According to G. Thomas Couser, “one of the most significant developments—if not the most significant development—in life writing in North America over the last three decades has been the upsurge in the publication of book-length accounts (from both first- and third-person points of view) of living with illness and disability” (603-04). In this paper I trace what I find to be one very welcome trajectory within one of the fastest-growing subsets of illness/disability narrative over the last three decades; I argue that, during this first decade of the 21st century one may observe a marked shift in how writers of book-length accounts (from both first- and third-person points of view) of living with autism spectrum disorders position themselves in relation to the recovery or emergence prototypes.
One may apply Rosemarie Garland-Thomson’s conclusion about a 1949 March of Dimes poster—that “the ideology of cure and the mandate for normalcy intertwine, crowding out any possible narrative of accommodating rather than eliminating disability” (525)—as an extremely apt pinpointing of the powerful pressure to “conform to, and thus confirm, a cultural script” (Couser 604) still often brought to bear on autism narratives. This script is the same one that Paul K. Longmore has identified as “the social meaning of disability” perpetuated by the late, great American cultural institution, the telethon—namely, that the “only hope” for disabled individuals “lay in medical cures or medical and vocational rehabilitation” (505). In other words, “They needed to be fixed . . .” (Longmore 505).
For Longmore, the first of “a clutch of questions” generated by telethon culture requires that one ask, “Is disability inherent defectiveness, socially constructed devaluation, or human variation and difference?” (507). To my mind, an examination of recent life writing on autism spectrum disorders reveals that these narratives are participating in the sort of paradigm shift Simi Linton has explained disability studies itself insists upon. According to Linton, “In traditional curriculum and existing courses aimed at intervention, . . . . Disabled people are to be acted on, shaped, and turned out as best as can be done to fit into the existing social structure” (518). What the disability studies perspective emphasizes is instead “the idea that what compromises the fit is the rigidity, faultiness, deficits, and pathological structures in [society]” (Linton 518).
If one is to move toward an understanding of disability as “human variation and difference” rather than “inherent defectiveness,” and thereby (hopefully) rise above “socially constructed devaluation” as well, then one may need to join Lennard J. Davis in embracing the idea that “the next wave of disability studies will have to struggle not only with the injustices in the world against people with disabilities but also with the foundational categories set up by the first wave of disability scholars and activists” (530). And, in fact, this is precisely what I see as occurring in contemporary nonfiction narratives of autism; they are in the process of rethinking the older emergence and recovery prototypes, which at bottom (owing to “the ideology of cure and the mandate for normalcy” they reinforce) implicitly support an understanding of disability as “defectiveness.”
In order to chart the trajectory of this process, one must begin (of course) with Temple Grandin and Margaret M. Scariano’s 1986 landmark autobiography Emergence: Labeled Autistic. According to Bernard Rimland in his Foreword, “this is the first book written by a recovered autistic individual” (3). Now I’d like to make perfectly clear that Grandin is one of my heroes, somebody whom I list as among my most admired people, so it is far from my intent to appear to lessen in any way the monumental achievement that is Emergence when I suggest that her narrative conforms to and thereby confirms the self-same recovery script that informs Rimland’s Foreword. In the Introduction, Grandin indicates that the story of her emergence out of the label of autism is, at least in part, meant to challenge the belief that “once autistic, always autistic” (8). Her claim, “I am living proof [that the characteristics of autism can be modified and controlled]” (9)—together with her further claim, “My life is normal” (9)—reinforces the idea that one may recover from autism. It also implicitly situates “a child, labeled autistic,” as belonging to a different world entirely than that of the nonautistic child, and it is the reality of the nonautistic child that definitively is privileged in this prototype; after all, it is “the real world” [my emphasis] into which “a child, labeled autistic,” aims to “emerge” (9).
For the Grandin of Emergence, then, recovery is the story. Even in Technical Appendix C, which was revised in May 1993, particularly in the section entitled Stereotyped Behavior and Fixations, this emphasis remains the same. For example, “Autistic children who have recovered,” we are told, “took their childhood fixations and directed them towards constructive goals” (177). In this section Grandin also relates the findings of the 1971 Kanner follow-up study in terms of failures or successful recoveries (178).
