1. Proud Autistics
In Autumn 2009, Autism Speaks, the largest and wealthiest autism organization in the United States released a video entitled I Am Autism. The video was designed to raise money for scientific research, and it employed the organization's characteristic scare tactics in the push for a cure. "I am autism," the sound-track declares. "I am visible in your children, but if I can help it, I am invisible to you until it's too late…. I work faster than pediatric aids, cancer, and diabetes combined." Upping the terror ante, it remarks snidely, "If you're happily married, I will make sure your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain." The video then references the plight of underfunded scientists, the heroes in this implied drama between good and evil. "Your scientists don't have the resources," it says, "and I relish their desperation." Sounding like Satan himself, autism concludes, "I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams" ("Horrific Autism Speaks…").
Sadly, there isn't anything surprising about this video's hate speech. Indeed, it is reminiscent of the organization's earlier video, Autism Every Day, which featured a woman so exasperated by her daughter's autism that she longed to drive off of a bridge with her. She only stopped herself because it would have harmed her other nondisabled child by depriving her of a parent. It also closely resembles the "Ransom Notes" ad campaign that NYU's Child Study Center ran a couple of years ago and that Joseph Kras analyzes in his article "The Ransom Notes Affair: When the Neurodiversity Movement Came of Age." In these ads autism is presented as having kidnapped America's children, and Kras, a medical doctor, suggests that, in addition to being offensive, the ads clearly violate the American Medical Association's code of ethics.
What is surprising is that Autism Speaks believed its campaign would fare better than NYU's. The latter's was pulled after a number of prominent self-advocates, in particular Ari Ne'eman, whose essay in this volume considers the history of autism advocacy, mounted an effective protest. Ne'eman's organization, the Autistic Self Advocacy Network (ASAN), once again proved too much for the autism establishment by shutting down a highly disparaging representation of neurological difference. It's the sort of thing that Tito Mukhopadhyay, yet another contributor to the special issue and someone carrying the label of "severe" autism, sees as reflective of the "sickening web of [the cure-focused organization's] belief system" (176). In an interview with Ralph James Savarese, Mukhopadhyay breaks into poetry as he gently mocks what neurotypicals have historically made of autism spectrum disorder (ASD):
Theories are created
For reasons observed
Theories are broken
For reasons replaced
As old order goes by
They inspire the new
We watch them die
With our obscured view
So what if a Theory
It doesn't change for sure
Any — Thing.
I may be that
And I may be this...
Who Cares anyway?
I am a Proud Autistic.
As we write our introduction, the Autistic Self Advocacy Network is pressing Autism Speaks for leadership positions, insisting like many a disability rights organization before it, "Nothing about us without us." Advocating a concept of neurodiversity, its members reject the relentless and nearly hysterical pathologization of autism, and they unapologetically evince pride in who they are. At its best paternalistic and at its worst rabidly demeaning and unaccommodating, Autism Speaks has tried to ignore these activists. For one thing, it has devoted very little of the considerable money it has raised to quality of life issues — such things as housing, education, communication, and employment. In his article, "Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses on to Real-Life Challenges," Scott Robertson shows precisely how greater attention to these basic components of a fulfilling life would ameliorate much that is disabling about autism. Until people with autism1 assume leadership positions in organizations like Autism Speaks, they will not be able to influence how money is spent or how the challenges of this neurological condition will be represented to a largely ignorant and stereotype laden public. They will simply be spoken for and often in the worst possible way. Paula Durbin-Westby makes this point very powerfully in her essay, "'Public Law 109-416 Is Not Just about Scientific Research': Speaking Truth to Power at Interagency Autism Coordinating Committee Meetings."
2. What Is Neurodiversity?
We begin by foregrounding the political activism of self-advocates in order to underscore that the neurodiversity movement is indeed a movement, which may come as a surprise to some scholars in the field of disability studies. Just as people with physical disabilities have insisted on the right to self-representation and determination, so, too, have people with autism — and not just those who are viewed as "high-functioning." The special issue that we have edited tries very hard to reflect the activism of those in and out of the academy, and it tries very hard to embody the principle of self-representation. Half of the contributors to this volume are on the autism spectrum; any number of them carries the label of "severely autistic." Some do not speak, or speak in a limited way, and instead type or write to communicate. The work of these contributors appears in every section of the special issue: refereed articles, cultural commentaries, reviews, interview, and roundtables. If we accomplish anything with this volume, we hope that people will reconsider the use of such terms as high- and low-functioning. They are always demeaning and quite often inaccurate. Is Stephen Hawking low-functioning? Is being able to tie one's shoes the pinnacle of human achievement? This issue's other contributors are neurotypical, but each is sensitive to the problem of representation, understanding that autism has suffered from one misinformed or disparaging depiction after another and with truly tragic consequences. These contributors all subscribe to the idea of neurodiversity, though disagreement exists about the implications of adopting such a perspective.
But what exactly is neurodiversity? As Wikipedia, that encyclopedia of the culturally hip (if not scholarly inclined), puts it, neurodiversity is
an idea which asserts that atypical…neurological development is a normal human difference that is to be recognized and respected as any other human variation…. Some groups apply the concept of neurodiversity to conditions potentially unrelated (or non-concomitant) to autism such as bipolar disorder, ADHD, schizophrenia, developmental speech disorder, Parkinson's disease, dyslexia, and dyspraxia. (Wikipedia)
Coinage of the term is generally attributed to Judy Singer; it first appeared in an article by Harvey Blume in The Atlantic in 1998. Blume predicted the term's long life on the Internet. "Eleven years later," as Kathleen Seidel has written, "people increasingly use the term 'neurodiversity', argue heatedly about its definition, and some even use 'neurodiverse' as a dirty word" (private correspondence). For the last six years, Seidel has run a progressive web site devoted to this perspective called Neurodiversity.com. Among other things, it provides easy access to important writings that advance an autistic rights agenda, including Jim Sinclair's seminal 1993 essay, "Don't Mourn for Us," and Morton Gernsbacher's 2004 piece, "Autistics Need Acceptance, Not Cure." But long before Seidel began her web site, Sinclair, Larry Arnold, Laura Tisoncik, and Amanda Baggs, all of them autistic, were cultivating the concept. In 1992, Sinclair co-founded Autism Network International (ANI) with Kathy Grant and Donna Williams, who during this period published two influential memoirs: Nobody Nowhere (1992) and Somebody Somewhere (1994). The organization promoted the idea of autism as a way of being, and it emphasized the importance of self-advocacy. Arnold and Tisoncik were both very active on the web in the late 1990s; the latter started Autistics.org in 1999, a crucially important project that Baggs, who was also quite active, joined shortly thereafter. In 1998, a person with autism named Muskie devised a web site entitled Institute for the Study of the Neurologically Typical. It begins wittily with this statement: "Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity." Appalled by expert discourse on ASD, Muskie writes, "This site is an expression of autistic outrage" and concludes, "My brain is a jewel. I am in awe of the mind that I have. I and my experience of life are not inferior, and may be superior, to the NT experience of life." It's hard to overstate the importance of the web in allowing people with autism to develop the concept of neurodiversity and to disseminate it widely.
