a stack of vintage classic literature books

Disability Studies and the Personal; Or How You Can Learn to Stop Worrying and Love Neurodiversity

By Ralph Savarese

This essay began as a response to a review in American Literary History of my recent book, See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor. The reviewer, Mark Osteen, behaved, I believe, unethically. It quickly morphed into a story of negotiating with the editor of ALH, Gordon Hutner, who agreed to publish a formal reply but then balked at the last minute. He decided that the reply was too personal and judgmental—in effect, an ad hominem attack.

As it continued to grow, the essay pondered the status of the personal in disability studies. In its present form, it acknowledges that many of the field’s luminaries have used their lives to advance both a scholarly and an activist agenda. Reflecting on a tense Facebook exchange with Osteen and another scholar, James Berger (an exchange that occurred before the former’s review was published), I challenge their critiques of neurodiversity. I do so in the context of the rapidly changing science of autism and the important work of self-advocates. These critiques insist that the concept in no way accommodates the most impaired and, as a result, isn’t the least bit diverse. At the end of the essay, I include the reply that Hutner ultimately rejected.

  1. A Reviewer’s Obligation

What did Osteen do that I find objectionable? For one thing, he failed to reveal our longstanding differences. As anyone who has read our work knows, when it comes to autism, we disagree about virtually everything: inclusion, the presumption of competence, the neurodiversity movement. For another, he didn’t mention that I criticize his ideas in my book or that I once rejected a chapter of his memoir, One of Us, for a special issue of Disability Studies Quarterly that I was coediting.

Nor did he mention our dramatically contrasting personal stories. Whereas Osteen put his twelve-year-old, nonspeaking son with autism in a “full-time residential school” (as these facilities are sometimes euphemistically called), I put the six-year-old nonspeaking boy with autism whom I adopted from foster care in a regular classroom. That boy, who had been labeled by specialists “profoundly retarded,” went on to graduate Phi Beta Kappa from Oberlin College as its first nonspeaking autistic student. In 2017, he won a Peabody Award for the documentary film, Deej, that he stars in, wrote, and coproduced.

I said “stories” for a reason. We have each published a memoir of autism—in my case, Reasonable People, and in his, One of Us—that sought to intervene in debates about the “severely” autistic. (Oliver Sacks once noxiously described this group as “creatures for whom little future lies in store.”) I am not speculating about my reviewer’s life; it is there, as he presents it, in a book, doing all sorts of rhetorical work. Its relevance to the review should not be assumed, but nor should it be dismissed out of hand.

Osteen, I am trying to say, has a long, well-documented history of decrying classical autism’s hardships on parents, and I have a long, well-documented history of celebrating its possibilities for autistics. I could no sooner evaluate his work fairly without telling you my perspective than he could evaluate my work fairly without telling you his perspective. It’s dishonest of him to feign impartiality by offering lukewarm praise on the one hand and prefabricated criticism on the other. Put simply, Osteen and I both come to autism loaded for bear. Readers deserve to know that.

  • Ad Hominem, or To the Person

When I wrote to Gordon Hutner, he invited me to craft a reply. I worked with him through three rounds of revision, acceding to the vast majority of his edits. At the end of the process, he said, “Thanks for sending this along and for considering my annotations. I can’t say when this will get posted, but I’m committed to posting it as promptly as possible.” In a prior email, he had suggested additional changes with respect to tone but added, “I’ll post what you decide.” Eventually he landed on the middle of January for a publication date.  

A week before the piece was supposed to run, he changed his mind. He now demanded another round of revision. He asked me to omit altogether “passages that can be interpreted as an attack on the ways that [Osteen’s] chosen to raise his son and his motives in taking the perspective that you find objectionable.” As a result, I could no longer question the ethics of the review nor point out the overdetermined nature of anything that Osteen (or I) might say. The fact that we have both published memoirs about our autistic sons was irrelevant. That fact that our divergent views on autism are a matter of public (scholarly) record was irrelevant. The fact that something other than a mere intellectual skirmish was at stake—that, too, was irrelevant.

Hutner’s final email left no room for disagreement: “Unwelcome as this request is,” he wrote, “please be assured that it reflects very, very careful consideration and that I am prepared to relinquish the journal’s interest in the rebuttal should you feel that you need to decline.” I did indeed feel the need to decline, though not before seriously considering—in fact, agonizing over—these new demands. While the word “unwelcome” doesn’t at all capture my reaction to the email, Hutner’s point could not be casually dismissed, even if it seemed to reflect a case of cold feet. The ideal of reasoned argument, the opposition to ad hominem attack—who could object to that?

