In the last forty years, autism rates have increased dramatically (Fombonne), and this increase is often described as "the autism epidemic." Whether the increased prevalence of autism diagnoses corresponds to an increased prevalence of autism or is the result of changing diagnostic criteria, greater cultural visibility, and intense parental, school, and medical surveillance is the matter of much speculation and debate (e.g. Gernsbacher et al.; King and Bearman). The debate over "the autism epidemic" extends far beyond questions of correct statistical method, however. The declaration of a situation as "epidemic" is a political determination with significant social implications for those whose bodies are flagged as risky (Foucault 15). As Richard Grinker writes, the word "epidemic"

implies danger and incites fear, calling up associations with plagues that can sweep through the streets, something contagious in the air that you breathe or in the food you eat, threatening the ones you love. With autism, the label of "epidemic" sounds both frightening and tragic (5).

Epidemics, in other words, are as much about meanings as they are about measurements. The word "epidemic" conjures a public body that must be protected at the expense of the bodies it pushes to the margins—harbingers of a tragic future that must be avoided. We may or may not be in the midst of an autism epidemic, but we are without question in the midst of an epidemic of autism discourse in which the meanings of autism and, by extension, the meanings of autistic people are proliferating at a rapid pace (cf. Treichler 11).

To give you a sense of that autism epidemic, between the years 2010 and 2012 there were 283,000 books published which featured the word "autism" somewhere in the title (Google Books). Included in this growing library are children's picture books (My Friend Has Autism); scientific monographs such as Cellular and Molecular Biology of Autism Spectrum Disorders; books on the purported vaccine-autism link, both pro (Andrew Wakefield's Callous Disregard: Autism and Vaccines, The Truth Behind a Tragedy); and con (Paul Offit's Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure); handbooks for parents (When Your Child Has Autism); and memoirs from parents raising autistic children (I Wish I Were Engulfed in Flames: My Insane Life Raising Two Boys With Autism). In addition to accounts of autism by scientists, doctors, and parents are those authored by autistic people themselves: memoirs (Look Me in the Eye), films (Autism and Me), and countless blogs and websites. In addition to providing an accessible social space for autistic people, these digital forums have provided the means for community building and political organizing (Kras). Many also offer nuanced analyses of the competing meanings of autism in the public sphere.

In an essay on the website The Thinking Person's Guide To Autism, for example, autistic self-advocate Lydia Brown compares "person-first" terminology ("person with autism") with "identity-first" terminology ("autistic person") and shows how each positions its user in relation to the meaning of autism. Person-first terminology is promoted by well-meaning parents and professionals who seek to avoid stigma, such as one mother Brown describes who "cringed" when someone referred to her son as "autistic," finding the word "offensive." Many self-advocates strongly object to person-first terminology, because it suggests that personhood can and should be separated from autism. To use "autistic person" is to do more than to use language preferred by self-advocates; Brown writes,

[W]hen we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people—and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.

Brown's argument reveals fundamental tensions in the epidemic of autism discourse that grow out of the struggle to define the cultural meaning of autism and its impact on the lives of autistic people. In this essay, I examine three recent texts that explore the definitional negotiations among diverse stakeholders: parents, scientists, doctors, policymakers, and autistic people themselves.

Of the three texts, Stuart Murray's Autism most clearly positions itself within the field of disability studies, and its DS bona fides are supported by blurbs on the back cover by Robert McRuer and Michael Davidson. Autism is the first book in Routledge's Integrating Science and Culture series which, explains editor Lennard Davis in the forward to Murray's book, will investigate the "cultural side of science and the scientific side of culture" (x). Autism delivers on that promise. The book is organized into three parts and seventeen brief chapters, which each address the meaning of autism in different discourses at different points in history, with an emphasis on the interaction between science and culture.

Part 1, "The Facts," looks at contemporary neurobiological and genetic theories of autism, and shows how scientific theories shape diagnostic procedures as well as therapeutic interventions. Although this section of the book is entitled "The Facts," the scientific story Murray tells is one in which facts shift and change according to dominant epistemologies, methodologies, and technologies, and in the end it is as much a story about what scientists don't know as much as what they do. There are no biomarkers for autism. And even though scientists have observed a number of differences in the brains of autistic people and the brains of neurotypical people, the meaning of those differences is unclear. As Murray points out, the meaning of autism that emerges from genetics and neuroscience has profound consequences for how we understand the link between autism and personhood. In an era in which subjectivity is understood as a property of the brain—what Fernando Vidal has called "the cerebral subject"— neurological difference is thought to reveal something essential about the person whose brain is being observed. While this thinking is clearly reductionist, biological difference has been rhetorically marshaled by a number of autistic self-advocates as a bond of kinship and evidence that "autistic" and "person" cannot be unlinked without damaging "autistic integrity" (Silverman 142; Barnbaum 204).

