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Autism and Representation
Case Western Reserve Univ
Cleveland, Ohio
28-30 October 2005



Majia Holmer Nadesan
Arizona State University West
Do not cite without permission of author.

"Constructing Autism"

Autism, a neurological disease, is now regarded as reaching epidemic proportions ("Evidence mounts," 2000, p. 1) and is considered to be a major public health problem.   The dramatic increase in autistic diagnoses has paralleled a huge increase in scientific research on autism and related disorders such as Pervasive Developmental Disorder (PDD), Asperger's Syndrome, and Nonverbal Communication Disorders.   For example, acting in response to the dramatic rates of increase in its autism diagnoses--up to 1000%--the state of California recently allocated $34 million to autism spectrum disorder research ("California," 2000).   This scientific research is complemented with a whole range of media information directed toward popular audiences.   Information about autism can be found in a wide array of popular periodicals including such varied titles as Time (Nash & Bonesteel, 2002), Newsweek (Cowley, 2000), The Economist ("Science and Technology," 2001), and Scientific American (Rodier, 2000) and on a seemingly infinite supply of websites (e.g., ; ;   Articles about the relationship between autism and vaccinations can be found in almost every daily newspaper within the United States (e.g., Bandler, 2001; "Drug Lawsuits", 2001) and representations of autism find wide expression within the popular media as illustrated by the well known film, Rain Man.   More recently, the popular media have speculated on a causal relationship between autism and computer "geekiness" (Chapman, 1999; Nash & Bonesteel, 2002).

Across many of these representation of autism--both scientific and popular--is an unthematized but foundational premise that autism is a disease (or sometimes condition) that will, ultimately, be known, rendered transparent through the ceaseless efforts of scientific authorities.   Typically, this quest for transparency has entailed a reductionistic search for origins, although speculations regarding the nature of these origins have changed across time, reflecting historically specific pre-occupations and research paradigms.   The 1950s "refrigerator mother" thesis for the ontogenesis of autism (Bettelheim, 1967: Gardner, 2000) has been replaced by the current positivistic pre-occupation with genetic mutations and/or faulty bio-chemistry (e.g., Rodier, 2000).   Today, efforts to spatially localize epidemiological centers for the disorder hint at the promise of its remediation through gene therapy or pharmacological interventions.   Thus, even while estimates of the autistic population grow, the underlying articulation of the "condition" as pathological remains relatively intact.   The few voices that argue for the disorder's functionality in the information age do not question its location outside the norm.
My project, published as Constructing Autism: Unravelling the "Truth" and Understanding the Social (2005), attempts to redress the positivistic biases in the vast corpus of literature on autism by addressing the social-historical conditions and practices that enabled autism to be identified, labeled, and therapied in the early twentieth century as well as those conditions that prevail today that have enabled childhood autism, particularly high-functioning childhood autism, to be labeled an "epidemic" with dramatic increases in diagnoses up to 1,000 percent. 1  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, to include the processes that will, ultimately, produce the opportunities for personhood for the twenty first century.

This paper introduces the reader to my larger project, which looks at the social construction of "autism" by identifying the various discourses and institutional practices that have contributed to the naming, interpretation, and remediation of "autistic" symptoms over the last century.   However, before addressing these discourses and institutions, I will explain my thesis that autism is socially constructed.

Constructing Autism in the Medical Literature

Autism, as a meaningful diagnostic category, emerged in the early 1940s.   This timing is not accidental but ultimately reflects an emergent matrix of practices and interpretive vocabularies that marked the transition into the twentieth century.  

The emergence of autism as a diagnostic category in the 1940s must be understood in relation to a matrix of professional and parental practices that marked the cultural and economic transition to the 20 th century just as the emergence of high-functioning forms of autism must be understood in terms of the matrix of practices that mark late 20 th century, early 21 st century life.   The conditions of possibility for diagnosing a child as autistic or high-functioning autistic are ultimately less rooted in the biology of their conditions than they are rooted in the cultural practices and economy of their times.   For example, in the 1800s, the standards for classifying individuals as disordered were much less nuanced, the standards of normality much broader, and the mechanisms for social and individual surveillance that we take for granted today simply did not exist.   Prior to the late 1800s, children, in particular, would have not have been subject to any form of "developmental" or psychological examination unless their conditions were particularly severe and their parents particularly economically privileged.   Indeed, it was not until the 1930s that developmental guidelines were created and used in tracking children's "developmental" progression. 2  Given historical contingency in the identification of autism as a distinct disorder, one is led to question the relationship between the biological and the cultural, the relationship between disease and social representation.  