In the sentence ending the paragraph immediately preceding her accounting of Kanner’s follow-up study, Grandin writes, “The most successful recoveries had a dedicated friend who helped them direct their fixations” (177). As Emergence makes abundantly clear, one such dedicated friend in her own life was her old teacher, William Carlock. Interestingly, the figure of Carlock appears as the pivot upon which one may see Grandin’s narrative as potentially already inscribing an alternative script to the traditional recovery story it most fundamentally is. Carlock was her “salvation” not only because he “didn’t see any of the labels” but even more so because he “didn’t try to draw [her] into his world but came instead into [her] world” (82). Significantly, the establishing of a connection between an autistic individual and a nonautistic individual does not require the latter to emerge from her world into his real world; instead, it is the former who journeys into the world of his friend.
In any case, with 1995’s Thinking in Pictures, the emphasis on recovery (on emerging from the label of autism into the real, “normal” world) seems to have replaced by an emphasis on adaptation. For instance, Grandin writes, “I am often asked what the single breakthrough was that enabled me to adapt to autism. There was no single breakthrough. It was a series of incremental steps” (35). This apparent shift in her own understanding of her autism helps to explain why we find her acknowledging that, even if they both are right in some ways, her view of her life with autism (“If I could snap my fingers and be nonautistic, I would not. Autism is part of what I am” ) is radically distinct from that of Donna Williams (“Autism is not me. Autism is just an information processing problem that controls who I am” [qtd. in Grandin 61]).
This shift also is why Oliver Sacks’s Foreword to Thinking in Pictures takes such a dramatically divergent tack from that of Rimland’s Emergence piece. Not only does Sacks stress that, “if Temple is profoundly different from most of us, she is no less human for being so, but, rather, human in another way” (here is disability as human variation and difference instead of as inherent defectiveness), but he posits Grandin’s life writing as “deeply moving and fascinating” not for a story of recovery but for how “it provides a bridge between our world and hers” (16).
Dawn Prince-Hughes’s 2004 Songs of the Gorilla Nation powerfully extends this motif of the bridge as she very self-consciously redefines and thereby reappropriates the emergence prototype in the service of variation and difference (rather than recovered defectiveness). In a short section on Autism and Animal Behavior from Thinking in Pictures, Grandin notes “the effects of sensory deprivation” upon “zoo animals kept in barren concrete cages”—namely, that they “often develop abnormal behavior such as rocking, pacing, and weaving,” which she goes on to characterize as “strange, autistic-like behavior” (86). Her theorizing about how such experiences may lead to the “construction” of an “abnormal ‘dendrite highway’” that in turn “may explain why it is so difficult to rehabilitate zoo animals that have engaged in years of stereotypical pacing” serves as the rationale for her parallel insistence upon “why it is important to start therapy and education when an autistic child is young, so that developing nerve endings can connect in the right places” (87).
Prince-Hughes also finds compelling the potential applications of building an analogy between the experience of zoo animals and that of autistic individuals for theorizing the liminal qualities of life with an autism spectrum disorder. Prince-Hughes claims, “I feel like a bridge between my ancestors and the next generation, between autistic people and the ‘normal’ world, between apes and humans, between what is possible to change and what is not” (222). Her quite serious contention that “apes fulfill all of the criteria that currently define personhood” (which include “self-awareness,” “a capacity for empathy,” and “the ability to think abstractly”) surely tacitly yet forcefully insists upon the full personhood of autistic individuals.
Prince-Hughes opens her Introduction by asserting, “This is a book about autism” (1). She then continues on to claim, “But just as much, it is a story about how I emerged from the darkness of it into the beauty of it” (1). Significantly, her version of emergence is an emergence within, not out of, autism. Prince-Hughes is fully aware of the historical baggage of this word choice, for she explicitly clarifies her own usage of the term in a crucial passage worth quoting in full:
When I speak of emerging from the darkness of autism, I do not mean that I offer a success story neatly wrapped and finished with a “cure.” I and the others who are autistic do not want to be cured. What I mean when I say “emergence” is that my soul was lifted from the context of my earlier autism and became autistic in another context, one filled with wonder and discovery and full of the feelings that so poetically inform each human life. (2-3)
In Prince-Hughes, then, we have the emergence prototype so completely transformed and translated into another context that it actually now serves to thoroughly oppose and reject the fundamental ideology and mandate of its earlier incarnation.