The bar, however, seemed impossibly high: “…passages that could be interpreted as an attack…” [my italics]. Was demonstrating that a reviewer had failed to disclose not only conflicts of interest, which should be disqualifying, but also relevant personal information, which may have slanted his review, really out of bounds? When I appealed to Osteen’s personal life was I ascribing a motive to my reviewer, or was I suggesting that he should have taken much greater care when assessing views so different from his own?

Was using a quotation from the reviewer’s own memoir of autism, which depicts his son in a patently unfavorable light, truly impermissible? What if the purpose was to expose a fundamental contradiction in the review? Osteen had claimed that my subjects are insufficiently “diverse” because you can’t find among them the most impaired autistics. (I dispute this claim.) How can anyone reasonably deploy the language of diversity when they have no interest in matters of race, ethnicity, and gender with respect to autism. Or when they have a habit of negatively representing neurological difference? Diversity can be used as a club but not upheld as a principle?

When I criticized Osteen’s memoir, I was engaging in the sort of critique that is central to my field. I believed that readers should know about his representational practices, and I worried that such practices may have affected his characterization of my subjects’ insights regarding literature. He had dismissed those insights as being just about autism and not the works in question. Imagine complaining of Toni Morrison’s book Playing in the Dark that it’s just about race and not the works in question. Imagine begrudging readers their own investments in texts or denying what they’ve found lurking in the background. What drives such a dismissal? Is it really unacceptable to ask?

If my reply to the review was ad hominem, then it was at worst ambiguously so. When thinking about autistic ability, surely there’s a distinction between saying, “Osteen is a Communist or a Cubs fan and thus shouldn’t be listened to on the subject of autism,” and “Osteen institutionalized his son and thus might not be the most reliable evaluator of autistic potential.” But I made no such argument. Again, my point was about Osteen’s conduct as a reviewer. Readers should be able to come to their own conclusions without needing a guide to the hidden drama behind the words.

  • The Particular, the Private, and the Emotional

As I pondered my predicament, I realized that Hutner had boxed me in: he didn’t want my reply to be in any way personal. That is “of, affecting, or belonging to a particular person rather than to anyone else” or “of or concerning one’s private life, relationships and emotions rather than matters connected with one’s public or professional career.” So, my reply needed to eschew the particular, the private, and the emotional—despite the fact that work in disability studies often does just the opposite. As people familiar with the field know, “the personal” and “the scholarly” have each played a key role in the field’s development, but they have also been conspicuously—and, I would argue, productively—intertwined. Figures such as Rachel Adams, Christopher Bell, Michael Berube, Lennard Davis, Chris Gabbard, Eva Feder Kittay, Catherine Kudlick, Rod Michalko, Anand Prahlad, to name just a few, have all either written memoirs of disability or injected autobiographical material into their traditional scholarship. (My own book, the one in question, is itself a hybrid: part literary criticism, part neuroscientific investigation, part memoir.)

Leveraging the experience of a child’s or a sibling’s or a parent’s or their own disability, they have sought to expose the prejudice of standard accounts of physiological distinctiveness. They have sought to give an intellectual argument flesh and feeling by appealing to lived experience. They have sought to show, as forcefully as they can, what such prejudice does to a life but also what beauty exists in disability. These scholars’ hybrid critical cars, you might say, depend on varied—and sometimes intermingled—fuel sources. (Like a Prius salesman, I’m tempted to shout, “They’re better for the academic environment!” By “better” I mean both more honest and more readable.)

In this respect, not much separates Osteen and me. The personal doesn’t hide behind an academic monograph or article; it’s out in the open for all to see. How strange to be told by Hutner to banish an important part of this debate to some invisible, ghostly domain. (Who but the most informed reader of ALH, the most talented ghost buster, could possibly discern it?) In my judgment, Osteen used the guise of scholarly disinterestedness to knock my book and, much more important, to criticize autistic self-advocates. Turning a line from the “Gospel of Matthew,” we might say, those who live by the personal should have to die by the personal—or at least be responsible to it.

