This paper explores the figuring of autism as both threat and mystery within medico-therapeutic discourses. These figurations carry powerful meanings that may be drawn upon to further scientific, therapeutic and political projects. Despite having its origin in the "helping professions," such imagery is damaging to people with autism, but it does not stand uncontested. Counter-figurations — representations offered by people labeled autistic and their allies — challenge dominant medico-therapeutic narratives in order to make positive self-definition possible. Contestation over the meaning of autism pointedly demonstrates that, despite being a biogenetic condition, ASD has clear sociocultural and political dimensions that affect how neurotypicals act toward those labeled autistic.


Before beginning, it is important to state that science is a social construction. This is a view that stems from the (inter)disciplinary traditions of the philosophy and sociology of science and science and technology studies. While I do not cite these traditions specifically in my analysis, the theoretical background that informs this paper draws on insights from theorists such as Foucault (1965; 1977), Latour (1986), Harding (1986, 1991), and Kuhn (1962). Like these authors, I do not intend to suggest that science itself is a fiction, or that medicine and therapy have no useful role to play in understanding autism and supporting those so labeled. Nor do I claim that scientific approaches inevitably or invariably pathologize. Rather, the argument I advance here is that science, far from the strictly objective enterprise it claims to be, must be understood as a human activity, and as such, it is not free from the workings of power or the effects of culture, politics, ideology, assumption and bias. Thus, it ought to be attentive to the ways in which it represents embodied human differences, for such constructions have profound effects on the lives of the people they represent. Too often scientific research that aims to understand the physiological bases of embodied human difference pathologizes the conditions under study to the detriment of those labeled with the condition. As I discuss in the final section of this paper, this need not be so.

Nadesan (2005) suggests that the significance of studies that examine the social construction of autism "extends beyond 'autism' as a distinct disorder to include the ideas and practices whereby we constitute everyday life and social institutions, including the processes that will ultimately produce the opportunities for personhood in the early twenty-first century" (Nadesan, 2005, p. 3). I, too, hope that by examining the discursive construction of autism as mystery and threat, I may contribute to a richer sense of how social institutions such as medicine and therapy define embodied difference. We need to understand the power that is at play in these processes, the impact of these representations on the disciplinary fields that produce them, and the ways in which these representations affect the lived experiences of people labeled autistic and their families. Broderick and Ne'eman (2008) have argued for the importance of counter-narratives to the project of cultural critique and resistance to hegemony, and I will argue for something similar: the importance of counter-figurations.

In her book Figurations (2002) Claudia Castaneda examines how certain types of human bodies become cultural figures, which are then used for cultural and political purposes. Specifically, Castaneda examines the figure of the "child," arguing that children are conceptualized as potentiality and that this conceptualization is key to both their availability and value as a cultural resource (p. 1). For Castaneda, the repeated figuration of the "child" as an "entity in the making" contributes in a constitutive way to the "(adult) making of worlds, particularly the worlds of human nature and human culture" (p. 1).

Castaneda provides several examples of how nineteenth century scientists drew upon the potentiality of the "child" to further their projects. For example, Charles Darwin figured the child in his theory of evolution and in evolution's sociocultural counterpart, the hierarchical ordering of cultures and races around the world. Based on the study of his own son, Darwin argued that as individual children develop into adults, they recapitulate stages in the evolution of their species. In this way, he claimed that childhood fears were a remnant of human evolution — the savage of long ago in the child of his day.1 The notion that the emotions and experiences of primitive ancestors were somehow encoded in contemporary individuals by the selective pressures of evolution became widely accepted at the time. Western knowledge-makers hierarchically ordered differences among humans on a global scale according to the degree to which they had "traveled" along the supposedly normative developmental trajectory of Western bodies.2 Not surprisingly, the most developed people, according to this formulation, were those responsible for its creation: white, Western males. The child was literally at the center of such developmental analysis:

From the 'savage' urban poor child, to the child at the 'uttermost ends of the earth,' to the bourgeois child in the nursery — all were brought under the scientific gaze, where their bodies materialized a continuum of normal and pathological development that simultaneously told a story of human history — and of human mind, desire, and moral justice (p. 41).

For Castaneda, because the "child" connoted potential — and because actual children did not speak for themselves in these representations — it was available to various cultural projects. But in order to continue to serve their figurative function, children had to develop along a normative trajectory, as defined by medical science. The same is true today. Children are not guaranteed adulthood; at any point they may stray from this trajectory into pathology. Thus, as Castaneda emphasizes, normativity is always threatened by a disruption of development. The wide range of psychological theories, government structures, and welfare policies geared towards children's "normal" development reveals the value placed on their construction as potentiality in Western culture (p. 4).

