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Disability Studies and the Personal; Or How You Can Learn to Stop Worrying and Love Neurodiversity32 min read

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:

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


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
at the bottom
of the

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
No matter: the helmet, too,
can be dec­o­ra­tion;
and the center for people with dis­abil­i­ties,
per­for­mance art.
I, too, lived in an insti­tu­tion,
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 Montréal — 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.

Dawson, Michelle, Soulières, Isabelle, Gernsbacher, Morton Ann, Mottron, Laurent. “The Level and Nature of Autistic Intelligence.” Psychological Science 18, 8 (2007), 657–662.

Donnellan, Anne M. “The Criterion of the Least Dangerous Assumption.” Behavioral Disorders 9, 2 (1984), 141–150.

Goldberg Edelson, Meredyth. “Are the Majority of Children with Autism Mentally Retarded? A Systematic Evaluation of the Data.” Focus on Autism and Other Developmental Disabilities 21, 2 (2006), 66–83.  http://citeseerx.ist.psu.edu/viewdoc/download?doi=

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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