foss emerging from emergence part 2

Emerging from Emergence:

Tracing Representations of Autism Spectrum Disorders Across Forty Years of Contemporary Film and Life Writing

Part Two: Life Writing

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 the second part of my talk, I will trace what I find to be a very welcome trajectory within one of the fastest-growing subsets of illness/disability narrative over the last three decades— book-length accounts of living with autism spectrum disorders.


My thesis is that, during this first decade of the 21st century, one may observe a marked shift in how many of these writers position themselves in relation to what usually had been the typical pattern for such stories.


According to the earlier pattern, the narrative moves inevitably toward the autistic individual’s recovery, or at least emergence, from his/her disability.


More recently, an increasing number of writers (from both first- and third-person points of view) have been rethinking the merits of such an approach, often opting instead to insist upon their autism spectrum diagnoses as a fundamental aspect of their self-concept rather than as a hindrance to a more normal life and full self-realization.

Part Two: Life Writing 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)—usefully pinpoints the powerful pressure to “conform to, and thus confirm, [the] cultural script” (Couser 604) traditionally brought to bear on autism narratives—namely, the recovery story.


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).


Applying this question to life writing on autism contextualizes the shift I attempt to map out in this second part of my talk by situating it within the ongoing clash between the still-dominant cultural construction of disability as defect/disease and the increasingly recognized alternative construction of it as difference/identity.


If my examination of recent life writing on autism spectrum disorders suggests many of these narratives are participating in a shift away from the first of Longmore’s options (disability as defectiveness) and toward the third (disability as human variation and difference), this trend then testifies to the impact of the disability rights movement in general and the neurodiversity movement within the autistic community more particularly in advocating for a social rather than a medical understanding of disability.


One of the primary emphases of disability studies consistently has been an insistence upon the social construction of disability. If one grants this fundamental premise, then one must acknowledge that both of the above competing scripts (defectiveness and difference) reflect the presence of divergent social attitudes about normality. The question consequently becomes to what extent one may see them as valuing or devaluing disability.


In my opinion, the older emergence and recovery stories, however well-intentioned, at bottom implicitly support an understanding of disability as devalued defectiveness (owing to “the ideology of cure and the mandate for normalcy” they reinforce). Thus, my reading privileges those contemporary nonfiction narratives of autism which instead allow one to accept, even value, “disability” as human variation and difference.


First-Person Autism Narratives

Third-Person Autism Narratives

First-Person Autism Narratives

Temple Grandin and Margaret M. Scariano’s Emergence: Labeled Autistic (1986)

Grandin’s Thinking in Pictures and Other Reports from My Life with Autism (1995)

Dawn Prince-Hughes’s Songs of the Gorilla Nation: My Journey through Autism (2004)

John Elder Robison’s Look Me in the Eye: My Life with Asperger’s (2007)

Third-Person Autism Narratives

Clara Claiborne Park’s The Siege: The First Eight Years of an Autistic Child (1967)

Park’s Exiting Nirvana: A Daughter’s Life with Autism (2001)

Barbara LaSalle’s Finding Ben: A Mother’s Journey through the Maze of Asperger’s (2003)

Paul Collins’s Not Even Wrong: Adventures in Autism (2004)

Jenny McCarthy’s Louder than Words: A Mother’s Journey in Healing Autism (2007)


I wanted to draw upon both first- and third-person accounts of the lived experience of autism in order to demonstrate that one may encounter the new model not only in works by autistics themselves but also in those by parents of autistics, which is especially significant in confirming a paradigm shift since in general many parents still tend to gravitate much more toward an emphasis upon cure/recovery (as opposed to an insistence upon neurodiversity).


In both sections, I begin with an earlier foundational text that served to help establish the genre and then move to a discussion of a more contemporary narrative by both of those authors in order to explore the extent to which their original discourse about autism has been altered to at least begin accepting it as human variation and difference.


Where the first-person accounts are concerned, I begin with Temple Grandin and Margaret M. Scariano’s landmark 1986 autobiography, Emergence. Grandin is arguably the most famous autistic in all of America, and thus I see the shift in positioning relative to the two competing trajectories one finds in her 1995 Thinking in Pictures as a watershed moment in the newer orientation’s growing momentum.


