Jordynn Jack is an associate professor of English at the University of North Carolina-Chapel Hill. She is the author of Autism and Gender: From Refrigerator Mothers to Computer Geeks. She recently answered some questions about her book.
Q: Autism, more than many health issues, insinuates itself in the broader culture through storytelling rather than, say, dry research in scientific journals. What are some of the stock characters in our autism narratives?
Jordynn Jack: Autism is most often considered a disorder that affects young boys. Because boys are diagnosed far more often than girls (as much as 5 times more often), autism is often represented through a stock character of a little boy, or the “boy alone.” You can see this in book covers that often depict a lonely little boy staring out a window or looking out at the ocean. Lately, though, we also see autism figured through the stock character of the computer geek. We see people like Bill Gates or Facebook founder Mark Zuckerberg being popularly diagnosed as autistic, and entire locations, like Silicon Valley, being cast as centers for autism. None of this is born out by research, but the idea that autistic people are attracted to technology or that autism is somehow linked to systems-oriented thinking holds so much sway that these stock characters have come to stand in for the disorder.
We also see stock characters in representations of the parents of autistic children. When autism was first identified as a discrete condition, in the 1940s, researchers suggested that parents of autistic children seemed distant, cold, or unfeeling. Later, the figure of the mother, especially, began to be figured in this way, leading to the “Refrigerator Mother” image that was incredibly damaging to parents—the idea that somehow cold, “frigid” parents led their children to withdraw into autism. More recently, we’ve seen mothers taking on a different character—the “Mother Warrior” or “Autism Mom” who is devoted to “combatting autism” by marshaling therapies and treatments, from occupational therapy to special diets.
Finally, autism dads are sometimes represented through a different stock character. It is often reported that parents of autistic children are many times more likely to divorce, often due to dads who are portrayed as distant or avoidant. In these narratives, the mom is battling to “save” her child, the father withdraws because he can’t “fix” his child or refuses to support the mom’s efforts. Again, this is not born out by research—evidence does not support the claim that parents of autistic children are more likely to divorce, but the narrative is persuasive in part because of these stock characters. In my research, I found that many fathers actually had to confront a different stock character—that of the traditional father they wanted to become, one who spent time with their child bonding over sports, for example. In order to become a good father to the child they had (especially sons), fathers had to reformulate their own characters or reject the stock character (usually an amalgam of Bill Cosby, Ward Cleaver, or some other TV dad).
Q: What ties these characters to the cultural moment that inspired them? Why do some archetypes persist while others fade?
Jack: In these stock characters, we often see cultural anxieties about parenting, gender, and cultural change manifested. For example, the Refrigerator Mother character often shows up in narratives about women who have gone to work outside the home or who are highly educated. In the 1950s and 1960s, the expectation was still that mothers would quit their jobs after getting married or having children. Parenting advice also shifted at this time, away from the concepts of Scientific Motherhood in the 1930s and 1940s, which suggested that you could spoil a child by giving them too much affection and you should keep babies on a strict feeding and sleeping schedule. Instead, in part because of the influence of psychoanalytic theory, advice manuals emphasized the importance of the mother-child bond, so the “Refrigerator Mother” character arises as an example of what can happen when that bond fails to form.
To take another example, the Computer Geek stereotype emerged in the 1990s and 2000s, in a time where the Internet boom was driving social and economic change. Sometimes, in articles about figures like Gates or Zuckerberg, we see represented an underlying anxiety about how these technology titans have shifted economic power toward geeks and nerds rather than the traditional corporate business elites.
Q: How does the fact that autism remains mysterious in so many ways encourage gender-based narratives?
Jack: Diagnosing autism remains a fuzzy process—it is a moving target. The latest iteration of the Diagnostic and Statistical Manual, the DSM-V, of the APA has changed the criteria and the labels once again. Categories such as “Asperger’s Syndrome” have appeared and disappeared. Despite tons of scientific research into neurological, genetic, and environmental factors, it is still not clear to what extent each of those factors causes autism, or even if the category, autism (or Autism Spectrum Disorder) is encapsulating a single condition or many different conditions that have been lumped together.
Given all this confusion, I think, gender is often smuggled in as a possible explanation. We see this in the “Extreme Male Brain” theory of autism, which suggests that somehow autism represents an exaggeration of typical masculine traits, or in the “Refrigerator Mother” theory I mentioned earlier.
Q: While it’s easy to see how gendered narratives might influence popular ideas about autism, gender also affects scientific discourse, doesn’t it?
Jack: Yes. These popular representations do shape scientific research and discourse. For example, because autism is often depicted as a condition affecting males, women tend to be left out of scientific studies, and often with little explanation for why they were excluded. In neurological studies, especially, boys and men tend to be the research subjects. As a result, we still know relatively little about females with autism.
However, when it comes to studies of parents of autistic children, mothers are overrepresented, and fathers are often excluded—again, often with little explanation for why. It is simply assumed that mothers are the primary caregiver, even though more and more families have alternative arrangements (Same sex couples are often excluded, as are families where a father or grandparent takes on significant childrearing duties). This affects therapies and treatments, as well—I found that most of these programs target mothers (especially stay-at home mothers) with their advertising and even the design of programs.
Q: Have these narratives created an environment that has tended to grant one person or group the authority to speak and write on autism?
Jack: Perhaps because of the unfair representation of the Refrigerator Mother, mothers have successfully taken on an important role in speaking and writing about autism. They publish books, they serve on Boards of Directors for funding organizations, and they speak out on television and in the media.
Nonetheless, scientists and doctors often portray themselves as the authoritative voice about autism, taking on what I call the “Good Doctor” character. Usually gendered masculine, the Good Doctor speaks as one who knows what is best for children. Unfortunately, for parents who have been belittled or dismissed when seeking help for their children (or even blamed for their child’s condition), there’s often a lost of trust in mainstream medicine and science.
Ultimately, though, I find that autistic people themselves are often excluded, with the exception of a few people, like Temple Grandin or John Elder Robison, who have become spokespeople. Whenever there’s a news story about an issue affecting autistic people, it is usually parents or doctors who are interviewed, or in a few cases someone like Grandin or Robison. It is simply assumed that autistic people cannot speak to their own experiences or about issues that affect them.
Q: The very definition of autism is fraught with controversy. How did you arrive at a working definition for writing Autism and Gender?
Jack: For this book, I read a wide variety of accounts of autism—scientific articles and reports, books written by parents, autobiographies written by autistic people, blogs, forum posts, and more. In each of these accounts, autism may be defined differently—as a psychiatric, genetic, and/or neurological disorder (for scientists), as a learning disability, as a systemic disease (by some espousing alternative health treatments), or as a neurological difference. In fact, autism may be all of these things, depending on who is doing the defining. In my book, I resist choosing any one of these definitions, but instead show how each of these definitions works alongside the stock characters used to explain autism—what it is, and what should be done about it. For example, “Mother Warrior” often embrace a model of autism as a systemic disease, one that can be ameliorated via special diets, vitamins and herbs, or other alternative treatments. By choosing this model, Warrior Mothers give themselves something to fight against, a way of overcoming autism. Meanwhile, those who espouse a view of autism as a neurological difference would not take on the Mother Warrior character, since they would not see autism as a scourge to be overcome, but as a condition that provides alternative ways of thinking and seeing the world. From this perspective, the stock characters used to portray autism are inaccurate, because they do not accurately represent what it is like to be autistic. For example, many autistic people reject the model of the “boy alone,” one who lacks emotion or “Theory of Mind,” explaining instead that they feel emotions deeply and in fact are often overwhelmed by them.