Autism as Rhetoric: Exploring Watershed Rhetorical Moments in Applied Behavior Analysis Discourse Teachers College, Columbia University

Keywords:

Applied behavior analysis, autism, Autism Speaks, parenting, recovery, rhetoric

Abstract

This manuscript offers an analysis of what I argue are three watershed moments in contemporary autism and applied behavior analysis (ABA) rhetoric (1987-2010). The first of these moments is the 1987 publication of O. I. Lovaas's treatment effect study, which introduced the rhetoric of recovery from autism and linked this rhetorical construct with a particular intervention methodology—ABA. The second moment consists in the 1993 publication of Catherine Maurice's autobiographical account of employing Lovaas-style ABA intervention programs with her two young children—an account that both popularizes Lovaas's rhetorical construct of recovery and reiterates its linking with ABA, but more significantly, that also introduces to popular autism discourse the rhetoric of science as a means of constituting the legitimacy of ABA. The third watershed moment in contemporary autism rhetoric is the 2005 establishment of the organization Autism Speaks, which has effectively changed the face of autism rhetoric through its comprehensive deployment of corporate-style rhetorical and political strategy.

Note: The author would like to gratefully acknowledge the very helpful critical feedback on an earlier draft of the manuscript offered by the special issue editors, John Duffy and Melanie Yergeau, as well as an anonymous peer reviewer.

Introduction: Autism as Rhetoric

"Disability," as noted by guest editors John Duffy and Melanie Yergeau in their call for proposals for this special issue of Disability Studies Quarterly on Disability and Rhetoric, "is inherently rhetorical." Indeed, one of the pivotal contributions of disability studies (DS) scholarship in recent decades has been the incisive excavation of the ways in which disability constitutes and operates as a complex system of cultural representation—of discursive practices, ideologies, and always, of power—and several authors have already offered insightful and incisive analyses of cultural representations of autism specifically (Murray, 2008; Nadesan, 2005; Osteen, 2009). Rhetoric is of course an inherent part of systems of representation through language and other signifiers (including visual symbols as well as text, circulating through multiple and ever-expanding forms of print and electronic media). In this article, I briefly examine the specific identity and/or disability category of "autism" as rhetoric. Because autism is fundamentally discursive, it cannot exist outside of, or prior to, rhetoric. Rhetoric is, and always has been, integral to what autism means, what it is, and therefore (critically), what could or should be desirable, appropriate, or dominant ways of living within, understanding, interacting with, or responding to autism's shifting ontology at any given historical moment.

In the introduction to their edited text exploring the intersections of rhetoric and disability studies (2001a), Wilson and Lewiecki-Wilson (2001b) contend that postmodern (as opposed to classical) rhetoricians argue that

rhetoric is not a neutral "instrument" to reflect or describe the world, not the art of "rational" debate, but the art of critique, refutation, position, and action. Understanding that all language practices are positioned and interested, postmodern rhetoricians analyze and study the history of the relations between language and power. (p. 2)

That is, language is not understood to be reflective of but rather actively constitutive of meaning, understanding, identity, and experience of, in this case, disability. They argue further that postmodern rhetoricians engage in rhetorical analyses beyond specific texts to "investigate the interconnections of language and material practices" (p. 3). That is, how might one's rhetorical and ontological understanding(s) of what autism is directly inform (and in many ways, constrain), in very material ways, the ways in which one is likely to experience being autistic? Having an autistic child, neighbor, student, or colleague? What material realities do particular rhetorical understandings of autism create? What material possibilities might they obscure? (Broderick, 2010; Broderick & Ne'eman, 2008).

It is beyond the scope of this paper to trace the entirety of the history of autism as rhetoric. However, Wilson and Lewiecki-Wilson (2001b) argue that the work of "reassigning meaning" (Linton, 1998) to disability must "begin with analyzing the ways the disabled have been and are inscribed in language and culture" (p. 4). Thus, I focus my attention in this manuscript on the ways in which the autistic have been and are inscribed in language and in culture within the rhetoric of a particular discourse community—the ABA autism discourse community—and more narrowly, on what I argue is the increasingly deliberate, pervasive, and skillful use of rhetorical devices within that discourse community in the past 25 years. I focus my attention particularly on the ABA discourse community in large part due to the increasing dominance that this particular discourse community has come to exercise in popular autism discourse during this time period.

I analyze three key, watershed rhetorical "moments" in autism and ABA's recent discursive history: The first of these moments is the publication of Lovaas's (1987) treatment effect study reporting on an operant behavioral autism intervention program. The second is Maurice's (1993) publication of the autobiographical account of her own implementation of Lovaas's intervention program with her own children, and their subsequent "recovery from autism." The third of these pivotal moments in autism and ABA's recent discursive history is the February 2005 founding of the organization Autism Speaks. These rhetorical "moments" are, of course, not entirely temporal, and to the extent that they are temporal, are not brief and finite, as the term "moment" might imply. They are, rather, recursive and cumulative, not in an additive sense but, instead, in the sense that each of these rhetorical moments includes and incorporates and revises and reinvents the seeds of the earlier moments in a variety of complex and innovative ways.

