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Nadesan, Constructing Autism
1
Nadesan, Majia (2007). Constructing Autism: A Brief Genealogy. In M. Osteen’s (ed.),
Autism and Representation. London: Routledge.
Constructing Autism
(Conference Paper Later Published as Book Chapter)
December 27, 2005
Majia Holmer Nadesan
Communication Studies 3251
Arizona State University West
Phoenix AZ 85069
(602) 543-6668 office
majia@asu.edu
Nadesan, Constructing Autism
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Constructing Autism
Abstract
The explosion of autism diagnoses has led to the proliferation of research studies
that aim to identify the genetic and biological conditions involved in its etiology and its
remediation. However, although the bio-medical model has relevance for understanding
the disorder, it can be limiting as it represents autism in a visual-spatial framework that
implies that the disorder is a definitive thing that can be known and manipulated,
primarily through chemical interventions. This essay is part of a larger project that
explores the social construction of the idea of autism as it is constituted within specific
matrices of ideas and practices. The specific matrices that are identified include those
that constitute the professional fields of psychiatry, psychology, childhood, and the
“environmental movement,” among others. These matrices will be briefly identified in
relation to the idea that autism is socially, albeit materially, constituted in relation to and
through them.
Nadesan, Constructing Autism
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Constructing Autism
Autism, a neurological disease, is now regarded as reaching epidemic proportions
(Evidence mounts 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 1). 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 and
Bonesteel 46), Newsweek (Cowley 46), The Economist (Science and Technology 93),
and Scientific American (Rodier 56) and on a seemingly infinite supply of websites (e.g.,
www.autism.com; www.autismcenter.org; www.nichd.nih.gov/autism/). Articles about
the relationship between autism and vaccinations can be found in almost every daily
newspaper within the United States (e.g., Bandler B2; Drug Lawsuits A4) 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 1; Nash and
Bonesteel 46).
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)
Nadesan, Constructing Autism
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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
commonly attributed to Bettelheim (Gardner 12) has been replaced by the current
positivistic pre-occupation with genetic mutations and/or faulty bio-chemistry (e.g.,
Rodier 56-63).
i
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.
This chapter is part of a larger project published as Constructing Autism:
Unravelling the “Truth” and Understanding the Social, which 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.
ii
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,
Nadesan, Constructing Autism
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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.
Accordingly, this chapter provides a “genealogy” of autism, a history of the idea
of autism through present articulations, thereby contextualizing the conditions of
possibility for contemporary understandings of autism. Specifically, this chapter unpacks
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. This genealogy will ultimately problematize the idea
that autism is a homogeneous, pathological condition that can be exhaustively known—
transparently represented—by scientists and their representational technologies (e.g.,
MRIs). However, although this genealogy deconstructs the idea of autism as a uniform,
biological essence shared by all people labeled as “autistic,” it does not reject the idea
that biological phenomena contribute to the expression of “autistic” symptoms. What is
called for therefore is an approach to autism that explores how various institutional
relationships, expert authorities, and bodies of knowledge have sought to represent,
divide, understand, and act upon biologically based, but socially shaped and expressed,
Nadesan, Constructing Autism
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behavioral and cognitive differences. What follows constitutes a preliminary and partial
response to this call.
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 20th century just as the emergence of high-
functioning forms of autism must be understood in terms of the matrix of practices that
mark late 20th century, early 21st 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.
iii
Given historical contingency in the
identification of autism as a distinct disorder, one is led to question the relationship
Nadesan, Constructing Autism
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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
appropriated E. Bleuler’s 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
iv
idea of the
personality disorder when describing the condition that now bears his name, Asperger’s
syndrome?
v
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?
Given 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 the questions raised above, as well as the representational issues and politics
stemming from current articulations of autism in academic research and popular
discourse.
Nadesan, Constructing Autism
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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.
vi
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.
Although many experts reject the positivist model of autism, this formulation
lingers in the popular imagination and in expert efforts to identify “agents” responsible
for causing autism or capable of curing autism. In fact, autism is a heterogeneous
condition that is more properly a syndrome than it is a distinct disease. Moreover, the
Nadesan, Constructing Autism
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causal pathways engendering autistic symptoms are most likely multiple and contingent
upon level upon level of loosely-coupled, synergistic, biological and social systems.
Most medical experts would agree that all, or even most, people with autism do not share
the same underlying biological condition. Moreover, people with autism, as is the case
with all people, grow and change in relation to their familial and social environments.
Built cultural environments and social practices elicit and constrain, enable and shape the
developing person, whether that person bears a label or not. And yet, despite these
truisms, autism is often represented in popular discourse—in the media, in parental
accounts of autistic children, and in some medical research--as being caused by
discernable, distinct, and mechanistic agents whose operations will inevitably be
“revealed” to an anxious public. In such accounts, the complex and irreducible biological
and social synergies that operate across genetic, molecular, psychological, social, and
cultural environments are erased or marginalized in favor of reductionistic, linear, bio-
genetic formulations.