Castaneda's analysis is a useful framework on which to build my own analysis of people labeled with ASD. According to a Western medicalized view, ASD imperils the normative trajectory of development thus interrupting the child's potential. This cultural narrative speaks of disorder and tragedy, and it is routinely put forward by the human sciences as they attempt to normalize autistic and other "deviant" bodies.

That autism has become increasingly visible over the last two decades, despite its availability as a diagnostic category for the past six, might be explained in part by its figuration as a mystery in medico-therapeutic projects, especially those that focus on the brain as the locus of the "disorder" and that employ cutting edge imaging technologies, such as positron emission tomography (PET) and functional magnetic resonance imaging (fMRI) scans. Figured as mystery, autism compels exploration and serves as a testing ground for further technological development. Because autistic bodies are said to be hiding secrets, their discovery might answer basic questions about human nature generally. These technologies also hold the promise of eliminating autism as a threat to the "normal" development of children. The insistence on pathological meanings of ASD — as producing tragic isolation, for instance — creates the need for the kind of authoritative truth claims that science generally makes. Put simply, the figurations of autism as "mystery" and "threat" serve to promote the autism industry.3 They are the raison d'etre of actors in medical and therapeutic fields who mobilize to treat those with the condition. In the process, these actors adhere to, and align with, certain cultural values and norms, thereby safeguarding the privilege of medicine to speak about and act upon the body, and by extension, to maintain a particular vision of social order.

Autism as Mystery: A Resource for Understanding Humanness

Rosemarie Garland Thomson (1996), a scholar of corporeal difference and culture, suggests that the anomalous body is never just itself, taken on its own terms, but "betokens something else, becomes revelatory, sustains narrative, exists socially in a realm of hyper-representation." With the cultural ascension of science over religion, bodies "became an index of Nature's fancy or — as they now appear in genetics and embryology — the Rosetta Stone that reveals the mechanics of life" (p. 3). Although bodily difference has always been acknowledged, its meaning varies according to the historical period in which it appears. "Because such bodies are rare, unique, material, and confounding of cultural categories, they function," Thomson contends, "as magnets to which culture secures its anxieties, questions, and needs at any given moment. Like the bodies of females and slaves, the monstrous body exists in society to be exploited for someone else's purposes" (p. 2). Thus, the meaning of bodily difference is always culturally determined and, she implies, at the mercy of dominant institutions.

For many researching the causes of autism, the condition holds clues to solving the broader mystery of human ability. It can be put to use, exploited. In a New York Times article, Erica Goode (2004) writes, "In learning more about autism…scientists may also increase knowledge about language development, emotion, even friendship and love…autism remains one of the most puzzling of childhood disorders…but in recent years, investigators have begun to dislodge some of its secrets" (para. 7). Dr. Thomas Insel, the director of the National Institute of Mental Health, is quoted as saying that " 'ultimately, research on autism may teach us a lot about what it means to be social' " (Goode, 2004, para. 8). Goode points to recent studies that claim to have identified both structures in the brain and specific genes responsible for some aspects of autism. Such knowledge, she says, could lead to effective medical treatments or gene therapies, an advance upon today's ABA protocols. These statements figure autism as a neurological anomaly that serves the greater scientific and human good. In short, autistic inability helps us to understand our truly remarkable selves.

Of course, medical practitioners' use of disorders such as autism in this way is not new. Pathological bodies have appeared in Western medicine since at least the 18th century, and we're now accustomed to a "normal" body presumed to be universal (Davis, 1997; 1995). By studying ostensible examples of abnormality, medicine establishes — through the identification of difference — what normal "ought" to be (Canguilhem, 1989). From the very beginning of research into this condition, autism has offered an opportunity to sharpen medicine's understanding of cognitive development in humans. Two of the key figures in the creation of autism as a diagnostic label, Leo Kanner and Bruno Bettelheim, cited the importance of autism research for what it might reveal about human development generally. For example, at the end of the seminal paper in which he outlined his view of autism, Kanner (1943) suggested, "A further study of our children may help to furnish concrete criteria regarding the still diffuse notions about the constitutional components of emotional reactivity. For here we seem to have pure-culture examples of inborn autistic disturbances of affective contact" (p. 250, emphasis in original).