Each of these moments consists in significant cultural shifts either in rhetorical content or concept (representations, themes, metaphors) and/or in rhetorical strategy. Lovaas (1987) changed the face of autism rhetoric as we currently know it, introducing in his publication the rhetorical constitution of the notion of "recovery" from autism, and importantly, the explicit linking of a particular intervention approach (ABA) with that construct of recovery. Maurice (1993) further shaped the face of contemporary autism rhetoric by popularizing Lovaas's rhetoric and widely disseminating it into American popular culture. Her New York Times bestseller both popularizes Lovaas's rhetorical construct of recovery from autism as well as reiterates its exclusive (at that time) linking with the particular intervention methodology, ABA. However, her text offers a third, and arguably more significant, contribution to contemporary autism rhetoric: the rhetorical constitution of ABA methodology as being the only "scientific" intervention approach for young children with labels of autism. Lastly, the 2005 establishment of the organization Autism Speaks, which describes itself as "North America's largest autism science and advocacy organization," has had possibly the most powerful and pervasive impact to date on contemporary autism rhetoric. While Autism Speaks does recursively incorporate and embrace the rhetoric of science noted above, interestingly enough, it discursively backgrounds, rather than foregrounds, the construct of recovery within the organization's rhetoric. The organization has made two main rhetorical contributions to contemporary autism rhetoric, the latter of which is arguably the more powerful and pervasive: (a) the rhetorical constitution of autism as enemy through its metaphoric representation of autism as disease, epidemic, and abductor (Broderick & Ne'eman, 2008; Broderick, 2010); and (b) the skillful, systematic, pervasive, and global deployment of these and other rhetorical devices through its corporate-style, neoliberal, market approach to cultural and political rhetoric, deploying its rhetorical tactics and strategies more as a powerful corporate lobbying machine than as a traditional disability advocacy organization. Each of these assertions will be explicated in the sections that follow, and, in conclusion, I revisit these particular examples of autism and ABA rhetoric in light of the broader context of rhetorical and epistemological movements toward "evidence-based practices" (Sandler & Apple, 2010).

Rhetorical Moment #1: 1987

"Recovery" from autism: The rhetorical constitution of hope

I have argued elsewhere (Broderick, 2004; Broderick, 2009) that the rhetorical construction of "recovery" from autism in ABA discourse constitutes an implicit rhetorical claim of "recovery [to normalcy]," and that the conceptual genesis of this particular rhetorical claim in autism discourse can be pinpointed in O. I. Lovaas's (1987) publication reporting on the results of a treatment-effect study he refers to as the Young Autism Project. In reporting on the results of the Young Autism Project, Lovaas (1987) uses the term "recovery" or "recovered" multiple times in either direct or implied reference to what he alternately refers to as the "best outcome" or "normal functioning" group, a group that constitutes 47% of the children in the study. The piece is a rhetorical masterpiece (an admittedly unusual assessment of an academic report on a treatment-effect study), and throughout the manuscript Lovaas's careful usage of the term "recovery" in conjunction with "normal functioning" implies that 47% of the children in the study achieved recovery to normalcy as a direct result of the treatment intervention—40 hours a week of ABA discrete trial instruction, inclusive of the systematic use of contingent rewards for desired behavior and of contingent aversives as punishment for undesired behavior. In a detailed analysis of the rhetorical construction of this construct of "recovery [to normalcy]", I elsewhere (2009) note:

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. (p. 274)

It is this rhetorical usage of the construct of recovery [to normalcy] that has been the basis of the profound impact that this study has had upon contemporary autism discourse. Thus the strategy of deploying a powerful rhetorical device in an academic report of a treatment-effect study, coupled with the narrative power of the particular rhetorical device that he employed (the notion of "recovery" from autism) together mark this publication as a significant moment in autism's rhetorical history, precisely because of the profound and prolonged cultural impact of Lovaas's rhetoric of recovery.

The operational definition of best outcome in the Lovaas (1987) study was defined as participants achieving "normal-range IQ scores and successful first grade performance in public schools" (p. 3), and 47% of the treatment group were described as "best outcome." These findings may be significant, impressive even, perhaps, but not particularly culturally provocative. However, recall that this 47% constituting "best outcome" within the treatment group were alternately referred to in the manuscript, both directly (twice) as well as implicitly (multiple times), as "recovered" (c.f. Broderick, 2009 for a detailed discursive analysis of the use of the term "recovery" in Lovaas [1987]). It is the rhetorical framing of the outcome data in terms of recovery from autism, rather than the data themselves, that proved to be so culturally provocative and enduring.