Did autism exist prior to its naming?   How did the historically embedded frameworks used to name autism influence the manner whereby autistic people were understood, treated, co-created?   What assumptions were smuggled in when Leo Kanner (1943) appropriated E. Bleuler's (1908, 1911) framework of autistic thinking, which Bleuler himself appropriated from Freud in order to describe what he saw as a characteristic of schizophrenic thinking?   Did Hans Asperger appropriate Kurt Schneider's (1923, 1953) 3 idea of the personality disorder when describing the disorder that now bears his name, Asperger's syndrome? 4  How did conceptions of autism change with the ascendancy of ego psychology within the United States?  

In the context of present circumstances one must ask how cognitive psychology has constructed autism over the last thirty years?   How has neuroscience constructed autism?   How has bio-genetic research constructed autism?   And ultimately one must ask whether a constructionist approach to autism entails denial of biological facticity?   How can representation and materiality be reconciled and how do representations shape the unfolding/expressions of materiality?  

These questions are addressed throughout my book but given the limitations of space I will here merely provide one framework, among many I am sure, for tackling the challenges posed by representing socially a condition that has an inescapable biological dimensionality.   I then sketch how I use this framework to address representational issues and politics.


In our everyday thinking and communication, most of us visualize disease as either being caused by a scientifically discernable agent such as a virus or bacterium (e.g., AIDS or meningitis) or as emanating from a detectable, localized bodily dysfunction (e.g., heart disease or diabetes).   The disease causing agent or diseased bodily system is seen as objective, available to visual representation (through a microscope, electro-magnetic scan, or simply through a scientific diagram), and ultimately, treatable (even if the "cure" eludes current medical understanding).   In effect, disease is represented in our everyday understanding as available to "empirical" (experiential) identification, interpretation, and intervention.   This everyday understanding of disease is rooted in nineteenth century "positivistic" thought that holds that the laws of nature can be identified and understood univocally through detached, empirical inquiry.   Positivist conceptions of medicine presume a mind/body dichotomy in which diseases are primarily if not exclusively located in the biological body and presume that each disease is caused by a specific and (ultimately) identifiable element. 5  Although medicine, as a professional field, has long rejected many of the positivist assumptions about the nature and origin of disease, our popular understandings and much medical practice continue to invoke them in the ways we diagnose and treat various diseases.

In contrast to this positivist approach to health and illness, many scholars have demonstrated that disease is partly, or largely, socially constructed.   There are, of course, different ways of approaching the social construction of disease.   One can explore the socially produced conditions that produce disease, such as the role of diet in producing diabetes.   Or, one can explore how ideas about disease constrain medical researchers' observations, interpretations, and interventions in diseases.   This latter approach can oscillate between 1.) an extreme constructivism (form of idealism) whereby the disease is itself an unknowable facticity rendered intelligible only through its various representations, which are themselves culturally produced and contingent; or 2.) a moderated materialism that sees disease in terms of the interaction between the biological (which begs the question of its intrusion on the cultural) and cultural practices of interpretation and remediation.

Fox (1999), among other sociologists of health and medicine, argues that rather than becoming locked within the dualism of nature/biology and culture, a more productive route would to reject a search for the "truth" of how the body (or brain) "really is" (or should be), reject a search for the body's facticity, and instead focus on the becoming of the body/mind as it is constituted by and in relation to cultural processes (p. 9).   Fox's approach need not be construed as necessitating a rejection of a biological component of autism.   Rather, it entails viewing the biological and the cultural as mutually constitutive, inseparable in their constitution of personhood.   An approach such as the one endorsed by Fox would not emphasize the mechanistic and reductionistic search for definitive origins but would instead focus on the becoming of autism as it is bio-culturally constituted, interpreted, experienced, and resisted.   Although there are many avenues of investigation suggested by this orientation, I have narrowed my focus to explore the cultural articulations within which autism was and continues to be identified, performed, and therapied.   In an effort to demonstrate how this approach need not reject a biological component to the disorder, I turn to some preliminary efforts by Ian Hacking to resolve the material-ideal conundrums associated with the social positivist/constructionist paradigms.