However, efforts to reject positivist models confront age old dilemmas posed by
classical western (i.e., Platonic and Cartesian) dualisms between body and mind/soul,
corporeality and symbolic representation, materialism and idealism. Ridding theorizing
of ancient but false dichotomies is not an easy task as illustrated by the challenges posed
by approaching disease as socially constituted. Too often efforts to view disease as
socially constructed oscillate between the binaries of materialism and idealism because of
the difficulties inherent in their synthesis. On the one hand, the socially built
environment contributes to disease (e.g., through diet and pollution) and yet the causes
for diseases cannot be reduced to built environments. On the other hand, although
Nadesan, Constructing Autism
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disease may appear to present itself as brute facticity (e.g., through pain or
dehabilitation), bodily symptoms are always/already interpreted within symbolic systems
of meanings, social practices, and historically and culturally variable expert authorities.
Prevailing socially constituted ideas about disease shape and constrain medical
researchers’ observations, interpretations, and interventions while bodily symptoms and
processes can at times offer material refutation of prevailing ideas about causation and
cure. Disease, disability, bodily difference are at once material and symbolic, socially
constructed and materially inscribed.
Recently, scholars in the areas of the sociology of medicine and disabilities
studies have offered more synthetic accounts of the relationship between body and mind,
disease and representation, materialism and idealism. Fox, for example, suggests that
rather than becoming locked within the dualism of nature/biology and culture, a more
productive route would entail rejecting a search for the “truth” of how the body (or brain)
“really is” (or should be), rejecting a search for the body’s facticity. He contends that
research should focus on the becoming of the body/mind as it is constituted by and in
relation to cultural processes (Fox 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.
Nadesan, Constructing Autism
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In seeking to unravel the becoming of autism, I will employ the work of Ian
Hacking, who provides useful models and heuristics for exploring the social construction
of disease and bodily difference. In The Social Construction of What? Hacking
demonstrates 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” (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/shaping 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
Nadesan, Constructing Autism
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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 ‘biolooping’ (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 suggests 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. Included in the scope of Hacking’s
idea of interpretive work are experts’ very understandings of the diseases at issue.
Accordingly, Hacking suggests that understandings of the very nature and manifestations
of distinct diseases/pathologies/etc may change significantly over time, leading to
different therapeutic approaches and, consequently, disease progressions. For example,
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
Nadesan, Constructing Autism
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criteria. Moreover, many severely impacted children who today bear the label of
classical autism would not have been so diagnosed by Kanner or Asperger, who would
have been likely to diagnose severely impaired children as either psychotic or mentally
retarded.
Consequently, autism 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 and
reinforcements, 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
Nadesan, Constructing Autism
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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 most interested in
the emergence of autism in the early 20th century and the emergence of more high-
functioning forms of the disorder in the late 20th 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. . . . (1)
Hacking questions 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
Nadesan, Constructing Autism
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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.
vii
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.
viii
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.
Nadesan, Constructing Autism
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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.
ix
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 21st century.
Nadesan, Constructing Autism
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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 to be addressed concerns the psychiatric
articulation of boundaries between normality and pathology. Genealogies of mental
illness provided by Berrios, Berrios and Porter, Foucault, and Porter, 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 “Governmentality”). 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.”
x
Nadesan, Constructing Autism
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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). 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
Governing the Soul), 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 (also see Jones 1-37).
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
Nadesan, Constructing Autism
19
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. Both Leo Kanner and Hans
Asperger appropriated Bleuler’s description of the schizophrenic’s “autistic” style of
thinking, which Bleuler had appropriated from Freud. This intellectual heritage
engendered the assumption that the autistic essence was characterized by aloneness,
solipsism, a turning away from the social world, resulting in a failure to develop a
“normal” ego. However, whereas Kanner viewed autistic thinking in relation to
psychosis, in relation to an underdeveloped or disintegrating ego, Asperger was more
inclined to regard the children under his care as afflicted with a particular type of (non-
psychotic but disordered) ego that afforded unique insight into the natural world even
while it created social discord (Nadesan 70-78). Both Kanner and Asperger felt that
autistic thinking resulted from inborn, biological forces; although, Kanner also noted
behavioral and personality similarities in the parents of his autistic children (50), thereby
implying the possibility for some level of social influence in the conditioning of autistic
symptoms.
The role of social forces in producing autism captured the public imagination in
the United States and Western Europe in the post-World War II context. Popularized
accounts of child development promulgated by such diverse figures as D. W. Winnicott,
Benjamin Spock, and Bruno Bettelheim all emphasized the role of the mother in fostering
Nadesan, Constructing Autism
20
stable ego development. Normal, healthy child development was viewed as a process
fraught with peril, requiring the ever present guidance of the maternal figure. Autism and
other developmental disorders were sometimes inadvertently and other times directly
attributed to maternal negligence or transgression. Earlier psychoanalytic accounts that
emphasized infant perceptions (such as those proposed by Melanie Klein) were replaced
in the post-war context by object relations accounts that centered mothers’ actual (or
purported) behaviors as explaining developmental problems. In popularized
psychological discourses, “mother blaming” continued to explain many if not most forms
of child psychopathology until the late 1970s and early 1980s.
