Steve Silberman's NeuroTribes, released in 2015, did what a lot of books hailed as "landmarks" do: it both identified a precedent and perpetuated it. NeuroTribes focused on the topics it chose because they were among the most pressing topics in the conversation about autism, topics such as institutionalization, causes and diagnosis, and the nature of autism. Because NeuroTribes focused on those topics, it reinforced the belief that those were the most pressing topics in the conversation about autism. Perhaps it's not surprising, then, that while a prolific number of books about autism have been published since the release of NeuroTribes, nearly all of them follow the same model. They address the same topics, and they presume that the primary players in the drama of autism are not autistic people, but their non-autistic parents. Despite the corresponding rise in work by autistic people, "autism" remains, in both the popular and academic press, not a question of individuals or of social disability, but an Othered impairment, an affliction that is imposing on, and trying the patience of, non-autistic society.
In this article, I explore five books on autism that have been published in the years immediately preceding and following NeuroTribes:
- The ABCs of Autism Acceptance, by Sparrow Rose Jones (Autonomous Press, 2016)
- Autism and Gender: From Refrigerator Mothers to Computer Geeks, by Jordynn Jack (University of Illinois Press, 2014)
- In a Different Key: The Story of Autism, by John Donvan and Caryn Zucker (Crown, 2016)
- Uniquely Human: A Different Way of Seeing Autism, by Barry Prizant (Simon & Schuster, 2015)
- War on Autism: On the Cultural Logic of Normative Violence, by Anne McGuire (University of Michigan Press, 2016)
These books can be grouped together in various ways. The ABCs of Autism Acceptance, In a Different Key and Uniquely Human, though clearly addressing an audience of non-autistic parents of autistic children, are also written with a broader popular audience in mind. Yet The ABCs of Autism Acceptance, in its attention to scholarly detail, might also be grouped with War on Autism and Autism and Gender, both slated toward an academic audience. All three of these titles also interrogate why our current cultural Overton Window on autism is where it is, in a way that Uniquely Human passes over in favor of a different how, and In a Different Key never questions at all.
Rather than discuss each book separately, then, I identified the topics these titles have in common; these topics serve as the touchstones of current popular discussions of autism. This essay is arranged in terms of these topics.
What is Autism?
"What is autism?" has been the central question of the autism conversation since the 1940s, when both Leo Kanner and Hans Asperger began to delineate "autism" as an identifiable "thing." The question is as open today as it has ever been. In one way or another, every text dealing with autism addresses it. Or, as Jordynn Jack puts it in the Introduction to Autism and Gender, " 'autism has become a site of controversy and contestation, a scene of rhetorical action, a "rhetorical phenomenon," as Paul Heilker and Melanie Yergeau have noted' " (1).
Every one of the five books considered here attempts to address the question. Some state that their goal is exploratory and that the answer, if "the answer" exists at all, is not to be found within their pages. Others presuppose the answer that is convenient to the argument the book and the guidance it seeks to provide. At least one of them – In A Different Key – does both.
In the Introduction to War on Autism, Anne McGuire states that the book's goal is to analyze autism, not as a unitary or definable "thing," but as an interpretive category. "I do not endeavor to uncover any one true meaning of autism," McGuire writes, "nor do I think this to be possible" (21). Instead, War on Autism aims to explore "autism as an object of interpretive analysis" – a "thing," if "thing" is the appropriate term, that is shaped through cultural constructions of and responses to it, and that responds in turn to our own responses to these constructions. Jack's Autism and Gender takes a similar approach, acknowledging that the controversy surrounding autism "entails more than just arguments about scientific facts, but stories as well" (25); the book's focus is on the ways in which these multifarious stories are deeply gendered.