Part II further explores the link between autism and personhood by viewing this relationship through social, cultural, political, and medical histories. Leo Kanner and Bruno Bettelheim make their expected appearances in this section, as do self-advocates, parent advocates, and Rain Man. The histories Murray presents are not separate from one another, and the resulting historiographical tapestry is one of the book's unique contributions. Murray shows how these histories inform one another diachronically and synchronically, and also how they shape public understanding of autistic lives. Such histories converge, for example, in the current obsession with placing historical figures somewhere on the autism spectrum. Michelangelo, Thoreau, Melville, Auden, Orwell, Warhol, and a number of other celebrated artists have been suggested to have been "really" autistic, a "discovery" that revises our histories of medicine as well our histories of art—or does it? What, if anything, does viewing Michelangelo through an autistic lens reveal about either the man or his art? To search for autism in the past reveals more about our "peculiarly contemporary fascination with neurobehavioral difference" than it reveals about difference in the past, Murray argues. At its heart, such an effort is "still a comment about what we don't know" (42).

In many ways, the overarching theme of Murray's book concerns the origin of the epidemic of autism discourse, which he locates in the lack of scientific certainty. "The space that the absence of consensus has created has made it easy for argument and counter-argument to flourish," he writes (76). Part III examines a number of these arguments, such as the acrimonious debates over vaccination and the viability—and desirability—of a cure. Autism cannot be cured, Murray writes, because autism is not an illness (90). However, cure discourse and "curebie" thinking functions as a metaphor that leads people to prefer terminology like "people with autism" as well as images of puzzles missing pieces: the idea that autism can—or should—be untangled from the fabric of one's identity.

It is this desire to untangle autism and personhood that Chloe Silverman explores in her book Understanding Autism: Parents, Doctors, and the History of a Disorder. Understanding Autism is a social history of medical knowledge about autism, the development of treatments for autism, and the role that parents of autistic children have played in the construction of both. Although Silverman writes the history of autism as a history of parental involvement, during the course of her research, she also interviewed self-advocates, psychologists, geneticists, neuroscientists, and educators: "I wrote articles, corresponded, commiserated, and joked with any number of astonishing, resilient, and utterly brilliant parents, practitioners, scientists, and people with autism," she explains (19). As that quotation makes clear, one of the signature features of Understanding Autism is Silverman's position within its narrative: "I try to be honest about my affection for and caring about my subjects," she writes, "my emotional responses to the stories that they shared with me, and my own identity as an imperfect and invested observer of the human interactions that make up autism research" (21). Silverman's invocation of her own emotional investments is not a disclaimer: affect provides the unifying theoretical framework for the book, which presents the history of autism as a history of love and labor, including the love and labor of the author.

Understanding Autism is divided into two parts of three chapters each, and is separated by an interlude that ruminates on the political implications of Silverman's project. Part I provides a thorough history of autism's intersection with psychology and psychiatry, and shows how psychogenic explanations for autism were translated into therapeutic interventions. Silverman shows how the etiology (the study of causation), nosology (the classification of disease), and treatment of autism have been topics of intense disciplinary turf wars, and how parents of autistic children, as "expert amateurs" (93-124), have been instrumental in shaping the directions of research and treatment. The intertwining of parental love and professional investment—its own kind of love—drive these chapters forward, and reveal love's effects to be much more complicated than they first appear. The book's second chapter is a sustained study of psychoanalyst Bruno Bettelheim and the Orthogenic School at the University of Chicago. Bettelheim's widely read books Love is Not Enough (1950) and The Empty Fortress (1974) shaped public and professional thinking about autism for decades, particularly his contribution to the idea that autism was caused by mothers who did not love their children correctly. This chapter is a fascinating study of the boundaries of scientific expertise and the power of public image, and it stands as a cautionary tale of epistemic devotion. As Silverman points out, Bettelheim's passionate attachment to psychogenic theories of autism eventually led to his professional marginalization. In these chapters it becomes clear that there is no easy moral in the history of autism. The parental love that anchors the book is not saccharine: Silverman reminds us, for example, that many parents and professionals have advocated for the use of painful aversive therapies in the name of love for autistic children.