Park’s 1967 The Siege is the pioneering book for third-person accounts, and so again I deem the presence of the new discourse in her 2001 follow-up, Exiting Nirvana, as particularly noteworthy.


Because of time constraints, I am dispensing with any notion of trying to cover any other texts from the 70s through the 90s, which might have offered a nuanced delineation of how these foundational writers arrived at their new understandings. Instead, my thesis is limited to how a pattern has developed in this first decade of the 21st century.


Accordingly, in both sections I continue on by concentrating on accounts published within the last six years. In each case I have consciously chosen to select one female writer (Prince-Hughes and LaSalle) and one male writer (Robison and Collins) to help suggest the full scope of the paradigm shift.


Finally, I will end by taking up one of the best-selling autism narratives of all-time, McCarthy’s Louder than Words, in order both to acknowledge the persistence of the recovery story model and to offer a critique of this book’s highly-touted success in raising awareness about autism with the general public.

Grandin and Scariano’s Emergence

According to Bernard Rimland in his Foreword to Grandin and Scariano’s Emergence, “this is the first book written by a recovered autistic individual” (3).


Grandin is one of my heroes, someone whom I list as among my most admired individuals, so it is far from my intent to appear to lessen in any way the monumental achievement that is Emergence when I suggest that its narrative ultimately conforms to and thereby confirms the 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 notion of “once autistic, always autistic” (8). Her claim she is “living proof [that the characteristics of autism can be modified and controlled]” (9)—together with her further claim her life now is “normal” (9)—reinforces the belief 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 binary; after all, it is according to Grandin “the real world” 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, the emphasis on recovery remains clearly present.


For example, “Autistic children who have recovered,” she claims, “took their childhood fixations and directed them towards constructive goals” (177). In this section Grandin also relates the findings of the famous 1971 Leo Kanner follow-up study specifically in terms of failures or successful recoveries (178).


Significantly, 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 follows.


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 connection between Carlock and Grandin did 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.

Grandin’s Thinking in Pictures

It is thus not particularly surprising that by Grandin’s 1995 Thinking in Pictures, the emphasis on recovery (on emerging from the label of autism into the real, “normal” world) largely has been 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 Oliver Sacks’s Foreword to Thinking in Pictures takes a different tack from that of Rimland’s Emergence piece. Sacks stresses that, “if Temple is profoundly different from most of us, she is no less human for being so, but, rather, human in another way” (16).


He further asserts that Grandin’s life writing is so “deeply moving and fascinating” not because it represents some sort of inspirational recovery story but instead because “it provides a bridge between our world and hers” (16).


Perhaps the most significant statement by Grandin herself in all of Thinking in Pictures comes as she is acknowledging that, even if they both are right in their own ways, her present view of her life with autism is radically distinct from that of Donna Williams.


According to Williams, “Autism is not me. Autism is just an information processing problem that controls who I am” (qtd. in Grandin 61). Grandin, however, declares, “If I could snap my fingers and be nonautistic, I would not. Autism is part of what I am” (60).


Ironically, Williams is usually credited with helping Jim Sinclair set the neurodiversity movement in motion with the founding of the Autism Network International and Autreat in the early 90s, so Grandin’s potential positioning of her with the medical model of autism may strike some as surprising.


The real point here, however, is by the mid-90s the most recognized American autistic has begun to align herself with the social model. With the above assertion, she definitively has abandoned her initial recourse to the recovery script and instead embraced her autism as human variation and difference.

Prince-Hughes’s Songs of the Gorilla Nation

Dawn Prince-Hughes’s 2004 Songs of the Gorilla Nation powerfully extends Grandin’s shift as she very self-consciously redefines and thereby reappropriates the emergence story 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 observes that “the effects of sensory deprivation” upon “zoo animals kept in barren concrete cages” often leads them to “develop abnormal behavior such as rocking, pacing, and weaving,” which she goes on to characterize as “strange, autistic-like behavior” (86).

Prince-Hughes’s Songs of the Gorilla Nation Grandin’s theorizing about how such experiences

may lead to the “construction” of an “abnormal ‘dendrite highway’”—which 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 (specifically, gorillas) and that of autistic individuals for theorizing the liminal qualities of life with an autism spectrum disorder. Significantly, however, her emphasis is on the positives, on what we have to learn, from drawing such a connection.