In 2002, Valerie Paradiz published a parent memoir of Asperger syndrome, Elijah's Cup, which speaks glowingly of autistic culture. In 2003, Kevin Leitch commenced his blog Left Brain/Right Brain, pushing back against the automatic pathologization of autism. A year later, Amy Harmon published a piece in the New York Times entitled "Neurodiversity Forever: The Disability Movement Turns to Brains," giving the term a popular life. Dawn Prince's Songs from a Gorilla Nation: My Journey through Autism appeared in 2004; it speaks of the beauty of autism. In 2005, Susanne Antonetta published A Mind Apart: Travels in a Neurodiverse World; this book links the alternative neurologies of autism and mental illness, and it unabashedly celebrates them. That same year a number of blogs came into existence. Éstee Klar started a website and blog called, respectively, The Autism Acceptance Project and The Joy of Autism. Camille Clark started one called Autism Diva. Amanda Baggs began her blog, Ballastexistenz, in 2005 as well. Along with her widely viewed videos on YouTube, the blog passionately espouses an autism-as-difference perspective, and it champions disability rights generally.
In 2006, Ari Ne'eman founded ASAN; people with autism fill all of its leadership positions. That year Joel Smith began a blog called NTs Are Weird, and Autistic Bitch from Hell began one called Whose Planet Is It Anyway? In 2007, one of the editors of this volume published a memoir of autism and adoption entitled Reasonable People. Its subtitle: On the Meaning of Family and the Politics of Neurological Difference. The book contains the extensive communication of our nonspeaking son, DJ, who like so many before him debunks harmful stereotypes. CNN aired a documentary about Baggs called Finding Amanda in late 2007; the program explored the concept of neurodiversity and showcased terms like "neurotypical" and "neuroatypical." In one segment, Amanda and DJ discuss the need for autistics to organize. "What sorts of issues do you want to organize around?" Amanda asks. "Defining ourselves," DJ replies. In 2008, James Wilson followed with his own memoir entitled Weather Reports from the Autism Front, which meditates on the essential Internet writings of neurodiversity advocates with autism. That same summer, Ari Ne'eman, of ASAN, and Kristina Chew, of the blog Autism Vox, appeared with Diane Sawyer on Good Morning, America to discuss this new way of understanding autism. Also in 2008, Andrew Solomon, author of The Noonday Demon: An Atlas of Depression, penned a piece in New York Magazine that garnered neurodiversity and the movement behind it additional attention. While incomplete and obviously partial, this sketch nonetheless gives a sense of the concept's history.
3. A Complicated, Ambiguous Impairment; A Complicated, Ambiguous Gift
To be clear, the reaction to neurodiversity hasn't been entirely "posautive." Diane Sawyer seemed utterly perplexed by the application of a difference model to ASD, suggesting, in a kind of parting shot, that neurodiversity was "just a beautiful way of justifying heartbreak." Even Andrew Solomon, a person who experiences significant depression and thus is himself neurodiverse, voiced reservations about celebrating the more "severe" manifestations of autism. Stuck in a medical model of disability, many people find the idea of neurological diversity too counter-intuitive to grasp. They might sentimentally grant those with Asperger syndrome the status of difference but not the "child with stereotyped movements, perhaps head-banging; rudimentary language; almost inaccessible: a creature for whom very little future lies in store" (246), as Oliver Sacks once put it. Some are not only skeptical of the idea of neurodiversity but downright angered by it. A cursory search of the web reveals the reductive vitriol of neurodiversity's opponents. 2 Extremist bloggers — one site is called "Hating Autism," and it speaks of "expos[ing] the lies of a collection of scoundrels who oppose curing autism" (Best) — contend that the movement refuses to recognize autism as a disability, willfully ignoring its sometimes debilitating challenges, and, moreover, that neurodiversity is a luxury only those with milder forms of autism or Asperger syndrome can afford.
Nothing, however, could be further from the truth. In his essay, Ne'eman unequivocally refers to autism as a disability, but he suggests that the issue is more complicated than it first seems, as autism also frequently brings with it considerable strengths. These strengths involve memory, pattern processing, and intelligence, to name just a few of the more well known ones, and they exist in different combinations across the spectrum — not just at the less lamented end. Phil Schwarz, who in this volume has important things to say about the role of allies in the fight for acceptance, elsewhere writes,
The mainstream speaks of autism primarily in the medical language of deficit, and cannot see, as many of us on the spectrum do, that once the right kinds of support, accommodation, and mitigation of specific handicaps are available, there are desirable aspects to autism that we would not want to live without. (257)
And neurotypicals might not want to live without them either. Curing autism, or developing a test to facilitate the abortion of fetuses likely to develop the neurological condition, could rid the gene pool of certain abilities, as a number of activists and prominent autism researchers have warned. This is not even to raise the issue of eugenics, which originated in the U.S. and Britain, not Germany, and whose specter rightly concerns the movement's proponents. As Ne'eman and Durbin-Westby both point out, over ninety percent of fetuses said to have Down syndrome are presently aborted in North America.