In The Social Construction of What ? Hacking (1999) sets out to demonstrate the interaction of biology and culture, materiality and ideas, through a variety of examples including schizophrenia, child abuse, and childhood autism.   Hacking uses the idea of "interactive kinds" to explain the mediation of socially constructed ideas and material existence: "'Interactive' is a new concept that applies not to people but to classifications, to kinds, to the kinds that can influence what is classified.   And because kinds can interact with what is classified, the classification itself may be modified or replaced" (p. 103).   Unlike "indifferent kinds," which refer to the classifications of entities that are not affected by their classifications as such, "interactive kinds" are fundamentally affected--produced in relation to--the categories and labels used to describe them.   Interactive kinds are affected by the process of classification to such a degree that the classification may itself require eventual modification or replacement.   The construct of child television viewers, Hacking observes, illustrates the kind of classificatory "looping" effect specific to interactive kinds: the behavior of child television viewers is, no doubt, irrevocably changed by the classification and research of children as child viewers.   Interactive kinds are classificatory systems that emerge within complex matrices of institutions and practices.   Once articulated, these classificatory systems engender practices and institutions that have the effect of producing what was classified.   However, the process of producing human beings is subject to effects unintended because, among other factors, of the reflexive nature of consciousness.   Awareness of one's classification as a particular kind of being, a particular kind of subject, can engender resistance and/or behavioral variation.

Hacking goes on to distinguish the kind of classificatory looping illustrated by child viewers from another form of looping he describes as mind/body effects 'biolooping' (p. 109), which he illustrates in relation to the brain chemical, serotonin.   Serotonin levels, as Hacking observes, are correlated with depression.   However, behavioral treatments directed toward reducing depressive states, can be as effective as chemical therapy in raising serotonin levels.   Biolooping thus refers to the process whereby mental states, individual comportment, and cultural practices can affect biological outcomes (e.g., serotonin levels).   Hacking argues that biolooping and classificatory looping could both be at work, simultaneously, in some forms of psychopathologies, particularly schizophrenia and childhood autism.

Hacking observes that autism, like schizophrenia, is an interactive kind that may be subject to the looping effect as a consequence of the interpretive work done by parents, caregivers, therapists, and autistic patients.   To demonstrate his point, Hacking notes that many of the symptoms identified by Kanner and Asperger are no longer regarded as the primary symptoms that demarcate "autistic" children, as illustrated by the decreased relevance of "flat affect," which was observed and remarked upon by both original researchers and yet is no longer regarded as a determinate diagnostic criteria.   Autism, for Hacking, is a particularly compelling example of the intersection of biology and culture because although it is arguably an interactive kind, it also evidences the characteristics of an indifferent kind in that its symptoms are in some way rooted in genetics or molecular chemistry.   These bio-genetic factors, however, do not "motivate" fixed, uniform symptoms, such as "flat affect."   Moreover, the underlying bio-genetic factors are not themselves fixed or uniform.   The effects of parental expectations, therapy programs, and the individual experiences loop back to affect/constitute the expression of bio-genetic factors.   Further, the use of drugs such as Prozac do not merely reduce symptoms but may actually alter the brain chemistry and neural topography of autistic patients, illustrating what Hacking describes as bio-looping.  

Prozac and other drugs that target neural chemistry are themselves cultural artifacts and thereby illustrate how cultural models of the mind/brain undergird "expert" authorities' efforts toward bio-engineering.   Although the current bio-genetic/chemical model of the brain/mind relationship is not exhaustive (or necessarily "valid"), biomedical interventions generated using this model tend to alter subtly the expression of that which they presuppose.   Moreover, patient and caregiver expectations, based on the perceived validity of the bio-genetic model of the brain, no doubt alter the experience and expression of the effects of biomedical interventions.   Although my discussion of the interactive dimension of autism extends beyond Hacking's formulation it demonstrates the complex interactions among biology and culture, neurology and communication.

Hacking's works points to many compelling avenues of research for those interested in approaching autism from a symbolic perspective.   I am myself most interested in the emergence of autism in the early 20 th century and the emergence of more high-functioning forms of the disorder in the late 20 th century as "niche" disorders.   In Hacking's (1998) text, Mad Travelers , he investigates "transient" mental illness:

By a 'transient mental illness' I mean an illness that appears at a time, in a place, and later fades away.   It may spread from place to place and reappear from time to time.   It may be selective for social class or gender, preferring poor women or rich women.   I do not mean that it comes and goes in this or that patient, but that this type of madness exists only at certain times and places.   The most famous candidate for a transient mental illness is hysteria. . . . (p. 1)

Hacking ponders whether a variety of neuroses such as PMS, ADHD, and multiple personality disorder are real or culturally produced in relation to specific socio-cultural events and practices.   The so-called "shadow syndromes" such as sub-clinical autism and depression are particularly suspect disorders in this regard.  