People who read these findings (and particularly those who read subsequent popularized publicization of these findings) do not hear, "nearly half of children who participated in this research protocol successfully completed first grade in public schools," or "nearly half of children who participated in this protocol acquired the linguistic and motor skills necessary to participate in and successfully respond to standardized IQ tests." People who read (and perhaps more importantly, who read about) this study hear, "nearly half of all children who participated in this protocol have recovered" or "nearly half of all children who participated in this protocol are normal now." And the implicit rhetorical "therefore" of these findings is, "and if your [autistic/disabled/abnormal] child participates in an identical intervention protocol, he or she has nearly a 1 in 2 chance of being normal again." According to Cohen (1998),

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. (p. 158-159)

Lovaas's rhetorical construct of "recovery [to normalcy]" has proven to be so powerful and so culturally resonant for nearly 25 years now precisely because it taps into parents' hopes for their children while simultaneously tapping into parents' fears, grounded though they may be in ableist cultural values. In an earlier study (Broderick, 2004), I asked a parent, Carmen, who was using an ABA intervention program with her son what her goals for him were. 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). Thus, nondisabled parents' cultural fears of abnormalcy, of their child being disabled or "handicapped"—fears arising from the deeply ableist culture in which we are all immersed—are assuaged by and countered with a deeply resonating (though no less ableist) rhetorical conceptualization of hope: your child can recover. Your child can be normal again. Why would you do anything else?

Rhetorical Moment #2: 1993

"Scientific proof": The rhetorical constitution of legitimacy

Although Lovaas set the stage by introducing the rhetorical construct of "recovery" to ABA discourse in his (1987) treatment-effect study, the construct was popularized with parents and inextricably linked with hope by Maurice's (1993) text and the rather frenetic public discourse that ensued following the publication of her autobiographical account of the "recovery" of her two young children from autism. 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 particularly to the popular literature on applied behavior analysis as an intervention method. When the book was published, reviewers were largely positive in their reviews, and one writes:

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)

I shall return to the construct of "real hope" shortly. However, it is clear from this review that Maurice's text both popularizes Lovaas's rhetorical construction of recovery from autism, as well as reiterates claims that explicitly link this rhetorical construct with ABA (i.e., "behavior modification") as an intervention methodology.

One may argue that rhetoric is at its most powerful when it functions most successfully ideologically—that is, when the systems of ideas that it draws upon and represents are so naturalized and appear to be so commonsensical that one may fail to even notice what it obscures or precludes. Wilson and Lewiecki-Wilson (2001) argue that language and rhetoric play a performative function, "calling this naturalized meaning of disability into circulation," and in so doing, "actually restrict[ing] thinking about disability in any other way" (p. 2). This explicit linking of the rhetorical construct of recovery [to normalcy] with a particular intervention methodology (ABA) functions ideologically to obscure other ways of understanding autism and autistic identity, while foregrounding and naturalizing the notion of "intervention" as the only commonsense response to this rhetorical and ontological performance of autism.

Maurice (1993) describes the first time she heard about Lovaas's (1987) study, noting that she received a call from a relative telling her about an article she'd read in a popular publication, saying the article was:

"about a Dr. Lovaas, at UCLA. It says he's recovering some kids from autism…" Recovering some kids from autism? No one we were talking to had mentioned the word recovery. Could this be true?…. On the face of it, the idea [of using intensive behavior modification on their children] was nothing short of appalling to us….Nevertheless, if someone was recovering kids with behavior modification, we had better look into it seriously. (pp. 61-63)

It is clear from this testimony that the rhetorical construct of recovery from autism was a powerful one, powerful enough even to overcome Maurice's and her husband's initial distaste with the thought of subjecting their children to intensive ABA intervention programs. Indeed, in the earlier study cited above (2004, 2009), in addition to asking her goals, I also report asking Carmen why she had originally made the decision to pursue an ABA intervention approach with her son. She looked at me rather quizzically and asked, "It's the only thing that's been scientifically proven to work in recovering kids with autism—why would we do anything else?" (Broderick, 2009, p. 263). Why, indeed? Implicit in the testimony of both Carmen and Maurice is the assumption that one must do something upon coming to understand that one is the parent of an autistic child, one must intervene in some sort of active way, and that this intervention must involve changing or altering the child in some way. The question considered by the parents above appears not to be whether to intervene, but rather, how to do so. The material impact of this particular rhetorical performance thus restricts thinking about autism in other, more divergent, and potentially more emancipatory ways, a consideration that I shall return to in the concluding discussion.

Thus, while Maurice popularized Lovaas's rhetorical construct of recovery from autism and inextricably linked it to the intervention methodology of ABA, she did so through the skillful deployment of another powerful rhetorical device—by constructing ABA as "scientific," and therefore, legitimate, neutral, and real ("one area of research offering real hope" [Wolfe, 1993, p. 14a]). Indeed, the rhetoric of science crafted throughout Maurice's text serves not only to position ABA as scientific and legitimate, but simultaneously serves to position virtually every other intervention approach as comparatively illegitimate (and does not even leave room for imagining the absence of "intervention" as a possibility).

The rhetoric of "science" figures prominently in Maurice's (1993) autobiographical text, and her rhetorical constitution of the construct appears to be integral to realizing the vision of hope she holds for her son and daughter—that of "recovery" from autism. Holding a Ph.D. herself in French literature and criticism, Maurice is no stranger or neophyte to the workings and the power of rhetoric. In attempting, somehow, to position herself, Lovaas, and ABA in general as operating outside of rhetoric, she masterfully deploys a powerful and cohesive set of rhetorical strategies throughout her autobiographical text, as well as in her subsequent co-edited text, Behavioral Intervention for Young Children with Autism: A Manual for Parents and Professionals (Maurice, Green, & Luce, 1996).