.It is precisely this new understanding of autism (as difference, not defectiveness) that enables Prince-Hughes to insist upon the official criteria provided by the DSM-IV as “descriptions of coping behaviors and not descriptions, necessarily, of innate orientation” (175). It is precisely this new understanding that leads her to conclude her life writing by insisting that “autism is a way of sensing the world—the whole world—of creating and knowing” (224) and that “like all human beings and other persons, [autistic people] are not only part of things but whole already” (224).
This more healthy, less pathological understanding of autism is an increasingly popular one as the decade progresses, and one may (for example) find it in the hot-off-the-presses first-person book-length life writing by John Elder Robison, Look Me in the Eye. Thus, near the end of his Prologue, Robison asserts, “Asperger’s is not a disease. It’s a way of being. There is no cure, nor is there a need for one. . . . . I am proud to be an Aspergian” (5). Like Prince-Hughes, Robison is not diagnosed with an autism-spectrum disorder until adulthood, and when it finally comes, he experiences it not as a imprisoning label but as a “revelation (237), as a “tremendous relief” (238). It not only helps him to realize, “I was normal, for what I am” (238), but further to conclude, “So I’m not defective. In fact, in recent years I have started to see that we Aspergians are better than normal! And now it seems as though scientists agree: Recent articles suggest that a touch of Asperger’s is an essential part of much creative genius” (240).
At the same time, while Robison observes that “Asperger’s syndrome isn’t all bad,” he also warns his readers not to “be misled’ by this, for “growing up [as an Aspergian kid] can be rough” (4). Without his diagnosis, he reports, “I came to believe what people said about me, because so many said the same thing, and the realization that I was defective hurt” (4). Prince-Hughes similarly feels it is important to stress that “hard memories, unfortunately, are the ones that seem pertinent” in her “journey [as] an autistic person from birth to adulthood” (179). Indeed, she continues, “I have heard other autistic adults say that, despite islands of happiness in their childhood, isolation, confusion, and depression underlay even the best memories; it wasn’t until adulthood that they realized there were many good things about their uniqueness” (179-80). More often than not, it is the diagnosis that seems to open up rather than delimit their full potential.
Fascinatingly, when one turns to third-person accounts of life with autism, one may plot a similar trajectory. If one begins with Clara Claiborne Park’s landmark 1967 The Siege and her relatively recent 2001 follow-up, Exiting Nirvana, one may posit (as with Grandin’s sequence of life writings) that the initial story is embedded to a large extent in the then-predominant cultural script of defectiveness but that in the second one may detect at least some movement toward an emphasis on variation and difference.
The Siege was, as the ubiquitous Sacks claims in his Foreword to Exiting Nirvana, “the first ‘inside’ (as opposed to clinical) account of an autistic child’s development and life; and it was written with an intelligence, a clear-sightedness, an insight, and a love that brought out to the full the absolute strangeness, the ‘otherness,’ of the autistic mind. It also brought out how much an empathetic understanding could help to lay siege to autism’s seemingly impregnable isolation” (ix). Certainly one need recall, where The Siege is concerned, that Park is facing a much more severe form of autism than any of the others found in the rest of the life writings I am discussing in this paper. It is also worth registering that this narrative’s account is of the first eight years of Jessy’s life; in other words, at a time when, for many, parental protectiveness might be expected to be at its height.
Nevertheless, for all of The Siege and nearly all of Exiting Nirvana, we are solidly within similar scripts of disability as defectiveness. In these particular scripts, Park has quite consciously written out the ideology of the cure: “[The story of the family’s 40-year journey through Jessy’s autism] has not been about a miraculous recovery, though selective narration could give that illusion” (10). She does not subject the mandate for normalcy, understandably, to a similar sort of interrogation, however. Consequently, in Park’s stories, we again are confronted by two distinct worlds—the exclusively antagonistic world of disability out of which it is hoped the autistic individual will exit and the real world of ability into which it is hoped the autistic individual will emerge.
