This article draws on the traditions of critical discourse analysis (N. Fairclough, 1995, 2001; M. Foucault, 1972, 1980; J. P. Gee, 1999) in critically examining the discursive formation of “recovery” from autism in applied behavioral analysis (ABA) discourse and its relationship to constructs of hope. Constituted principally in the work of O. I. Lovaas (1987) and C. Maurice (1993), and central to ABA discourse on recovery, has been the construction of a particular vision of hope that has at least 2 integral conceptual elements: (a) Hope for recovery within ABA discourse is constructed in binary opposition to hopelessness, and (b) recovery within ABA discourse is discursively constructed as “recovery (to normalcy).” The author analyzes these 2 pivotal ABA texts within the context of an analysis of other uses of the term recovery in broader bodies of literature: (a) within prior autism-related literature, particularly autobiography, and (b) within literature emanating from the psychiatric survivors' movement. If, indeed, visions of hope inform educational policy and decision making, this analysis addresses S. Danforth's (1997) cogent query, “On what basis hope?”, and asserts that moral and political commitments should be central sources of visions of hope and, therefore, inform educational policy and decision making for young children with labels of autism.
A central feature of applied behavioral analysis (ABA) discourse on autism from 1987 to the present has been the construct of “recovery” from autism. This issue has been addressed in many spheres—from academic literature in the disciplines of education, psychology, and law (Cohen, 1998; Gresham & MacMillan, 1997; Jacobson, Mulick, & Green, 1998; Kotler, 1994; Mulick, 1999), to parent and autobiographical narratives (Baron & Baron, 1992; Grandin & Scariano, 1986; Johnson & Crowder, 1994; Kaufman, 1994; Maurice, 1993; Stehli, 1991), to popular and electronic media (Fanlight Productions, 1998; Kirkus Reviews, 1993; Kirsch, 1993; Sege, 1993; van den Nieuwenhof, 1996; Weizel, 1995; Wolfe, 1993), to the kitchen table and listserv conversations of parents of young children labeled with autism. Recovery is a powerful construct, one that is intimately connected to conceptualization of hope and one that many parents draw on in articulating their hopes for their own young child labeled with autism.
In this analysis, I report on a portion of a larger study of the notion of recovery in autism discourse (Broderick, 2004) that involved both critical discourse analysis (CDA; Fairclough, 1995, 2001; Foucault, 1972, 1980; Gee, 1999) of texts as well as in-depth interviews with parents of young children labeled with autism. During the course of the broader study, when I asked one parent, Carmen [a pseudonym], why she was using ABA interventions with her young son, she looked at me rather quizzically and replied, “It's the only thing that's been scientifically proven to work in recovering kids with autism—why would we do anything else?” (p. 1). I was and I remain compelled by her query. When I asked her what her goals were for her son, Carmen replied, “I don't want him to be handicapped—abnormal. I guess my goal for him is recovery, or at least partial recovery” (p. 131).
This construct of recovery holds a significant place in ABA discourse around autism, and I argue that its relationship to constructs of hope is integral to the present popularity of behavioral intervention as a method of early intervention. As Cohen (1998) and others have acknowledged, the parameters of the institutional discourse around ABA and hope for recovery from autism have been largely constituted by the writings of O. Ivar Lovaas (1987) and Catherine Maurice (1993) in her autobiographical account of her own children's so-called recovery using Lovaas's methods. Though Lovaas set the stage by introducing the construct of recovery to ABA discourse in his treatment effect study, the construct was popularized with parents and inextricably linked with hope by Maurice's text and the frenetic public discourse that ensued following the publication of her autobiographical account of the recovery of her two young children from autism.
It is not difficult to imagine that an intervention discourse so clearly predicated on a bold rhetorical vision of hope might be highly attractive to parents of young children labeled with autism, standing as it would in such stark contrast to the relative sense of hopelessness that has historically characterized much of the discourse around autism over the past half a century. Indeed, I argue that the intensity of this most current interest in the behavioral discourse around autism may be at least partially understood by examining its active engagement with a particularly bold and compelling vision of hope—the construct of recovery from autism—and the powerful resonance that concept may have with parents' hopes for their children.
Danforth (1997) published a seminal piece entitled “On What Basis Hope? Modern Progress and Postmodern Possibilities” in which he explored the “powerful and assumed role of hope in special education” (p. 93), a role that he characterized as largely “unexamined” (p. 93). His analysis of modern and postmodern bases of hope and of truth claims is of obvious relevance to this one:
From this [modernist] perspective, hope lies in the gradual, scientific production of improved approximations of “truth” and the development of intervention technologies, practices, programs, and instruments “that work” according to the truth-clarifying research….Postmodernists find the historical myth of scientific progress to be a socially constructed story of uncertain truth value.…[P]ostmodern scholars critique the sociopolitical effects of that narrative. (p. 94)
I concur with Danforth's assertion that hope plays a pivotal, though largely unexamined, role in decision making for students with identified disabilities. This analysis examines the narrative and discursive practices that seek to constitute a particular “truth” as a basis for hope in the discourse around recovery for young children with labels of autism.
The analysis presented herein is part of a larger study exploring the visions of hope that are held by parents for their young children with the label of autism and the ways in which those visions might inform the process of educational decision making (both for individual students as well as for educational policy; Broderick, 2004). This study is conducted in the qualitative tradition of inquiry in the social sciences (Bogdan & Biklen, 2007; Denzin & Lincoln, 2000a; Taylor & Bogdan, 1998) and is conceived from a critical disability studies perspective (Gabel, 2005). The analysis draws on the theories and methods of CDA (Fairclough, 1995, 2001; Foucault, 1977/1995, 1980; Gee, 1999; Rogers, 2003, 2004). According to Rogers (2004),
A critical discourse analyst's goal is to study the relationships between language form and function and explain why and how certain patterns are privileged over others. In the sense that all systems of meaning are linked to socially defined practices that carry more or less privilege and value in society, such exploration is also an exploration into power and language. (p. 4)
Although there are a variety of forms of traditions of CDA (see Rogers, 2003, for a cogent discussion of the various traditions of CDA), according to Gee (1999), “[W]hat is important is that the discourse analyst looks for patterns and links within and across utterances in order to form hypotheses about how meaning is being constructed and analyzed” (p. 99).
In this analysis, I treat the discourse on recovery that circulates through these data sources in a Foucauldian sense as being constitutive of a discursive “regime” (Foucault, 1980, p. 133) that may effectively “discipline” (Foucault, 1977/1995, p. 138) the ways that parents of young children with labels of autism (and educators, policymakers, etc.) represent and make sense of their own experiences. According to Foucault (1977/1995),
“Discipline” may be identified neither with an institution nor with an apparatus; it is a type of power, a modality for its exercise, comprising a whole set of instruments, techniques, procedures, levels of application, targets; it is a “physics” or an “anatomy” of power, a technology. (p. 215)
Foucault's notion of discipline may be understood to be roughly analogous to Fairclough's (2001) notion of “rule by consent”: “Ideology is the key mechanism of rule by consent, and because it is the favoured vehicle of ideology, discourse is of considerable social significance in this connection” (p. 28). Thus, I explore and analyze the discourse around recovery from autism in an attempt to understand the ways in which particular discourses operate with ideological and disciplinary power to constitute and sustain particular truths in the political economies of knowledge, truth, and cultural power. I hope that this exploration of the discursive regime of truth around recovery from autism illustrates the complex dynamics of the production of knowledge and, therefore, power through discourse (Foucault, 1980). Indeed, I share Foucault's concern with explicating “regime[s] of truth” and what he calls the “‘political economy’ of truth” (1980, p. 131). According to Foucault:
There is a battle “for truth,” or at least “around truth”—it being understood once again that by truth I…mean…“the ensemble of rules according to which the true and the false are separated and specific effects of power attached to the true,” it being understood also that it's not a matter of a battle “on behalf” of the truth, but of a battle about the status of truth and the economic and political role it plays….“Truth” is linked in a circular relation with systems of power which produce and sustain it, and to effects of power which it induces and which extend it. A “regime” of truth. (Foucault, 1980, pp. 132–133)
Thus, in exploring the “systems of power” that “produce and sustain” truth through discourse, the Foucauldian task becomes one of analyzing the performance of discursive practice. In considering the ways in which the particular discursive formation of recovery from autism has emerged in the current historic and material circumstances, I consider not only those aspects of this discursive formation that emerge as dominant or as constitutive of a “regime of truth,” but also those aspects of discourse that Foucault (1980) described as “subjugated,” “disqualified,” or “excluded.” It is not a matter of discerning or declaring an absolute truth in an objectivist or realist ontological sense (nor of replacing one truth with another); it is, rather, about discerning the physics or anatomy of power in the process of truth production.