Bettelheim, too, argued for the value of autism for understanding humanness. In part IV of The Empty Fortress (1967), he spends four pages disputing a "neurological theory" of autism proposed by Bernard Rimland (1964) — specifically, the claim that the source of autism is an organic difference in the brain (p. 401). Bettelheim and Rimland are in agreement, however, about one thing: the usefulness of autism to the field of psychology. Rimland quotes Sarason and Gladwin (1958): "The importance of these cases [of early infantile autism] to the development of the science of psychology would seem to be vastly beyond what their relatively rare occurrence in the general population would suggest" (Bettelheim 1967, p. 404, brackets in original). While disagreeing with Rimland's organic brain differences hypothesis, and championing a psychogenic etiology rooted in parental failures, Bettelheim in these passages transcends the disagreement over etiology: regardless of what may ultimately be found to be its cause, autism can further the development of psychological inquiry.

Consider how Bettelheim takes issue with Escalona's (1965) failure to note the potential contribution that people with autism could make to the advancement of the psychogenic approach in psychology by sharing their experience of the disorder once they had "recovered" enough to communicate coherently. This was a common practice of psychoanalysts: to use a patient's "uncovering efforts" to root out the nature of their psychic disturbance. In his version of therapy, Bettelheim saw autistics playing a key role in their own recovery, just as Freud urged the hysteric and neurotic to delve into the depths of their psyches to uncover the source of their disturbances (Bettelheim, 1967, p. 404). That Bettelheim favored psychoanalysis is less important for my purposes than the way he defended its privileged position as interpreter of the mind. As he promoted the usefulness of autism for understanding human development generally and for privileging a particular psychoanalytic approach, he was promoting a notion of expertise, a notion no different from that of Rimland and today's proponents of a neurobiological understanding.

While it is now widely agreed that Bettelheim's therapies were at best ineffective and at worst harmful to his patients and their families, he claimed that a number of his patients did recover. The most notable example was "Joey," a pseudonym of a child who lived at Bettelheim's Orthogenic School in Chicago. Bettelheim interpreted Joey's actions in psychoanalytic language, claiming that Joey's ailment, specifically his self-constructed "machine-powered body," served as a defensive mechanism against his indifferent mother. Joey's diagnosis and Bettelheim's analysis of Joey, including the claim that Joey recovered, have recently been questioned (Waltz, 2005). But the idea of recovery and its value to purveyors of specific treatments persist. Indeed, this idea helps to fuel the current cure agenda, as the next section will make clear.

At least in part, Bettelheim profited from the "exotic" nature of autism to build his own reputation, secure his position as a preeminent child psychiatrist, and advance the discipline of psychoanalysis. Biographer Richard Pollak claims that Bettelheim knew that the use of fictive technique and the inclusion of his patients' artwork led to an emotional audience response. As Pollack (1997) points out, "However genuine Bettelheim's desire to help autistic children may have been, he recognized from the start that the novelty and mystery of the disorder gave it considerable allure, and that his gift for retelling case histories only augmented this glamour" (p. 254). In this way, Bettelheim was engaged in a sort of empire building, both his own and that of psychology more generally. He was using autism as a powerful cultural resource to consolidate the power of psychoanalysis to make claims about human conditions that diverge from the norm.

Forty years later, the picture remains the same, even as the prevailing accounts of autism have changed dramatically. In A User's Guide to the Brain clinical psychiatrist John Ratey (2002) writes about current theories of brain development and functioning, providing a wide view of how the study of autism informs the human sciences. He notes that these theories no longer depict the brain as developing only in childhood but as ever changing and adaptable across the lifespan. Throughout the book, Ratey's discussion of brain research literature refers repeatedly to autism as an example of how brain development may "go wrong," and it cites specific regions of the brain allegedly responsible for the symptoms of autism. Referring indirectly to Bettelheim's etiological theory, Ratey states that autism is no longer thought of as the result of bad parenting, but is now "known to be an extreme case of a developmental pattern whose causes have little to do with the environment" (p. 6). According to Ratey, autism and a growing list of other "disorders" may be attributed to a "migration problem" in developing brains. It is the result of nerve cells that do not move to the structural locations for which they are intended (p. 24).

As noted, Ratey relates the work of other researchers who look to autism to provide clues about human development. A notable example is Eric Courchesne, who uses magnetic resonance imaging (MRI) to find areas of the brain that might be connected with autism. The Web site of his research group reports that he and his associates seek to "reveal the neural underpinnings of autism…. In this way we can discover how the brain changes across development" (Autism Center of Excellence). Courchesne et al (2005) suggest that congenital physical brain defects can inhibit the development of a "social brain," which makes possible social sharing and relationships. The group claims to have found a pattern of abnormally rapid brain growth, as evidenced by increased head circumference, in children who later received diagnoses of autism (Courchesne, 2004; 2003).

