has multiple valences in the context of late-twentieth-century life. Autism signifies pathology and difference in a historical epoch that increasingly emphasizes physical and psychological “health.” Yet, autism also signifies technological aptitude as illustrated in this passage from a Los Angeles Times article on the prototypical “computer geek”: “There is some fascinating speculation going on these days that the well-known stereotype of the computer geek or nerd may actually be a description of mild autism, especially a form of autism known as Asperger’s syndrome” (Chapman 1999).As I argue, the simultaneous elevation and denigration of “high-functi...

Table of contents

• Cover
• Halftitle
• Title
• Copyright
• Contents
• Acknowledgements
• 1 Introduction
• 2 Constructing autism: a dialectic of biology and culture, nature and mind
• 3 Psychiatric niche conditions
• 4 The history of childhood: ontologies, institutional divisions, child saving and child guidance
• 5 Psychological discourses construct autism
• 6 Biogenetic approaches construct autism
• 7 The dialects of autism: theorizing autism, performing autism, remediating autism, and resisting autism
• 8 Directions in the ontology of personhood: the new genetics, genomics, and opportunities for somatic subjects
• References
• Index