By contrast, both The ABCs of Autism Acceptance, by Sparrow Rose Jones, and Uniquely Human, by Barry M. Prizant, seek not to explore or complicate the question "What is autism?", but to offer an answer. Jones's book begins by rejecting the concept of autism as a "thing" separate from (or eradicable from) the persons who "have" it – by insisting, ultimately, that there is no "thing" other than autistic people, who deserve the same support and recognition as non-autistic people. In the book's first chapter, "A is for Acceptance," Jones sums up the most common othering tropes about autism (tropes both McGuire and Jack explore in greater depth), then positions autism and its people in direct opposition to this othering:
That is what we are rejecting. Of course we want people to be aware of autism, we just don't want the awareness brought by groups like Autism Speaks. We do not want a dishonest awareness that diminishes us. We are only seeking the sort of awareness that leads to understanding and acceptance. …Autism acceptance is seeing us as whole, complete human beings worth of respect. (12)
Barry Prizant's book takes a more conventional approach. Uniquely Human doesn't attempt to trouble, challenge, or complicate the prevailing view of autism as a medical disorder that is located within the bodies and brains of certain children and that can be "treated" while it is there, if not yet ousted. Despite its subtitle, A Different Way of Seeing Autism, Prizant's book doesn't trouble itself with the question of what autism is. It takes the current medical model as a given. Instead, the book focuses on how its audience of parents, therapists, and medical professionals responds to the medical "fact" of autism.
While McGuire, Jack, and Jones are also concerned with audience responses to autism, their attempts to shape those responses are sited within their exploration of what autism is. Prizant's approach is simpler. Uniquely Human encourages non-autistic adults to accept the fact of autism's existence as a medical condition in the name of finding more effective ways to treat that condition. The book urges readers repeatedly to "listen, observe, and ask "Why?"" when dealing with "autism." Autistic "behaviors" are treated as malleable interpretive categories; autism itself is taken as a given.
John Donvan and Caryn Zucker's In A Different Key: The Story of Autism attempts to straddle both categories. Donvan and Zucker conclude the book by writing of autism that "the story is far from over. The mystery remains complex. Attempts to investigate its nature continue to bring new questions to the surface." Certainly this sounds like a concession to the understanding of autism that informs the work of McGuire and Jack: autism as an interpretive category, as a moving rhetorical target. Yet the 500 pages that precede this statement do not bear it out. In A Different Key's parent-centered narrative tends to treat autism much the way Uniquely Human does: as a medicalized "there" that somehow affects individual behavior while being separate from that behavior, treatable, curable. The subtitle belies the book's approach as well: while Autism and Gender, for example, acknowledges that the topic of autism involves myriad "stories," plural, In A Different Key's subtitle claims there is only one "story of autism" – and that this book is it.
(Non-Autistic) Parents and (Autistic) Children
Given the way parents are centered in the current conversation on autism, one perfectly plausible answer to the question "What is autism?" is "a condition inflicted on parents by their children." All five of the books under consideration here deal with the parents of autistic children: by exploring their movement within autism discourse, by addressing them as the primary audience, or both.
In A Different Key is the most overtly parent-centric and parent-friendly of the books discussed here. Indeed, it may be the most overtly parent-centric and parent-friendly book on autism published to date. On every topic it covers, In a Different Key makes parents the heroes of the autism narrative – even when the results are inconsistent or baffling, as when the authors attempt to paint a facilitator believed to have been fabricating her facilitatee's sexual abuse charges as the true victim of the charade. Throughout the book, the authors' facility with pathos-based arguments is evident, and it is strongest when the audience is presented with a relatable and likeable parent character to follow through the narrative. They conclude by saying, of "parental love," "to be sure, that love could run awry at times, and be fierce to a fault, but it was one element in the whole long saga that was always, unquestionably, pure" (532). This is not merely an assertion by the authors, but the underlying assumption of the entire narrative.
Other recently-published books on autism also address parents with the assumption that parental love is "pure." The audience for Uniquely Human includes both parents of autistic children and other adults who work closely with autistic children. The book makes the assumption that parents and professionals are acting in good faith: that they want to understand and to help their children. (It also assumes, simultaneously, that autistic children are inherently baffling little critters.) It does so, however, by centering parental experiences of autism in a way akin to In A Different Key. Parents are reassured that "parents are the experts"; a list of signs that a child's teachers don't "get it" includes the warning "they are insensitive to parents' hopes and dreams" (152).