She describes herself in her autobiography as having "crave[d]….Objectivity. Empirical research" (p. 16) in her search for information about autism. She positions "science" as something entirely different from and other than her own training in the humanities and social sciences:

After gamely agreeing to look at beloved works of poetry and fiction through the diverse lenses of structuralism, poststructuralism, phenomenology, feminist criticism, deconstruction, I pounced on medicine like some poor fact-starved rat. I was tired of truth as a relative term, a shift of one's perspective, a way of seeing. Information was what I wanted to try on for size. Science. A corpus of knowledge validated by whether its data held together empirically, not by whether its practitioners had the gift of gab. (p. 16)

In forming a particular construct of science, Maurice uses lexical and discursive markers that clearly elicit a particular image of science in the reader's head—the constructs of "facts," "data," "validation," and "empiricism" are central to her description, as is the notion of a "corpus of knowledge." In addition to the image of a "body" of scientific knowledge in this example, elsewhere Maurice draws upon Enlightenment imagery by describing "science" as "voices of reason in the wilderness" (p. 117) and by referring to "the light of scientific objectivity" (p. 285). Maurice also explicitly impresses upon her readers a very specific image of science when she posits that "psychology could actually aspire to the rigorous methodology of a science—verifiable data, accountability, controlled research, openness to peer scrutiny…" (p. 168).

Indeed, the rhetoric of science in Maurice's account is further bolstered by the bookended foreword and afterword, respectively authored by Bernard Rimland, Director of Autism Research International, and Lovaas himself. In the foreword, Rimland (1993) describes behavior modification as "a scientifically validated, time-tested curriculum for the effective teaching of autistic and other learning-impaired children" (p. xv). In the afterword, Lovaas (1993) writes that "this book also demonstrates the importance of selecting treatments that are supported with scientific data" (p. 324), and expresses his hope and confidence that "science will generate effective treatments for autism" (p. 325).

Since the publication of Maurice's (1993) text, an abundant and active popular discourse around ABA has emerged in popular print (newspapers and magazines) and online and multimedia texts (listservs, websites, videos, etc.), driven largely by parents sharing stories of their own children and of their own struggles to access and fund home ABA programs. Much of the popular discourse around ABA as an early intervention for young children labeled with autism points to Maurice's (1993) story and Lovaas's (1987) study as touchstones (even referring to ABA generally as "the Lovaas method"), and systematically invokes the concept of "science" in defining and advocating for ABA. Indeed, a feature article on autism and ABA in the New York Times states that "comprehensive applied behavioral analysis, based on the principles set forth by B. F. Skinner in the 1930's, is the only program backed by scientific data" (Feller, 1999). Other feature articles in the popular press similarly construct ABA as "scientific," referring to "the science-based applied behavior analysis" ("Autism center deserves community's support," 1999), "its [ABA's] science-based approach to autism," (Cook, 1996), and "a treatment option that's based on science, …that's what applied behavioral analysis is all about" (Cook, 1996). The description of ABA as "scientific" or "science-based" has thus been a central feature of the discourse across multiple data sources, many of which directly index Maurice's (1993) autobiographical text.

The flip side of this rhetorical coin of positioning ABA as scientific in Maurice's text and in subsequent public discourse is the ways in which the "scientific" nature of the method is simultaneously rhetorically constructed in opposition to other methods that are constructed as non-scientific and "ideological," thereby rhetorically implying that the discourse and position of advocating for the widespread use of ABA for young children labeled with autism are somehow neutral and non-ideological. Maurice (1996) states in her introduction to the manual (Maurice, Green, & Luce, 1996):

…[I]t had become apparent to me…that the autism world continued to be dominated by an astonishing amount of misinformation, false expertise, and ferocious ideological warfare. It was equally apparent, given the growing research findings about the value of early intervention, that there was a critical need for parents to gain access to science-based, accurate information about such intervention. (p. 6)

Maurice draws upon simple, binary Cartesian dualisms when she juxtaposes the "appeal to the emotions" of all of the other interventions for autism with the "appeal to reason" (p. 6) offered by ABA (once again, completely obscuring the absence of active "intervention" in the life of an autistic child as a possibility). In describing the myriad of "non-scientific" interventions for autism, Maurice draws upon language such as "unsupported claims," "curative powers," "powers…to heal," "New Age gurus," "charlatanism," "quackery," "nonsense," "scandal," "messiahs," "moon dust elixir," and "magic bullets" (pp. 5-6). Why indeed would one do anything else if these represent the alternatives to ABA?