Far from glossing over the common objection to neurodiversity, many of the volume's most impaired contributors explicitly reference what is truly vexing about ASD — vexing to both caregivers and people with autism themselves. Tracy Thresher, for example, a man who types to communicate and who was appointed by the Governor of Vermont to the State Standing Committee on Developmental Disabilities, exclaims, "My ideas are important for you to hear, but I am not always able to communicate. I am a man in a body that does not do what I want it to do. I struggle with my verbal speech, and this is a huge challenge for me. Saying and doing are issues I have with my body." Jamie Burke, a student at Syracuse University majoring in health and wellness and minoring in Native American Studies, remarks, as though directly responding to Diane Sawyer, "Hearts seem to be broken so much easier than my patterns of stims." The subject of feature articles in Time and People Magazine and of a segment on CNN, Burke learned not only to type independently through that much maligned technique called facilitated communication but to speak the words that he has typed — the latter beginning at the age of twelve. His remark clearly acknowledges the iron grip of perseveration, yet it also pokes ironic fun at the familiar response to autism. How easily neurotypicals cry catastrophe, their catastrophe, he seems to be saying.
How to conceive of the complicated, even ambiguous, impairment that is autism? Can such body challenges be cured without affecting the core phenomenon, or are the gifts of autism inextricably connected to the challenges? It's too easy to lampoon the neurodiversity movement by contending that proponents eschew therapeutic intervention altogether or, for example, celebrate anxiety and self-injurious behavior. No one we know of is opposed to safe and respectful therapies that ameliorate negative symptoms. In his contributor's note, Burke explicitly "attributes much of his life's success to years of innovative therapies and to full inclusion in regular education." He was that "creature for whom very little future lies in store," or, rather, he was perceived to be such, like several of the volume's contributors.
But a therapy, as of yet undeveloped, that would eradicate autism itself? "I wouldn't be me" (quoted in Sacks 291), Temple Grandin replied when asked if she wanted a cure. Is the "me-ness" of someone more impaired than Grandin or Ne'eman or Schwarz less worthy of preservation? Critics have the issue backwards: the greater the departure from the norm, the more a concept of neurodiversity is required. These critics haven't a clue about what is possible for those construed as unreachable or hopelessly burdensome. Our knowledge of "classical" autism is, after all, quite poor. And they don't think critically enough about the way they construct human value. We need to make room for difference, even, or especially, when that difference seems incapable of producing prized forms of competence. We need to be hospitable, however tired or frustrated caregivers and service providers might be (or focused on the bottom line politicians might be). There are myriad ways to be present, connected, and alive; myriad ways to have relationships. In sum, one certainly can adopt a neurodiverse perspective on significant impairment. Indeed, one must.
This special issue of DSQ contains two virtual roundtables that in part take up how autism should be conceived. The first consists of parents and siblings of people with autism, and it in no way sugarcoats the truth of care-giving difficulties. Nor does it perseverate on these difficulties, allowing them to constitute the whole story or to demean those who fall on the spectrum. In this regard, it is very different from the discourse of many parent bloggers and autism organizations. Issues of violence and aggression and caregiver exhaustion all come up and are confronted honestly. Some of the roundtable participants write quite joyfully of their parental and sibling lives, emphasizing the unexpected richness and, yes, closeness that autism has engendered. The respectful picture that emerges from the roundtable is credible, while still reflecting an outsider or semi-outsider point of view. Because the participants are familiar with the animating principles of disability studies, they understand the process by which an impairment becomes a disability in an inhospitable society. They understand, that is, how plenty of what is vexing about autism would not be so were society arranged differently. With their loved one's access to useful therapies; communication devices; educational, employment, and housing opportunities; and with their own access to respite care; many would find being responsible for somebody with autism much more enjoyable, especially if neurotypicals relaxed just a bit about the need for everyone to be normal. But that world hasn't yet been realized, and the report from the trenches makes clear the considerable obstacles that caregivers face.
Comprised of prominent self-advocates from the progressive, social justice-oriented organization The Autism National Committee (AutCom), the second roundtable reveals another point of view — this one from the inside of autism or, perhaps we should say, from the inside of specific points along the spectrum. The roundtable offers not only an additional opportunity to hear from people with autism themselves but an opportunity to hear them in dialogue with each other. There isn't perfect unanimity here either. For those who carry the label of "severe" autism and have trouble speaking, effective communication remains a consistent focus; for those with milder forms of autism or Asperger syndrome, securing minimal services is more of the focus. Whatever the focus of concern, the belief that the world isn't set up for autism and, frankly, doesn't wish to be more accommodating appears throughout, as does the belief that people on the spectrum are misunderstood and misrepresented. Each of the participants is committed to consciousness raising and political action — to what Stephen Shore, nonverbal till the age of four and now a professor and author of numerous well-received books, calls "work[ing] to change the public's perception of autism, and the 'conventional wisdom' regarding how to respond to it." Each comments on what ought to be the priorities of the Obama administration. Each hungers for a society that would allow everyone to realize his or her potential. As Sue Rubin, star of the Academy Award nominated documentary Autism Is a World and a college student who types (independently) to communicate, argues in the roundtable, we need to "mak[e] sure that this country provides equal rights to all of its citizens."
Just how misunderstood are people with autism? To what degree do prevailing stereotypes, beyond an inculcated commitment to normalcy, fuel the wish for a cure? A good deal of what has passed as scientific fact over the last sixty years, whether it is high retardation rates or an innate aversion to the social, turns out to be anything but fact. Meredyth Goldberg Edelson, who in this volume writes about the difficulty of diagnosing sexual abuse in the autistic population, published an important study in 2006 showing just how flimsy and unsupported have been the claims of mental retardation in published articles from 1937-2003. Of the 215 articles reviewed, three-quarters of the claims derived from nonempirical sources, and half of these never originated in empirical data. Moreover, the data that did exist had been gathered twenty-five to forty-five years ago and often from problematic testing vehicles. A study the following year addressed this problem by using a different vehicle. Michelle Dawson, Isabelle Soulieres, Morton Gernsbacher, and Laurent Mottron — Dawson is herself autistic and an important member of Mottron's research team at the University of Montreal — substituted the Ravens Progressive Matrices test of fluid intelligence for the standard Weschler Intelligence Scale for Children (WISC), and the incidence of mental retardation in the autistic sample dropped significantly. Can it be a coincidence that the adage already quoted and literally realized by Mottron's team — "Nothing About Us Without Us" — produced such different results? That autism could facilitate better science about itself, not just an alternative view, speaks to the importance of neurodiversity.