The ABCs of Autism Acceptance likewise presumes a good-faith desire to understand on the part of parents. Jones, however, is less willing to center parental egos than either Prizant or Donvan and Zucker. Central to the book's call for acceptance is a re-centering of autistic people, narratives, lives, and culture in the discussion of autism. To do this, Jones admits, requires an approach to parents that can seem difficult or strident – particularly in the context of an autism narrative that so often centers their hopes, fears, and dreams. But to reposition autism where it "belongs" – in the lived experiences of autistic people – demands no less.
While neither War on Autism nor Autism and Gender are aimed at an audience of parents specifically, the ubiquity of parental narratives in discussions of autism lead both authors to spend considerable time discussing parents in this context. War on Autism begins with an exploration of how autism advocacy becomes an advocacy against autism rather than an advocacy for autistic people, based on this positing of autism as a separate, pathological "thing" that plagues parents and divides families. Thus "autism" becomes at once an excuse for and a site of rhetorical and actual violence. Autism and Gender focuses more specifically on the gendered constructions of parents as players in the autism narrative: chapters are devoted, respectively, to the "refrigerator mothers" said to have caused their children's autism with insufficient affection, the "warrior mothers" out to prove that vaccines caused their children irreparable harm, and the "autism dads" whose role vis a vis autism, Jack writes, "seems to require a shift away from traditional concepts of fatherhood and masculinity" (157).
Put another way, many mainstream books on autism continue to focus on the who of autism and parenthood: the parents. Questions of what parental roles are being enacted, why they are being played out, and how they affect autistic people continue to be addressed only academically, if at all.
Narratives that focus heavily on parents-as-protagonists or parents-as-audience, as the current mainstream discourse on autism does, have profound consequences for the lives of autistic people – and their deaths. McGuire writes, "The work of scholar-activists like Melanie Yergeau and Ibby Grace critically teach us how dominant, contemporary rhetorics of autism come into contact with the materiality of the autistic body" (8). Jack puts it more bluntly: "representations of autism matter, insofar as they influence how autistic people are treated in real life." Nowhere is this more apparent or devastating than in the rhetoric of filicide – the murder of autistic people by their parents, which is explicitly addressed by three of the five books discussed here, and which can be understood through the lenses provided by the last two.
Autistic advocates have long written about the toll filicide takes on the autistic community. Deaths at the hands of our parents and caregivers are so common that they have been summed up by a cultural meme: Stop Killing Us. "Stop Killing Us" is the title of dozens of blog posts by autistic advocates, including one by prominent advocate Lydia Brown. It is the topic of one of the most well-read and well-respected pieces in the Autistic community, Kassiane Sibley's "Here, try on some of my shoes" – written in response to the mainstream call to "walk in the shoes" of parents who kill their children.1
In 2015, the Autistic Self-Advocacy Network launched its "Anti-Filicide Toolkit" as a way to fight the increase in deaths and the narratives that drive it. "We see the same pattern repeating over and over again," the press release accompanying the toolkit notes:
A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the "burden" of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten.2
As might be expected from a book titled War on Autism: On the Cultural Logic of Normative Violence, filicide plays a central role in McGuire's analysis. The Introduction begins with a retelling of the 2009 murder of Jeremy Bostick by his father in their home. It ends with a chapter that focuses specifically on the outcome of the subtitle's "normative violence" and its "cultural logic" – with a (incomplete) list of autistic people murdered by their parents. Throughout the book, McGuire's analysis seeks to address precisely the narrative ASAN's anti-filicide press release summarizes. McGuire is careful not to suggest any facile "cause" or "reason" for these murders, instead focusing on the fact that the media's coverage of these deaths "frequently treated a pathological condition of autism as the only backstory of the murders that mattered" (209). It is by turning autism into a "thing" that could be located outside the child who "had" it that, as McGuire notes, has "render[ed] thinkable the seemingly unthinkable: the act of murdering one's own child."