Ratey and Courchesne clearly situate their discussions of autism in the dominant neurobiological paradigm. Theirs is a medical model of disability that views autism as pathological, linking what they refer to as autistic individuals' inability to function socially to the disorganization and malfunctioning of their brains. As we have seen, science has a long tradition of establishing abnormality and making it generative — both with respect to advancing knowledge and devising treatments (Canguilhem, 1989). The study of autism, as conceived by Kanner and others of his generation, represented an opportunity to study an inborn phenomenon — nature before it had been altered by culture — so as to better understand cognitive and social development. Figured as mystery, autism promised to teach scientists how humans emotionally connect with one another. For Bettelheim, the study of autism was an opportunity to better understand the development and organization of the mind, but from within a psychoanalytic framework. Today, medical researchers see autism as an opportunity to comprehend, through evidence-based procedures, the relationship between bodies — specifically brains — and behaviors. However different, these knowledge-producing projects all constitute attempts by scientific actors to master the difference that is autism and to characterize themselves and their disciplines as best suited to the task.

Autism as Threat: Preserving the Potential of the Child

A different but related figuration of autism also deserves attention: autism as a threat to the welfare of individual children, their families, and ultimately the social order. One particularly notable example puts it this way, "Autism, as I see it, steals the soul from a child; then, if allowed, it relentlessly sucks life's marrow out of the family members, one by one" (McCarthy, 2007, p. xvi).4 In medical and therapeutic talk, training materials, and advertisements for various therapies, one commonly finds the words "fighting," "combating," "curing," and "defeating" — words usually mobilized in reference to fatal illnesses or mortal enemies, such as cancer or terrorists. Implicit in the idea of threat is the notion of resisting and defeating an enemy. The recovered and those facilitating this outcome become heroes by restoring the potential of children. In this section I examine how autism researchers have figured autism as a threat and how this figuration has contributed to the tremendous growth of therapies.

I begin by returning to the work of Bernard Rimland, which I discussed briefly in the previous section. In addition to researching and writing about autism, Rimland founded the Autism Research Institute (ARI) and an initiative called Defeat Autism Now! (DAN!).5 According to its Web site, DAN! brings together doctors with various specialties, nurses, psychologists, biochemists, and others to educate "parents and clinicians regarding research, appropriate testing, and safe and effective interventions for autism" (Autism Research Institute/Defeat Autism Now!). Researchers affiliated with ARI/DAN! advocate interventions aimed at the body and its bio-chemical processes, whose malfunction, they contend, causes autism. Interventions recommended to parents of autistic children by doctors associated with ARI/DAN! include chelation (which is supposed to extract toxic heavy metals such as mercury from the body), dietary regimes (which target gluten and casein as offending agents) and extensive vitamin supplements.

The notion that autism is treatable, and that one can "recover" from it provided one receives effective therapies, has been a continuous theme of Rimland and ARI. In his statement to congress, titled simply "Autism Is Treatable" (Rimland, 2003), Rimland calls for increased funding to support research into the efficacy of alternative biomedical therapies with an emotional appeal. "For the first time in history," he states, "there are successfully treated autistic children — living, breathing, speaking autistic children — living among us and enjoying their lives…[they] owe their liberation from autism to treatment modalities which were, and still are, ridiculed, reviled and rejected by most of the recognized authorities in the educational and medical autism establishments" (para. 6). Clearly engaged in a disciplinary turf war, advocating particular interventions and deriding other, more traditional therapies that he claimed were ineffective because they only addressed symptoms, Rimland argued that his approach treated the underlying, biomedical cause of autism.

To promote its approach, ARI launched a campaign called "Autism is Treatable," which encouraged the parents of "recovered" children to share their stories with ARI to counter the prevailing medical view of autism as a more or less static, lifelong disability. These stories of recovery along with their fear-inducing counterpart, stories of autistic regression, feature centrally in ARI discourse. During the 2005 DAN! conference, a video of "recovered" autistic children was shown to attendees.6 In the video, Lou Diamond Phillips leads approximately 10 "recovered" children through the audience to the stage, with the music of Los Lobos's "La Bamba," from the soundtrack of the eponymous film in which Phillips plays the protagonist Ritchie Valens, in the background. The playing of this song at the moment of introduction recalls for the audience the celebrity of Phillips, thus lending him — and ARI's efforts to "defeat" autism — more authority.