In the process of conducting in-depth interviews with parents who agreed to participate in the original study, I quickly realized that most of the parents drew on a common set of ABA-related constructs (a discourse) in their descriptions of their experiences and that parents regarded and presented these constructs as if they were merely mirroring some objective and taken-for-granted aspect of the world. Each of the parents referred to the texts selected for inclusion in this analysis by asking me questions such as, “Have you read the Maurice book?,” “You've heard of Lovaas's study, right?,” or “So do you believe recovery is possible?” I treated these references to Maurice, Lovaas, and recovery as examples of Garfinkel's (1967) “indexical expressions” (p. 5), as
Expressions whose sense cannot be decided by an auditor without his necessarily knowing or assuming something about the biography and the purposes of the user of the expression, the circumstances of the utterance, the previous course of the conversation, or the particular lreationship of the actual or potential interaction that exists between the expressor and the autidor. (p. 4)
The ways that parents constructed and constituted ABA and the construct of recovery in their own talk was, thus, integrally related to and informed by the ways in which particular concepts had been constructed and constituted in ABA texts and in the popular media; it is these texts and their discourses that I treat as qualitative data in this analysis.
Recovery and Positivism—Framing Prior Inquiry
Maurice (1993), when first encountering the construct of recovery from autism, asked herself, “Could this be true?…But were they truly recovered?” (pp. 61–62). Similarly, Cohen (1998) asked, “Is recovery from autism really possible?” (p. 79). Indeed, in Lovaas's (1987) article, the author pointed out that he used the term normal functioning to describe “children who successfully passed normal first grade and achieved an average IQ on the WISC-R [Weschler Intelligence Scale for Children—Revised; Weschler, 1974]” (p. 8). Lovaas then stated that “questions can be asked about whether these children truly recovered from autism” (p. 8). Cohen (1998) has also suggested that “before the question of recovery can be examined productively, an operational definition has to be specified” (p. 160). Thus, much of the discussion and dissent around the construct of recovery from autism in the literature throughout the 1990s and much of the first decade of this century have been framed in these terms, suggesting that the significance of the construct lies in the expert determination as to whether recovery from autism in general is really, truly, verifiably, objectively possible or whether particular individuals might really, truly, validly be classified as recovered. The assumptions underlying the framing of such questions would suggest that the “question of recovery” is one that can be instrumentally addressed by specifying operationally what is “really” meant by the term and by judging the goodness of fit between the operational definition and the observed empirical phenomenon in reference.
These questions have thus been conceptualized from within a positivist worldview. They are framed largely as objectivist questions of whether the language—the specific term recovery—accurately, objectively, and verifiably reflects the essence and the reality of the phenomenon being observed. For example, Cohen (1998) asked, “Are these individuals recovered, or are they autistics with near-normal functioning?” (p. 170), with the implicit assumption that there is a meaningful, real distinction between recovered individuals and “autistics with near-normal functioning” and that only one of these two ways of talking about these referenced individuals accurately reflects and represents an empirical reality.
Absent from this conversation are discourses that may conceptualize autism as an identity, for example, or as a way of experiencing the world that may be better understood through first-hand accounts of that experience than through outsider observations. Also absent from this conversation are broader cultural questions about the meaning of the constructs of ability and disability—what does it mean when young children with labels of autism develop and demonstrate social, linguistic, and cognitive skills that are far more complex than had been expected based on the dominant, deficit-driven cultural and professional presumptions underlying the label of autism? How might educators, parents, researchers, and policymakers respond to such circumstances: by seeking to refine and hone diagnostic tools to more carefully and exactly assess and determine who really has autism and who does not, while keeping the demarcation line largely intact? Or by engaging in the much more complex and political process of interrogating and deconstructing the categories themselves and the lines that divide them? The answers to these questions are not self-evident and depend on the political, philosophical, and ideological positioning of the persons posing and addressing the questions.
I turn now to a brief history of the discursive formation of the construct of recovery from autism within the broader autism discourse community, a construct that is qualitatively different in meaning from the construct of recovery from autism in the ABA discourse community. A brief analysis of this context will help to illustrate the ways in which the meanings of this unstable linguistic construct of recovery—though bound by a common lexical marker—continue to shift.
Recovery and Successful Participation
The term recovery has been invoked from time to time over the past several decades in the broader literature on autism to describe, represent, and constitute the experiences of individuals who had been labeled with autism as children and had been considered to be significantly disabled, yet who emerged into adolescents and adults who led relatively ordinary lives, people for whom autism was no longer a profoundly disabling condition (Baron & Baron, 1992; Grandin & Scariano, 1986; Kaufman, 1994; Stehli, 1991). One of the earliest engagements with the construct of recovery from autism was made by Rimland (1986), in describing Temple Grandin:
She explained that she was a recovered autistic person and was now in college majoring in psychology….Only about one-fourth of the people who tell me that they are recovered autistics seem to me to be probably correct. In Temple's case, her voice and her unusually direct manner persuaded me that she was a recovered (or recovering) autistic. (p. 5)
Rimland also said of Grandin's autobiography (Grandin & Scariano, 1986), “To my knowledge, this is the first book written by a recovered autistic individual” (Rimland, p. 7). Though he described her as recovered, he also hinted at the somewhat liminal nature of Grandin's membership or status as recovered by also describing her as a “recovered (or recovering)” autistic individual.
After declaring her book to be the first he knew of authored by a “recovered autistic individual,” Rimland (1986) then described Grandin as “growing from an extremely handicapped child who appeared to be destined for permanent institutionalization to a vigorous, productive, and respected adult who is a world-authority in her field” (p. 7). Thus, the meaning of Rimland's descriptor of Grandin as recovered is one that was constructed within the context of a very particular personal history (“an extremely handicapped child”) with a particular expected vision of the future (“appeared to be destined for permanent institutionalization”). It is against this background that one understands and makes sense of Grandin's adult accomplishments (as a “vigorous, productive, and respected adult who is a world-authority in her field”). In a sense then, it is as though Grandin was not merely described as recovered but was actually constituted as such through the discursive act itself, an act that derived its particular meaning in part from the recognition that her life turned out very differently than had been expected of her, given her label of autism. Her vigorous, productive life as a respected adult and professional authority was incongruous with the dominant expectations of outcomes for one who was labeled autistic. Thus, rather than adjust our (evidently erroneous) expectations of people labeled with autism or our visions of what is possible and to be hoped for in their lives, the successful individual labeled with autism is discursively reconstituted as a recovered individual labeled with autism.
Rimland (1986) then commented, “On speaking with Temple again recently, after a lapse of several years, I was impressed with how much less autistic-sounding she is today than she was when I first met her. She has continued to grow and develop” (p. 7). Even though he reported having been “persuaded…that she was a recovered (or recovering) autistic” on first meeting Grandin, he also had described her at their first meeting as “autistic-sounding,” describing her “loud, unmodulated voice (very characteristic of autistic persons)” (p. 6). Although Rimland described Grandin as recovered, he continued nevertheless to represent her using the adjective autistic, as a person who is autist-ic, occasionally even using the noun form “a[n]…autistic” to refer to her and continuing to connote that she was autistic, that autism was integral and central to the identity ascribed to her.