The ABCs of Autism Acceptance tackles the question of filicide more urgently, in "M is for Murder." "This is the very worst outcome of autism awareness without autism acceptance," Jones writes. By "rendering thinkable the seemingly unthinkable," as McGuire put it, Jones argues that "awareness without acceptance" also makes filicide possible, even inevitable. Instead of locating the "emergency" in a pathologized "thing" version of autism, however, Jones locates it in the parents – specifically in the limited spectrum of messages about autism to which parents commonly have access. "When parents learn about their child's diagnosis of autism and turn to others for help, they need hope," Jones writes, "they need hope and they need realism […] Sadly, what too many parents find is a community filled with doom and gloom and endless complaint" (73-78). This isn't to say that filicide is a rosy subject: this section of The ABCs of Autism Acceptance is full of statistics, news reports, and grim outcomes. But it also quotes extensively from the work of parents who walked away from fear and embraced their children as autistic people.
McGuire's and Jones's respective analyses and appeals make In A Different Key's treatment of filicide stand out. Like the other books discussed here – and like most writing by autistic advocates on filicide – In A Different Key does not attempt to address every murder of an autistic person at the hands of a parent or caregiver. Instead, the authors choose a single example: the murder of fifteen-year-old Dougie Gibson by his father, Alec, in 1971. While the story is told in heart-wrenching detail, In A Different Key does not attempt to analyze the murder – or to condemn it.
If anything, the book portrays Alec Gibson's actions "as justifiable and inevitable," as ASAN put it, continuing its consistent framing of parents as the sympathetic heroes of "the story of autism." "Other autism parents," the authors write, "when they heard about the murder, felt the same way. They were horrified by it, but at the same time, they recognized something in the despair Alec had surrendered to" (143).
"They seem unaware," autistic advocate Kassiane Sibley writes, "that we, too, have shoes" (n.p.).
The full title of Steve Silberman's NeuroTribes is NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, and if the book did nothing else, it did get the word "neurodiversity" onto library and bookstore shelves across the United States, as well as onto the New York Times bestseller list. It also made the neurodiversity movement a central concern of all of the books discussed here.
"Neurodiversity," broadly, is the term for the biological fact that human brains differ in construction and function across the population, according to autistic activist and scholar Nick Walker3. Where the term becomes politically charged is in its reference to the neurodiversity paradigm or the pro-neurodiversity movement, both of which maintain that this natural variation in human neurology is not pathological, and that it offers both strengths to be embraced and challenges to be addressed. As such, political "neurodiversity" is entrenched in the social model of disability: it locates the disabling nature of neurological difference not in some discrete physiological fault of the individual brain, but in the barriers created when that brain attempts to interact and function in a society built by and for other types of brain. While a pro-neurodiversity stance has been embraced by the autistic activist community in particular, the approach is not inherently "autistic" in nature: it can embrace all types of neurological difference, diversity, and divergence.
War on Autism discusses neurodiversity in its introduction as part of a broader attempt to acquaint the audience with the subtleties of autism advocacy. Noting that mainstream "advocacy" so often seems to elide or ignore the very people it claims to be helping, McGuire also points out the extensive work autistic activists have done to push back against this damage and situates War on Autism as a text that might further unpack the violence of certain rhetorical approaches to autism. Similarly, Autism and Gender also notes the ways in which pro-neurodiversity advocates have begun to push back against gendered stereotypes with harmful or dehumanizing effects, making the expansion and recognition of diverse gender identities within autism a question of human or civil rights. Both books do considerable thinking on the importance of a pro-neurodiversity approach on understanding autism rhetoric and its effects on autistic people.