  • Self-Righteous, Moralizing Baloney

Let me share a recent Facebook post by another scholar with a connection to autism. It was part of an exchange involving Osteen and me, and it appeared a few weeks before the latter’s review of See It Feelingly was published. Osteen had criticized a wonderful new hybrid monograph, Authoring Autism, by the autistic scholar Melanie Yergeau. He had accused it—he does this over and over again—of emphasizing autistic competence at the expense of those more “severely” impaired. I vigorously defended Yergeau’s book, at which point James Berger, formerly of Hostra and now of Yale, entered the fray. Before quoting his response in full, let me say that I laud the post, even as it attacks me and even as I reject its conclusions. The honesty, we can all agree, is breathtaking:

James Berger Ralph, I’ve written very little about my own family, and I don’t feel like doing it now. One can simply assume that I have personal reasons as well as intellectual ones for forming the views that I’ve come to have. And I really don’t need your self-righteous moralizing baloney to let me know how much better than me you no doubt are. And look, I apologize for tone now. But fucking Christ, enough already. You’ve done good things for and with your son. Good. Not everybody can. People, in general, try their best. There are many stories and many outcomes. There’s pain and happiness, and never exclusively one or the other, as you of course know. We all know. It’s clear that we know more now about how we might communicate with those who at first appear incapable than we did when I and my sisters were growing up, and this is vastly to the good. But there actually is a vaster range of neural possibilities than current neurodiversity appears to account for. It strikes me, oddly enough, that “neurodiversity” actually is a theory of how everyone on some level is the same, how everyone is translatable, not of how some people may remain untranslatable, at least in terms of language use.

You might be tempted to conclude that if Berger’s post represents the personal, then we certainly don’t want it in scholarship! Yet I think we do. This, after all, is the field of disability studies—or at least a part of it, the part (of a certain generation, with certain, intimate links to, longings for, and regrets about disability) that helped to get the field going or, as in Berger’s case, came to it belatedly. Whether this much affect should reside in disability scholarship is irrelevant; it’s there beneath the surface. Undeclared, unrecognized, it poisons the mind water. It inhibits important, complex conversations—or distorts them mercilessly.

Berger’s post has everything: guilt, jealousy, resentment, anger, admiration, all mixed in with a completely legitimate point: the need for many stories and the fact of many outcomes and many neural possibilities. That Berger’s tired of hearing about my son is, I guess, understandable, though it seems akin to hating Elizabeth Warren’s debt forgiveness program because you’ve already paid your debt off. Progressive change be damned! Now, of course, it’s my turn to apologize. Although not entirely without merit, that little potshot reduces a complex response to a single, pejorative motive. Even worse, it derides Berger’s frustration, which seems, in the end, to be a response to the culture’s deeply structural and oppressive ableism. Or at least I choose to read it this way.

By some estimates, my son is only the tenth or eleventh nonspeaking autist in the U.S. to earn a college degree—he graduated in 2017. He was the first to get into a highly selective college, and the first to live (with an aide) in the dorm. Am I bragging when I say this? Maybe. Am I guilty of fatherly pride? You bet. But I’m also advertising possibility. And I’m trying to apprise people of how behind we are in supporting this group of autistics. Although it is beginning to change, we still know very little about what these folks can do—scientists have neglected them because they make for such poor research subjects. It has simply been assumed that intellectual disability is the norm. After all, they look so disabled and behave so oddly, and they cannot speak. (I’m parroting the logic.)

To triumph collectively over such obstacles, stories of success must be narrated again and again and again. We must contest the casual squandering of potential. And so, by mutual agreement, my son, wife, and I have made our personal lives available to other families with nonspeaking autistic children and to the field of disability studies more generally. It hasn’t been easy, but that’s a topic for another essay. How odd to be told that we don’t appreciate neurological difference. At this moment, to insist too strenuously on the “many outcomes” argument is to hinder not only the discovery of linguistic competence in the nonspeaking autistic population but also its methodical cultivation. Since when, I would ask, have diversity and complacency been the perfect couple?

I get it: the pathos of hearing about the fulfilling life of someone else’s disabled relative; the pathos of thinking that maybe you haven’t done enough for your own child or sibling; the pathos of fearing that it’s just too late for a certain generation of autistic people; the pathos of life’s random (and frankly not so random) distribution of luck—all of this can only be unbearable.

When Berger says that “not everybody can” do what I did, he gets much closer to the (very sad) truth. What makes my son’s story so compelling is both how improbable and how contingent it is. The chances of being adopted from foster care when you are a little boy, as opposed to an infant, are slim. When you have a significant disability, those chances might as well be zero. The chances of a typical foster child going to college are just two percent; the chances of a nonspeaking autistic foster child going to college, let alone a highly selective one, are less than zero. You require, frankly, a miracle. Your adoptive parents must possess, on the one hand, enormous resources and, on the other, a previously formed, passionate commitment to justice and inclusion. Winning the Powerball lottery seems more likely. But here’s the real kicker: even with every advantage you could name, including being white, our journey has been extraordinarily difficult. And that is the point.