Grandin, too, referred to and represented herself as both recovered and autistic. For example, Grandin first represented herself to Rimland (1986) as “a recovered autistic person” (p. 5), and she offered readers “teaching tips from a recovered autistic” (Grandin, 1988, p. 1) in one of many articles she authored on her experiences with autism. She commented in her autobiography (Grandin & Scariano, 1986) that “I recovered because my mother, Aunt Ann, and Bill Carlock cared enough about me to work with me” (p. 184). However, Grandin also continued to identify herself as autistic, saying, “If I could snap my fingers and be nonautistic, I would not—because then I wouldn't be me. Autism is part of who I am” (as cited in Sacks, 1995, p. 291). Thus, Grandin described and represented herself as both autistic and recovered. Each is both descriptive of, and constitutive of, her own experience and identity, and the two terms appear not to constitute mutual exclusivity.
Recovery as it is constructed by Rimland (1986), Grandin and Scariano (1986), and Sacks (1995) in these particular speech and textual acts seems to describe a certain unforeseen or unexpected success in Temple's life—in her academic career as a student, in her professional academic career as a professor of animal sciences, and as a leading designer of livestock handling facilities. These successes may be regarded as unexpected within the context of dominant professional assumptions about autism regarding the presumed likelihood of intellectual disability and the history of institutional incarceration shared by so many with that label. The meaning of her recovery can only be understood in the particular context of her own history as “an extremely handicapped child who appeared to be destined for permanent institutionalization” (Rimland, 1986, p. 7).
Other adults with childhood histories similar to Grandin's have used the term recovered to describe themselves or have alternately been identified as recovered by others. Sean Barron (Barron & Barron, 1992) coauthored an autobiography with his mother, Judy, in which each shared his or her own perspective on what it was like to be, and to rear, a child with a label of autism. Barron described himself as “overcoming autism” (p. 255), although he is described on the book cover as a young man who “continues his recovery from autism.” Although he lived unassisted in his own apartment, had a job, a girlfriend, friends, and had graduated from college, Barron nevertheless wrote, “I know quite well that my autism will always be part of me, that it isn't something I can expect to be ‘cured’” (p. 254). Thus, his successful, full participation in what is in many ways a very ordinary life was represented as an ongoing process of “overcoming” or “recovering from” autism, without expectation of being “cured” of, or otherwise without, autism as an eventual outcome or identity.
Raun Kaufman is another young man with a childhood label of autism whose early experiences have become well known through his father's books, Son Rise (Kaufman, 1976) and Son Rise: The Miracle Continues (Kaufman, 1994), and the 1979 television movie based on the book Son Rise. His father, Barry Kaufman (1994) described what he called “Raun's emergence from autism” (p. 195). Raun wrote the foreword to the 1994 edition of Son Rise: The Miracle Continues, and in it he wrote:
It was not my recovery that made the event of my autism amazing and meaningful (though, needless to say, I'm very happy with the outcome); it was my parents' open-minded attitude in the face of my condition and their desire to find meaning in it regardless of how I turned out in the end. (p. xiii)
The Kaufmans have consistently deflected attention away from Raun's recovery as the most “amazing and meaningful” aspect of his life being labeled with autism and have maintained that the most important aspect of their life with Raun was their unconditional acceptance of and joy in Raun throughout his life, “regardless of how [he] turned out in the end.” If other parents of young children labeled with autism are to look at Raun and see a vision of hope for their child, the Kaufmans might hope that that vision not be centered on Raun's outcome but on the process of loving and appreciating their child unconditionally while both expecting and supporting his or her continued learning and growth. The Kaufmans held the latter as a vision of hope for their son, and they held it out to other parents as well:
Psychologists and special education teachers have accused my wife and me of giving other parents false hope. These experts claim with great authority that they could know the outcome of a child's life at only two or three years old. Hogwash!…[D]on't ever give up your hope!…Hope has little to do with outcome. (p. 196)
Thus, although the Kaufmans and others have identified Raun as recovered, the vision of hope that they construct around Raun's recovery has “little to do with outcome” but centers on the process through which Raun “emerged” from his autism and into greater participation with the world.
Georgiana Stehli is a young woman whose recovery from autism has become widely known through a book her mother wrote chronicling her experiences. Annabel Stehli (1991) referred throughout her text to Georgie's “recovery” from autism. She wrote of “the key to her recovery” (p. 153), chronicled events as occurring “since her recovery” (pp. 203, 207), referred to “another mark of Georgie's recovery” (p. 204), and pointed to a particular intervention as “the pivotal factor in her recovery” (p. 220). Indeed, Rimland (1991) authored the afterword of Stehli's text, and in it he wrote, “Almost never do I get a letter saying an autistic child has recovered to the point of fitting smoothly into settings of normal people, and Annabel claimed her daughter was doing just that” (p. 223). Thus, in this context, recovery for Rimland signified “fitting smoothly into settings of normal people,” a use of the term that is fairly consistent with his earlier description of Grandin's recovery. Indeed, Georgiana is now a married woman with a successful career as an illustrator, though she has acknowledged that she still has some “autistic characteristics” (Cohen, 1998, p. 170).
In each of these examples, as in the example of Grandin illustrated earlier (Grandin & Scariano, 1986; Rimland, 1986; Sacks, 1995), the term recovery appears to be discursively constructed to describe a particular level of participation in ordinary life (e.g., jobs, college, friends, marriage) without necessitating a disavowal of identifying one's experiences and one's self with autism. Indeed, the term recovered has also been used rather loosely to describe individuals with labels of autism who have led what others have deemed successful adult lives (Kirkus Reviews, 1993), even though those individuals so described may strongly identify themselves as autistic, or even an autistic (e.g., Williams, 1992). The experiences of each of these individuals have made significant contributions to the autism literature in the form of autobiography or case study, and although some have credited these successful experiences to particular forms of intervention (Kaufman, 1994; Stehli, 1991), others have not (Barron & Barron, 1992; Grandin & Scariano, 1986), citing a variety of elements in their lives, including supportive and loving families, consistently high expectations of them, and rigorous curricula in their schooling. Rather than being exclusively and causally tied to particular forms of intervention discourse, the preceding examples of recoveries stand in the literature largely as examples of particular individuals labeled with autism who, through a variety of ways and means, grew into happy, successful adults who participated fully in most aspects of ordinary life, outcomes that many parents hope their own children may someday share.
However, the construct of recovery from autism has also been heavily drawn on in the discourse surrounding ABA for young children with autism, and the meanings that have evolved around it in this particular discourse community appear to be qualitatively different from the meanings and significances of the term recovery described thus far. I turn now to an analysis of the ways that the term recovery has been constructed in ABA discourse and its relationship to hope for parents of young children with labels of autism.
Recovery and Hope in ABA Discourse
Maurice's (1993) Let Me Hear Your Voice, a New York Times bestseller, has been widely read and critically acclaimed for its contribution to the current literature on early intervention for young children labeled with autism and more, in particular, to the popular literature on ABA as an intervention method. When the book was published, reviewers were largely positive in their reviews, enticing readers with promises of:
A vivid and uplifting story of how a family pulled not one but two children out of the torments of autism—and into a normal life…this [book] offers not only hope but a road map….Maurice offers new strength to parents who refuse to give up on their autistic children. (Kirkus Reviews, 1993, page number not available)
Another reviewer wrote:
A word seldom heard in discussions of autistic children is “hope.” A word even more rare is “recovery.” Both are possible, however, if children receive early “behavior modification” treatment from therapists and patient, persistent training from parents, argues Catherine Maurice….Finally, Maurice learned of one area of research offering real hope. (Wolfe, 1993, p. 14a)
Yet another reviewer lauded Maurice's text as a “universal tale of hope, dogged parental love, hard work and ultimate triumph” (Sege, 1993, p. 27).