Understanding Autism's final two chapters further explore the intermingling of parents and professionals in the present moment. A reader interested in how scientific knowledge about autism is produced could find no more apt example than Silverman's fifth chapter, which explores the biomedicalization of autism by advocacy groups like Defeat Autism Now! As its name (and emphatic punctuation) implies, DAN! is an organization of parents and medical professionals who see autism as a scourge that must be prevented and fought with all available theories and treatments. Silverman shows how the group, which is often portrayed as encouraging "alternative" health remedies, promotes a biomedical approach to autism, in direct contrast with dominant medical understanding. The medical model of autism frames autism as a behavioral disorder; the biomedical model of autism presents autism as a chronic illness that can be cured through the use of supplements, elimination diets, and chelation (a risky and, as Silverman puts it, "unpleasant" therapy wherein binding agents are introduced with the intent of removing heavy metals from the body).

Parents who subscribe to the biomedical model of autism and the DAN! doctors who treat their children are often not taken seriously by the larger medical community. However, no parental activists have been more thoroughly vilified than those who have mobilized to fight childhood vaccines. Unlike many scholars who have investigated the vaccine controversy, Silverman treats anti-vaccine advocates with respect. That's not to say that she necessarily shares their views; rather, she asks that researchers and policy makers engage these parents, their practical knowledge, and their passionate arguments in conversation. This chapter will be, I suspect, the most difficult for DSQ readers—both for those who value autistic integrity as well as those who view anti-vaccination efforts as a pressing threat to public health. However, Silverman's sensitive treatment of DAN! and anti-vaccination parents in these chapters is in keeping with the larger aims of the book. As Murray points out, the best way to understand autism is as an argument among interested parties. Silverman reminds us that this argument need not be—as it so often is—a debate characterized by animosity and spite. "[R]espectful dialogue" is not only possible, but necessary, Silverman writes: "all of these groups—parents, self-advocates, researchers, and clinicians—need to share their particular insights to arrive at the best ways to understand, respect, and nurture people on the autism spectrum" (227).

Although Silverman is speaking mainly to an audience of science and medicine studies scholars, Understanding Autism offers a model of how to apply what we might think of as a disability studies sensibility to work that does not aim to speak exclusively to that audience. Silverman is clear that in her focus on medicine, "my discussion may seem remote from the concern in disability studies with recognizing each individual's fundamental value as a whole person with a right to autonomy over decisions about his or her care" (127). Yet Silverman is also sensitive to the objections regarding definition, treatment, and cure raised by many autistic self-advocates. Instead of relegating their critiques to a footnote, she weaves them into the broader narrative, showing how self-advocates, like parents, are also a rich source of expertise. Rather than draw easy lines—between the medical and social, private and public, parent and professional, adults and children, pro and con—Silverman draws a network among them, highlighting how the meaning of autism is an emergent property of complex relationships among kinship, investment, labor, and love.

The love that courses through Understanding Autism is vividly illustrated in Todd Drezner's Loving Lampposts, a documentary that deftly navigates the epidemic of autism discourse. The title of the film refers to Drezner's son Sam, who loves to visit the lampposts in Brooklyn's Prospect Park. After Sam is diagnosed with autism, Drezner wonders how he ought to interpret Sam's interest in lampposts. Is it a harmless pastime? Or should Sam's interest be read as a symptom that should be eradicated in the service of a neurotypical future? To find his answer, Drezner takes the audience on a tour of the contemporary autism landscape in which we meet many of the stakeholders described above. He begins by juxtaposing images of his son playing happily in the park with a number of alarming news reports, which feature a parade of commentators describing autism, sotto voce, as "devastating" and "mysterious" and life with autistic children as "hell." What parent wouldn't want to avoid such a tragic future for their child? That desire leads parents to DAN! conferences and to a number of intense, time-consuming physical and behavioral interventions. Silverman describes her reaction to her first DAN! conference as "utterly overwhelmed" (185) and Loving Lampposts makes it easy to understand why. In the film, we see DAN! doctors promote biomedical theories and elimination diets, while entrepreneurs hawk saunas, vitamins, and hyperbaric chambers to exhausted parents, all in the name of crafting a future for children that is autism free.

In many ways, the central question of the film is what will happen to Sam when he grows up. If DAN! parents and doctors hope for a future free of autism, what does an autistic future look like? To answer this question, in addition to interviews with a number of parents, doctors, and academics like Richard Grinker, Simon Baron-Cohen, and Paul Offit, Drezner also introduces the audience to a number of autistic adults. We meet Dora Raymaker (co-director of the Academic Autistic Spectrum Partnership in Research and Education); Stephen Shore (a professor at Adelphi University specializing in music therapy); Sharisa Kochmeister (former president of Autcom, an advocacy organization devoted to social justice); Johnny Seitz (a performance artist), and a number of other autistic people who are not living with autism, but living autistic. These autistic adults, Drezner explains, show us

just how tricky it is to judge an autistic person's life. Is an autistic woman who directs academic research about autism recovered? What if the same woman has trouble speaking and uses text-to-speech software to communicate? Is an autistic man who lives in his own apartment recovered? What if his mother must hire people to do his laundry and take him out in the evenings?