Upon taking the podium, Phillips says, "I have the great opportunity many times in my life to portray heroes on film and on television. Today it's nice to be here with some real heroes: these young people, and their families." The shot then cuts to the audience; we see women and men wiping tears from their eyes. Phillips goes on to say that he hopes to help break stereotypes by appearing in a soon-to-be-released film called El Cortez as a character with autism. He then interviews several children, asking them such questions as what are their names, what do they want to be when they grow up, and the like. Except for one child, who is also featured in the PBS video "Finding the Voices," no background information on their dis/ability is provided, only the assertion that they have all "recovered" from autism. In these children the threat from autism has been neutralized; they and their families are heroes who demonstrate that ARI's therapies work. Rimland and his colleagues also become heroes in this figuration, for it is they who conducted research to develop these therapies, thereby restoring the children's natural potential.

Such presentations are reminiscent of 19th century traveling freak shows, in which exceptional bodies were displayed for paying audiences. Freak shows, according to Garland-Thomson (1996), provided a social space in which the audience could point to an exceptional other — whose appearance was often highly exaggerated by freak show owners — and assure themselves of their own normalcy. Garland-Thomson contends that the "freak discourse" of this period survives today, albeit in altered form. I suggest that the display of "recovered" autistic children is one example. However, the dynamic is reversed. Having been recast as normal, recovered children display not their irreducible difference but the recaptured potential that bio-remedies make possible. Unlike the traditional freak show, the function of this spectacle is to heighten the audience's difference from the norm and to tempt members to purchase these awe-inspiring products.

In this biomedical framework, autism can only be viewed as a problem. The deficit-producing aspects of autism are emphasized — indeed, overemphasized — with no mention of the abilities that some researchers and autistics themselves believe to be the result of their neurological difference (e.g. Dawson, Soulieres, Gernsbacher, & Mottron, 2007; Dawson, Mottron, & Gernsbacher, 2008; Grandin, 2005). What is more, the many similarities between someone labeled with ASD and someone considered "normal" are entirely ignored. Rimland cited his son Mark, formerly labeled autistic, as both his early motivation for studying autism and evidence of the success of biomedical treatments. From the content of his testimony, it is clear that Rimland believed Mark would not have become a successful artist had he not received the types of interventions that ARI espouses. It does not occur to him that the bodily differences thought to underlie autism might be, in part, responsible for the artistic and other abilities that some people with autism possess. Nor does it occur to him that autism is genetic. His bio-medical approach presumes a kind of simple contamination — not a complex predisposition for the condition.

Even more important, Rimland can't fathom autism as a kind of identity. As many self-advocates presently insist, and as I will show in the next section, autism is part of who autistic people are, not something alien lodged within them that can be removed. These autistics and their allies typically reject pejorative understandings of autism and the desperate search for a cure. Rimland's one-dimensional theory of poisoning flies in the face of autistic people's lived experience, silencing it with the discourse of biomedical intervention. Neither an alternate way of being human nor even part of the human condition, autism for Rimland is a dire threat to be overcome, cured, and defeated.

Others who offer therapy figure autism as a threat to happiness, and they use this figure as an integral way to promote their services. In "Introductory Guide for Parents," Gutstein (2004) makes the case for using his Relationship Development Intervention (RDI) therapy program the following way:

What quality of life do you want for your child in 5, 10, or 20 years…Do you hope someday, he or she will: Not only talk fluently, but engage in genuinely curious conversations? Delight in a true friendship? Feel a sense of pride in being able to contribute to his or her community? Enjoy the excitement and comfort of a boyfriend or girlfriend and maybe even get married and have children? Feel capable and confident living an independent lifestyle? Experience the satisfaction and rewards of successful employment? There is now reason for hope: the RDI™ Program (p. 7).

Gutstein (2004) positions this program as the reason for parents to have hope based on claims of "translating the latest scientific research" to help children learn to make social connections (p. 5). He refers to purported differences between autistic and "normal" brains reported in research literature, though he does not cite specific articles. Additionally, he refers to rehabilitation research, again providing no references, that demonstrates the adaptability of brains, suggesting that "previously damaged and under used parts of the brain can be strengthened" (p. 5). He asks the reader: "What if there were exercises that created traffic to strengthen those pathways? That is what I set out to do in developing the RDI™ program" (p. 5).