Acknowledging some of the controversy surrounding debates over treatment approaches for young children with labels of autism, another reviewer presented Maurice's (1993) endorsement of ABA as “a convincing argument,” and asked readers, “after all, who is a more credible advocate than a mother whose children were redeemed from the ‘death in life’ that is autism?” (Kirsch, 1993).
The Maurices' (1993) story was, thus, described as a “universal tale of hope” in which “both [hope and recovery] are possible.” In addition, the family was described as having found “real hope,” in implied contradistinction to unrealistic or false hope. Perhaps most eye catching to a parental audience reviewing this text was the offering of “not only hope but a road map.” The inside front cover of Maurice's book reads, in part:
This is the profoundly moving story, told by their mother, of how two children were rescued from the tragedy of autism—and the first account in which diagnosis, therapy, and authentic recovery are fully documented….Diagnosis: autism. Prognosis: incurable. We follow their frantic search for anyone who might offer hope—a search that leads…finally, [to] their providential discovery of the work of O. Ivar Lovaas, who, using intensive behavioral therapy with very young children, had achieved a documented recovery rate of 47 percent—children who are now teenagers and are cognitively and socially normal.
Many parents who have pursued ABA-based treatment interventions with their young children have reported that Maurice's (1993) book was one of the most influential texts they read after being given a diagnosis of autism for their child, one that prompted them to seek out similar interventions for their own children. In a 1998 Canadian Broadcasting Company documentary entitled Behind the Glass Door: Hannah's Story (Fanlight Productions, 1998), a grandmother of a young child labeled with autism described how Maurice's book led her family to seek out ABA intervention for her granddaughter:
I found the book, Let Me Hear Your Voice—I think I got it out of the library. And I read it, and the more I read, the more encouraged I got, and I thought, “this lady has really worked with her child,” and this can happen, this can happen for Hannah.
Hannah's mother, Karen Shepherd, said of reading Maurice's book, “It was like hope was reborn.” Shepherd describes in the video how she came to pursue for her daughter the ABA intervention that was described in Maurice's book:
I heard about Durham Behavior Management, and I heard that they would help people with autistic children. And I can remember with fear and trembling, I had this book in my hand, and I walked into their office and made an appointment, and I said, “Have you read this book? I want to do this with my daughter—will you help me?”
Listening to parents describe the tedious and often disheartening process of sifting through vast amounts of information on autism and intervention, their descriptions of Maurice's (1993) text are often strikingly similar in that many parents described this book as providing a much-needed sense of hope for their child:
The Pagonis say they don't feel helpless anymore. They gained hope after reading a book by another Connecticut woman, who wrote under the pseudonym Catherine Maurice, that chronicles what she describes as the recovery from autism of her two young daughters [sic] after treatment with an intensive behavioral method. (Weizel, 1995, p. 15)
Other parents have echoed similar sentiments in sharing their stories:
What the Taylors found most distressing was that they were not offered any hope for their son. Rather, they faced the prospect of him never being able to lead an independent life. Then a friend discovered an article about a woman who had apparently helped her autistic daughter to make a full recovery by using the Lovaas method of healing….[T]o the Taylors, it represented their only hope of bringing their son back from the mysterious world into which he had retreated…. “We felt we owed it to Oliver to try absolutely anything that offered him a chance of recovery.” (van den Nieuwenhof, 1996, page number not available)
In many ways, Maurice's (1993) text, thus, set the stage for popular discourse around hope for recovery from autism. Central to this discussion has been the construction of a very particular vision of hope that has at least two integral conceptual elements, each of which is analyzed more fully below: (a) Hope for recovery within ABA discourse is constructed in binary opposition to hopelessness, and (b) recovery within ABA discourse is discursively constructed as “recovery (to normalcy).”
Hope for Recovery Versus Hopelessness
In this popular ABA discourse, hope for recovery is discursively constructed in binary opposition to hopelessness: One is presented with a perceived choice between hope and despair. This discursive opposition of hope and despair disciplines, in a Foucauldian sense, the hopes of parents, educators, and policymakers in envisioning and enacting possible futures for young children with labels of autism. I argue that three interrelated conceptual elements of this discursive opposition of hope versus hopelessness contribute to the disciplinary power of this conceptual binary and to the ways that it operates as if natural, neutral, and practical. This binary conceptualization of hope versus hopelessness disciplines the conversation around hope and recovery by (a) discursively reproducing and representing autism (specifically) and disability (generally) as inherently tragic, catastrophic, and hopeless; (b) representing hope for recovery not as a vision of hope but as the only vision of hope for a young child labeled with autism, the desired “end”; and (c) inextricably linking this “only” hope (for recovery, the desired end) with a specific intervention methodology, ABA, as the means necessary to attain that end. I illustrate each of these elements in greater detail below.
Autism–disability as tragic, catastrophic, and hopeless
It would be difficult to characterize traditional professional discourses on autism as particularly hopeful, as these discourses typically maintain that 50%–75% of people with labels of autism are intellectually disabled (Freeman, 1997; Rapin, 1997; Rutter, 1978, 1983) and that potential futures for these individuals often include the possibility of institutionalization (Lovaas, 1987, 1988; Ornitz & Ritvo, 1976; Rutter, 1970). In Let Me Hear Your Voice, Maurice (1993) described her encounters with these traditional professional discourses, pointing out that “everything I read [about autism] was so appalling, and spelled such hopelessness” (p. 22). Shortly after being given a diagnosis of autism for her daughter and having read what information she could find on the subject, Maurice said, “What we already knew, sitting in Dr. DeCarlo's office, was that autism was considered to be a permanent handicap, and that our daughter, according to prevailing medical opinion, would never talk, or act, or love in any normal way” (p. 26). Thus, Maurice's understanding of autism at that point was constructed as similar to permanent exclusion from normal participation in talking, loving, and other actions and aspects of everyday life.
The inside cover of Maurice's (1993) text sums up a common popular and professional perception of the relationship between the label of autism and the possibility of hope: “Diagnosis: autism. Prognosis: incurable.” Many other parents have reported similar prognoses of doom over the decades; for example, Kaufman (1994) shared the story of the prognosis offered for his son that, unfortunately, would be all too familiar to many parents:
The clinician now looked at us rather sadly and tried to convince us of the unfortunate prognosis for this condition. His associate suggested that we were lucky to have two normal children. In effect, he said, we should focus our attention on them and consider eventual institutionalization for our son. Never, ever, did we want to see our child through their eyes….We decided to be hopeful even if others called such a perspective unrealistic. Without hope, we had no reason to go on. (pp. 24–25)
This common popular and professional conceptualization of autism as equivalent to hopelessness is not unique to the ABA discourse on autism, nor is it a concept that may safely be described as outdated. It is within the context of this broader construction of hopelessness associated with autism that the construct of recovery from autism as a form of hope has emerged, and the meaning of this particular construction of hope seems to be embedded within and defined by its contrast to this widespread sense of hopelessness.