Getting my son out of foster care—it took two and a half years; treating his profound trauma—he had been mercilessly beaten and sexually abused; including him in a regular classroom—he was the first significantly disabled child in Northern Florida to leave a center school for his neighborhood one; managing the transition, year after year, from one classroom to another and, periodically, from one school to another; negotiating with state and national testing agencies for appropriate accommodations; facilitating peer friendships; affirming his self-worth—one night, in sixth grade, he typed on his text-to-voice synthesizer, “Freak is ready for bed”; instilling ambition and expectation—to the extent that he decided to apply to a small, residential, liberal arts college nine hours from our house; making this dream happen—my wife had to pack up and move to Ohio to coordinate his many support services (she lived in town while he lived in the dorm): the last two and a half decades have been nothing less than a personal D-Day invasion of ableism and exclusion.

I want neither your sympathy nor your applause. My aim is to put pressure on the statement “People, in general, try their best.” Do they? Or, rather, are they even allowed to try their best? Both that “trying” and that “best” need radical reinvention. Lives, after all, hang in the balance. So many things conspire to preserve the status quo and to call it good enough—or to suggest that it simply represents “the vast range of neural possibilities.” When the ten-thousandth nonspeaking autist has earned her college degree, and when she’s not the progeny of upper middle-class white folks, I’ll stop preaching on Facebook and elsewhere, I promise. I might even do it after the one-thousandth. You can buy me a t-shirt that says, “Fucking Christ! Enough Already!” and I’ll wear it gladly.

  • You Show Your Metal

A concluding point about that “vast neural range,” before I paste in the reply that Hutner ultimately rejected. Both Osteen and Berger, for all of their avowed insistence on heterogeneity, reduce autistic literacy to a single, homogenized phenomenon. Theirs is a theory of how every autistic reader is on some level the same. To them, you either read and communicate or you do not; you’re either “translatable to language” or you are not. The binary itself gives birth to the claim that neurodiversity’s proponents have walked away from the most impaired. And it makes a mockery of difference.

In my book I show something much more complicated and interesting, something much more varied. Autistic readers can be object visualizers or spatial visualizers or any combination of the two. Some can turn words into films in their heads; some can play these films over and over, slowing them down or speeding them up at will. Some can smell language or taste it. Some have trouble accessing emotion; some feel swamped by it, as if they were in a dinghy swept out to sea. Some identify with nonhuman characters or entities. Some find reading itself too distracting; they’d much rather listen to a book. The letters move like ants on the page, and they find themselves following, at the expense of conventional comprehension, an incidental pattern—say, the empty circle in the letters “o,” “b,” and “p.”

Binaries won’t help us: both the resulting groups and what distinguishes them are manufactured. A study from 2005 showed that in general autistics remember letters quite differently from nonautistics (Koshino). They rely much more heavily on the right cerebral hemisphere, which excels at processing shapes and visual information. In contrast, nonautistics rely much more heavily on the left cerebral hemisphere, which excels at processing language. In other words, the former, even when they know how to read, treat language, at least initially, as if it were art, whereas the latter treat language in a strictly utilitarian fashion. (Imagine responding to a font like Times New Roman as if it were calligraphy.) In this context, the phrase “translatable to language” is nowhere near as self-evident as it might seem. Indeed, the hard line between the literate and the illiterate dissolves.

Consider the following poem by my son, DJ, from his ekphrastic chapbook, A Doorknob for the Eye (Unrestricted Press 2017). It engages with the work of nonspeaking autistic artist Dan Miller who produces art at an organization called “Creative Growth” in Oakland, CA. Miller is said to be intellectually disabled, and he wears a helmet to minimize self-injurious behavior. His work is known for using language as an object, a kind of material whose semantic content is undone through obliterating accumulation.

First the painting, and then the poem:

../Desktop/e9686623a13d81ceecfe33a927cefb93.jpg
After Dan Miller, Untitled (watery blue ink with “Metal”), 2014, 45 x 30 in.

HAWKING RADIATION

Must language always be a donkey?
Why not a braying gemstone,
a topaz ocean
whose lettered waves approach
obediently, then shatter
on the shore?
You’re ready for the NFL
in that helmet, Dan,
or the Tour
de France;
your bike is a morphological
calamity, resting
in a heap of twisted
metal
at the bottom
of the
Pyrenees.