In mobilizing neuroscientific concepts, Gutstein situates his therapeutic program squarely within the authority and power of scientific discourse. He exercises this power to support the claim that his is the "right" therapy for autistic children, indeed the "reason for hope" (p. 7). He directly plays on parents' grief over the loss of their "fantasized normal child" (Sinclair, 1993), the child they thought they had before the diagnosis (Dyches, 2004; McCubbin, 1998), to position his program as eliminating the threat to children's and families' well being.

Some in the medical community have even suggested that autism threatens national security. An organization named Physicians for Civil Defense has written about autism in several issues of its bimonthly newsletter, Civil Defense Perspectives. Originally founded to conduct research on, and raise awareness about, issues that imperil the United States, such as nuclear, biological, and chemical attacks, the group's concern with autism is striking. A 2004 article entitled "Mad Child Disease," discusses a presentation given by Dr. Boyd Haley, chair of the department of chemistry at the University of Kentucky, at the June 2004 meeting of Doctors for Disaster Preparedness in San Diego, California.7 Haley argued that autism — which he lumps together with attention deficit disorder (ADD) — is the result of children's increased exposure to mercury from sources such as dental fillings, which he suggests is passed through the mother's blood stream to the developing fetus, and of vaccines.

Haley argues that the effects of "mad child disease" will be enormous and will affect an entire generation of children. He cites declining test scores in schools, particularly on math exams, as evidence of the damage that autism can cause, and he links the reversal in performance by gender on these tests — in the past, boys generally scored higher than girls on math and science exams, but today girls score higher — to the 4:1 male/female ratio of autism diagnoses. Specious claims about the cause of declining test scores and the weakening US workforce aside, the inclusion of autism in a conference on threats to national security, by a group of doctors organized around that same end, reveals just how prominent and powerful is this figuration. The figure reifies autism as a condition that needs to be treated for the good of the individual and society, and it creates demand for professions that will meet this "threat."

But before such a figuration can do its cultural work, all sorts of social changes need to have taken place. Nadesen (2005) has argued that the diagnostic category ASD was only made possible by the transformation of medical practices and the evolution of disciplines such as psychology, special education, and social work in the early part of the twentieth century. In addition, broader changes have occurred over several centuries, notably the shift from feudal to industrial, and later, service based economies (Oliver, 1990). In such economies individuals compete with one another for the opportunity to trade their labor for a wage. This puts people with disabilities and their families in precarious positions, as it is they who must find ways of caring for their disabled family member for life. In this context, autism can be seen as directly threatening the integrity of families and their financial and emotional well-being. This precarious contingency makes autism fertile ground for the development of the threat metaphor and available as a rich resource for sociocultural projects in the human sciences and therapeutic realms. Understanding how this figuration is harmful to people with autism, particularly those who do not see it as a disorder that needs to be cured but rather a form of human diversity to be valued and supported, is the aim of the next section.

Counter Figurations of Autism: Autism As Identity

As should be clear, most representations of autism have been very negative. Yet, others resist pathologization, suggesting instead that autism can be viewed as a valuable way of being in the world. This is the message of what has come to be known as the neurodiversity movement, comprised of people with various disabilities — many of whom are autistic — and others who embrace embodied differences. There is a growing body of writing and other creative work that issues from this movement. Too numerous to comprehensively cover here, these activists include writers, organizers, academic researchers, computer scientists, artists, and musicians from around the globe. In this section, I discuss the work of several important figures who espouse this philosophy.

Founder of Autism Network International (ANI), an advocacy organization run by and for autistic people, Jim Sinclair remains one of the most prominent voices in the burgeoning neurodiversity and autism rights movements in the United States. In "Don't Mourn for Us" (1993), Sinclair argues against the representation of autism as tragedy, proposing that parental grief is not the result of autism per se, but of narcissistically projected hopes and dreams. While acknowledging that some grief is to be expected, Sinclair insists that it is both overdone and harmful:

This grief over a fantasized normal child needs to be separated from the parent's perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing to focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them (para. 3, emphasis in original).

Sinclair urges his readers to view autism from the perspective of autistic people. How are they to feel about themselves when others view them as fundamentally flawed, an abnormality to be eradicated? In Sinclair's judgment, parents' normative hopes must not be given priority over the personhood of their autistic children, as what amounts to the fetishization of the "fantasized normal child" is likely to harm children who cannot conform to normative standards. Instead, Sinclair suggests that parents make every effort to accept their children as they are while supporting their specific needs.