This rhetorical strategy so masterfully deployed in Maurice's (1993) text was quickly and pervasively taken up in a variety of other discursive sites. A New York Times feature article on autism and ABA states:

Desperate parents are willing to try anything. Some have their children swim with dolphins or subject them to injections of sheep placenta. Others put their faith in techniques known as forced holding or facilitated communication and other unproven therapies….Comprehensive applied behavior analysis…is the only program backed by scientific data. (Feller, 1999, p. 15)

Thus, the "scientific" legitimacy of ABA is rhetorically constructed in opposition to images of "desperate parents" placing their "faith" in "unproven therapies," "willing to try" or "subject" their children to "anything." Just as Maurice had constructed ABA as "reason" as opposed to "emotion," this particular article constructs ABA as "science" as opposed to "faith." Similarly, a 1996 CBC video segment on autism and ABA describes ABA as "a treatment option that's based on science…it's not swimming with the dolphins" (Cook, 1996).

In a chapter titled, "Evaluating Claims about Treatments for Autism," Green (1996) states:

[D]ebates about causes and treatments tend to provoke intense emotional responses. The search for information and help is thus influenced at least as much by ideologies, personal beliefs, and social movements as by logic and objective data….The situation in autism treatment is largely the opposite of disciplined science. (Green, pp. 15-16)

Debates about treatments are thus described as "emotional," "influenced…by ideologies, personal beliefs, and social movements," and as "largely the opposite of disciplined science." However, by rhetorically positioning ABA treatment squarely within the realm of "disciplined science," the impression is created that ABA has no grounding in emotion, ideology, personal belief, or social or political movement. Maurice (1993) recounts the response of a director of a therapeutic nursery upon visiting a school that employed ABA—"I would invite you to come see our program, but I know you would hate it as much as I hate yours"—calling her an "ideologue" (p. 283). While acknowledging the radical differences of perspective between the two programs, Maurice seems to imply that the therapeutic nursery director's distaste for the ABA program is grounded in her ideological position, while her own distaste for the therapeutic nursery program, somehow, is not.

If we compare this rhetorical vocabulary describing interventions other than ABA to the rhetorical vocabulary used to describe ABA as "scientific" in the analyzed texts (see Table 1) (see Broderick, 2004 for more detailed analysis of these texts), we see illustrated what Danforth (1997) has called "two contrasting vocabularies that differentiate truth value according to the priorities of modernism" (p. 103). That is, the legitimacy and authority claimed through the appropriation of the positivist "scientific" rhetoric is at least partially constituted in opposition to a comparative rhetoric of illegitimacy. In his discussion of these two "contrasting vocabularies," Danforth observes that "the average American adult has a fair understanding of the high cultural value commonly accorded to a rhetoric of objectivity and low cultural value often granted to a language of subjectivity" (p. 103). Indeed, this "commonsense" high cultural value accorded to objectivity may partially account for the self-evident authority and legitimacy apparently attributed to the construct of "scientific proof" in the rhetorical query of the parent I cited: "Why would we do anything else?"

Thus, I argue that the most powerful and enduring rhetorical legacy of Maurice's (1993) text has been the skillful deployment of rhetorical strategies to position ABA as "scientific" and therefore valid, legitimate, and real, while simultaneously positioning non-ABA intervention approaches as "nonscientific" (or "pseudoscientific" or "antiscientific"), and therefore invalid, illegitimate, and not offering any "real" hope for improving the lives of autistic people. This rhetorical strategy has been taken up in many subsequent publications and discursive venues, and it remains an entrenched feature of autism discourse to this day, nearly 20 years later. The power of this rhetoric persists despite Aronowitz's assertion three decades ago that "the concept of the science/ideology antinomy is itself ideological because it fails to comprehend that all knowledge is a product of social relations" (Aronowitz, 1980, p. 97, as cited Giroux, 1997, p. 85). I turn now to a third pivotal moment in contemporary autism rhetoric: the 2005 establishment of the organization Autism Speaks.

Table 1: Rhetorical analysis of the language used to describe "scientific" ABA intervention vs. other (described as "non-scientific") interventions for autism. Data drawn from the following texts: "Autism center deserves community's support" (1999), Cook (1996), Fanlight Productions (1998), Feller (1999), Green (1996a, 1996b), Kirkus reviews (1993), Lovaas (1993), Maurice (1993), Maurice, Green, & Luce (1996), New York State Department of Health (1999a), New York State Department of Health (1999b), New York State Department of Health (1999c), Rimland (1993), Sege (1993), Van den Nieuwenhof, L. (1996), Weizel (1995), Wolfe (1993).
Rhetorical language describing "scientific" ABA intervention:Rhetorical language describing other ("nonscientific") interventions for autism:

appeal to reason

factual information

science-based

time-tested

objective data

highest possible degree of reliability

well-founded

objectively validated

corpus of knowledge

validated

data

held together empirically

voices of reason in the wilderness

the light of scientific objectivity

professional scrutiny

peer review

objective validation

the test of time

direct, objective observation and measurement of phenomena

systematic

procedures to rule out alternative explanations

repeated demonstrations (called replications)

accurate information

evidence

disciplined science

rigorous methodology

appeal to emotions

opinion

truth as a relative term

gift of gab

received wisdom

pseudoscience

antiscience

misinformation

false expertise

ferocious ideological warfare

unsupported claims

curative powers

powers…to heal

New Age gurus

charlatanism

quackery

nonsense

scandal

messiahs

moon dust elixir

magic bullets

personal beliefs

social movements

advozealots

faith

unproven therapies

ideologue

Rhetorical Moment #3: 2005

Enter Autism Speaks: The deployment of comprehensive, corporate-style rhetorical strategy

Autism Speaks describes itself as "North America's largest autism science and advocacy organization," founded in February of 2005 by Suzanne and Bob Wright, grandparents of an autistic child. Bob Wright notably served as CEO of NBC and NBC Universal for more than 20 years. It is also worth noting that in 2008, Time magazine named Bob and Suzanne Wright as two of the most influential people in the world "for their commitment to global autism advocacy" (Autism Votes, n.d.1).