Although there is some discontinuity in Hacking's formulations of sub-clinical autism as a transient mental illness in Mad Travelers and his later formulation of it as both an interactive and indifferent kind in The Social Construction of What , I feel that the disorder exemplifies the niche effect that Hacking sees as operating in transient mental illness, even while it undoubtedly has a biological component.   In the section that follows, I briefly introduce my thesis that autism is a disorder that emerged and was created in relation to cultural practices and discourses that are specific to particular points in time, the transition from the nineteenth to the twentieth century and, more recently, the transition from the twentieth to the twenty-first century.

Constructing Autism:   Some Preliminary Ideas

Following Hacking's idea of a niche effect, I suggest that autism is a disorder of the early twentieth century while the high-functioning variants of autism such as Asperger's Syndrome (AS), and Pervasive Development Disorder (PDD) are fundamentally disorders of the late twentieth-early twenty-first centuries.   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. 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 variants of autism were largely unthinkable diagnostic categories until the mid to late twentieth century.   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 or AS (or ADD, or ADHD) could be 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, all of which either emerged or were professionalized in the early twentieth century.   The history of AS and PDD must be further understood in the context of new standards for parenting that emerged mid-twentieth century and new economic conditions surrounding the purported "information revolution" that began in the 1960s.   As I will argue, the public's fascination with autism stems in large part from the idea that people with autism are technologically gifted and are particularly adapt with computer technology. 7  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 seek 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.   Finally, the "cures" for autism, the various remediations and therapies promoted by professional practitioners and parents alike, must be understood in the context of late twentieth century social fears about environmental contamination and pollution, fears engendered by environmental catastrophes but also motivated by, I argue, latent cultural taboos and anxieties.   In its entirety, my project 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 21 st century.

For the sake of linguistic simplicity, I represent the various strands involved in the constitution, interpretation, and remediation of autism in terms of "social discourses," while acknowledging that discourses cannot be severed from the institutional relations that engender them and serve as the means for their reproduction and transformation.   The various discourses that I will briefly introduce include discourses of twentieth century pediatric psychiatry, childhood, cognitive discourses, genetic discourses, discourses of the environment, and discourses of advocacy in the context of social designations of normality and difference.

The first set of discursive practices addressed in my book concerns the psychiatric articulation of boundaries between normality and pathology.   Genealogies of mental illness provided by Berrios (1996), Berrios and Porter (1995), Foucault (1987, 1988), and Porter (2002), among others, reveal the historical contingencies and institutional matrices providing the conditions of possibility for increasingly nuanced ideas about the nature of, and divisions between, psychological normality and pathology in the early twentieth century.   The institution of the modern state in the nineteenth century involved the extension of governmental practices over more domains of social life, resulting in new bodies of knowledge, social institutions, and authorities who aimed to divide populations according to finer wrought distinctions of health and pathology, sanity and insanity, intellectual acuity and mental retardation (see Foucault 1991).   Accordingly, by the beginning of the twentieth century, new divisions, institutions, and authorities enabled the identification and articulation of autistic spectrum disorders that formerly would have either escaped the parameters of mental illness (e.g., Asperger's syndrome) or, contrastingly, would have resulted in designations of "idiocy." 8

Changing ideas about childhood also enabled identification and articulation of autism within the early twentieth century.   Nineteenth century governmental practices included expansion of compulsory education, resulting in more social and expert surveillance of children.   Moreover, the articulation and popularization of Freudian and Darwinian theories in the second half of the nineteenth century resulted in new cultural anxieties about childhood in general and the childhood of potential social "degenerates" in particular (see Morss, 1990).   Although much early research and social work focused on adjusting the children of lower class immigrants in the United States, the increasing psychiatric interest in preventing social maladjustment eventually brought middle class children into focus by the early twentieth century.   As new educational and psychological authorities were developed to meet the new imperatives of social adjustment (see Rose, 1999), the boundaries between normality and pathology were problematized as the binary distinction was slowly replaced by a continuum of pathologized and pre-pathological states associated with the (Freudian) neuroses, pre-schizophrenic or schizophrenic like-conditions (the pre-psychotic) and finally with the articulation of personality disorders (as articulated by Kurt Schneider).   Educational psychologists, community psychiatrists, and pediatricians--all newly instituted experts--found apparent manifestations of a vast range of disorders among the children they surveyed (see Jones, 1999; Rose, 1999).  