Ari Ne'eman is another prominent autistic voice in the neurodiversity and autism rights movements. Founder of the Autistic Self Advocacy Network (ASAN), Ne'eman's advocacy work has been key in a number of high profile issues, including the Ransom Notes ad campaign. According to the ASAN Web site, his advocacy work began when he asked school administrators to allow him into advanced courses in secondary school. He continues such advocacy today with a wide range of activities including organizing support groups for youth with disabilities, consulting with state and federal policymakers, and contributing regularly to influential blogs such as the Neurodiversity Weblog and Eduwonk. It is worth quoting in full ASAN's mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us! (Autistic Self Advocacy Network)

A powerful expression of the right to a satisfying and self-determined life, the statement demonstrates the profoundly political nature of disabilities. In highlighting the fact that an autistic person's point of view is rarely sought, it challenges the power of those who would speak for, and make decisions about, autistic people. The silencing of autistic people is based on the widespread acceptance of the normal/pathological dualism that assumes only one correct form of embodiment. Here, ASAN puts forward the notion of neurological diversity to undermine this dualism and the power than emanates from it. In doing so, it claims the right of autistic individuals to exist, to not be seen as defective or pathological. In issuing this statement, ASAN offers a strong alternative to the common understanding of autism, and it reframes the discussion of this neurological condition in terms of civil and human rights.

Other autistics possess equivalently strong social and political agendas. Amanda Baggs maintains a weblog entitled "Ballastexistenz," a German word in eugenics propaganda that means "ballast life." The word suggests that people with disabilities are essentially a living weight on society. About her use of this term Baggs writes,

I put this name on my blog in witness to what can happen, has happened, and is happening when real human beings are thought of this way. I am a non-speaking physically disabled and autistic woman who's lived in institutions, whose income comes from a disability check, and whose services are funded by the state. I am and have been exactly the sort of person who is meant when these awful concepts are used. I and the people I know and love are people, not burdens and ballast and wastes of space and money. All these ideas do is dehumanize us, and in contrasting these words with my real life I hope to show how wrong they are when applied to anyone.

Baggs rejects the devaluing of people with disabilities, especially the suggestion that they are unproductive and subhuman. As technologies continue to be developed that screen for potentially disabling conditions in utero (Parens, 2003), and as parents are often counseled to abort fetuses that test positive for such conditions (Hubbard, 1997), the specter of eugenics looms large. Through her humorous Weblog and interviews, Baggs demonstrates that her outward appearance in no way indicates the person she is capable of becoming if given the chance and the supports.

But neurodiversity is not just the philosophy of self-advocates like Sinclair, Ne'eman, and Baggs; a few scientists are themselves adopting this view. As it turns out, there is nothing inherently pathological about autism: it must be figured as such. Murray, Lesser (who is himself autistic), and Lawson (2005) offer a model of the mind that relies on an alternative notion of attention. They propose that attention is a mental resource limited by the "finite supply of metabolites available to the brain" and assume that the brain is the biological basis for mental processes (p. 140). In contrast to the usual deficit-centered theory — in which deficits are figured as the result of "miswiring" in the brain — they hypothesize that autistic and non-autistic brains differ according to "the strategies employed in the distribution of scarce attention" (p. 140). According to their model, people range from monotropic (attention focused more or less tightly on one thing at a time) to polytropic (attention divided among several things). They liken polytropic attention to a river delta, where attention is spread out over a wider area and is less deep. They compare monotropic attention to a canyon, where attention is focused and indeed deeper. Monotropic attention is the autistic mode of attention. By locating an "autistic form of attention" alongside a "normative" type, their model accounts for reported differences in the ways that autistic people perceive the world without recourse to judgments of deficiency.

Murray notes that western culture does not respond well to people of a monotropic disposition, and he suggests that other cultures are more accommodating of such embodied differences. "I remember someone talking about growing up in Yemen, where obsessive intellectuals — autodidacts — didn't have to go to school. Instead, people tied their shoelaces, buttoned their shirts correctly and made sure they ate. They only had to learn how to do one job" (Burne, 2005, para. 47). Like Sinclair, Murray, Lesser and Lawson argue that autism is not pathological, but a form of human diversity that should be accepted. Once it has been accepted, the world can be differently organized. As Lesser puts it, "About 50 years ago if you had a twisted or deformed foot, surgeons would cut the muscles so that it would fit the shoes they had. What we want is a shoe that fits us" (Burne, 2005, para. 46). With their alternative model of the mind, Murray, Lesser and Lawson demonstrate that science and medicine need not view autism as an inherent problem. In other words, they provide additional evidence that the dichotomy of normality/pathology is an ideological construct rather than a universal truth.