It is difficult to overstate the significance of the impact that Autism Speaks has had upon autism rhetoric, as the organization's nearly simultaneous appearance and entrenchment have coincided with its virtual (though not complete) domination of popular autism rhetoric in the United States, as well as the exportation of its rhetoric on autism around the globe (e.g., the organization spearheaded a United Nations initiative to establish "World Autism Awareness Day," which was observed in 2010 in 40 nations around the globe). It is rhetorically significant to note that Autism Speaks describes itself as a "science and advocacy organization," not an "advocacy organization," and indeed the tab on "science" is given primacy of place (under a four-pronged mission of "science," "awareness," "advocacy," and "family services") on the homepage of the organization's website (see www.autismspeaks.org), hearkening back to Maurice's rhetorical moment previously discussed.

Autism Speaks: Rhetorical reinventions and unique contributions

Within this organization's rhetoric we can see parts of the rhetorical legacies of Lovaas and Maurice, though it is interesting to note the ways in which those rhetorical legacies have evolved and have been integrated in current autism ABA discourse in novel ways. Autism Speaks presently minimizes the presence of recovery rhetoric on its website and in its materials, in part in wake of a number of critiques over the years of Lovaas's use of the term "recovery," which resulted in Lovaas and his colleagues backpedaling somewhat on their own usage of the term (see Broderick, 2009 for a detailed discussion of this shift). Additionally, between 1993 and 2005, the rhetoric of "recovery" from autism was gradually appropriated by a different sub-discourse-community within autism rhetoric (those seeking biomedical treatments and cures through interventions such as chelation therapy, mercury detoxification, and nutritional/dietary regimens; see the Autism Research Institute and Defeat Autism Now! at www.autism.com ), a discourse community from which Autism Speaks takes pains to distance itself. It is also noteworthy that Autism Speaks does maintain primacy of place for the rhetoric of science as noted above, and a strong discursively "backgrounded" (Gee, 1999) positioning of ABA as the only scientific intervention approach within the organization's rhetoric. Indeed, the organization distances itself from the evolution of recovery rhetoric by noting, in a document under the link "information on therapies and treatments"2:

Is recovery possible? You may have heard about children who have recovered from autism. Although relatively rare, it is estimated that approximately 10% of children lose their diagnosis of autism. The factors that predict which children lose their diagnosis are unknown. ("How Is Autism Treated?" 2010, p. 47)

It is also worth noting that this modest, minimal, almost dismissive discussion of the rhetoric of recovery from autism is found on the penultimate page of the document. Additionally, this brief discussion on recovery is immediately preceded by these remarks:

We do know that many children get better with intensive behavioral therapy. There is a large body of scientific evidence to support this theory. It makes sense to focus on getting your child engaged in an intensive behavioral program before looking at other interventions. (p. 47)

The majority of the pages in this document on treatment options is dedicated to explicating the differences among a variety of behavioral intervention programs, and the discussion begins with reference to B.F. Skinner and continues with further discussion of ABA's "pioneer, Dr. Ivar Lovaas" (p. 35). Thus, while Autism Speaks appears to have largely jettisoned the rhetoric on recovery from autism as being not helpful to their own rhetorical PR and marketing campaigns, they have nevertheless further enshrined the rhetoric of science and the background assertion that ABA is the only scientific approach to intervention, as well as the notion that "children get better" with ABA (whether we call them "recovered" or not).

I posit in the introduction to this paper that Autism Speaks has made two key rhetorical contributions to contemporary autism rhetoric, the latter of which is arguably the more powerful and pervasive: (a) the rhetorical constitution of autism as enemy through its metaphoric representation of autism as disease, epidemic, and abductor; and (b) the skillful, systematic, pervasive, and global deployment of these and other rhetorical devices through its corporate-style, neoliberal, market approach to cultural and political rhetoric, deploying its rhetorical tactics and strategies more as a powerful corporate lobbying machine than as a traditional disability advocacy organization. I have elsewhere offered critiques of the organization's discourse and rhetoric surrounding the propagation and proliferation of cultural metaphors such as autism as disease (Broderick & Ne'eman, 2008) and autism as enemy, abductor, and epidemic (Broderick, 2010), wherein I argue that within the organizing metaphoric construct of autism as disease, and coupled with the metaphoric representation of autism as abductor and autism as epidemic, Autism Speaks has sought to rhetorically constitute both a clear enemy (autism) and a sense of urgency,

each of which is necessary to constitute autism as a cultural threat significant enough to support particular approaches and postures toward both intervention (e.g., attempts at "recovery" through early intensive behavioral intervention) and prevention (e.g., "curing autism"). (Broderick, 2010, p. 237)