Following up on this study, Thomas Zeffiro and Isabelle Soulières compared the speed at which autistic and non-autistic groups completed the Ravens test, and they found that the former were up to forty percent faster than the latter and with the same error rate. (This study prompted our son, DJ to quip, "Who's retarded now? Maybe one day Frees [his word for neurotypicals — they have freedom, he contends] will have to ask for accommodations.") Mottron and Dawson have also published a study of what they call "perceptual acuities" in autism. About his approach to understanding autistics, Mottron has remarked, "I wanted to go as far as I could to show that their perception — their brains — are totally different." Not damaged. Not dysfunctional. Just different" (3). About Amanda Baggs, a participant in the self-advocate roundtable and the contributor of an important essay, Zefiro, a Massachusetts General Hospital neuroscientist, has had the courage to admit, "If Amanda Baggs had walked into my clinic five years ago, I would have said she was a low-functioning autistic with significant cognitive impairment. And I would have been totally wrong"(2)
Clearly things are changing in the scientific community. Just last summer, Philosophical Transactions of the Royal Society published an issue edited by Francesca Happé and Uta Frith on "Autism and Talent." The issue contains articles by a number of prominent researchers who, to one degree or another, have altered their thinking, either renouncing pathology or softening it considerably. Happe and Frith's own introductory essay is entitled "The Beautiful Otherness of the Autistic Mind." And so, Ne'eman and his fellow activists are perfectly justified in objecting to the conception of autism as strictly an impairment.
4. A Step in the Right Direction, But Only a Step
One of the essays in "Autism and Talent" concerns the phenomenon of autistic autobiography. Its author, Ian Hacking, makes a number of crucial points, including the need to imagine awareness where it might not seem to be — in the most impaired. Yet at the same time, he forecloses truly emancipatory possibilities. He suggests that narratives about autism function like those facial diagrams that aid autistic children in reading the emotions of neurotypicals: the narratives, in effect, aid neurotypicals in reading autistics. Hacking writes,
The various regimes that help autistic people learn to understand most other people compensate in one direction. They enable the autist to infer from neurotypical behavior. The narratives teach many of us how to compensate in the other. That is, they suggest what to infer from autistic behavior which on the face of it means nothing to us. (12)
By implication, neurotypicals are just as deficient at understanding people foreign to themselves as autistics. Both groups need tutoring. Hacking hopes that "we might come to judge that less gifted autistic children and adults, who communicate very little, also understand, in a quite specific way, far more than is evident to the outsider" (13). "If we were to take this route," he says, "it would be a shift, perhaps a radical one, in our conceptions of and relationships to individuals on the spectrum" (13). But how Hacking arrives at this hope is quite strange indeed, and it bears on what the concept of neurodiversity might actually accomplish.
Hacking is concerned to remind us that "autism narratives are not just stories or histories, describing a given reality. They are creating the language in which to describe the experience of autism, and hence forging the concepts in which to think autism" (abstract). That experience was "hitherto unknown" (2), not simply a "continent" yet to be explored but, rather, a continent we didn't even know existed. By reminding us as well that "today's autistic child, brought up on children's stories about autistic children, and who in later years goes on to write an autobiography, will give accounts that are textured by the early exposure to role models" (5), he evokes the sense of culture on the move, and he rightfully seeks to complicate any simple notion of "insider" and "outsider" narratives. The emerging discourses of autism, he implies, do not respect such a rigid distinction, instead working perpetually to constitute both positions.
Unfortunately, in making his point, Hacking lumps together "stories about people with autism, told by the people themselves, or their families, or by novelists, or by writers of stories for children" (1), even as he focuses specifically on four autobiographies. The effect is to erase even rough distinctions and to allow, for example, The Curious Incident of the Dog in the Nighttime, a novel by a neurotypical, to stand in for, say, Songs of the Gorilla Nation, a memoir by an autistic. As Gyasi Burks-Abbott, a person with autism, has written of the former, complaining about its stereotypes, "The author's conclusions and the book's [wildly popular] reception actually militate against autistic self-representation" (295). The difference between representation and self-representation thus remains important, however entangled each is in the "ongoing social and cultural evolution of the autism spectrum"(1).
But there are other fish to fry. Curiously, Hacking evinces significant skepticism about what he encounters in the autobiographies he analyzes, as if the language learned and employed by autistics renders dubious what they say about their early experience — before they "emerged," to use a common and highly questionable trope. "Our autobiographers imply and sometimes state that they understood what was said around them, long before they could speak" (13), he writes, as though speech were a necessary prerequisite for comprehension. He notes that Grandin's and Mukhopadhyay's accounts do not jive with expert theories:
This does not sound at all like the reading of Frith and Happe in their paper, "What is it like to be autistic?" Their central thesis is that articulate autists "appear to arrive at an explicit theory of mind by a slow and painstaking learning process, just as they appear to arrive at self-consciousness by a long and torturous route." (13)
Not exactly a proponent of theory of mind (ToM) 3 — as forms of life, autism and neurotypicality each lack something that the other must compensate for — Hacking is interested here in the effect of a given narrative of "emergence" on the spectrum's evolution and, even more important, on those who haven't "emerged" and indeed may never "emerge." He probably wouldn't object to what Sharisa Kochmeister, an accomplished nonspeaking person with autism, has to say in the roundtable about the claims of impaired empathy and social withdrawal that so often accompany the ToM hypothesis. "Does the fact that I believe both of these statements are convenient lies designed by, and for, people who have no understanding of autism qualify as a response or would you like more?" Kochmeister asks. "I have more empathy than anyone needs, and it causes me distress at times, but it never causes me to withdraw from the world." Rather, he'd want to inquire about the acquisition of such empathy and its retrospective narration in an essay, book or blog post. Were Kochmeister to insist on linguistic comprehension prior to demonstrating that comprehension, he would, however, demur.