For Park, the world of autism represents the world of Nirvana, a “walled city” (10), a realm of “serene equilibrium” (7), “detachment” (7), and ultimately “desolation” (8). She admits that this world was not an unhappy place for Jessy: “this child was happy. Is it not happiness to want nothing but what you have?” (7). This is not the point, however, according to Park, for the story is not about happiness any more than it is about recovery. The story “has been about growth, and there is no growth in Nirvana,” so the family “could not leave Jessy to her empty serenity,” but would instead “entice, intrude, enter where we were not wanted or needed, “ until finally they “did get into the walled city” and “the siege metaphor became transmuted into a more ordinary one. Siege into journey” (10).
Exiting Nirvana is, thus, to Park, the story of Jessy’s “progress toward our world” (25). Again, Park readily admits that this is “a story that can have no real conclusion” (197), for “Autism is a lifetime condition” (199). Yet there has been progress—from “initial bewilderment” to “the slow growth of at least partial understanding” (24)—for “Jessy’s journey has led her out of that world—I have called it Nirvana—into the uncertain world of human beings” (24). For Park, then, Jessy “emerged,” however “qualified was that emergence,” from a “bewilderment” characterized by the absence of “human meaning” (29).
Certainly one would not have had Park, “as was often recommended in those days, institutionalize her ‘for the sake of the other children,’ to spend her days somewhere in a back ward, rocking” (10). Yet, at the same time, a writer such as Prince-Hughes clearly must be profoundly uncomfortable with Park’s exclusive attribution of the category human to the nonautistic. What this suggests to me is that this narrative, subtitled A Daughter’s Life with Autism, reveals as much about A Mother’s Life with Autism as it does A Daughter’s. Park is quite clear that “the vocabulary of handicap doesn’t work for Jessy. She doesn’t ‘suffer from’ autism. She doesn’t think of herself as handicapped. ‘Afflicted’ is a word she doesn’t know” (188). Obviously, however, from A Mother’s perspective Jessy does in fact “suffer from” autism; that is why she needs to be cajoled out of Nirvana, even though “she shows no sign of wanting to be anything but what she is” (185). Anything but what she is, not anyone but who she is—again, the world of autism is represented as a world characterized by the absence of the human. Again, this is not to blame Park, or to insist that Jessy should have been left alone in Nirvana. It is, nonetheless, to question whether the world of wordlessness, whether the Nirvana of the nonverbal, should be reducible to an existence that is somehow less human, or even nonhuman, rather than merely an instance of decidedly human variation and difference, regardless of how frustrating it is to accept and to live with as a parent understandably heartbroken over the difficulties of basic communication and interaction.
Thankfully, by the end of the narrative there seems to be some sort of provisional gesture toward an acknowledgment that Nirvana is not all bad. Park eventually admits, “we realize that as we no longer even dream of a triumphant emergence into normality, we no longer even want her to exit Nirvana all the way. In a development we could never have envisaged, it looks as if she, and we, can have it both ways” (201). She continues, “Through art she can keep in touch with the underground springs of her emotional life without threatening her life in the everyday—that emotional life that is so much more thrilling than our own. It’s a life she has no words for, but it’s part of—perhaps it’s at the bottom of—her oddly resistant happiness. Even if we could, we wouldn’t deny her that” (201).
Barbara LaSalle is another mother who suffers immensely from despair over her seeming inability to connect with her son Ben’s private Nirvana. Significantly, her autistic child (although she will not have a diagnosis for Ben until his 20s) is extremely verbal, very high functioning in many ways—and, yet, she still feels as if they cannot connect: “My son with the astonishing memory, my son with the gigantic brain, the boy I’d expected to know by my own heart’s beating, without benefit of a single word. But the boy spoke a thicket of words and I couldn’t find the path. I couldn’t find the boy” (5).