I turn my attention now to what I argue is Autism Speaks's most significant contribution to contemporary autism rhetoric, a contribution more of rhetorical strategy than of rhetorical theme. In the final section of this manuscript, I explore the organization's continued masterful use of rhetoric in pursuit of an agenda comprised at the nexus of cultural, media, corporate, political, and policy interests, and the ways in which its pursuit of a particular policy agenda through the Autism Votes initiative also happens to support not only one particular intervention methodology, but more significantly, one particular intervention industry—ABA.

Autism Votes: The rhetorical construction of a "grassroots" political lobby

When one clicks on the icon for "advocacy" on Autism Speaks's homepage (one of the four pillars of the organization's stated missions), one is directed to the homepage of its "Autism Votes" initiative (www.autismvotes.org). This initiative is not, apparently, merely one facet of the organization's "advocacy" agenda; it appears to comprise its advocacy agenda in its entirety. In the fall of 2007, Autism Speaks launched "Autism Votes,"3 a self-described "comprehensive grassroots advocacy program, coordinating activist efforts in support of federal and state legislative initiatives," an initiative that "has played a critical role in securing federal legislation to advance the government's response to autism, and has successfully advocated for insurance reform to cover behavioral treatments" (n.d.).

According to Autism Speaks's 2008 Annual Report, "we were able to push bills in five different states through the legislatures to become laws" (p. 14). At the time of this writing, Autism Votes's lobbying efforts have actually "pushed bills through" in twenty-three states, each "requir[ing] insurance companies to provide coverage of evidence-based, medically necessary autism therapies,"4 with all but three of the remaining states (Utah, Wyoming, and Oklahoma) having active lobbying efforts underway with draft legislation pending attention during the next legislative session ("Autism Votes," n.d.). The euphemism of "medically necessary autism therapies" is used virtually interchangeably throughout the site with the somewhat more descriptive "behavioral treatments." The legislative measures in each of these 23 states are very similar, each being based in large part upon template legislation actually drafted, circulated, and lobbied for by Autism Speaks. Autism Speaks recently endorsed pieces of pending legislation in Arkansas, Hawai'i, and North Dakota, each of which is identically described in boilerplate press releases as providing coverage for "behavioral health treatments, such as Applied Behavior Analysis (ABA), an evidence-based, medically necessary autism therapy"5 ("Autism Votes," n.d.).

In the particular example of Kentucky (which became the 17th state to pass autism health insurance reform legislation in April, 2010), Autism Votes (n.d.) provides a summary online of the provisions of the legislation, which requires health insurance companies to pay for, among other things, "habilitative or rehabilitative care…including applied behavior analysis (ABA) and other behavioral health treatments, that are necessary to develop, maintain, and restore to the maximum possible extent an individuals [sic] functioning." The Kentucky legislation thus requires health insurers to provide coverage for "medically necessary" behavioral interventions up to an annual benefit of $50,000/year for children between the ages of one and six (some states cap this benefit as low as $36,000), with benefits capped at $1000/month for children between the ages of seven and twenty-one:

The summary of this legislation provided by Autism Votes further notes:

Coverage of treatments will be provided when prescribed, provided, or ordered for an individual diagnosed with autism by a licensed physician or a licensed psychologist who determines the care to be medically necessary. (ibid)

Significantly, the Kentucky legislation, similar to many of the other state initiatives, also creates a state-level licensing board for behavior analysts. Media coverage of the bill on a website tracking news items relevant to the pharmacy industry quotes a Kentucky representative of Autism Speaks citing the legislative language forming a state board for certification of behavior analysis as "an important step in showing that autism is a medical diagnosis with a standard of treatment."6

It seems significant to note that many of these pieces of state legislation passed their respective legislative bodies with unanimous approval across both major parties, something that is becoming increasingly unheard of in the contemporary, highly partisan, political climate in the U.S. Additionally, these pieces of legislation were heavily and understandably lobbied against by the health insurance industry lobby, the political clout of which, if anyone had heretofore been unaware, was amply and visibly demonstrated as the powerful and formidable political lobbying force that it is during the health insurance reform process in the U.S. federal government during 2009-10. How does a "grassroots advocacy program" go up against the powerful health insurance industry lobby in the legislative policy arena and win, over and over and over again?

