Trapped in the Self

Autism and Gender: From Refrigerator Mothers to Computer Geeks
By Jordynn Jack
Urbana, Chicago, and Springfield: University of Illinois, 2014, 306 pp., $30.00, paperback

Reviewed by Ellen Herman

Long before autism existed as a clinical syndrome, it described a state of being that placed gender at the heart of selfhood. In 1911, the Swiss psychiatrist Eugen Bleuler used the term “autism” in a book about dementia praecox, a debilitating psychotic disorder that was synonymous with stigma, hopelessness, and institutionalization. As Bleuler understood it, autism summarized one particular characteristic of adult mental illness: a state of insulation from reality so complete that it locked out other human beings while locking its victims into unreachable interior worlds. By the late 1920s, schizophrenia had overtaken dementia praecox as a diagnosis, but autism was still applied to children and adults whose emotional and interpersonal experiences appeared remote, solitary, and cut off, and therefore not really emotional and interpersonal at all.

Extreme isolation was profoundly debilitating, but observers have always appreciated that milder variations were linked to qualities such as self-reliance and independence. It is therefore no surprise that autism was observed far more often in boys and men than in girls and women. This pattern became even more entrenched after autism was declared a discrete condition and not merely one feature of other mental pathologies. In the early 1940s, Leo Kanner at Johns Hopkins in Baltimore, Lauretta Bender at Bellevue Hospital in New York, and other pioneers in child psychiatry documented the constellation of symptoms we now call ASD, or Autism Spectrum Disorder.

At that time, children were classified as having “childhood schizophrenia” or “childhood psychosis”; however, their behavioral profiles would make them recognizable as autistic today. Affected individuals were mesmerized by objects but indifferent to people, often had feeding difficulties in infancy, reacted fearfully to loud sounds and other sharp sensory inputs, enacted peculiar rituals obsessively, possessed unusually restricted interests and, if they had language at all, routinely confused “I” and “you.” Some displayed echolalia, repeating other people’s words rather than communicating with words of their own. These children tended to come from well-educated, affluent families in which fathers (and sometimes mothers too) worked in professions such as science, engineering, and medicine. The “outstanding” problem in autism, according to Kanner’s now iconic 1943 article, “Autistic Disturbances of Affective Contact,” was “the children’s inability to relate themselves in the ordinary way to people and situations from the beginning of life [emphasis in the original].” The motor driving autism was “a powerful desire for aloneness and sameness.”

Almost everything about autism has changed since 1943: the words we use to describe it, the researchers who study it, the debates about what causes it, the number of people affected by it, public attitudes toward it, and the treatment options and educational opportunities that face parents whose children live under its description. But one might also say that nothing has changed. Social disconnection and emotional distance were the quintessential signs of autism from the beginning. They remain so today.

One recently influential theory is that autism amounts to a highly concentrated version of masculinity. The British researcher Simon Baron-Cohen proposed this in his 2003 book, The Essential Difference: Men, Women, and the Extreme Male Brain. We are all familiar with the cultural stereotypes that tie autism to male gender. From Dustin Hoffman’s character in the film Rain Man (1988), to Star Trek’s Dr. Spock and The Big Bang Theory’s” Sheldon Cooper, autistic archetypes are male. Representations of Asperger Syndrome are overwhelmingly so. Asperger’s is named after Hans Asperger, a Viennese pediatrician whose 1943 article describing autism wasn’t widely known in the English-speaking world until the British researcher Lorna Wing rediscovered and publicized it in the early 1980s. Asperger’s is widely designated as “high-functioning” autism. It has cemented popular associations between technical and quantitative skill, on the one hand, and social and emotional cluelessness, on the other. Mark Zuckerburg, the founder of Facebook, is rumored to have Asperger’s, and so are many other Silicon Valley titans. During the current moment of technological and neuroscientific dominance, few obstacles remain to asserting that there definitely are male and female brains, or that geekdom has neurological underpinnings.

The move from masculinizing autism to feminizing its opposite appears effortless. While boys specialize in systematic and abstract cognitive operations that make them good at math and bad at appreciating the mental states and emotional experiences of others, girls are empathizers. They do not find the ABCs of relationships mysterious. Their brains are wired to detect interpersonal subtleties, and they devote considerable time to thinking about what other people are thinking. In the language of autism research, girls are experts in “theory of mind.” There is less resistance to these propositions among feminists than in the past, perhaps because so many younger women have grown up with and now work in the neurosciences. We may have cheered when Maryam Mirzakhan became the first woman awarded the Fields Medal, the biggest international prize in mathematics, in August 2014. But it was unsurprising to learn at the same time that 83 percent of Google’s engineers and seventy percent of its managers were male. The combined pressures of nurture and nature tenaciously push girls and women toward work and family lives centered on emotional intelligence, relational know-how, and caring labor.