In her Preface to Finding Ben (2003), LaSalle explains, “this book is really about me, my journey, my discovery” (xi), but her son (in a second prefatory document, entitled “In Ben’s Words”) makes it clear from the outset that he views it as “[his] own life story told from the point of view of [his] mother” (xiii). They both, therefore, end up acknowledging before the first chapter, that it in fact belongs to both of them (“What is written here is my mother’s story. But it is also mine” [xiv]; “This is our story” ).
Finding Ben is in many respects an incredibly heart-wrenching narrative. Unlike Jessy, Ben shows plenty of signs of wanting to be something other than what he is. His words serve as epigraphs to each of LaSalle’s chapters, and as he reveals at the beginning of the chapter entitled “Mommy, What’s Wrong with Me?” (the chapter that includes the painful anecdote about three-year-old Ben and the MBD: The Family Book About Minimal Brain Dysfunction), “I don’t remember a time in my life when I didn’t think something was wrong with me” (33). As a result, Ben made a very conscious decision to withdraw from the world: “No matter how hard I tried, I couldn’t be like other people. So I retreated into my own world of imagination. It was safe there” (77), and, “My real life was never as good as what I could make up. Even as a little kid, I knew the life I wanted to live and the person I wanted to be would never happen” (85).
When Ben finally gets his diagnosis, LaSalle starts apologizing to him (“for not knowing sooner,” “for blaming you,” etc.), but he quickly tells her, “Don’t be sorry, Mom.” “This is the happiest day of my life” (because “I just found out it’s not my fault”) (221). In a short contribution near the end of the book that his mom asked him to add to her narrative, Ben confesses, “The biggest thing I have to admit to myself is that I am not, nor will I ever be, like other people. No matter how hard I try, I will always have Asperger’s Syndrome. But the miracle is that I am finally OK with that” (249). That is because, as he relates just a few paragraphs earlier, “because AS is a developmental disability and it cannot be cured with medication. It never goes away.” Thus, “The only thing I can do is accept my AS and try to deal with it head on” (248).
LaSalle, however, finds herself still trying to change her son, even the diagnosis. “Ben was the same—with or without a label,” she reports. “And what about me? Was I any different now? Had Ben’s diagnosis changed me?” (244). She needs a friend, Jack, to remind her of Mr. Carlock’s lesson: “Remember you are the one who is changing. Don’t ask Ben to change” (262). In the last chapter, she finds Ben. She realizes she needs to stop trying to fix him and accept him for who he is, to enter his world on his terms: “I didn’t have him, because I couldn’t see past his outness—his monotone voice, his layers of fat, his wheezing, his lack of friends. I couldn’t see past them, these traits that made him different—past them, to the person he was underneath. I couldn’t see Ben. I couldn’t find him through the lens I was looking through” (264).
Paul Collins’s 2004 Not Even Wrong is an important third-person contribution to autism life writing because in it one encounters the parent of a small child already moving beyond an understanding of autism as defectiveness to an appreciation/acknowledgment of it as human variation and difference. As Collins and his wife watch their son Morgan immediately seem at home on the first day of “autism class,” he pulls out the following simile: “It is as if we have brought a seal to the ocean and watched him shuffle awkwardly off the land to glide effortlessly through the waves, finally within the world he was made for all along” (224).
Collins confesses, “When Morgan’s diagnosis first came in, all I could think of was: How do I fix him? How do I make him normal again?” (224). Yet, as he goes on to realize, “But there was no again, not really, because there never was a before. He has always been this way: it is who he is” (224). Collins does admit he still “wanted [Morgan] to be able to fit in, to not have to feel that he was different” (224), but he also acknowledges that he simply cannot know where all of it will lead because “Autists are self-made people: they won’t particularly be whatever you are trying to make them into” (225). He continues,
Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you are destroying the peg. What if normal school makes you abnormally miserable? And what if growing up into normal society makes you a miserable adult? Is that success? Is that normal? Do you want to be in the mainstream if it’s going to drown you? (225)
Collins ends the book with one of those all-too-familiar (in both senses of the word) while shopping in a store. He realizes that he and his wife are “getting used to the stares” and that Morgan himself “couldn’t care less,” so he decides, “If we don’t make sense to them, that’s fine, because we all make sense to each other. And anyway, it’s not what they think. It’s not a tragedy, it’s not a sad story, it’s not the movie of the week. It’s my family” (229).