These historical circumstances--the convergence of new ideas about childhood, new systems of surveillance, new expert authorities, and new institutional arrangements--provided the conditions of possibility for autism to be identified, named and interpreted.   Accordingly, Hans Asperger's pediatric practice and Leo Kanner's child psychiatry must be contextualized in relation to these historical circumstances.   Furthermore, efforts to understand how autism meant for each of these individuals must be contextualized within a genealogy of Bleuler's schizophrenia, Freudian psychoanalysis, German phenomenology, and Kurt Schneider's personality theory--conceptual frameworks for the explanation of mind, perception, and pathology that shaped Asperger's and Kanner's ideas about autism.   Finally, dissemination of popular knowledge about autism in the United States must be understood in terms of changing attitudes about mothering in the post-WW II era and the attendant popularization of ego psychology throughout American culture.

Toward the close of the twentieth century new institutional conditions, expert authorities, and systems of knowledge acted to shape further ideas about normality and pathology in the context of new "niche" conditions (see Rose, 1999).   Cognitive psychology, in particular, replaced the psychoanalytic framework for understanding "developmental disorders."   And so autism was reconceptualized in the popular imagination, from a ego shipwrecked on the shores of object relations to a computer with modular dysfunctions.   Accordingly, I suggest that "high functioning" autism (e.g., Asperger's Syndrome and Semantic Pragmatic Disorder) and Pervasive Developmental Disorders (PDD) have been carved out as distinct disorders by several important social/cultural discourses including the fragmenting metaphors of cognitive psychology that view mind in terms of isolated modules, as well as by "parent centered" bourgeois discourses that articulate childhood as the locus of class mobility, particularly in the context of the "information" age (Ehrenreich, 1989; Nadesan, 2002).  

The coupling of cognitive psychology with cognitive neuroscience, and the popularization of this coupling in the form of a late twentieth century discourse of early childhood "brain science" (Bruer, 1999, 1998) lent urgency to the public and academic interest in "developmental disorders," particularly autism, further expanding the continuum of possible autistic symptoms and diagnostic assessments.

In relation to these discourses, childhood autism has multiple valences in the context of late 20 th century life.   Autism signifies pathology and difference in a historical epoch that increasingly emphasizes physical and psychological "health," yet it also signifies technological aptitude as illustrated in this Los Angeles Time 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, p. 1).   I suggest that the simultaneous elevation and denigration of "high functioning" autistic characterizations speak more to cultural preoccupations with technology and masculinity than they do to the "essential" autistic personality.

Also addressed in my project is the relationship between autism and environmental discourses. Specifically, I address autism as it is articulated as an "environmental" illness in order to explore how current anxieties surrounding environmental contamination and government mandated medical protocols (e.g., vaccinations) have centered "autism" as a disease of modernization whose remediation depends largely upon adopting the regimes of alternative medicine.   In a sense, autism is the outermost pole of a whole range of "contemporary" diseases including ADHD, chronic fatigue syndrome, and fibromyalgia that, following the argument of Morris (1998), are illnesses that "possess the power to define or represent an entire era" (p. 56).  

Perhaps most importantly, however, cultural anxieties about the relationship between autism and environmental contamination have not resulted in a desire to confront actively the source and form of environmental contaminants but rather have resulted in research and resource allocations dedicated to identifying "susceptibility" genes.   Environmental discourses are marginalized in importance in comparison to the new discourse of the active gene promulgated by pharmacological and bio-engineering interests.

Therefore, I also explore autism in the context of an emergent, hegemonic discourse that has been labeled (by critics) the "geneticization thesis" (Lippman, 1991).   Critics of this discourse argue that it operates by reifying the "gene" as a unified biological agent and a causal principle (Keller, 1995, 2000) that is used in a reductionistic fashion to explain ever more aspects of social life (see also ten Have, 2001; Hedgecoe, 2001; Rabinow, 1999).   Some fear that the geneticization thesis leads to the resurrection of older eugenics politics and policies, raising new concerns about the possible implications of the search for autism's genetic origins.   While these concerns are valid, they entail that the causal and mechanistic model of gene action will ultimately prove fruitful in explaining autism's etiology.   And yet, this model of the gene has so far proved unproductive in explaining autism and, indeed, most forms of mental illness, in part because the model presupposes that complex phenotypes are reducible to clearly definable genotypes.  