Shall we praise the laggard scientists?
A study found that autistics
know exactly where to hit
their heads so as not
to harm themselves.
The skull, let us agree,
should be as malleable as ink
and certainly as
eloquent.
No matter: the helmet, too,
can be decoration;
and the center for people with disabilities,
performance art.
I, too, lived in an institution,
Dan.
You show your metal
every day.

–DJ Savarese

Here, two nonspeaking autists communicate across artistic media. One writes, one paints. They both see in neurodivergent ways. Whatever sameness characterizes them it is the sameness of a norm bearing down on you and finding you lacking, the sameness of an hysterical, colonizing pathology. How easy it is to mock the concept of neurodiversity, to erect a scarecrow and set it on fire.

  • You Be the Judge

And now, at last, the rejected reply to Mark Osteen. Reading it over again, I spot things that I would change, maybe even soften. In reproducing what Hutner agreed to publish, I hope that I am fostering a discussion of some particularly thorny issues. I make no claim to personal or argumentative perfection; I have been accused of being self-righteous before, so the charge must, at least in part, be true. In my own defense, I’d say that I’ve tried to put my life where my mouth is. How not to be riled up by the state of things? Every day I see with my son and the autistics I work with the need for a much more hospitable and affirming world.

Autistic Readers: A Reply to Mark Osteen

Opponents of neurodiversity are a bit like your leg in the doctor’s office. When the reflex hammer—call it disability-as-difference—hits the patellar tendon, it triggers a contraction of the quadriceps femoris—call it outrage—and the leg kicks. The entire process bypasses the brain. These kicks or jerks invariably take three forms: 1) an aversion to, and discounting of, autistic ability narratives; 2) a peculiar, and motivated, insistence on diversity in autism; and 3) a refusal to conceive of neurological difference as a personal and political identity in all cases. Driven by the so-called travesty of “severe” autism, neurodiversity opponents want us to see how the other half lives. Yet imagine not really being interested in amelioration—either as a matter of changing how we think about cognitive disability or as a matter of teaching skills such as literacy and communication.[i] Imagine wanting only to cry, “The horror! The horror!”

Sure enough, Osteen kicks at my book in all three ways. First, he criticizes the focus on readerly competence in autism. This focus, no matter how startling its results—for example, contrary to what experts have been arguing for years, at least some autistics, across the spectrum, can handle rich and complex metaphors—comes at the expense of autistics like his son. As soon as I try to disabuse readers of negative stereotypes, I have left the son behind and diminished the father’s capacity to cry, “Horror!” This belief leads Osteen to question the diversity of my subjects and their right as a group to represent autism:

. . . one is forced to point out that Savarese’s neurodiverse readers are not that diverse. Although they vary in abilities and difficulties, all can read and write, interpret texts, and analyze their own responses, which in itself places them among the more fortunate of autists. Given his project’s aims, this slant is unavoidable, but it does render his generalizations about autism less than entirely persuasive.

Who is “forced” and why? To be clear, my book’s subjects include a nonspeaking young man who began his life in foster care and who later graduated from college (my son); a minimally speaking Indian immigrant who was never allowed in a regular classroom and yet who has authored fiction, nonfiction, and poetry; the son of a prison guard who learned to speak at age thirteen through typing and whose “restricted interest” (I use the term ironically) is Native American history and culture; a “gender-vague” (Brown) woman in her late forties who uses her synesthesia to code and who has published a sci-fi novel; a Deaf, black, Asian, Native American, Jewish dancer and mother of an autistic child; and an avowedly celibate, world-famous, 70-year-old professor of animal science who is alexithymic.

Dismissing every form of diversity but one, Osteen, who is white and male, divides autistic people into two groups, the “fortunate” and “unfortunate,” like some sort of disability Calvinist upholding the doctrine of predestination. Reprobates can do nothing to save themselves from total depravity—nor can others save them. The elect owe their success to irresistible grace. (How dare they boast or let anyone boast about them?) The system is fixed in advance and utterly static. The problem of stigma, the long history of misjudging the capabilities of autistic people, the disability rights movement—none of it matters. The experts never err, and politics are about as useful as a fire extinguisher in hell.