Hacking seems stuck. So long as the speech privilege must be preserved, an autistic child's "remarkable understanding of language" isn't possible because it can't occur "without [the person] yet having participated in dialogue, in babble, and in trial and error" (13) — without, that is, him or her having a firm "grasp on the ordinary community of speakers" (13). Even if we put aside the issue of speech, one must enter the community of language users, he argues, before employing language to describe one's condition. Hacking's solution to this enigma is markedly unhelpful: he disregards what he has read. "If we take the words of Mukhopadhyay and Grandin as straight descriptions of matters of fact, we have to ask whether the memories were reliable" (13), he asserts. "We might then suppose something like them is true, but only at a later age" (13). And here the argument takes a bizarre turn. Because autistics misremember their early childhoods, imposing on them language the culture is currently creating to "think autism," and because, in the process, they ascribe more understanding and awareness than was actually present, neurotypicals can do the same for those who haven't "emerged" and are most impaired. We can imagine, even impute, ability where we don't see it. The fact that some significantly impaired autistics have "emerged" and that autism is a form of life enjoins us, it seems, to be generous. Notice that Hacking isn't suggesting such autistics might still "emerge" but only that they might "understand, in a quite specific way, far more than is evident to the outsider" (13).
And yet, Mukhopadhyay wrote his first autobiography between the ages of eight and eleven: an astonishing fact, considering how sophisticated the book is, and one that cannot be dismissed easily. We are already in the land of inexplicable ability, as we are with Grandin. Should neurotypical readers understand her "thinking in pictures" as just a quaint metaphor or as a powerful perceptual difference with far-reaching implications? We ask this question even as we concede that "thinking in pictures" is indeed a metaphor and very much an example of the kind of compensatory discourse that Hacking lauds. Instead of dismissing the apprehension of language without speech (there's plenty of precedent for this4) or its successful deployment without having previously been deployed, we must ponder the implications of a distinctive neurology, not impose typical requirements.
In Autism is a World Sue Rubin tells us that at the age of thirteen her "mind woke up." Interviewing Harvard scientist Margaret Bauman, she asks, "How could my brain lie fallow for so long and wake up in a few weeks?" Prior to this period she was said to have the intelligence of a two-and-a-half year old — roughly a 29 I.Q.; after this period, 133. "Do you think you weren't thinking about anything in those thirteen years, or do you think you were picking up information, just very quietly?" Bauman wonders. "I assume I was storing information," Rubin responds, and by information she means language, the ability to communicate with words. "Voices floated over me. I heard sounds but not words," she says, describing her pre-linguistic state. "It wasn't until I had a communication system that I was able to make sense out of the sounds." Though different from Grandin and Mukhopadhyay in the absence of active decoding, Rubin nonetheless invites us to contemplate a state of consciousness that would allow someone to acquire language in an atypical fashion and then later, in effect, use it all at once. There is no other way to explain how she quickly caught up to, and surpassed, her peers in school. Rubin's description of her pre-linguistic state resonates with Mukhopadhyay's account of his early childhood, as both evoke the sense of someone simultaneously present and observing themselves from a great distance. Both suggest that they were living, if you will, in another dimension. Preoccupied with a whole range of body and sensory issues, they were unable to demonstrate what they had taken in.
In the interview with him in this volume, Mukhopadhyay reports that an fMRI revealed significant differences between his brain and that of somebody non-autistic. When the doctor tapped his left hand, his visual cortex lit up. As he puts it, "When I was supposed to be experiencing a tactile sensation, I was seeing patches of color." Mukhopadhyay discusses, in fact, a range of neurological phenomena — besides synesthesia — that radically affect how he exists in the world, some of which might have contributed, along with his mother's teaching, to both alternative language acquisition and his impressive, precocious, and, for a time, undetected intelligence. Do we really fathom what neurological difference means? Do we understand its implications? What impact, for instance, does a stupendous memory have on ordinary notions of past, present and future, let alone on narration? Do autistics misremember? Does the acquisition of language make them do so? The questions are endless. The way forward can't be to disregard what autistics say. Put simply, there's a difference here that Hacking has either paradoxically underestimated or negatively overestimated, a difference beyond discourse but only known to neurotypicals (and perhaps increasingly to literate autistics) through discourse.
Finally, Hacking's notion of "gifted" autistics presumes way too early in the game that those from whom we are hearing are necessarily the most talented and not simply those upon whom circumstances have smiled, including the circumstance of devoted parents who have the knowledge and economic wherewithal to doggedly teach literacy and communication. We're just at the beginning of an autistic renaissance. More and more, people with autism are showing us what they can do, especially at the so-called "severe" end of the spectrum. The idea that inclusive education is by definition for "children further along on the spectrum" (4), as Hacking seems to think, following Charlotte Moore (who he calls his favorite parent memoirist), offends. Many autistics resent the kind of paternalism, however good natured and good hearted, that Hacking and others manifest — their sentiments simply don't go far enough. These autistics want opportunities, services, fulfilling lives. They want civil rights.
5. Forgetting What We Think We Know
Accordingly, how we receive the aid of autistic narrative in our effort to understand autism, what we want it to teach us, makes all the difference. Like some of the new science, the rich autobiographical literature, from every point on the spectrum, challenges many sacred theoretical cows. Unfortunately, scientists and medical professionals are often woefully ignorant of this literature — beyond having heard about Temple Grandin. Were they to read the literature, they would discover a giant chasm between standard accounts of the "disorder," such as in the DSM, and the actual experience of autism. Why not pursue the claims of sensory processing, proprioception, and movement problems that appear consistently in these autobiographical works? Why not begin to connect the anxiety that is so much a part of autism with these bodily differences, reading perseveration and withdrawal not as signs of an innate aversion to the social but as coping strategies, strategies that then contribute to a growing lack of social experience in an already inhospitable and stigmatizing world?
In their reconsideration of autism, the team of Anne Donnellan, a professor at the University of San Diego's School of Leadership and Educational Sciences and director of the Autism Institute; and David Hill and Martha Leary, speech-language pathologists, offers a dynamically interdisciplinary account of what neurotypicals might be observing when they observe ASD. As attentive to the physiological aspects of autism (particularly sensory and movement differences) as to the cultural setting in which autism gets interpreted, and ever faithful to the voices of people with the condition, they move us beyond what Doug Biklen terms the "myth of the person alone." In her essay, Melissa Park, an occupational therapist and anthropologist, shows us not only what might happen in an occupational therapy suite as a child with autism learns to organize his body but also how one might respectfully narrate a therapeutic encounter with the neurological other. "Work with me, not on me," as the title of a presentation by Donnellan et al. once put it.