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”) tacitly yet forcefully serves to remind readers of the full personhood of autistic individuals as well.


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:

Prince-Hughes’s Songs of the Gorilla Nation “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, one encounters the emergence story 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, [autistics] are not only part of things but whole already” (224).

Robison’s Look Me in the Eye

This more healthy, less pathological understanding of autism spectrum disorders is an increasingly popular one as the decade progresses, and one may (for example) find it in the 2007 first-person book-length life writing by John Elder Robison, Look Me in the Eye. 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 an 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).


Interestingly, more often than not, it is the diagnosis that seems to open up rather than delimit their full potential—and, when one turns to third-person accounts of life with autism, one may plot a similar trajectory.

Park’s The Siege

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 later narrative one may detect at least some movement toward an emphasis on human variation and difference.

Park’s The Siege

The Siege was, as 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).

Park’s The Siege

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 discuss in this essay. 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, not only might one expect the deficits of autism to be at their most severe, but also when one might expect parental protectiveness to be at its height.

Park’s The Siege

Nevertheless, for all of The Siege and for nearly all of Exiting Nirvana, one primarily is reading a script of disability as defectiveness. In this script, 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).

Park’s The Siege

She does not, however, subject the mandate for normalcy, to a similar sort of interrogation. Consequently, in Park’s narratives, one again is 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 normal ability into which it is hoped the autistic individual will emerge.

Park’s The Siege

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).

Park’s The Siege

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 a cure.

Park’s The Siege

Park’s story is “about growth, and [as] there is no growth in Nirvana,” the family insists that they “could not leave Jessy to her empty serenity,” but instead had to “entice, intrude, enter where we were not wanted or needed” until, finally, they “did get into the walled city” of her autism. It is at this point, Park says, that “the siege metaphor became transmuted into a more ordinary one. Siege into journey” (10).

Park’s Exiting Nirvana

Interestingly, like Mr. Carlock, the family is represented as entering Jessy’s world. But, significantly, this is only to pull her out of that world. Exiting Nirvana is, consequently, for 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). According to 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 [Jessy] ‘for the sake of the other children,’ to spend her days somewhere in a back ward, rocking” (10). Yet, at the same time, autistics such as Prince-Hughes and Robison remain profoundly uncomfortable with any such exclusive attributions of the category human to the nonautistic world.


Exiting Nirvana, subtitled A Daughter’s Life with Autism, in fact 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—even if unintentionally so, the world of autism is here again represented as a world characterized by the absence of the human.


I should be clear my aim here is not to blame Park, or to insist that Jessy should have been left alone in Nirvana; I certainly never would want to minimize how profoundly trying the experience of living with autism is for a parent or any other family member understandably heartbroken over the difficulties of basic communication and daily living skills.


It is, rather, to question whether the world of autism, particularly the Nirvana of the nonverbal, should be reducible to an existence that is somehow less human, or even nonhuman. It is to remind all readers of such representations that one must never lose sight of the fundamental humanity of all autistic individuals, no matter how verbal or nonverbal, no matter how communicative or noncommunicative.


Indeed, by the end of Park’s most recent narrative there seems to be some sort of provisional gesture toward an acknowledgment that the siege motif and its mandate for normalcy (i.e., for exiting Nirvana) is no longer completely adequate. 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).

LaSalle’s Finding Ben

Barbara LaSalle is a mother who suffers immensely from despair over her seeming inability to connect with her son Benjamin Levinson’s private Nirvana. Significantly, her autistic child (although she will not have a diagnosis for him until his 20s) is extremely verbal and clearly something of a genius.


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 asserts that this narrative first and foremost tells her own story: “this book is really about me, my journey, my discovery” (xi). Ben, however (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 (Ben: “What is written here is my mother’s story. But it is also mine” [xiv]; Barbara: “This is our story” [5]).


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?”: “I don’t remember a time in my life when I didn’t think something was wrong with me” (33).


As a result, Ben makes 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, he says, “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).


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, he continues, “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 after 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).

Collins’s Not Even Wrong

Paul Collins’s 2004 Not Even Wrong is perhaps an even more significant third-person contribution to autism life writing because in it one encounters the parent of a small child who very early on begins to move beyond an understanding of autism as defectiveness to an 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 seems to be drawing yet another zoo animal analogy: “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 reports, “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 what he comes to understand is that, in fact, “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 confess 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 scenes for parents of autistic children that take place 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 [our family doesn’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).