Although Osteen appears to intervene on behalf of the reprobate, it’s an intervention that produces, I believe, their abjection. In the chapter of his memoir called “Urinetown,” we encounter the requisite scenes of toileting disgust, which paint the son as not only unteachable but grotesquely burdensome—beyond, as it were, the potty pale:

He delighted in urinating on the floor, on the living room chairs or sofa—anywhere but in the toilet. When he was four we’d bought a large plastic climber for his room. He didn’t explore its many nooks and crannies; his favorite activity was to find a secure perch and urinate down onto the rug: our own little gargoyle fountain. Of course, we cleaned up each time, but eventually the smell became so powerful that we had to disregard the rug. Doing so uncovered a large patch of permanently discolored floorboards. (128)

When did you last encounter a demand for diversity that demonized the Other? That was tied to practices of exclusion and institutionalization? Osteen couldn’t be more fatalistic about this group of autistics, and he couldn’t believe less in collective struggle. “Politics can’t change this,” he implies in his review.

It’s as if the subjects of See It Feelingly hadn’t had to fight for a chance to develop like their nonautistic peers, hadn’t had to overcome the social presumption of incompetence. It’s as if their achievements were somehow automatic and inevitable—to be discovered like gold in a stream, not created like pottery in a studio. It’s as if these achievements didn’t reflect the hard-won progress of the difference model of autism. (In this model, the reprobate cast off their label and elect themselves.) At the same time, it’s as if stigma didn’t still cloud the way we perceive cognitive disability, didn’t still affect our judgments about its potential and our capacity to envision more livable futures for everyone. It’s as if our assessment practices no longer tracked autistics into hopelessness; as if this hopelessness weren’t compounded—and rendered more probable—by poverty and racism.

Change, as I’ve said, is afoot. Even the science of autism is beginning to slough off its normative habits and presumptions. Findings from the last 15 years undercut Osteen’s cocksure distinction between “fortunate” and “unfortunate” autistics. A 2006 study revealed, for instance, how flimsy and unsupported have been the claims of mental retardation in autism (Goldberg). Of the 215 articles from 1937-2003 that the author 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 25 to 45 years before and often from testing vehicles that are now acknowledged to be problematic.

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 considerably—by 28%. As significant, scores for the autistic sample were on average 30% higher—in some instances, 70% higher. A more hospitable test yielded a staggeringly new picture. With remarkable restraint, the authors write, “We conclude that intelligence has been underestimated in autistics” (657). (As I say elsewhere, “Can it be a coincidence that the disability rights adage literally realized by Mottron’s team — ‘Nothing About Us Without Us’ — produced such different results? That autism could facilitate better science about itself, and not just an alternative view, speaks to the importance of neurodiversity” (“The Superior Part of Speaking”).)

Another study, from 2016, focused specifically on the intelligence of school-aged autistic children with minimal-to-no speech (Courchesne). As the authors make clear, such children are “at risk of being judged ‘low-functioning’ or ‘untestable’ via conventional cognitive testing practices.” Here, too, the testing vehicle mattered—and not just because it yielded more reliable results but because it allowed the study’s subjects to complete the test! When given the Weschler Intelligence Scale for Children (WISC), zero out of 27 finished it, but when given a version of the Ravens test in puzzle-board form, which eliminated the need to point, 26 out of 27 did, with 17 of the subjects scoring between the fifth and ninetieth percentile. Controlling, in this case, for atypical processing and significant motor impairments proved decisive. Notice how the authors frame their conclusion—as challenging us to be ever more vigilant about accommodation:

Our results suggest that some school-aged autistic children are at risk of being underestimated as to their cognitive potential, and that a relatively simple strength-informed assessment, compatible with low-resource settings, is a neglected approach worth pursuing. However, there is clearly room for improvement. For example, autistic children who did not perform well on or did not complete our assessment may in fact have very limited abilities, but in the alternative, their results may reflect shortcomings in our pilot effort.

To me everything is up for grabs with autism. It’s all in flux. As we approach the third decade of the twenty-first century, we’ve only begun to understand what autistic people can do, only begun to adequately support them. We’ve been wrong so many times before that maybe we shouldn’t make any negative judgments at all. Maybe we should proceed with humility. Maybe, in the words of Anne Donnellan, we should practice “the least dangerous assumption,” as the authors do above.

Or the least dangerous generalization. Osteen criticized my book because it generalizes. Because it speaks, he says, for autism as a whole. My generalizations, however, point to the possible, thereby correcting for the past, including the habit of generalizing negatively about the condition. Yet what if autism is so heterogeneous as to be unable to support generalizations? What if, beyond the “fortunate” and “unfortunate,” it’s sufficiently varied at every point on the spectrum that we can no longer talk of a “spectrum” or even of “autism”? A recent study found that compared to nonautistic brains whose functional connectivity was roughly uniform, autistic brains were wildly distinctive (Hahamy). They were as different from each other as they were from the norm. Might autism be a hundred conditions, related perhaps but unique? Can the word accommodate so much particularity? Does it fall apart? Become meaningless? To what end or ends should the notion of radical heterogeneity be put?