A concept of neurodiversity can help us to remain attentive to a different sensibility — indeed a different way of being in, and perceiving, the world — while at the same time reminding us of the need to construct the category of the human in the most capacious manner possible. (Park's phrase a "healing of regard" nicely evokes the work of a neurodiverse perspective, where all are "healed" of the damage that results when difference is conceived of as a problem.) Dawn Prince might tell us to abandon the category of the human and the privilege attending it altogether. In her essay, "The Silence Between: An Autoethnographic Examination of the Language Prejudice and its Impact on the Assessment of Autistic and Animal Intelligence," Prince critiques the way that neurotypicals have narrowly promoted one kind of language and in the process denigrated nonspeaking people with autism, animals, and the natural world we all inhabit. Narrating an extraordinary encounter with an ape she provocatively calls a man and with whom she plays exuberantly, an ape who has managed indirectly to learn some sign language and who asks her if she is a gorilla, Prince figures a moment of species misrecognition as a kind of ethical hope.
Building on her YouTube sensation, "In My Language," which persuasively argues that the "coping strategies" mentioned above are really a kind of expressive interaction with her environment, Amanda Baggs insists that we not create oppressive hierarchies and instead opt for a neurodiverse judgment: what she calls "my richness and yours." Marveling at both Baggs' generosity of spirit and her capacity to shuttle back and forth between two "language" and being systems, we note that neurotypicals rarely make the equivalent "bilingual" effort to bridge differences. If the editors of this volume weren't so committed to discrediting certain locutions in the field of autism studies, we might, amplifying Hacking's point about mutual "compensation," speak of high- and low-functioning neurotypicals. The former would be those who, after reading many first-person accounts of autism and interacting with autistics, really do begin to appreciate a different neurological point of view. Such a move would emulate the sardonic mischief of Kassiane Sibley. In the self-advocate roundtable she describes what amounts to the latter group of neurotypicals as "oh-so-empathetic carelessgivers."
Reading Nick Pentzel's essay, we are tempted to propose that only a concept of neurodiversity can undo the internalized oppression that sometimes makes people with autism their own worst enemies. How to live in a world that aggressively prefers that you not be in it? How to think well of yourself? In his essay, DJ Savarese offers the perspective of a fully included high school student who wants vigorous contact with his peers. In an interview with CNN's Sanjay Gupta, DJ responded famously to the question "Should autism be treated?" by saying, "Yes, treated with respect." But DJ, like so many other people with autism, desires more than just an end to the kind of hate speech and reductive stereotypes that pervade our culture. He desires rich, life-affirming interaction with his fellow human beings. This interaction, though, requires the accommodation of significant differences. If you do not wait long enough for a nonspeaking person with autism to respond to a greeting, failing to recognize the complex motor movements and sensory processing that he or she must execute to wave, type or write a reply, or if you demand from them conventional eye contact, say, and don't receive it, you might assume an obdurate a-sociality and stop saying "Hello."
Complicating the perspective of the sympathetic outsider roundtable, both Zosia Zaks and Valerie Paradiz provide rich accounts of parenting on the spectrum. Zaks confronts the bias against people with cognitive disabilities electing to have children, and Paradiz writes of parenting a child with autism and, in the process, discovering that she is herself autistic. She also recounts the effort to build a progressive school for young people with Asperger syndrome. Here the concept of neurodiversity might necessitate not inclusion but the strategic election of an intelligently engineered arena of affirmation and support. No one educational approach can lay absolute claim to the spirit of disability rights, though what Paradiz envisions is far from the typical self-contained classroom. In his essay, "Being Autistic Together," Jim Sinclair, founder of Autreat, a summer retreat for autistics run by autistics, lays out the notion of "autistic space" and, in so doing, allows us to understand such togetherness as deeply, if differently, cultural. It's hard to think of another person whose writings and activism have been more influential to the neurodiversity movement than Sinclair.
The refereed articles we haven't yet mentioned all devote themselves, in one way or another, to the project of cultural critique. In "Autism Functions/The Function of Autism," Stuart Murray dissects this common term, which is so central to the way we understand autism and label people with this condition. Turning it on its head, he analyzes how certain beliefs about autism function in the culture at large, noting that we haven't really progressed too far beyond Rain Man stereotypes. Sarah Birge looks at two comic-book representations of autism in her article "No Life Lessons Here: Comics, Autism, and Empathetic Scholarship," suggesting that this particular medium can uniquely facilitate the kind of "empathetic scholarship" that Mark Osteen propounds. Bill Rocque examines the persistent representation of autism as "mystery" and "threat" in therapeutic literature, and Kristina Chew explores the ideology of devotion in Louis Ann Yamanaka's novel of autism, Father of the Four Passages, inserting crucial issues of race, ethnicity, and class into discussions of ASD. The trope of silence, which is all too familiar to readers of autism texts, operates quite differently in an Asian American context than it does in an exclusively Caucasian one. Lastly, Melanie Yergeau's article, "Circle Wars: Re-shaping the Typical Autism Essay," investigates how scholars, particularly teachers of composition, reference autism in their work. With an attractively witty impatience, she reveals just how misinformed many of these scholars are and how unintentionally demeaning they can be.
6. Autism and the Field of Disability Studies
Yergeau's article invites us to consider whether progressive scholars in the field of disability studies treat autism any more sensitively. Aside from works that focus exclusively on ASD, and even some of these are a mixed bag, there are many that give pause. Take, for example, an important book in the humanities by Ato Quayson called Aesthetic Nervousness. It arrived in 2007 with the blessing of Rosemarie Garland Thomson, who raved in a blurb, "A work of literary criticism in the best sense. Ato Quayson is taking the field forward." While admirable in many ways, the book betrays its own intentions with the chapter on J.M. Coetzee called "Speech, Silence, Autism and Diologism." Quayson's understanding of autism is very stereotypical. He offers a DSM-like list of autistic symptoms derived from the work of Simon Baron-Cohen and, he notes, from personal conversations with this expert luminary, including the fallacious claim that "in lower-functioning autism the autist understands almost no metaphors, so everything is taken literally" (152). Moreover, the only autism texts that Quayson cites in the chapter itself are the bestselling and massively stereotypical novel The Curious Incident of the Dog in the Nighttime and an essay by Matthew Belmonte. There is no mention of insider narratives by Donna Williams, Dawn Prince, Jim Sinclair, Amanda Baggs, Sean Baron, Sue Rubin, Larry Bissonette, Jamie Burke, Tito Mukhopadhyay, Stephen Shore, Sharisa Kochmeister, Phil Schwartz, Kassiane Sibley — the list literally goes on and on.