Central to this construction of recovery as hope in opposition to despair is the understanding and representation of autism as utterly and totally catastrophic, a tragic condition devoid of hope by its very essence. Maurice (1993) described the despair that autism represented to her:
There is something about autism that to me gave meaning to the phrase “death in life.” Autism is an impossible condition of being there and not being there; a person without a self; a life without a soul. (p. 57)
Reviewers similarly construct this impossible condition as tragic when they described Maurice pulling her children “out of the torments of autism” (Kirkus Reviews, 1993, page number not available), and of their being “rescued from the tragedy of autism.” Maurice recounted the dominant professional vision of autism as a tragic disability with a dire prognosis when she reported to her readers what she had learned from her own reading on the subject:
As to prognosis, over half the children had a “uniformly poor prognosis” and only about a quarter of them could do “moderately well,” whatever that means. Any mention of “cure” or “recovery” was conspicuously, ominously, absent. (p. 17)
Lovaas (1987) also contributed to this construction of autism as a disability with little room for hopeful visions of a child's future:
Autism is a serious psychological disorder with onset in early childhood.…The prognosis is very poor.…The majority [of individuals in Rutter's, 1970, follow-up study] (more than 60%) remained severely handicapped and were living in hospitals for mentally retarded or psychotic individuals or in other protective settings. (p. 3)
Lovaas (1987) continued to construct the hope for recovery offered by his behavioral treatment program in opposition to visions of hopelessness and despair. Lovaas concluded his article by introducing a cost–benefit analysis of the potential outcomes of using versus not using behavioral treatment: “The assignment of one full-time special-education teacher for 2 years would cost an estimated $40,000, in contrast to the nearly $2 million incurred (in direct costs alone) by each client requiring life-long institutionalization” (p. 9). Lovaas thus discursively presented his construction of the possibility of hope for recovery through behavioral intervention against the background of the possibility (or even probability) of “life-long institutionalization” of one's child, a prospect that may indeed epitomize hopelessness for many parents.
Hope for recovery as the only vision of hope
A second conceptual element of this binary construction of hope versus hopelessness is the representation of hope for recovery not as a vision of hope for young children labeled with autism but as the only vision of hope for children so labeled. In the context of the ongoing reproduction in ABA discourse of the first element of this conceptual dichotomy—the representation of autism as inherently tragic, catastrophic, and hopeless—the concept of hope for recovery stands in stark contrast to this dominant picture of hopelessness and despair and is presented as the only hopeful vision available, or at least, as the only real hope. Recovery thus becomes almost synonymous with hope itself—in the apparent absence of other visions of hope, hope for recovery may be welcomed by those who insist on embracing hopeful visions of futures for young children labeled with autism in spite of the dire prognoses traditionally offered.
The experience of the Taylor family described earlier testifies that what was most distressing for them was that “they were not offered any hope for their son. Rather, they faced the prospect of him never being able to lead an independent life” (van den Nieuwenhof, 1996, page number not available). After learning of Maurice's (1993) experience, who had “apparently helped her autistic daughter to make a full recovery by using the Lovaas (1987) method of healing” (van den Nieuwenhof, 1996, page number not available), they, too, began an ABA program modeled after Lovaas's program, because, “to the Taylors, it represented their only hope of bringing their son back” (van den Nieuwenhof, 1996, page number not available). This family felt that they were not offered any hope for their son, and in this relative absence of hope of any kind, the possibility of recovery through “the Lovaas method of healing” therefore represented to them their only hope for their son.
Maurice (1993) spoke of adjusting to hope following the diagnosis of autism for her daughter and the accompanying guarded prognosis she had been offered: “And once we had adjusted to hope, there was no turning back…the goal was there…Anne-Marie would be whole and normal. She would talk and smile and grow and love. She would recover” (p. 67). For the Maurices, as for the Taylors, hope was something they had not had much of following their daughter's diagnosis, and it required a shift in their thinking, an adjustment, to dare to hope for their daughter. As Maurice embraced the idea of entertaining hope—any hope—for her daughter, that hope was very clearly linked to a particular vision, a particular goal—that she would recover. In this way, hope for young children labeled with autism becomes inextricably linked with hope for recovery in popular ABA discourse. Within the disciplinary confines of this discourse, if one is to embrace hope for one's child at all, recovery is constructed as the only possible basis for that hope and, thus, becomes the desired end, the goal—the vision that is held out, hoped for, and worked toward.
Linking of only hope with ABA
A third conceptual element of this binary construction of hope versus hopelessness is the linking of this only vision of hope with a particular intervention method, ABA. When recovery is constructed in a professional discourse as the singular vision of hope for young children labeled with autism, a vision that is discursively constructed in binary opposition to institutionalization and despair, one cannot help but wonder what parent would not choose to embrace recovery as their hope for their young child? As Carmen eloquently asked me, “It's the only thing that's been scientifically proven to work in recovering kids with autism—why would we do anything else?” It appears to be a self-evident, neutral, commonsense, and straightforward choice—of course one would choose hope over despair, the possibility of recovery over the likelihood of institutionalization. It is hardly surprising that parents who articulate and embrace this particular vision of hope, of recovery, for their son or daughter also often embrace the intervention method, ABA, that is explicitly linked to claims of recovery in this discourse. Indeed, if one embraces recovery as the hoped-for goal for one's child, and if “it's [ABA's] the only thing that's been scientifically proven to work in recovering kids with autism,” then “why would we do anything else?” (Broderick, 2004, p. 1). Why, indeed? Within the context of this discourse, it seems the most logical and commonsensical decision to pursue ABA intervention if one chooses to embrace hope for one's child over despair. However, I would argue that the assumptions underlying this apparently commonsense assertion are ideological and political in nature, and I turn now to the task of deconstructing the self-evidence, neutrality, or “naturalness” of the assumptions in which these discursive practices are grounded.
Recovery (to Normalcy)
If the first element of this conceptualization of hope for recovery in ABA discourse has been its construction in binary opposition to hopelessness and despair, a second integral conceptual element of this conceptualization of hope has been its construction of recovery as recovery (to normalcy). The discourse around recovery from autism as previously illustrated through the biographies and autobiographies of adults who have been labeled with autism has centered on the process of increasing participation and success in many ordinary spheres of life, and those individuals that have been described as recovered may be considered to be those for whom the effects of autism are no longer disabling in any significant or substantially limiting way. However, the construct of recovery from autism within ABA discourse is a qualitatively different one, one that may appear at first to challenge the relevance of the dichotomous constructs of abled–disabled, autistic–recovered, or normal–abnormal, but that, I argue, ultimately reinscribes these dichotomous categories in a profoundly conservative way.
Lovaas and his colleagues (Lovaas, 1971, 1993; Lovaas & Smith, 1989; McEachin, Smith, & Lovaas, 1993) have repeatedly questioned the validity and the usefulness of the construct of autism. He wrote that “the existence of an entity called ‘autism’ is a hypothesis (Rutter, 1987)—an attempt to organize data and direct research—rather than a proven fact” (Lovaas & Smith, 1989, p. 19). “Autism is a construct that may facilitate research or may prematurely freeze or misdirect inquiry into helping children to whom the term is applied (Lovaas, 1971)” (Lovaas & Smith, 1989, p. 20). He wrote of the University of California, Los Angeles (UCLA), Young Autism Project, “An observation on the commonly used constructs of intelligence and autism may be relevant here. Our treatment was not directed at modifying either construct….The success of behavioral treatment seems to make the constructs of intelligence and autism superfluous” (McEachin et al., 1993, p. 625).
However, rather than challenging the relevance of these constructs and the dichotomous categories of ability–disability and normal intelligence–intellectual disability in which they are grounded, the ABA discourse around recovery seeks to challenge the position, the permeability, and indeed the permanence, of the line that delimits one category from the other while maintaining a commitment to the usefulness and veracity of the binary categories themselves. Rather than critiquing or deconstructing the constructs of ability–disability and autism–normalcy, I argue that the discursive practices around recovery from autism in the ABA literature serve to reinscribe the legitimacy and apparent neutrality of these categories, relying as they do on a conservative ideological privileging of normalcy, as illustrated below. Cohen (1998) pointed to the crux of this difference when she cogently observed,
That word “recovery,” the rallying cry of parents of young children with autism who believe in Lovaas and Catherine Maurice, a word otherwise unheard in relation to autism, is a word with an implied promise: normalcy. Your child can be normal. (pp. 158–159)
Recovery, within the ABA discourse community, is not about “fitting smoothly into settings of normal people” (Rimland, 1991, p. 223), as Rimland suggested, a construct that similarly relied on the maintenance of a fundamental division between normal and abnormal. It is, rather, as Cohen (1998) suggested, constructed as being about “be[ing] normal” (italics added, p. 159). Thus, in these discourses-in-practice, the construct of recovery seems to carry the implicit object of recovery (to normalcy) as a basis of hope for young children labeled with autism. Yet, how did the construct of recovery come to be so closely linked with the construct of normalcy in ABA discourse? I turn now to an analysis of Lovaas's (1987) original use of the term recovery and the ways that he discursively constructed the term in the article reporting on his treatment-effect study.