We have arrived at the third and final kick. Just as Osteen mobilizes a peculiar notion of diversity to criticize my findings, so does he deploy the concept of radical heterogeneity to limit the relevance of neurodiversity as a form of identity politics. But they’re really the same objection, which I interpret to be this: You’re being too positive about autism and What about my woe? Osteen writes,

If autism is so radically heterogeneous, what does the diagnosis even mean? This heterogeneity collides with autistic advocates’ understandable and generally welcome desire to batten upon the diagnosis as a badge of distinction, to embrace rather than efface it. This conflict also plagues the neurodiversity movement. The need to cling to autism as a marker of identity, despite its radical heterogeneity, has resulted in reifying the condition such that certain self-appointed spokespersons presume to speak for all autists and reject any contribution from neurotypicals. This approach risks minimizing impairments, potentially withering supports for those most in need of them.

Here Osteen mounts the complaint of many a parent of a “severely” autistic child. He links the validity of the difference model to the severity of the condition, in effect proclaiming, “No one can celebrate pee and poo.” He also suggests, fallaciously in my view, that being positive about autism will diminish services. Finally, he resents being pushed to the sidelines by identity politics. His son can’t speak for himself, so he wants to speak in his place. But I wonder what Osteen would  say if he were allowed to speak? Alas, we already know. It doesn’t occur to him that autistics like his son might need the concept of neurodiversity and the political struggle it names more than those who are less impaired. How, after all, will we learn to make sufficient room for difference if some forms are conspicuously lamented, even demonized?

I’m all for worrying about autism’s radical heterogeneity, though not if the purpose is to label someone as too different to count. My book tries to show how uniquely autistic each of my readers is. If the word “autism” ends up falling away and more differentiated conditions emerge, so be it. Another word, an even bigger tent under which lives a history of contesting prejudice and exclusion, awaits: disability.

A final point, one more directly related to the discipline of English and literary study. Osteen disparages the insights of my autistic subjects, complaining that they reveal “more about autism than literature.” “[My] interviewees’ responses,” he contends, “rarely go beyond identifying with characters.” Yet identifying with characters, as anyone familiar with the literature on this subject knows, is news, big news, to autism experts. And identifying with nonhuman characters, as three of my subjects do, might very well be different from identifying with human ones. Scholarship in animal studies urges us to eschew the narrow focus on, and glorification of, homo sapiens. Scholarship in posthumanism urges us to account for technological enhancements and assemblages. Autistic readers, I argue, can teach us much about a more egalitarian diffusion of regard. For Osteen, such readers remain sadly unsophisticated: “Although their responses are sometimes illuminating,” he says, “they generally shed more light on the reader than the text.” Again and again, he reacts in a manner that I consider  to be less than generous and forward-thinking.

The field of English long ago fought a battle over the appropriate way of engaging with literature. The rise of reader-response theory in the 1970s not only demonstrated that a text has no meaning without the reader but it also made room for different kinds of readers. Just as significantly, it allowed literature to step outside of its customary academic setting, to bound like a dog in the field of everyday needs and pleasures. Think, for example, of New Yorker writer Rebecca Mead’s book, My Life in Middlemarch, which perfectly captures how a text and a life can become dynamically braided. Or think of the essays in Glory Edim’s recent collection, Well-Read Black Girl. In one called “Space to Move Around In,” Renée Watson writes of discovering, as a teenager, the poetry of Lucille Clifton—in particular, odes such as “homage to my hair” and “homage to my hips.” Watson “had never seen poems like these. Poems about being big and black and beautiful and woman” (70). “Lucille’s words,” she says, “were oxygen” (70). Moments of identification are never as simple as they seem; nor are they a stopping point. In this case, readerly cathexis led to an important question: “What does it mean to celebrate the parts of you that others demean, disregard, disapprove of” (71).

The question pertains to all manner of differences, including autism. Osteen holds my book’s subjects to an unreasonable standard. From my vantage point, he reduces what they have to say to fit his own drama of despair and self-exoneration. Begrudgingly acknowledging ability in some of my subjects, he reproduces the violence of the pathological model by insisting, like the experts of old, on autistic lack. Take, for example, his response to Tito Mukhopadhyay, who passionately identifies with the phantom cetelogical presence in Moby-Dick. While he praises Mukhopadhyay as an author, he denigrates what he has to say about Melville’s novel, calling it an “allegory of his own relationship with autism.”