Had Quayson encountered these narratives before writing about Coetzee's autistic-like characters, he would have refrained from offering a reading that depends on the "scrupulous silence [autists] enjoin upon themselves" (150). Again and again, he speaks of the "elective silence of the autist" (150) and of the "autist's absolute desire for social silence and separation from social intercourse" (154). That last claim boldly eschews qualification of any kind. At the very least, knowledge of clearly social, self-representing, metaphor-using autists would have put pressure on how Quayson evaluated Coetzee's deployment of lower-classed and raced characters whom he construes as having this neurological condition. How elective can silence be in a culture already hostile to blacks, let alone to poor blacks with cognitive disabilities? How elective can it be when the physical act of speaking or writing is often such a challenge? Surely, one of the critic's obligations is to ascertain the extent to which the novel he is reading traffics in stereotypes, stereotypes that are then made available for metaphorical commentary on a country's oppressive political system. That Quayson worries about how Coetzee turns cognitive difference into metaphor is insufficient. Of course, Aesthetic Nervousness is but one text in the humanities; there are plenty of others that cause concern and any number in different fields.
We hope that our collection of insider and outsider discussions of ASD will encourage scholars who do not specialize in autism or who remain fixated on deficit-oriented research to be more informed. Controversy surrounds many of the commonly accepted truisms about this neurological condition. It is especially imperative that scholars in the field of disability studies be scrupulously responsible. They must attend to what people with autism say about themselves, even as what they say clearly participates in the larger culture. Furthermore, scholars must resist acting like traditional scientists who establish pathology in order to elucidate "normal" functioning. Literary scholars, for instance, must exercise caution when discoursing on the operations of narrative. Imagine a cognitive approach to literature that cited wheelchair users' difficulties with its steps, an approach that had no interest in what these users actually had to report about their reading experience. While autism obviously involves the brain, the affront would be similar. These approaches too often assume a kind of zero-sum game: either autistic comprehension or non-autistic comprehension. As some of the special issue's contributors make clear, non-autistic comprehension can be learned by people with autism and manifested with impressive results. But can autistic comprehension be learned by neurotypicals? Again, do we even try?
The field of disability studies has been slow to take up cognitive disability, and it has done so with some discomfort — in part because notions of social construction, while important, seem inadequate to the task of assessing physiological differences in the very organ of perception, and in part because these differences seem such a threat to what most makes us human. While adapting our analytical tools, let us take the same care with autism that we do with physical impairments. At the same time, let us think seriously and respectfully about the full implications of neurological diversity. Finally, let us acknowledge autism's heterogeneity. Although presuming competence, 5 in Doug Biklen's phrase, or practicing the least dangerous assumption, in Anne Donnellan's, may overstate what is actually possible for some with autism, doing the opposite has limited many a life. Neurodiversity must mean embracing those who have no interest in, or apparent aptitude for, neurotypical language habits, but we have generalized negatively, even catastrophically, for too long.
Rounding out the special issue is an extensive interview with Tito Mukhopadhyay entitled "More Than a Thing to Ignore" on poetry and autism, examples of Mukhopadhyay's verse, and a number of book reviews, including one by Mukhopadhyay of a chapbook of poems by Rebecca Faust, the mother of a child on the spectrum. Pushing back against claims of an obdurate literality in those with ASD, the interview with Mukhopadhyay explores how some of the cognitive difficulties that he experiences — over-association, perseverative attention to detail, delayed apprehension of the whole, a persistent animistic sense of the natural world (what he calls "pan-psychism"), a preference for auditory over visual processing, and a tendency to find or impose patterns, even synesthesia — might actually facilitate poetic expression. In turn, metrical poetry, Mukhopadhyay, reports — and there's testing to back this up — calms his anxiety, and it might even aid in the mastery of complex motor tasks. What would it mean for autism studies and indeed for literary studies if, say, William Blake helped him to learn how to tie his shoes? Once again, a rigid notion of impairment (or poetry) doesn't seem entirely appropriate.
Following the interview and Mukhopdhyay's poems, Chris Gabbard reviews Mark Osteen's edited collection, Autism and Representation, while Irene Rose reviews Stuart Murray's book, Representing Autism. Bruce Mills, himself the father of a child with autism, reviews two recent memoirs of autism by fathers, and Katie Ellis provides an omnibus review of films about autism from Australia.
The special issue is jam-packed. We wish to thank the many contributors and article referees. We close with the words of Dawn Prince, from whom the title of this introduction is derived. Chiding those who say disparaging things about people with autism, she reminds us of the requirements of true communication. "What people often forget is that listening is the superior half of speaking," she writes. Let us listen to people with autism, and let us listen to ourselves when we presume to speak pejoratively. "NTs Listen" could be our rallying cry.
- Antonetta, Susanne. A Mind Apart: Travels in a Neurodiverse World. New York: Tarcher, 2005. Print.
- Autism Is A World. Geradine Wurzburg, dir. State of the Art Inc., 2005. Film.
- Autistics.org. Web.
- Baggs, Amanda. Ballastexistenz. Web.
- Best, John. Hating Autism. Web.
- Biklen, Douglas. Autism and the Myth of the Person Alone. New York: New York University Press, 2005. Print.
- Burks-Abbott, Gyasi. "Alterity and Autism: Mark Haddon's Curious Incident in the Nurological Spectrum." Autism and Representation. Ed. Mark Osteen. New York: Routledge, 2008. Print.
- Clark, Camille. Autism Diva. Web.
- "Controversial New Movement: Autistic and Proud." Good Morning, America. ABC. 10 June, 2008. Television.
- Dawson M, Soulières I, MA Gernsbacher, L Mottron. "The Level and Nature of Autistic Intelligence." Psychological Science 18 (2007). Print.
- Edelson, Meredyth Goldberg. "Are the Majority of Children with Autism Mentally Retarded?: A Systematic Evaluation of the Data." Focus on Autism and Other Developmental Disabilities 21 (2006). Print.