However, although the discourse of genetic determinism meets its own limitations, it has emerged as an important social discourse in that it "produces truth" by organizing "an epistemo-political field of the visible and the expressible, which controls the diverse forms of signification, and defines the conditions for truth and falsehood" (Lemke, 2004, p. 553).   In other words, the new genetics discourse is a regime of truth that constructs individuals as particular kinds of subjects.

Accordingly, Lemke (2004) suggests that the "social power" of genetic information "lies less in the resurrection of genetic determinism and more in the construction of genetic risks" (p. 551).   And Novas and Rose suggest that genetic risk has been afforded a "new calculability," potentially leading to new strategies and technologies designed to assess and ameliorate risky personhood.   Risky personhood itself is evaluated in relation to a new and ultimately normatively constituted "consensus genome" (Lemke, 2004, p. 553).   Riskiness is assessed in relation to the consensus genome, leading to a new "discourse of deficiency" that constructs individuals in relation to the disposition of their genetic variation (Lemke, 2004, p. 553).  

The desire to represent and control the human genome illustrates in the extreme Foucault's description of biopower--as a form of power that seeks to govern populations through technologies of life.   Accordingly, as a disease of modernization, autism speaks to new practices of biopower (Foucault, 1990) as well as to new technologies for the surveillance and governance of populations while, conversely, it opens up new strategies of resistance by individuals who seek to advocate for respect and social justice on the basis of their biogenetic differences (see Rose, 2001).

Novas and Rose (2000) suggest that "somatic" individuals who relate to themselves on the basis of some underlying genetic identity do so in a context of inalienable legal rights granting them entitlements as well as obligations (p. 501).   The somatic subject is also embedded within the humanistic psychological discourse of self-actualization that demands certain ethical accountabilities from those providing their services or caring for their well-being.   Therefore, the bio-genetic medical discourses that construct individuals as "somatic" selves also intersect with other legal and humanistic discourses that stress "autonomy, self-actualization, prudence, responsibility and choice" (p. 502).   Disability and patients' rights advocates make use of these legal and humanistic discourses in their efforts to optimize care and social respect and accommodation.

A wide and diverse range of autism advocates have seized genetic discourses, utilized them advantageously, and simultaneously disparaged such discourses for genetically pathologizing social difference.   I therefore explore the ambiguities, contradictions, and efforts posed by efforts to appropriate and resist genetic discourses.

I conclude by considering the various effects of the current discursive articulations of autism.   This chapter does not attempt to locate the "truth" of autism because, as the author argues, there is no fixed, universal biological truth to be located.   Autism is articulated discursively through the nosological clustering of symptoms and through the clinical practices of remediation.   It is "produced" through the practices that materially inscribe the various social discourses that have been briefly described.   This argument does not deny that there are biological differences: it does not deny that genetics, ontogenetic socialization factors, and environmental chemicals shape the emergence and expression of our experiential embodiment.   Following Hacking's vocabulary, I argue that autism is an interactive kind and that individuals labeled autistic are fundamentally transformed by that labeling and the subsequent interventions that follow, leading to what Hacking has described as the looping effect.   Thus, the argument made here is that the processes of identifying, interpreting, remediating, and performing embodied differences are cultural and historically specific.   Autism is not outside of the symbolic awaiting discovery.   Autism is inscribed, produced, through it and an investigation into these processes of inscription/production reveals current desires, anxieties, and opportunities for personhood in the twenty-first century.


1. See "Evidence Mounts for Epidemic of Autism" in the 2000 edition of Autism Research Review, 14 (2), 1.   Indeed, "autism" has become such a ubiquitous disorder that the state of California allocated $34 million for autism spectrum disorder research in 2000 (California, 2000).

 2. See Rose, Governing the Soul (1999) and Armstrong (2002) A New History of Identity for discussion of the emergence of childhood norms of development.