McCarthy’s Louder than Words

At this point, with a tidy sort of parallelism to the trajectories I have traced in both the four first-person accounts and the four third-person accounts, it might seem like the perfect place to neatly wrap everything up. Given the paradigm shift I have mapped out, however, I feel it is important to emphasize that I by no means am suggesting that the traditional recovery story has been completely deconstructed and displaced.


Indeed, the appearance two falls ago of what already has become one of the most widely read autism narratives ever, Jenny McCarthy’s Louder than Words: A Mother’s Journey in Healing Autism, is by itself more than ample evidence that the older cultural script for autism remains a powerful, compelling one for many readers.


McCarthy’s book, which spent all of October 2007 in the Top Ten of the New York Times Best Seller list for nonfiction (making it as high as #3 on the Oct. 14 list), presents itself as precisely the sort of story that Collins insists his narrative decidedly is not (and, therefore, should not be made out to be): the movie of the week.


First, some important qualifying remarks regarding my response to Louder than Words are 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 had to face most of this difficult and stressful time alone, as her marriage ended when her husband simply could not deal with the whole situation. Ultimately, though, I have to admit there are just too many elements of her book that rub me the wrong way.


As an academic, I will admit to being a little skeptical of the University of Google, even though we all use it to 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 when she has to leave her son for a night or two to fly to Las Vegas (especially when she’s hired a 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 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.


She writes, “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 “enjoy[] the victim role” and who therefore “complain and play the ‘don’t you feel sorry for me?’ game” (138). Instead, she positions herself as 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).


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, even if it is more about Jenny McCarthy than it is about autism, Louder than Words also is a book with the potential to have a tremendous impact upon what the most popular understanding of autism is today.


To be true, McCarthy does occasionally acknowledge that there is a “wide range of differences in autistic children,” which might explain why “some children weren’t responding as well as their parents had hoped” even though “they were also doing the diet and supplements” (147).


She also acknowledges at one point that Evan might not ever “grow out” of his autism (“If he grows out of it someday, great,” she says), 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 near the very end of the book admits that Evan still flaps and still likes to watch ceiling fans [188]) the overall effect of her narrative (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 reassess and reevaluate 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 simply reports to the dumbfounded state worker, “I found the reason for autism, which led me to the solution” (186).


This sort of belief flies in the face of the most recent clinical reports on autism issued by the American Academy of Pediatrics, which stress autism spectrum disorders are “chronic conditions” that, “similar to other neurodevelopmental disabilities,” require “chronic management” (i.e., “ongoing medical and nonmedical intervention”) (Myers and Johnson).


McCarthy and her story, however, in the relatively short time since the appearance of her book, have received an incredible amount of attention from the popular media; for instance, she has appeared on Larry King Live and Oprah, as well as gracing the cover of People magazine.


My concern is that what I see as a strong and welcome trend within book-length accounts of living with autism spectrum disorders—a trend toward an acknowledgement of, even an insistence upon, an understanding of disability as human variation and difference rather than as inherent defectiveness (with its emphases on cure and normalcy)—may be overshadowed, even eventually countered, by media blitzes hearkening back to an outdated paradigm of disability, the ultimate goal of which is the elimination rather than the accommodation of disability.

Conclusions

This is a heady time for autism advocacy. By United Nations declaration, 2 April 2008 was the first-ever World Autism Day. The United States government passed a federal Combating Autism Act in December 2006. There are now 9 states with laws mandating some form of insurance coverage for autism services, and similar initiatives are under way in over 25 other states, including Virginia. Yet there is far from a united front on how individual states, America, and the world should proceed in order to best serve the needs of the autism community.

Conclusions

For example, while Autism Speaks hailed the bill signed into law on 9 July 2008 by Governor Ed Rendell of Pennsylvania as the most comprehensive autism coverage to date, some grassroots activists/advocates actually worked to get the final version of this bill thrown out (after they had supported, in some cases even helped shape, the original version) because they saw it as a completely gutted compromise negotiated by Autism Speaks and the insurance lobby.