Lovaas's (1987) use of the term recovery
The discourse around recovery from autism popularized by Maurice's (1993) text is rooted in the rhetorical construct put forth by Lovaas (1987) in reporting outcomes for the UCLA Young Autism Project. Lovaas used the term recovery several times throughout the article, but he never explicitly defined its meaning as he used it. Twice, Lovaas directly referred to those children from the experimental group who achieved positive outcomes as recovered (“the recovered children,” p. 8; and “recovered” as a column heading representing the 47% “best outcome” children in Table 3, p. 7), and it is in this article that we can see the rhetorical roots of the association of recovery with normalcy. Although Lovaas never explicitly equated his use of the phrase “normal educational and intellectual functioning” (p. 3) with his use of the term recovery, the two examples noted above coupled with his careful use of the term throughout the rest of the article make that clear implication. In the abstract to Lovaas's (1987) study, he stated that
Follow-up data…showed that 47% achieved normal intellectual and educational functioning, with normal-range IQ scores and successful first grade performance in public schools. Another 40% were mildly retarded and assigned to special classes for the language delayed, and only 10% were profoundly retarded and assigned to classes for the autistic/retarded. (p. 3)
Thus, although Lovaas was later to suggest that the results of this study may have made the constructs of autism and intelligence superfluous, he nevertheless relied heavily on traditional psychological constructs of intelligence in describing the results of this study. Lovaas carefully used the behavioral terminology of “normal functioning” to describe the group of children who achieved best outcome, yet he alternately referred to this best-outcome group of children as recovered, thus repeatedly making an implicit semantic link between his use of the construct recovery and the construct of normalcy.
Interestingly, Lovaas (1987) used no such caution in referring to the remaining 50% of children who did not achieve best outcome. These children were not cautiously described as “functioning as mentally retarded;” rather, they were described as being “mentally retarded.” The metaphoric label of “mental retardation” (Biklen, 2000) was applied to this group of children as if it described a defining feature of their identity. Similarly, by sliding from the use of the careful terminology of normal functioning to the more provocative use of the term recovered, Lovaas semantically moved from an operational term to one that also seemed to describe a defining feature of the children's identities. Thus, an equation is discursively constructed between functioning normally and being recovered. To function normally is to be recovered; to be recovered is to be normal. One might argue that this is something of a semantic leap, although I contend it is a small one if at all, particularly given the similar leap that Lovaas himself glossed through in his descriptions of the children who were not in the best-outcome group. The children who scored, that is, functioned, in the range ascribed to “mental retardation” were not represented as functioning as “mentally retarded” but were represented as being “mentally retarded.” This would appear then, to be a semantic leap that Lovaas himself felt comfortable in making. If the children who functioned in the range of “mental retardation” were “mentally retarded,” then one might reasonably infer that the children who functioned in the range of normalcy were “normal.”
Lovaas (1987) began his article by summarizing the positive and negative points of experimental behavioral research on children labeled with autism. In summarizing the negative points of empirical research conducted prior to his present study, he stated, “Treatment gains have been specific to the particular environment in which the client was treated, substantial relapse has been observed at follow-up, and no client has been reported as recovered” (p. 3). The Young Autism Project was specifically designed to address these shortcomings of clinical behavioral research. By specifically identifying those three shortcomings in the introduction, the author rhetorically implied an intent to illustrate that his research differed from prior research in three significant ways: (a) that participants' treatment gains were maintained across environments because they were taught across environments (p. 3); (b) that “the achievements of experimental group subjects have remained stable” (pp. 6–7); and (c) that some of his participants were recovered. Indeed, the first two claims were explicitly made in the article, whereas the third was made only obliquely, and addressed implicitly, throughout the article. It is this subtext around recovery and normalcy that has been taken up so powerfully in the discourse around ABA since the publication of Lovaas's (1987) study.
Rather than explicitly defining those children who achieved positive outcomes as recovered, Lovaas (1987) referred to the remainder of the experimental group as “subjects who did not recover” (p. 5), thus strengthening his implied equation of best outcome with recovery. In describing the culmination and eventual termination of treatment procedures for the children involved in the study, Lovaas stated,
All subjects who went on to a normal first grade were reduced in treatment from the 40 hr per week characteristic of the first 2 years to 10 hr or less per week during kindergarten….Subjects who did not recover in the experimental group received 40 hr or more per week of one-to-one treatment for more than 6 years (more than 14,000 hr of one-to-one treatment) with some improvement shown each year but with only one subject recovering. (p. 5)
By referring to “subjects who did not recover” as opposed to reporting on “all subjects who went on to a normal first grade,” Lovaas again implied that the children who went on to a normal first grade were recovered, without explicitly making that statement or defining his use of the term, recover. This was the third time in the article that this provocative term was used without what behavioral researchers would call an operational definition. I do not mean to suggest, as Cohen (1998) has, that an operational definition of recovery needs to be established. However, given the epistemological (positivist), methodological (quantitative, experimental, treatment–effect design), and theoretical (operant behaviorism) grounding of Lovaas's research, it seems unlikely that a behavioral researcher would fail to provide an operational definition for such a provocative description of an outcome. This omission suggests that perhaps the power of the term recovery lies in its rhetorical, rather than its operational, use. Thus, the term did not neutrally describe an observed outcome; rather, it constructed the framework through which we understand and constitute our own perceptions of outcome for young children labeled with autism within the discursive practices associated with ABA.
Lovaas (1987) did acknowledge the potentially problematic usage of the term recovery, stating that, “The term normal functioning has been used to describe children who successfully passed normal first grade and achieved an average IQ on the WISC-R. But questions can be asked about whether these children truly recovered from autism” (p. 8, italics in original). Lovaas (1987) pointed out that “certain residual deficits may remain in the normal functioning group that cannot be detected by teachers and parents and can only be isolated on closer psychological assessment, particularly as these children grow older” (p. 8). Thus, the stated basis for Lovaas's reservation about the use of the term recovery was the possibility of residual deficits that may be detected as the children grew older. However, McEachin et al.'s (1993) follow-up study reported that 8 of the best-outcome children “were indistinguishable from average children on tests of intelligence and adaptive behavior” (p. 359). Thus, the stated source of Lovaas's hesitancy in applying the term recovered to these children seems to be rectified, and these findings would seem to confirm his original implication that the best-outcome children were recovered.
Other authors have critiqued Lovaas and his colleagues on empirical grounds for their use of the term recovery with its connotative relationship to the concept of “cure” (e.g., Gresham & MacMillan, 1997). Lovaas et al. responded by backpedaling somewhat on the use of the specific term recovery. In their reply to Gresham and MacMillan, Smith and Lovaas (1997) stated,
We wrote that it was unclear whether recovery was an appropriate term to apply to the participants in our project (Lovaas, 1987, p. 8), and we have never even considered cure as a possibility….The use of cure would certainly be unethical because it would imply falsely that we had identified the cause of the autism displayed by children in the study, and then removed this cause….Instead of “recovery” or “cure,” we have used either “normal functioning” (referring to performance in the average range across outcome measures) or “best outcome” (referring to a subgroup that appeared to have a much ore favorable treatment response than other intensively treated children)….On one occasion, we used “recovered” as a column header in a table (Lovaas, 1987, Table 3). In retrospect, this may have caused unnecessary confusion (which we regret), but we did not claim recovery or cure. (pp. 203–204, italics in original)
Smith and Lovaas (1997) also asserted that Gresham and MacMillan's (1997) statement that the UCLA program “claims to produce ‘recovery’” (p. 186) “verges on slander” (Smith & Lovaas, p. 203), due to the unethical nature of such a claim. However, in Lovaas's (1987) concluding discussion, he remarked,
On the basis of testing to date, the recovered children show no permanent intellectual or behavioral deficits and their language appears normal, contrary to the position that many have postulated (Rutter, 1974; Churchill, 1978) but consistent with Kanner's (1943) position that autistic children possess potentially normal or superior intelligence. (p. 8)
Following the allusions and rhetorical implications made throughout the rest of the article, the best-outcome children were finally referred to directly, and unproblematically, as the recovered children, language that is indeed tantamount to a claim of recovery.