If War on Autism and Autism and Gender can be described as "neurodiversity thinking," then The ABCs of Autism Acceptance and Uniquely Human can be described as "neurodiversity doing." Both Jones and Prizant are less interested in the theory of neurodiversity than they are in its practice – immediate, concrete, and personal. Throughout The ABCs of Autism Acceptance, Jones employs a pro-neurodiversity framing to underscore the book's message that the autism-as-thing model damages parents' relationships with their children, and that the autistic-as-person model heals and supports those relationships. Similarly, by urging parents and professionals to "Ask why?", to listen, and to empathize with their autistic children, Prizant adopts a neurodiversity-friendly approach: he encourages the inclusion of autistic children's brains within the conceptual category "minds anyone can understand and communicate with," rather than the category "bizarre," "alien," or "pathological" (15).
Again, In A Different Key stands out, both for its framing of neurodiversity and its dim view of the subject. To Donvan and Zucker, "neurodiversity" is neither a biological fact nor a shorthand term for a thought paradigm or a political movement. Rather, it is embodied within autistic people themselves – at least, those troublesome ones who can speak. When neurodiversity became part of the conversation on autism, Donvan and Zucker write, "some autism parents in that community discovered a new adversary in the arena: people with autism themselves" (512). Throughout the section of In A Different Key titled "Neurodiversity," autistic activists and advocates who openly promote pro-neurodiversity ideas are vilified (Jim Sinclair, Michelle Dawson, Ari Ne'eman), while autistic people who either do not promote these ideas or who oppose them are portrayed as sympathetic and likeable (Temple Grandin, Donald Triplett, Alex Plank) (513-533).
While In A Different Key is devoted to its narrative of neurodiversity as an unwelcome intrusion on parents' rightful place in the autism narrative, its view may also be falling quickly out of favor. A September 2016 search for "neurodiversity" on Google Scholar returned 2,660 hits, many of which refer to neurodiversity favorably in the title, abstract, or both. The idea of acceptance as a response to the disabling effects of autism in the wider society is also being embraced more readily, as books like Uniquely Human and NeuroTribes demonstrate. While no book on autism published in recent years appears complete without a mention of pro-neurodiversity thought, the implications of the paradigm have only begun to be explored.
What all five of the books discussed here have in common is a shared attempt to address an intense cultural anxiety du jour: what is autism, and what should be our relationship or response to it? This anxiety is made all the more profound by the fact that "autism" is a shifting target. It is defined by cultural expectations of social behavior, movement, and emotional labor; it is a way of being that manifests in myriad ways not only among groups but within individuals; and it is maddeningly hard to define. Is "autism" even a thing, with an objective, separate existence, a target we can hit? Or is it a rhetoric, "a way of being in the world," as Heilker and Yergeau assert (see McGuire 1) – a site at which possibilities emerge rather than being shut down? If all the non-autistic trees in the forest fall, is the remaining tree still autistic?
Although "autism" has existed as a diagnosis for sixty years, its operation – the kinds of stories we tell about autism and the people who have it, the limitations we place on them as a result of the label – are only beginning to be interrogated, evaluated, or complicated. The work of non-autistic authors writing about autism continues to dominate both the academic and the popular discourse, and elements of non-autistic storytelling, such as claims that autistic writers lack "theory of mind" or an "inner world," continue to hamper the ability of a non-autistic audience to attend to autistic constructions of identity. Likely there is no one answer, no "the story of autism." There are only stories – and most of them are waiting to be written.
- Brown, L. (2012, April 03). Stop Killing Us. Retrieved September 28, 2016, from http://www.autistichoya.com/2012/04/stop-killing-us.html
- Heilker, P., & Yergeau, M. (2011). Autism and rhetoric. College English, 73(5), 485-497.
- Sibley, K. (2013, Sept. 08). Here, try on some of my shoes. Retrieved September 28, 2016, from http://timetolisten.blogspot.com/2013/09/here-try-on-some-of-my-shoes.html
- Walker, N. (2014, Sept. 27) Neurodiversity: Some Basic Terms & Definitions. Retrieved September 28, 2016, from http://neurocosmopolitanism.com/neurodiversity-some-basic-terms-definitions/.
For example, please see http://timetolisten.blogspot.com/2013/09/here-try-on-some-of-my-shoes.html.
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