3.  Schneider's 1923 text, Psychopathic Personalities, articulated ontology of distinct personality types whose deviation from the norms of behavior result in extreme social difficulties.   That is, according to Schneider, persons with "psychopathic" personalities exhibit such behavioral and attitudinal irregularities that they cause considerable distress for social others and for themselves.   Schneider believed that these personality types were not caused by psychiatric diseases of the kind suggested by Kraepelin's dementia praecox.   Moreover, Schneider strongly believed that these personality types were not "developmental syndromes" understood in the psychoanalytic sense.   In other words, Schneider went against the prevailing tendencies to regard personality irregularities in terms of psychotic tendencies or character neuroses (cited in Berrios, 1993, p. 22).   Instead, Schneider forged a new approach to understanding psychopathology: an approach that blended aspects of phenomenology, Gestalt psychology, psychoanalysis and biological psychiatry

4. Lorna Wing (1981) popularized Hans Asperger's observations of children in the 1940, who he perceived as having a type of disorder he labeled, autistic psychopathy. Asperger claimed that his patients with "autistic psychopathy" did not suffer from a disease entity insomuch as they suffered from a personality disorder that was free from the secondary psychotic expressions (e.g., delusions and hallucinations) described by Bleuler.   And from Asperger's point of view, this personality disorder engendered certain intellectual strengths as well as weaknesses, including peculiar interests and a "paucity" of "expressive movements," including deficiencies in eye-contact and expressive gestures (p. 69).

5. See Freund and McGuire's (1991) discussion of the Western Medical Model, pp. 6-7.

6. For a case study of an individual who has been retroactively labeled "autistic" see Rab Houston and Uta Frith's (2000) Autism in History: The Case of Hugh Blair of Borgue.

7. For example, Wired magazine recently ran an article titled, "The Geek Syndrome" written by Steve Silberman that speculates that some technologically "gifted" individuals may have Asperger's Syndrome and that autism and Asperger's Syndrome diagnoses are surging among the children of Silicon Valley.   Silberman speculates that "math and tech genes" may be to blame.

8. For an excellent discussion of the history mental illness, see Trent (1994) and Wright and Digby (1996).


Armstrong, David (2002).   A new history of identity.   Houndmills:   Palgrave.

Bandler, J. (2001, August 30).   Children's vaccines raise seizure risk, don't cause autism.  
Wall Street Journal , p. B2.

Berrios, Germane E. (1996).   The history of mental symptoms:   Descriptive psychopathology since the nineteenth century.   Cambridge:   Cambridge University Press.

Berrios, Germane E., & R. Porter (Eds.)(1995).   A history of clinical psychiatry:   The origin and history of psychiatric disorders.   London:   Athlone.

Bleuler, E. (1908), 'Die prognose der Dementia Praecox (Schizophreniegruppe)', Allgemeine Zeitschrift fur Psychiatrie und Psychisch-Gerichtliche Medizin 65: 436-464.

Bleuler, E. (1911) 'Dementia praecox oder Gruppe der Schizophrenien', in G. Aschaffenburg (ed.), Handbuch der Psychiatrie. Spezieller Teil. 4 Abteilung, 1. Halfte.   Leipzig und Wien: Franz Deuticke.

Bruer, J. T. (1998) 'Brain science, brain fiction'.   Educational Leadership, 56 (3), 14-18.

Bruer, J. T. (1999).   'In search of brain-based education'.   Phi-Delta Kappan, 80 (9), 649-657.

California:   $34 million allocated for autism spectrum disorders research.   (2000). Autism Research Review, 14 (2) , 1.

Chapman, G. (1999, September 27).   The cutting edge: Focus on technology; digital nation:   Even if "geekiness" is a disorder, there's no rush to find a cure.   Los Angeles Times, p.1.      

Cowley, G. (2000, July 31).   Understanding autism.   Newsweek, 46-54.

Drug lawsuits pursue mercury link to autism. (2001, October 3).   The Arizona Republic , p. A4.

Ehrenreich, B. (1989).   Fear of falling:   The inner life of the middle class.   New York:   Patheon.

Evidence mounts for epidemic of autism (2000). Autism Research Review, 14 (2), 1.

Foucault, Michel (1987).   Mental illness and psychology   (Alan Sheridan, Trans.). Berkeley:   University of California Press.   (Original work published 1954).

Foucault, Michel (1988).   Madness and civilization:   A history of insanity in the age of reason (Richard Howard, Trans.).   New York:   Vintage Books.   (Original work published in 1965).

Foucault, Michel (1990). The history of sexuality:   An introduction. Vol 1 (Robert Hurley, Trans.).   New York:   Vintage. (Original work published 1978)

Foucault, Michel (1991)   'Governmentality'.   In G. Burchell, C. Gordon, & P. Miller (Eds.), The Foucault effect (pp. 97-104).   London:   Harvester Wheatsheaf.