However, the salient issue is not whether Lovaas or other behavioral researchers use the term recovery. Indeed, in wake of several critiques of his use of the term recovery (Baer, 1993; Gresham & MacMillan, 1997; Mundy, 1993), Lovaas refrained from using such terminology in subsequent peer-reviewed publications (see Smith, Eikeseth, Klevstrand, & Lovaas, 1997; Smith & Lovaas, 1998), although he continued to use it in non–peer-reviewed publications, with parents as a likely audience (and others have continued to draw on the construct of recovery [cf. Kotler, 1994; Mulick, 1999]). For example, Lovaas wrote, in a foreword to an autobiographical narrative with a likely audience of parents, rather than professionals (Johnson & Crowder, 1994): “Over the last few years, there is evidence that some children can be helped to recover” (Lovaas, 1994, p. 7). An additional example is Lovaas's (2002) training manual entitled Teaching Individuals with Developmental Delays: Basic Intervention Techniques, wherein he wrote:
Most parents have gained some information about early and intensive behavioral intervention and may have been led to believe that 47% of all the children treated with this intervention reach normal educational, emotional, and social functioning. However, this statistic has been obtained only under the most optimal clinic-based treatment conditions. Workshop-based treatment is estimated to yield a recovery rate between 10% and 20% provided the workshop leader is qualified. The recovery outcome for workshops led by persons who are not qualified may not exceed 5%. (Lovaas, 2002, p. 25)
The salient issue is that engagement with this discursive construct of recovery relies on and reinscribes particular ideological beliefs about the nature of disability and the constructs of normal and abnormal. Autism is constructed as a disability, certainly, but one from which one may recover and gain (or regain) the invisible privilege of the status of normalcy.
Maurice (1993): Recovery and normalcy
If Lovaas's use of the construct of normalcy in professional publication created an implied notion of recovery (to normalcy), we can easily see how this powerful notion was taken up and further reified in Maurice's (1993) autobiographical text. She described her transition from thinking of her own child as normal to thinking of her as autistic:
Anne-Marie was different, not only from other children but from the little girl we thought we knew. Whom had we known? We had been thinking of her, in spite of our worries, as a normal child, filled with the needs and desires and even the pastimes of a normal child….Stripped of our illusions, we found Anne-Marie to be suddenly alien. (p. 31)
The problem was that now “it” was her, it was who she was. She “was” autistic, as someone “is” a man, or a woman, or short or tall….She did not “have” autism; she was autistic….[N]o longer could we find a self in her. (pp. 45–46)
Maurice described that she “had been thinking of her…as a normal child,” but after having a label of autism applied to her daughter, she began instead to think of and construct Anne-Marie within the context of that disability label. Within that framework, she came to understand her prior perception of Anne-Marie as a normal child as an illusion. Although Anne-Marie may at first have been constructed by her parents as normal, she now, understood through the framework of the construct of autism, was not. Autism became who she was, and the identity ascribed to her shifted from normal to autistic—disabled, abnormal. Maurice further reflected on this transition:
One issue that was particularly confusing and distressing for us concerned Anne-Marie's earlier, seemingly normal period of development. She had had words. Why had she lost them? Where had they gone? How could she have been normal and now be abnormal? Didn't the presence of some language in the past mean that at least the potential to speak was still there? (p. 50)
Although not explicitly stated, this particular passage in Maurice's text elicits a query in the reader's mind: Anne-Marie “had had words,” but she had “lost them;” she had “been normal,” but now was “abnormal.” In considering the question, “Didn't the presence of some language in the past mean that at least the potential to speak was still there?,” the reader is left to infer a second, analogous question: “Didn't the presence of normalcy in the past mean that at least the potential for normalcy was still there?” This is a provocative consideration, and Maurice alluded to the powerful nature of the construct of normalcy when she admitted that “the idea of ‘normalcy,’ the parameters of what was considered normal development and behavior, began to obsess me” (p. 14).
Indeed, the notion of recovery to normalcy may be perceived to be particularly appealing and practical when applied to young children labeled with autism, many of whom may have already enjoyed the status accorded to “normal” children and for whom the emergence of particular actions and characteristics resulted in the subsequent acquisition of a label of autism and a status of disability, of abnormality. Thus, given that many children are not labeled with autism until they are 2, 3, or even 4 years of age, the notion of recovery to normalcy in young children labeled with autism in many ways may resonate with the common experience of many parents that their child used to “be normal” and now somehow, suddenly, is not. By definition, to recover is to regain possession of something; in this case, the implication is to regain the status of normalcy previously possessed or accorded that was somehow lost in the onset and labeling of autism in a young child. This tacit understanding and use of the term recovery (to normalcy) have gone largely unquestioned and unexamined in the ABA literature, except for a few ventures into the aforementioned positivist queries regarding whether it is possible to be, and whether particular children are, empirically, objectively, verifiably recovered. However, Kephart (1998), herself a parent of a young child labeled with autism, theorized around her own experiences with her son's labeling and educational interventions by deftly posing the critical questions that others have not:
What, in the end, are you fighting for: Normal? Is normal possible? Can it be defined? Is it best achieved by holing up in the offices of therapists, in special classrooms, in isolated exercises, in simulating living, while everyday “normal” happens casually on the other side of the wall? And is normal superior to what the child inherently is, to what he aspires to, fights to become, every second of his day? (p. 11)
In effect, Kephart named the invisible ideological position of privilege on which the construct of recovery (to normalcy) tacitly rests, a position that Thomson (1997) designated “the normate” (p. 8):
This neologism names the veiled subject position of cultural self, the figure outlined by the array of deviant others whose marked bodies shore up the normate's boundaries. The term normate usefully designates the social figure through which people can represent themselves as definitive human beings. Normate, then, is the constructed identity of those who, by way of the bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them. (p. 8, italics in original)
Although Thomson limited her theoretical analysis to physical disability, as culturally inscribed on the “extraordinary bodies” of individuals who are physically disabled, her analysis is relevant here and is easily expanded to account for the particular example of autism.
Although autism is not generally understood to be a physical disability, it is nevertheless inscribed in and on unusual bodies, bodies that move and posture and respond and act in extraordinary ways. Although now understood to be a complex neurological difference, or manifestation of human neurological diversity (Broderick & Ne'eman, 2008), autism continues to be largely a behaviorally defined syndrome; therefore, by definition, one has autism when one is observed to move, act, respond, behave in particular ways, ways that have been designated by the American Psychiatric Association as disordered (APA, 1994). Thus, children whose bodies appeared to be normal from birth, with none of the visible physical, culturally stigmatized differences often associated with the bodies of children with other developmental disabilities (i.e., Down syndrome or cerebral palsy), become disabled when their difference becomes embodied through their actions. Thus, the bodies of these children become marked as deviant when they begin to twirl their fingers incessantly before their eyes, when their primary eye gaze is oblique rather than direct, when they walk on their toes, when their bodies' postures hyperextend and stiffen on being touched, when they move their bodies and act in unexpected or repetitive ways, and so on.