Conclusions

There are so many different camps out there that it is very difficult to create a thorough and/or coherent picture of the current autism “scene.” Certainly two of the most prominent emphases across the board focus on cause (from genetics-based research to vaccine conspiracy theories) and treatment (from the more mainstream Applied Behavioral Analysis method to alternative treatment protocols such as the use of chelation, gluten- and casein-free diets, and/or vitamin supplements).

Conclusions

The neurodiversity movement, out of which I see the new narrative paradigm of autism as human variation and difference as having emerged, is an increasingly important player in contemporary debates on autism—though it is a perspective primarily held by autistics themselves, not the parents and professionals who have set the agenda for the more national discussions of autism until relatively recently.

Conclusions

However, given the widely divergent and sometimes incredibly fractious views held by so many different groups and individuals, it is too simplistic to cast the neurodiversity movement as an indicator of some sort of inevitable progress toward a more enlightened understanding of autism. Autism remains an ideological battleground upon which the winners are yet to be determined.

Conclusions

Indeed, ever since the beginnings of the neurodiversity movement within the larger “autism community” (which initially was, and to some extent still primarily is, comprised almost exclusively of parents and professionals rather than autistics themselves), there has been a very strong, almost visceral backlash against its claims—and its proponents themselves.

Conclusions

From the earliest resistance by the Autism Society of America toward Sinclair’s Autism Network International (ANI) to the current hegemony of Autism Speaks and its domination of autism publicity on the national scene, autistic self-advocates and their brand of identity politics ironically by and large have faced an uphill struggle both in gaining acceptance within the established “autism community” and in getting their message out to a broader national and international audience.

Conclusions

Yet through groups/networks like ANI/Autreat, the Autistic Self-Advocacy Network (ASAN), autistics.org, and WrongPlanet.net; and through individuals like Amanda Baggs, Michelle Dawson, Ari Ne’eman, and Sinclair; that definitely is beginning to change.

Conclusions

For instance, in a six-month period from early March to early July 2008, Ne’eman (Founding President of ASAN) appeared on Good Morning America, National Public Radio’s The Bryant Park Project, and XM Satellite Radio’s Oprah & Friends channel show The Peetes; and was featured in articles published by New York Magazine, Newsweek, and the Wall Street Journal.

Conclusions

Certainly pieces like the New York Magazine article (“The Autism Rights Movement” by Andrew Solomon) and one of the recent feature essays in the smart quarterly Brain,Child (“Disorder or Identity?” by Juliette Guilbert) are helping to increase the movement’s profile with balanced, thoughtful introductions to the controversy still swirling around its positions.

Conclusions

Both Guilbert and Solomon admit to a more than healthy dose of initial skepticism about the whole idea of neurodiversity, yet while neither is close to becoming a full-fledged convert by the end of their respective writing processes, each comes to sincerely and thoroughly respect some of its leading voices and ideas.

Conclusions

Solomon even decides to conclude his article by foregrounding one of its most positive aspects in his final sentences: “It is unproductive to rail against the incurable; if you can learn to love it, that’s your best chance of happiness. For some people, the love is self-evident; for others, it is acquired through struggle; others cannot do more than pretend to it.”

Conclusions

He continues, “Though neurodiversity activists can get in the way of science and sometimes wrap themselves up in self-important, specious arguments, they also light the way to such love—a model of social acceptance and self-acceptance that has the capacity to redeem whole lives.”

Conclusions

It is the very same redemptive potential through social acceptance and self-acceptance that I find represented in the recent life writings on autism I have discussed tonight (excepting McCarthy). The writers of these new narratives all agree with ASAN that “abandoning old and inaccurate models of pathology and adopting a new approach focusing on both the unique challenges and strengths of autistics” opens up a marvelous amount of potential for “improv[ing] outcomes and promot[ing] a new paradigm of inclusion and respect.”

Conclusions

These writers all agree that “the autism spectrum and those on it are important and necessary parts of the wide diversity present in human genetics” (Autistic Self-Advocacy Network). Ultimately, then, regardless of what one thinks of the neurodiversity movement, what I feel one above all comes away with after reading such autism life writings is an appreciation for how powerfully their alternative sort of story’s emphasis on human variation and difference resonates with a belief in basic human dignity.

foss emerging from emergence part 2

Education

daughters life

normal life

devaluing disability

hisher disability

social meaning of disability

disability rights movement

longmores options disability

firstperson autism narratives