Fox, Nick (1999).   Beyond health: Postmodernism and embodiment.   London:   Free Association Books.

Freund, P. E. S. and McGuire, M. B. (1991) Health, illness, and the social body: A critical sociology , Englewood Cliffs:   Prentice Hall.

Gardner, Martin (2000 November/December).   The brutality of Dr. Bettelheim.   Skeptical-Inquirer, 24 (6), 12-14 .

Greco, Monica (1998).   Illness as a work of thought:   A Foucauldian perspective on psychosomatics.   London:   Routledge.

Hacking, Ian (1999).    The social construction of what?   Cambridge, MA:   Harvard University Press.

Hacking, Ian (1999).   Mad travelers.   Charlottesville:   University of Virginia.

Hedgecoe, Adam (2001).   Schizophrenia and the narrative of enlightened geneticization.   Social Studies of Science, 31 (6), 875-911.

Houston, Rab & Frith, Uta (2000).   Autism in history: The case of Hugh Blair of Borgue.   Padstow, Cornwall:   Blackwell.

Jones, K. W. (1999) Taming the troublesome child: American families, child guidance, and the limits of psychiatric authority , Cambridge: Harvard University Press.

Kanner, L. (1943/1985).   Autistic disturbances of affective contact.   In A. M. Donnellan (Ed.), Classic readings in autism (pp.11-49).   New York:   Columbia University.

Keller, E. F. (2000) The century of the gene , Cambridge: Harvard University Press.

Keller, Evelyn F. (1995).   Refiguring life: Metaphors of Twentieth-century biology.   New York:   Columbia University Press.

Lippman, A. (1991).   Prenatal genetic testing and screening.   American Journal of Law and Medicine, 1, 15-50.

Lemke, T. (2004).   Disposition and determinism--genetic diagnostics in risk society.   Sociological Review, 22(4): 550-566.

Morris, David B. (1998).   Illness and culture in the postmodern age.   Berkeley:   University of California Press.

Morss, John R. (1990).   The biologising of childhood: Developmental psychology and the Darwinian myth.   Hove:   Lawrence Erlbaum Associates Publishers

Nadesan, M. (2005).   Constructing autism:   Unravelling the "truth" and understanding the social.   London:   Routledge.

Nadesan, M. (2002) 'Engineering the entrepreneurial infant:   Brain science, infant development toys, and governmentality', Cultural Studies 16, 3: 401-132.

Nash, Madeleine J. & Bonesteel, Amy (2002a, May 6).   The geek syndrome.  

Novas, Carlos & Rose, Nikolas (2000).   Genetic risk and the birth of the somatic individual.   Economy and Society, 29 (4) , 485-513.

Porter, R. (2002) Madness: A brief history , Oxford: Oxford University Press.

Rabinow, Paul (1999).   French DNA: Trouble in purgatory.   Chicago:   University of Chicago Press.

Rodier, Patricia M. (2000, February).   The early origins of autism.   Scientific American, 282 (2) ,   56-63.

Rose, N. (2001) 'The politics of life itself', Theory, Culture and Society 18, 6: 1-30.

Rose, N. (1999). Governing the soul:   The shaping of the private self (2 nd ed.).   Routledge: London.

Schneider, K.   (1923) Die Psychopathischen Persoenlichkeiten . / The psychopathic personalities. Leipzig: Thieme.

Schneider, K. (1953) 'Ueber die Grenzen der Psychologisierung. / The limits of psychologization', Nervenarzt 24: 89-90

Science and technology: Pointing the finger (2001, March 24).   Economist , 93.

Silberman, Steve.   (2000). The geek syndrome.   Wired Magazine 9, 12: 174-183..

ten Have, H. A.M.J. (2001) 'Genetics and culture: The geneticization thesis', Medicine, Health Care and Philosophy 4: 295-304.

Trent, James W. (1994).   Inventing the feeble mind:   A history of mental retardation in the United States.   Berkeley:   University of California Press.  

Wing, Lorna (1981).   Asperger's Syndrome:   A clinical account.   Psychological Medicine , 11, 115-130.

Wright, David and Anne Digby (Eds.)(1996).   From idiocy to mental deficiency: Historical perspectives on people with learning disabilities.   London:   Routledge.


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