One central complaint of Jordynn Jack’s Autism and Gender is that the autistic condition has so systematically excluded girls and women that we often cannot see autism when girls and women experience it, a fact that leads, in circular fashion, to skepticism that female experiences qualify as autism at all. Jack is right. Many autism studies do not even include female subjects; their premise is that boys typify autism. Even though a woman, Temple Grandin, is the most famous autistic individual alive in the United States today, her powerful voice cannot singlehandedly stem the flood the stories that implicate male gender in autism. Just think about how parents respond to princess preoccupations or ballerina fantasies, or how they manage some girls’ insistence on having the color pink everywhere. These represent restricted interests and obsessions with sameness, but we tend to categorize them as harmless aspects of femininity, even when they become enduring traits of personality.

Jack’s field is rhetoric, and her argument is that gendered narratives litter our cultural conversation about autism. Stock characters shape whom we think has autism, what we think their families are like, and whose voices we take seriously on the subject. Autism and Gender explores four gendered characters in depth: the refrigerator mother, the mother warrior, the computer geek, and the autism dad. A final chapter asks whether neurodiversity, a concept dating to the late 1990s, might undermine the deeply gendered foundations of autism narratives. Jack’s conclusion is that it probably won’t. “For now…autism remains, and likely will remain, a rhetorical disorder,” she writes. Whether or not readers are acquainted with Jack’s academic vocabulary, her point is that there is no autism without gender. One cannot contemplate the former without bumping headlong into the latter.

Jack details well-known and obscure episodes in autism’s cultural history. She outlines the familiar contours of mother-blame in the mid-twentieth century but also illustrates how new stories about maternal responsibility emerged through creative use of rhetorical strategies that transformed women from villains into heroes. The best example of this is Clara Park’s 1967 book, The Siege. Even without knowing anything about Park’s family, the title implies a lengthy, quasi-military campaign to breach the fortress of autism. Park’s memoir about the first eight years of her daughter’s life was also a remarkable and moving story about Park’s own intelligence and perseverance. At a time when many believed that maternal indifference or hostility provoked autism, Park worked tirelessly and without bitterness to recruit her daughter into the ordinary routines of family life. Jack interprets the book as a “quest narrative,” a genre emulated by countless writers in subsequent decades as they set out on autism journeys of rescue and cure (and one that, in literary history, has usually involved a male protagonist). .

By the end of the twentieth century, the poisonous “refrigerator mother” was replaced by a very different gendered character, the “mother warrior.” The term was coined by Jenny McCarthy, a celebrity champion of the movement against childhood vaccines after her son, Evan, was diagnosed with autism in 2005. How could McCarthy, a fierce activist determined to save her child and others by any means necessary, not signal progress? According to Jack, this total motherhood imposed its own punishing discipline on women. “Mother warriors” were required to sacrifice everything—work, romantic partners, and all their time and money—before they could claim the credentials of the “good mother.”

Jack speculates that behind the autism supermom lurks the citizen that neoliberal economies and governments demand: one who accepts full responsibility for his or her own physical and mental health. This is intriguing and merits further investigation. Mothers of disabled and sick children have been on the front lines as “mother warriors,” but Jack’s suggestion links them to virtually everyone else. Why are we now all being asked to continually monitor ourselves and our children for early warning signs of depression, obesity, dietary allergies, and environmental toxins, to name only a few risks? Has old-fashioned mother-blame morphed into a comprehensive new standard of self-policing? There is nothing wrong with taking care of one’s body and spirit. It’s something we should all do! But emphasizing personal responsibility so exclusively retreats from the core insight of social welfare and public health: for individuals to take meaningful charge of their health, well-being must be sustained in communities. It is both ironic and tragic that childhood vaccines epitomize this logic. No individual or family can control measles or whooping cough absent population-wide immunity. Yet parents who have refused vaccines since 1998, when their possible implication in autism was first publicized, have helped to spread dangerous, preventable childhood diseases.

Jack’s perceptive book probes the persuasive power of autism’s characters. It is less concerned with whether storytellers actually believe they are warrior mothers or fix-it dads than with the effects of those circulating narratives. (There is a long history of paternal narratives about autism, probably because of the disproportionate impact of the diagnosis on sons.) Jack is inspired, as many feminist scholars have been, by philosopher Judith Butler, who described how “performativity” reveals gender as a tacit consensus about what is and is not normal in men and women. Before Butler, the sociologist Irving Goffman devoted his career to documenting the dramaturgical construction of identity, illustrating how “the arts of impression management” made people up. For Goffman, the social world of masks and roles was the only world, no matter that acting out identities was treacherous and subject to error. Declaring theater to be authentic and placing nature on our social stage remain provocative moves. They are all the more bracing during this time of technological triumph, when the headlines insist that our genes are us, our biochemistry is us, and, above all, our brains are us. Autism and Gender directs our attention elsewhere, to the essential selfhood that inhabits the realness between us.