From the inception of the construct of autism, it has been repeatedly noted that young children so labeled “look normal,” contrary to cultural expectations that disability will be accompanied by physical markers on the body. Kanner (1943) first remarked that the group of children he studied had “strikingly intelligent physiognomies” (p. 247). Children labeled with autism are also often constructed as strikingly beautiful; indeed, Frith (1989) opened her text on autism with the following passage:
“She was so pretty—hazel eyes with long curling eyelashes and finely tapered eyebrows, flaxen coloured curls and such a sweet, far-away expression.…” The typical image of the child suffering from “Autism” is most surprising. Those familiar with images of children who suffer from other serious developmental disorders know that these children look handicapped. In contrast, more often than not, the young autistic child strikes the observer with a haunting and somehow other-worldly beauty. (p. 1, italics in original)
And Maurice (1993), on first suspecting some differences in her young daughter's development, reassured herself by remarking, “We didn't know what her IQ was, but she looked intelligent enough” (p. 18).
Thus, children are often constructed as looking intelligent and looking beautiful, two very powerful facets of the privileged cultural position of normalcy, facets that may appear to be incongruent with the stigmatized status of tragic disability that is associated with autism. Maurice (1993) pointed to this incongruence when she asked herself, “How could she have been normal and now be abnormal?” (p. 50). However, this conceptual incongruence can be understood as an artifact of the binary opposition of the constructs of ability–disability and normal–abnormal. Gould (1996) referred to this phenomenon as “dichotomization, or our desire to parse complex and continuous reality into divisions by two (smart and stupid, black and white)” (p. 27) and listed it, along with its companion phenomena of reductionism, reification, and hierarchy, as “some of the oldest issues and errors of our philosophical tradition” (p. 27). The tradition to which Gould referred is, of course, the philosophical heritage of positivism, and it is these deeply embedded and largely invisible assumptions of the culture of positivism that shape our cultural expectations that a child cannot have been normal and now be abnormal without some precipitating event to account for this radical shift from a position of cultural privilege to a position of cultural stigmatization.
Kephart's (1998) question, “What, in the end, are you fighting for? Normal?” (p. 11), exposed and destabilized the ideological assumption that normalcy is the presumed end that we are “fighting for,” and the corollary presumption that normal is “superior to what the child inherently is, to what he aspires to, fights to become, every second of his day” (p. 11). In so doing, Kephart disrupted the discourse in practice around recovery (to normalcy) in ABA discourse and created spaces for engagement with alternative conceptualizations of hope for young children labeled with autism, embedded in alternative ideologies, alternative discourses, and alternative practices.
Alternative Visions of Hope: Postmodern Possibilities
It may be instructive at this point to briefly explore the use and connotations of the meaning of the term recovery in another disability-related discourse community—specifically, the use of the term in the literature on and by survivors of psychiatric illness, which is qualitatively different from the use of the term recovery (to normalcy) within the ABA discourse community. For example, according to Davidson, with O'Connell, Sells, and Staeheli (2003):
At its most basic level, the recovery model argues that psychiatric disability is only one aspect of the whole person (Corrigan and Penn, 1998) and that recovery from psychiatric disorder does not require remission of symptoms or other deficits. In other words, and unlike in most physical illnesses, people may consider themselves to be “in recovery” from a psychiatric disorder while continuing to have, and be affected by, the disorder. What recovery seems to entail is that people overcome the effects of being a mental patient—including rejection from society, poverty, substandard housing, social isolation, unemployment, loss of valued social roles and identity, and loss of sense of self and purpose in live—in order to retain, or resume, some degree of control over their own lives (Anthonly, 1993; Deegan, 1996a, 1996b). (p. 38)
Thus, within the psychiatric survivor discourse, recovery is not fundamentally or primarily about reduction or remission of symptoms or other perceived deficits to more closely approximate or regain a status of behavioral or psychiatric normalcy. Instead, this notion of recovery acknowledges the discriminatory and disabling circumstances that one often experiences in relation to the cultural stigma and concurrent loss of cultural capital associated with one's identity as a psychiatric patient. This focus on the social contexts of recovery is not in place of a focus on symptom reduction but is the undeniable and central context within which one's efforts toward symptom reduction are couched. Thus, according to Mezzina et al. (2006):
Recovery, therefore, has also to do—in addition to symptom reduction and illness management—with restitution of the person's rights to citizenship, including the right to social inclusion. As a result, the recovery process cannot take place outside of or apart from the social contexts in which the person lives, especially as one of its main aims is to restore to the person the possibility of accessing those normal social settings from which he or she has been extruded by virtue of his or her illness and/or societal stigma. (p. 72)
Indeed, it seems that this use of the term recovery within the psychiatric survivors' literature agrees more with the earliest uses of the term recovery in autism literature discussed above, a discourse in which being recovered or recovering are not mutually exclusive with being autistic and in which the focus of the construct is on one's successful reentry to and participation in social contexts and relationships from which one may have been excluded. Exclusion could have been due, in part, to experiences of autism symptoms that might have presented barriers to active participation (e.g., significant communication impairments) and/or to opportunities for such participation being limited because of the cultural stigma associated with being an autistic individual (e.g., being placed in a segregated autism program in school rather than having had access to inclusive academic schooling, due to the autism label). Significantly, Mezzina et al. (2006) noted,
Certainly it has been the case for much of the past two hundred years that we have practiced as if recovery was a precondition of citizenship, in that people had to show improvement prior to being released from the hospital, returning to work, living independently, etc. (Davidson et al., 2001). Perhaps what we are learning now, however, is that citizenship needs to be viewed as much as a precondition for recovery as one of its consequences. (p. 79, italics in original)
In extrapolating from their analysis of the construct of recovery in the psychiatric survivors' movement, we may make an analogous claim in relation to the construct of recovery in autism discourse: Within the discursive formation of the construct of recovery (to normalcy) that has emerged within the ABA discourse community in the past 2 decades, a return to or an approximation of cultural markers of normalcy have been constituted as preconditions for the designation of recovery and, hence, for one's participation in and access to, for example, inclusive academic schooling. Indeed, in Lovaas's (1987) study, children were identified as recovered by virtue of their “normal-range IQ scores” (p. 3) and their placement in general education, first-grade classrooms. Students' educational outcomes (i.e., the nature of their educational placement) were determined by their approximations of normalcy as evidenced by their performances on standardized measures of intelligence. That is, there were no students who continued to experience symptoms of autism that might have significantly impaired their ability to perform successfully on a standardized assessment measure (e.g., experiencing significant impairment in expressive verbal language) who were afforded the opportunity to participate in general education classrooms. Such children were, rather, “assigned to special classes for the language delayed…[or] to classes for the autistic/retarded” (p. 3). In this way, we can say that within ABA discourse the construct of recovery (to normalcy) informs educational practice in particular ways that proceed as if recovery were a precondition to full citizenship and full academic participation.
I am compelled to return to Danforth's (1997) cogent query: “On what basis hope?” If particular visions of hope inform educational decision making for young children with labels of autism, then what should the basis of these hopes be? In posing such questions in a postmodern age, Danforth reminded us that “the scientific goal of progressively finding and describing truth is thus replaced by the moral and political goals of supporting human freedom and community” (p. 100). If we are to center the “moral and political goals of supporting human freedom and community,” a question I ask, then, is, What might the educational experiences of young children labeled with autism look like if citizenship were viewed as a precondition for recovery (in the sense of recovering from disablement and social stigma and discrimination) rather than as one of its outcomes? It is clear that hope plays a significant role in educational decision making. To envision hopes for a future wherein students with labels of autism and other disabilities are presumed to be competent, where they are provided with the supports to communicate and to participate in meaningful ways, and where they are understood to be valuable and reciprocating members of a public citizenry is to envision moral goals. To create the conditions necessary to realize these possibilities and to facilitate this recovery are to engage in radical political praxis. Toward that end, I advocate for envisioning and enacting these alternative visions of hope for young children labeled with autism, and for claiming the moral and political legitimacy of this project.
Editor-in-Charge: Christopher Kliewer
Alicia A. Broderick, PhD (email@example.com), Assistant Professor of Education, Teachers College, Columbia University, Department of Curriculum & Teaching, Box 31, 525 West 120th St., New York, NY 10027.