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. 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
cybernetic 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 (see
Ehrenreich 1-20; Nadesan 401).
Nadesan, Constructing Autism
21
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 “Brain Science” 14; Bruer, “In Search” 649) 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 20th 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 1; see also Nash and Bonesteel and Silberman). I suggest that the
simultaneous elevation and denigration of “high functioning” autistic characterizations
speak more to cultural preoccupations and anxieties with technology and masculinity
than they do to the “essential” autistic personality (see Nadesan 128-132). But most
concerning is that at times cognitive representations of high-function autism erase the
very humanity of their subjects by promulgating a vision of autistic intelligence as both
alien and machine-like.
Additionally at issue in understand contemporary preoccupations with autism are
heightened concerns about the role of the built environment in affecting disease and
disablement. Discourses of “risk” management, “environmental degradation” and, more
Nadesan, Constructing Autism
22
generally, discourses of modern “malaise” offer a range of interpretive frameworks for
understanding autism as an environmentally induced/mediated condition. Specifically,
understanding how autism as articulated as an “environmental” illness points to current
anxieties surrounding environmental contamination and government mandated medical
protocols (e.g., vaccinations) designed to manage populations and reduce risk at the level
of those populations. Framed from this perspective, “autism” sometimes signifies 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, are illnesses that “possess the power to define or
represent an entire era” (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, the social construction of autism must also be explored in the context
of an emergent, hegemonic discourse that has been labeled (by critics) the “geneticization
thesis” (Lippman 15). Critics of this discourse argue that it operates by reifying the
“gene” as a unified biological agent and a causal principle that is used in a reductionistic
fashion to explain ever more aspects of social life (see full accounts by Keller; ten Have;
Nadesan, Constructing Autism
23
Hedgecoe; Rabinow). 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 and because the reductionistic model of the gene erases the
complexity of synergistic bodily systems, systems whose operations are always/already
mediated by environmental inputs.
However, although the discourse of genetic determinism is rent by 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 553).
In other words, the new genetics discourse is a regime of truth that constructs individuals
as particular kinds of subjects.
Accordingly, Lemke suggests that the “social power” of genetic information “lies
less in the resurrection of genetic determinism and more in the construction of genetic
risks” (551). What Lemke is suggesting is that the power of the genetics discourses lies
less in its power to predict determinate outcomes than in its power to calculate “risks” in
relation to “deviations” from statistically generated profiles of normality. Thus, Novas
and Rose (486) suggest that genetic risk has been afforded a “new calculability,”
potentially leading to new strategies and technologies designed to assess and ameliorate
Nadesan, Constructing Autism
24
risky personhood. Risky personhood itself is evaluated in relation to a new and
ultimately normatively constituted “consensus genome” (Lemke 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
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 (History of Sexuality 139). Accordingly, as a disease of
modernization, autism speaks to new practices of biopower 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 “The Politics of Life
Itself”).
Novas and Rose 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 (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” (Novas and Rose
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.
Nadesan, Constructing Autism
25
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. Understand the social construction of autism
thus entails exploring 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.
Nadesan, Constructing Autism
26
i
Although Bettelheim is typically held responsible for the idea that mothers cause
their children’s autism, the idea that mothers’ behaviors lead to mental illness predates
Bettelheim’s work. Lauretta Bender suggests that Frieda Fromm-Reichmann’s 1948 idea
of the “schizophrenogenic mother” may have helped catalyze mother blaming.
Popularized renditions of objects relations theory promulgated by figures such as D. W.
Winnicott held mothers’ responsible for their infants’ successes or failures in achieving
stable egos (see Nadesan 95-102). However, the force and literary simplicity of
Bettelheim’s writing in The Empty Fortress led credence to Bettelheim’s writings in the
context of a Zeitgeist willing to blame mothers for all manner of developmental
irregularities.
ii
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 1).
iii
See Rose, Governing the Soul and Armstrong A New History of Identity for
discussion of the emergence of childhood norms of development.
iv
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
Nadesan, Constructing Autism
27
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 (quoted in Berrios 22). Instead,
Schneider forged a new approach to understanding psychopathology: an approach that
blended aspects of phenomenology, Gestalt psychology, psychoanalysis and biological
psychiatry.
v
In 1981 Lorna Wing 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
(69).
vi
See Freund and McGuire’s discussion of the western medical model, pp. 6-7.
vii
For a case study of an individual who has been retroactively labeled “autistic” see
Autism in History: The Case of Hugh Blair of Borgue by Rab Houston and Uta Frith.
viii
People who today exhibit symptoms that result in the label “high functioning
autism” would likely have escaped diagnosis in the early part of the twentieth century.
Nadesan, Constructing Autism
28
By the mid-twentieth century, such high-functioning individuals might have been
diagnosed with a personality disorder such as the schizoid personality disorder or might
have been regarded as a sociopathic or psychopathic.
ix
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 (174-183). Silberman
speculates that “math and tech genes” may be to blame (see also Nash and Bonesteel 40).
viii For an excellent discussion of the history mental illness, see Trent Inventing the
Feeble Mind and Wright and Digby From Idiocy to Mental Deficiency.
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