This is where I originally had planned to end my paper, with a tidy sort of parallelism to the trajectories I had traced in both the first-person and the third-person accounts of autism. Unfortunately, on September 17th I received an email from an uncle, giving me a heads-up that Oprah was going to be doing a show the next on autism with Jenny McCarthy and Holly Peete Robinson. As I watched the show it quickly became apparent to me that McCarthy seemed to be presenting her story from her even hotter-off-the-presses third-person autism narrative as precisely what Collins felt his family’s story decidedly was not: the movie of the week. So, I immediately secured a copy of Louder than Words: A Mother’s Journey in Healing Autism, which would spend all of October in the Top Ten of the New York Times Best Seller list for nonfiction (making it as high as #3 on the 10-14 list).
My hasty reading of her story unfortunately only confirmed my worst fears from the Oprah taping. Now, some important qualifying of my reading of Louder than Words is in order here, lest I appear too dismissive and/or unsympathetic. McCarthy, like most parents of autistic children, has been through her share of hell, in particular the terrifying seizures that her son, Evan, suffered, as well as the fear and uncertainty the aftermath of these seizures and Evan’s fevers forced her to deal with almost 24-7. She also has in relatively short time brought an incredible amount of attention to bear on autism in the popular media, appearing on Larry King Live in addition to Oprah and gracing the cover of People magazine. Certainly there is a part of me that feels that if a celebrity-induced media blitz raises awareness and fosters more information-gathering, then I am all for it, even if I am a bit troubled by some of the messages any one individual might be trying to get across.
Certainly there are elements of the book that rub me the wrong way as well. As an academic, I will admit to being a little skeptical of the University of Google, even though we all use it to/for some degree. As a father, I will admit to feeling left out on all but one or two pages as McCarthy clearly has conceived of and designed this book as the next installment of her Mommy best-sellers Belly Laughs, Baby Laughs, and Life Laughs. (At least the book wasn’t called Autism Laughs!) As a life-long member of the middle class, I will admit to having a hard time sympathizing with McCarthy’s needing to leave her son for a night or two to fly to Las Vegas (especially when she’s on her private jet) for shootings of Party at the Palms because autism is really expensive and she is paying around $4000 a week for all of her son’s needs, including the nanny.
It is her narrative’s fundamental recourse to the ideology of cure and its intertwined mandate for normalcy, however, that most distresses me. That McCarthy indeed is endorsing such a script for her Mother’s Journey in Healing Autism, if not already apparent in her very subtitle itself, is immediately confirmed with the book’s Introduction by Jerry J. Kartzinel. Kartzinel’s own “journey of interventions” where his son was concerned had as its express goal to “allow [his] son to leave his autistic world and rejoin ours,” for the “bottom line in [his] home was the recovery of [his] child” (xv). He believes that autism “steals the soul from a child” (xvi), but that it “is not a dead-end diagnosis. It is the beginning of a journey into faith, hope, love, and recovery” (xvii).
McCarthy almost exactly replicates Kartzinel’s sketch outline for such journeys. Already by page six, even before diagnosis, she has noted the loss of [her son’s] soul in his eyes.” When the diagnosis finally comes, McCarthy experiences the same range of emotions that many parents do: “I looked at Evan and saw him flapping, and once again had my heart shattered. I had always looked at it like an adorable Evan characteristic that was so cute and unique. I felt almost betrayed, as if I didn’t know this child standing in front of me. Everything I had thought was cute was a sign of autism. I felt tricked” (66). When the doctor tells her, “He is still the same boy you came in here with,” her response is, “No, in my eyes he wasn’t. This was not Evan. Evan was locked inside this label, and I didn’t know if I would ever get to know who he really was. . . . Where was my son, and how the hell did I get him out?” (66).
McCarthy tells her readers at the very end of her narrative, “I hope you realize that this is not a book about autism. It’s a book about faith. It’s the story of a mother who believed anything was possible and never stopped looking for answers” (191). I would in fact agree that this book is much more about a Mother’s Journey than it is about autism. It is about how McCarthy decidedly is not one of those “’woe is me’ moms’ who “enjoyed the victim role” and who therefore “comlain and play the ‘don’t you feel sorry for me?’ game,” but instead one of the “’I’ll try anything if it will help my kid recover’ moms” (138). She insists, “It was my dedication to asking questions and researching . . . that led us down the road to recovery” (177).