Similarly, a leading research team at the University of Montreal's Laboratoire de Neurosciences Cognitives des Troubles Envahissants du Developpment has also engaged an approach to the study of autism that does not pathologize. Led by Laurent Mottron, the team includes Michelle Dawson, who is autistic. They do not assume that autistic brains are broken and need to be fixed, but rather that they work differently than typical brains and need to be understood. Indeed, their work speaks of the skills, perceptual acuities, and intelligence of autistic people rather than of their supposed deficits. Employing the latest neurological imaging technologies and cognitive assessment tests, they have shown that autistics may be superior to neurotypicals in problem-solving and visual acuity (Soulieres et al., 2009) and that the intelligence of people with autism has traditionally been underestimated (Dawson, 2007). Thus, it may be the case that autistics appear deficient because they have traditionally been assessed according to a model of embodiment that assumes one developmental trajectory, one "normality" that is too narrow to include them. It is not science as a method of knowledge construction per se that is to blame for the misapprehension of autism, but rather the unquestioned assumption of a unitary normality. Perhaps, following more progressive approaches such as these, science will one day convincingly explain the human cognition in all of its complexity and in ways that do not marginalize and exclude.


Throughout this paper I have explored how autism has been figured as threat and mystery within medico-therapeutic discourses. I have argued that these figurations are important to those labeled autistic, as they have direct impact on their identities and possibilities for personhood. As Foucault (1965) pointed out with respect to the construction of mental illness, the discourse of psychiatry was essentially a monologue, established on the basis of the enforced silences of those "madmen" who were being spoken about (xi). Similarly, in the representations of autism produced within medico-therapeutic fields, the person labeled autistic rarely has a voice. Instead, it is the expert who speaks from a position of authority in academic journals and other organizational literature. Yet, counter-figurations have begun to flourish. People with autism are rejecting dominant discourses, figuring autism as neurodiversity, not pathology. In so doing, they open up spaces for valued social identities and alternative embodiments.

Works Cited

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  1. This notion was later extended by Ernst Haeckel. In his famous pronouncement that "ontogeny is the recapitulation of phylogeny" Haeckel suggested that the developing fetus in the womb (ontogeny) displays the historical stages of evolutionary development that the human species (phylogeny) moved through: in the early stages of development human fetuses have "gill pouches" that resemble those of fish; later a tail that becomes the coccyx or tail bone; and at one stage, like most mammals, they are completely covered with hair that eventually disappears. While this theory has been widely rejected in its strongest form — that individuals actually move through stages where they are completely the same in form to evolutionary ancestors — its influence may still be seen. For example, Ratey (2001), in his account of early research on the brain, claims that the brain's structures "…contain(s) the evolutionary history of all brains" (9). For further discussion, see Haeckel, E. 1905. Riddle of the Universe at the Close of the Nineteenth Century; and Gould, Stephen Jay. 1977. Ontogeny and Phylogeny. Cambridge: Harvard University Press.

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  2. Evolutionary psychology today still receives wide recognition. Evolutionary scientists today believe that DNA contains the record of human evolution. Though not uncontroversial, it routinely makes claims about present day human experience on the basis of ancestral experiences, which are picked up by popular media outlets. For one of many examples, see http://news.nationalgeographic.com/news/2001/10/1004_snakefears.html

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  3. I do not discuss here another highly visible and powerful figuration of autism, the narrative of tragedy. For a discussion of tragedy narratives and disability, see Oliver, 1990.

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  4. This quote is reminiscent of the Ransom Notes ad campaign launched by NYU's Child Study Center in which mock ransom notes were written as if by particular disabilities, including autism. The autism ransom note read: "We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives. This is only the beginning. — Autism" (http://jfactivist.typepad.com/jfactivist/2007/12/ransom-notes-ad.html). NYU claimed that it launched this campaign to raise awareness about these disabilities. After leaders in the neurodiversity and disability rights movements spoke out against it, the campaign was pulled.

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  5. In suggesting that autism be defeated, Rimland conflated autism, a result, with its cause, which he suggested was toxicity from various sources. If he did not conflate result with cause, he might have renamed his organization Defeat Mercury Now! instead of Defeat Autism Now! The potential effect of this is the vilification of those labeled autistic.

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  6. Emails sent to the ARI list serve promoting the conference (dated October and September 8, 2005) announced in bold that a video of "recovered" autistics taped during the 2004 meetings would be shown during the 2005 conference.

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  7. Rimland presented a talk at this same conference of Doctors for Disaster Preparedness, immediately following Haley's, presumably bolstering Haley's argument by presenting an authoritative voice from the autism research community.

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