Yet speech is a central motif in Moby-Dick. As a nonspeaking person, Mukhopadhyay relished Ishmael’s alternative understanding of the whale’s inability to speak: “Seldom have I known any profound being that had anything to say to this world, unless forced to stammer out something by way of getting a living” (332). Ahab, in contrast, rails against the creature’s silence. Approaching the severed head of a sperm whale, he issues a deeply sarcastic command: “Speak thou vast and venerable head . . . ; speak . . . and tell us the secret thing that is in thee” (282). Precisely because speech is considered the quintessential mark of the human, Mukhopadhyay has lamented his own inability to speak.

In a poem titled “Harpoons,” written as part of his weekly response to Moby-Dick, he mapped the slaughter of whales onto a typical scene with a “severely” autistic child, ghoulishly suggesting that violent death might be a form of speech therapy:

With Harpoons they queried—they lacked finesse.
He voiced no response except some noisy breaths,
Excavating sound from deep in his chest.

What pointed questions! They injured his head!
He breathed to explain how he talks with that head:
Great blubbery words that rise from his chest.

Is there a mind, they wondered, inside that head?
The sound of his answers? Those cumbersome breaths.
Let blood uproot what’s locked in his chest. (See It 52-53)

Reading Moby-Dick with Mukhopadhyay, I was invited, as never before, to consider the issue of animal intelligence and the speech-privilege that lies at the heart of human arrogance. To dismiss his complex identification and observations as being merely “about autism,” as telling us nothing about the text, is unconscionable. I now can’t imagine teaching Moby-Dick without the input of a nonspeaking person. Nor can I imagine using my role as professor to judge new readers from the margin.


[i] Aiding the development of skills or working to accommodate disability isn’t at all the same as holding intelligence to be the measure of human worth.

Works Cited

Brown, Lydia X. Z. “Gendervague: At the Intersection of Autistic and Trans Experiences.”

Asperger/Autism Network, June 22, 2016, https://www.aane.org/gendervague-intersection-autistic-trans-experiences/.

Courchesne, Valerie, Meilleur, Andree-Anne S., Poulin-Lord, Marie-Pier, Dawson, Michelle, and Soulières, Isabelle. “Autistic Children at Risk of Being Underestimated: School-based Pilot Study of a Strength-informed Assessment.” Molecular Autism 6, 12 (2015). https://www.researchgate.net/publication/273638351_Autistic_children_at_risk_of_being_underestimated_School-based_pilot_study_of_a_strength-informed_assessment.

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Hahamy, Avital, Behrmann, Marlene, and Malach, Rafael. “The Idiosyncratic Brain: Distortion of Spontaneous Connectivity Patterns in Autism Spectrum Disorder.” Nature Neuroscience 18 (2015, 302-309.

Koshino, Hideya, Patricia A. Carpenter, Nancy J. Minshew, Vladimir L. Cherkassy, Timothy A. Keller, & Marcel Adam Just. “Functional Connectivity in an fMRI Working Memory Task in High-Functioning Autism.” NeuroImage 2.4, no. 3 (2005).

Mead, Rebecca. My Life in Middlemarch. New York: Crown, 2014.

Melville, Herman. Moby-Dick: A Longman Critical Edition. Edited by John Bryant and Haskell Springer. New York: Longman, 2006.

Osteen, Mark. One of Us: A Family’s Life with Autism. Columbia: University of Missouri Press, 2010.

Savarese, David James. A Doorknob for the Eye. Minneapolis: Unrestricted Press, 2017.

Savarese, Ralph James. Reasonable People: A Memoir of Autism and Adoption. New York: Other Press, 2007.

—. See It Feelingly: Classic Novels, Autistic Readers, and the Schooling of a No-Good English Professor. Durham: Duke University Press, 2018.

Savarese, Ralph James, and Emily Thornton Savarese. “The Superior Half of Speaking: An Introduction.” Disability Studies Quarterly 30, 1 (2010). http://dsq-sds.org/article/view/1062/1230.

Watson, Renee. “Space to Move Around In.” Well-Read Black Girl. Glory Edim, ed. New York: Ballantine Books, 2018, 65-74.

Yergeau, Melanie. Authoring Autism: On Rhetoric and Neurological Queerness. Durham: Duke University Press, 2018.


Ralph James Savarese

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