For Drezner, the question of recovery is not a medical question of whether the people he interviews have "recovered"—rather, it is a question of whether they have the technology, accommodations, and social support they need to flourish.

What is remarkable about Loving Lampposts is how it performs the respectful dialogue Silverman hopes for. Throughout the film, Drezner treats each of his subjects with an even-handed regard, even as it becomes clear that his sympathies—perhaps due to his many interactions with autistic adults—lie with the neurodiversity movement and those parents who meet their autistic children where they are, as they are. Like Silverman, Drezner concludes his film with a comment on the importance of love, which nicely frames his interactions with other parents and offers a powerful answer to the question the film's title poses:

We all act out of love for our kids, and none of us knows for sure if we are doing the right thing. Despite all the debates about autism, that is the one thing that unites us. Some people might tell me that Sam's love of lampposts is autistic behavior and I should try to get rid of it. I can only say that love is not what makes us sick. It is, we've always been told, what makes us human.

Each of the three texts reviewed here puts autistic children and their parents at the center of the story, a move that reflects the dominant cultural understanding of autism as a condition of childhood. As Silverman notes, this understanding of autism has had "tragic consequences" for autistic adults who "have fallen outside the purview of state-sponsored educational or therapeutic programs" (17); moreover, I would add that it also functions to infantilize them in the public imagination. Yet, although autistic children are at the center of these texts, each—particularly Loving Lampposts—is careful to explain that not only do autistic children grow up, but the autistic adults they grow up to be also have much to offer parents of autistic children. First, adult autistic people offer a compelling vision of an unrecovered yet untragic future in direct contrast with the hellish picture painted by popular media narratives of autistic life. And second, autistic people are an important, and often untapped, source of expertise on autistic children.

Disability studies scholars interested in researching or teaching autism in the midst of the epidemic of autism discourse have an overwhelming number of texts to choose from. Consonant with the DS ethic of according epistemic authority to self-representation, any DS conversation of what autism means ought to begin with the voices of self-advocates. Yet the cultural meaning of autism is much broader than the meaning of autism in an individual life. The three texts of this essay offer a way to think through the meaning of autism as it emerges in the concordance and discordance of a chorus of voices—parents and professionals, scientists and therapists, workers in social services and workers for social justice, autistic adults and autistic children—and how that meaning shapes the social affordances, the political possibilities, and the everyday lives of autistic people.

Works Cited

  • Barnbaum, Deborah R. The Ethics of Autism: Among Them, But Not of Them. Bloomington, IN: Indiana University Press, 2008.
  • Brown, Lydia. "Person-First Language: Why It Matters (The Significance of Semantics)." The Thinking Person's Guide to Autism. November 30, 2011. http://www.thinkingautismguide.com/2011/11/person-first-language-why-it-matters.html. Accessed February 20, 2013.
  • Fombonne, Eric. "The Prevalence of Autism." JAMA 289 (2003): 87-89.
  • Foucault, Michel. The Birth of the Clinic: An Archaeology of Medical Perception. New York: Vintage Books, 1994.
  • Gernsbacher, Morton Ann, Michelle Dawson, and H. Hill Goldsmith. "Three Reasons Not to Believe in an Autism Epidemic." Current Directions in Psychological Science 14.2 (2005): 55-58.
  • Grinker, Roy Richard. Unstrange Minds: Remapping the World of Autism. New York: Basic Books, 2008.
  • King, Marissa and Peter Bearman. "Diagnostic Change and the Increased Prevalence of Autism." International Journal of Epidemiology 38.5 (2009): 1224-1234.
  • Kras, Joseph F. "The 'Ransom Notes' Affair: When the Neurodiversity Movement Came of Age." Disability Studies Quarterly 30.1 (2009).
  • Treichler, Paula A. How to Have Theory in an Epidemic: Cultural Chronicles of AIDS. Durham, NC: Duke University Press, 1999.
  • Vidal, Fernando. "Brainhood, Anthropological Figure of Modernity." History of the Human Sciences 22.1 (2009): 5-36.
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Copyright (c) 2013 Jenell Johnson



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