- Finding Amanda. Anderson Cooper 360. CNN. 20 Nov. 2007. Television.
- Gernsbacher, Morton Ann. "Autistic Need Acceptance, Not Cure." neurodiversity.com, 24 April, 2004. Web. 16 Nov. 2009.
- Grandin, Temple. Thinking in Pictures. New York: Vintage, 1996. Print.
- Hacking, Ian. "Autistic Autobiography." Philosophical Transactions of the Royal Society B Biological Sciences vol. 364, no. 1522 (2009). Web.
- Happé, Francesca, and Uta Frith. "The Beautiful Otherness of the Autistic Mind." Philosophical Transactions of the Royal Society B Biological Sciences vol. 364, no. 1522 (2009). Web.
- Harmon, Amy. "Neurodiversity Forever; The Disability Movement Turns to Brains." The New York Times, 9 May, 2004. Print.
- "Horrific Autism Speaks 'I am autism' ad transcript." autismadvocacy.org, 23 Sept. 2009. Web. 16 Nov. 2009.
- Klar, Estée. The Autism Acceptance Project. Web.
- The Joy of Autism. Web.
- Leitch, Kevin. Left Brain/Right Brain. Web.
- Mukhopadhyay, Tito. How Can I Talk If My Lips Don't Move? New York: Arcade, 2008. Print.
- Muskie. Institute for the Study of the Neurologically Typical. Web.
- "Neurodiversity." Wikipedia: The Free Encyclopedia. wikipedia.org, 4 Nov. 2009. Web. 16 Nov. 2009.
- Paradiz, Valerie. Elijah's Cup: A Family's Journey into the Community and Culture of High-Functioning Autism and Asperger's Syndrome. New York: Free Press, 2002. Print.
- Quayson, Ato. Aesthetic Nervousness: Disability and the Crisis of Representation. New York: Columbia University Press, 2007. Print.
- Sacks, Oliver. An Anthropologist on Mars. New York: Knopf, 1995. Print.
- Savarese, Ralph James. Reasonable People: A Memoir of Autism and Adoption. New York: Other Press, 2007. Print.
- Schwarz, Phil. "Film as a Vehicle for Raising Consciousness," Autism and Representation, ed. Mark Osteen. New York: Routledge, 2008. Print.
- Seidel, Kathleen. Neurodiversity.com. Web.
- Sinclair, Jim. "Don't Mourn for Us: A Letter to Parents." neurodiversity.com, 1993. Web. 16 Nov. 2009.
- Smith, Joel. NTs Are Weird. Web.
- Solomon, Andrew. "The Autism Rights Movement." New York Magazine 25 May, 2008. Print.
- The Noonday Demon: An Atlas of Depression. New York: Scribner, 2002. Print.
- Soulieres I, M Dawson, F Samson, EB Barbeau, CP Sahyoun, GE Strangman, TA Zeffiro, L Mottron. "Enhanced Visual Processing Contributes to Matrix Reasoning in Autism." Human Brain Mapping 30 (2009). Print.
- Whose Planet Is It Anyway? Web.
- Williams, Donna. Nobody Nowhere. New York: Crown, 1992. Print.
- Somebody Somewhere. New York: Crown, 1994. Print.
- Wilson, James C. Weather Reports from the Autism Front: A Father's Memoir of His Autistic Son. Jefferson: McFarland & Company, 2008. Print.
- Wolman, David. "The Truth about Autism: Scientists Reconsider what They Think They Know." Wired Magazine. 25 February, 2008. Print.
Fully aware of the debates about person-first language, we use "autistics" and "people with autism" interchangeably, though where there is a clearly established preference, we try to respect that preference.
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The vitriol of neurodiversity's opponents is so intense that parent advocates who subscribe to this philosophy are sometimes called "child abusers" and autistic self-advocates, at both the so-called "high-" and "low-" functioning ends of the spectrum, are accused of faking autism. The vitriol spills over into debates about the efficacy of facilitated communication, which some contributors to this volume use to express themselves. By dismissing outright a technique with an admittedly controversial past, despite some users learning how to type independently and others passing verification tests, what is said to be truly awful about autism — the unreachability of autistic loved ones — can be preserved to justify the need for a cure. That Sue Rubin, for example, or Jamie Burke types independently remains an inconvenient truth to champions of a devastating deficit agenda. Reasonable People discusses at length FC's woeful history, acknowledging a range of problems with the technique (especially when literacy and independent pointing aren't taught first), but it also argues for reconsideration. The emergence of people who have learned to type independently and/or passed verification tests and the appearance of smaller studies confirming the technique's validity, along with a growing body of evidence that suggests autism might be a complex movement disorder, warrant it. Why not teach literacy and pointing and then give people with the most impairing kinds of autism a chance to work at keyboards? Safeguards can be put in place to establish authorship and prevent wild claims of abuse; independence can be emphasized. That Soma Mukhopadhyay has had success with her own technique called the "Rapid Prompting Method," which does not involve the sort of physical facilitation that often leads to skepticism about authorship (though some people doubt RPM as well), shows that the originators of FC were very much onto something. As should be abundantly evident, we still know very little about "severe" autism.
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It's not clear the degree to which Hacking would repudiate ToM beyond the notion that each form of life — neurotypicality and autism — lacks something crucial for understanding the intentions of the other. What appears to be a level playing field, however, really isn't if one side's lack is considered to be significantly worse than the other's. And if the majority is wrong about the nature of the minority's lack, the consequences can be devastating. Too many autistics have pointed to an excess of empathy or an atypical or even delayed manifestation of it for ToM to continue to function as a useful understanding of autistic difference. The self-advocate roundtable takes up this issue forcefully.
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As the deaf demonstrate, speech is not a prerequisite for language. But there are plenty of autistics who demonstrate this fact as well — namely all of those who type or write or point to communicate. Jamie Burke makes a mockery of the rigid rule: he learned to speak long after he learned to type. See Morton Gernsbacher's essay "Language without Speech: A Case Study" for a rigorous debunking of the speech privilege. Journal of Developmental and Learning Disorders, 8 (2004).
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The notion of "presuming competence" differs significantly from Hacking's intentional misreading of those who seem profoundly incompetent. The former imagines actual capability or, at the very least, potential capability with respect to neurotypical language habits.
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