It is this same dedication that fuels her disappointment with the first few autism books she reads. She recalls, “I was really hoping to find one that said, ‘I cured autism,’ but I didn’t. I remember thinking, ‘Well, maybe that’s the one I’m supposed to write someday’” (77). This, she realizes, is her “Higher Calling” (85). “I always knew,” she asserts, “Evan was in some way going to change the world. I had a very strong feeling about this one. I just didn’t realize that it would be through me. It’s funny how God works. Now I know why I became a writer in the first place. It was never to be the funny girl who wrote books on pregnancy and child-rearing. No” (85). “Now I realized,” she continues, “God had me write those books simply as a warm-up. To get moms’ attention. This is the book I hope will shift the world. This is the book I was born to write” (85). A few pages later, she elaborates, “Instead of getting mad at God, like I’m sure a lot of people do, I decided to make Him my buddy in this. I remember saying to Him around this time, ‘God, I know you gave me an autistic son for a reason’” (90). Well, “When you make God your buddy, He answers fast” (90).
Now if this book was just “the story of a mother who believed anything was possible,” it would be easier for me to stomach it. But, the fact of the matter is that, despite her claim to the contrary, this is also very much a book about autism. To be true, McCarthy does occasionally acknowledge either “the wide range of differences in autistic children” that entails “some children weren’t responding as well as their parents had hoped” even though “they were also doing the diet and supplements” (147) or that Evan might not ever “grow out” of his autism (“If he grows out of it someday, great”), in which case he will still be “perfect” and he simply will go to the local mall “after the prom with his girlfriend and they [will] ride the escalators till the sun comes up” (155).
Ultimately, however, (even though she shortly thereafter admits that Evan still flaps and likes to watch ceiling fans ) the end result of McCarthy’s dedication (again, as her subtitle would suggest) is to leave her readers with the impression that she has in fact healed her son’s autism. When an official from the State of California comes to (re)assess and (re)evaluate Evan’s progress so far, she is shocked at what she finds and she expresses her bewilderment to McCarthy’s readers in the following bombshell: “This isn’t autism anymore. I don’t understand what happened. We have never seen a recovery like this. What happened?” (186). McCarthy then explains to the state worker, “I found the reason for autism, which led me to the solution” (186).
In light of the reports on autism issued by the American Academy of Pediatrics just days prior to this particular morning when I am sitting here finishing this paper (reports which stress that there is no cure for autism), my concern is that what I see as a strong and welcome trend (excepting McCarthy) within life writing’s book-length accounts (from both first- and third-person points of view) of living with autism spectrum disorders toward an acknowledgement of, even an insistence upon, an understanding of disability as human variation and difference rather than as inherent defectiveness (and the concomitant emphases on cure and normalcy) may be overshadowed, even eventually countered, by the recent media blitzes appeal to more traditional paradigms of disability in which it is the disabled individual rather than society itself that must be fitted to the other. How’s that for a penultimate sentence?
Collins, Paul. Not Even Wrong: Adventures in Autism. New York: Bloomsbury, 2004.
Couser, G. Thomas. “Disability, Life Narrative, and Representation.” PMLA 120.2 (March
Davis, Lennard J. “Disability: The Next Wave or Twilight of the Gods.” PMLA 120.2 (March
Garland-Thomson, Rosemarie. “Disability and Representation.” PMLA 120.2 (March 2005):
Grandin, Temple. Thinking in Pictures and Other Reports from My Life with Autism.
New York: Vintage, 2005.
Grandin, Temple, and Margaret M. Scariano. Emergence: Labeled Autistic. New York:
Kartzinel, Jerry J. Introduction. McCarthy xv-xvii.
LaSalle, Barbara. Finding Ben: A Mother’s Journey through the Maze of Asperger’s. Chicago:
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---. Foreword. Park xi-xiv.