The positioning of Autism Votes as a "grassroots" advocacy initiative is itself an effective rhetorical strategy. One might argue that relatively few "grassroots" disability advocacy organizations have at least 15 executive officers earning annual six-figure salaries or have annual mid-six-figure contracts with corporations providing services in areas such as government relations, public relations, marketing, or project management (see "Annual Report," 2008). Nevertheless, the rhetoric of presenting one's agenda as a "grassroots" one is clearly politically advantageous. On the Autism Votes website, their "Chapter Advocacy Network" is described as "a group of elite volunteers dedicated to expanding involvement in autism advocacy." Additionally the "Chapter Advocacy Chairs…direct and activate their local community to advocate for state and federal Autism Speaks initiatives." It is left for the reader to decide whether having a group of "elite volunteers" come in to "direct and activate" local communities "to advocate for state and federal Autism Speaks initiatives" is consistent with the rhetoric of a grassroots political effort. Regardless, it seems culturally to be a powerfully resonant rhetorical strategy. Autism Speaks's representation of its work as a grassroots initiative accomplishes some degree of cultural congruence through its many "walk" events hosted in local communities throughout the country. During these walks, family members, friends, professionals, and others whose lives may be affected by autism gather to walk, to raise and to make donations to Autism Speaks and to sign petitions at the Autism Votes walk booths, "where advocacy information is shared with the walk community and signatures are collected for petitions that are then hand-delivered to Capitol Hill." However, a certain amount of rhetorical incongruence arises when one notes that the funds raised within local communities do not stay within local communities; they go to the behemoth Autism Speaks (which allocates 65% of its revenues to [mostly genetic] research funding and only 4% to family services) ("Annual Report," 2008). And the petitions to state and federal legislators for which signatures are routinely collected during walks are not drafted within local communities, by local activists, in pursuit of local initiatives; rather, these petitions are drafted by Autism Speaks "to advocate for…Autism Speaks initiatives."

A branch of the Autism Votes initiative is called Autism Speaks Government Relations. Its offices are located on K Street in Washington D.C., inside the beltway (the main office of Autism Speaks is located on Park Avenue in Manhattan). According to the Autism Votes website, "The Autism Speaks Government Relations Department is ready to help you put together an effective autism insurance reform initiative in your state." The services noted to be available through Autism Speaks Government Relations include those of "policy consultants," "grassroots engagers," and "communications managers," represented on the website as follows:

Policy Consultants:
  • Assist in the preparation of draft legislation
  • Provide strategic and policy guidance when dealing with members of your state legislature
  • Write summaries of and talking points for your legislation
  • Provide written testimony for legislative hearings on the bill
  • Develop a useful cost impact analysis specific to your state
Grassroots Engagers:
  • Provide petitions and sign-up sheets for the Autism Votes booth at your local walk or event
  • Help you keep track of and increase grassroots involvement
  • Help build a coalition of autism organizations in your state
  • Host conference calls to promote coordination amongst grassroots leaders
Communications Managers:
  • House and update a webpage for your state on AutismVotes.org
  • Create action items that allow the community to send e-mails directly to their legislators
  • Keep the community informed and involved through press releases, E-speaks, community newsletters, and the Autism Speaks and Autism Votes websites
  • Assist with PR and media to promote the initiative

As noted above, it is left to the reader/advocate/citizen to judge the rhetorical (in)congruence of having a cadre of professional lobbyists along with the resources of corporate PR and marketing firms available to and deployed by a grassroots advocacy initiative. Regardless of this judgment, however, given the material political and economic impact of this initiative in the three short years since it was launched, it appears to have been a powerfully effective rhetorical strategy.

The Government Relations department of Autism Votes provides a template for draft legislation which is available online, as well as a boilerplate report detailing the cost effectiveness of autism insurance reform legislation, which, as noted on the website, "was prepared specifically for the Commonwealth of Pennsylvania" but which "can be presented as evidence in all states."7 In summary, this report concludes that:

The clinical and cost effectiveness research studies provided indicate that improvements in clinical and role functioning and quality of life can be anticipated for those children and youth with ASD [autism spectrum disorders] who use evidence based behavioral therapies, including Applied Behavioral Analysis. (Abt Associates Inc., 2008, p. 51)

Also available on the Autism Votes website is a document outlining 8 arguments for autism insurance reform, and Lovaas's (1987) study plays a key role in the document's argument that ABA is both "effective" and "proven."8 Throughout this document, we see echoes of the rhetoric of science (e.g., "evidence-based," "proven," etc.), but also see the deployment of another powerful rhetorical tactic: a neo-liberal market discourse of not only "effectiveness" but also "cost-effectiveness."

None of the individual rhetorical tactics deployed by Autism Speaks—the rhetorical constitution of autism as cultural enemy, the rhetorical construction of urgency therefore necessitating decisive action, the rhetorical construction of legitimacy through the employment of the discourse of science and the neo-liberal market discourse of cost effectiveness, or the rhetorical construction of Autism Speaks's agenda as somehow emergent from a populist grassroots advocacy movement—none of these tactics are noteworthy enough on their own to constitute the significance of what I am calling the third rhetorical moment in autism rhetoric. The significance of this third moment consists, rather, in the comprehensive and systematic and pervasive rhetorical strategy that Autism Speaks has deployed across multiple cultural and discursive sites—popular and new media, public political discourse, legislative and other policy initiatives—toward its stated end, ultimately, of a "cure for autism" (Autism Speaks, "Mission Statement").

This is a complex, deliberative, multi-pronged strategy that makes incisive use of Madison Avenue-style cultural rhetoric and beltway-style political lobbying. For example, Autism Speak's pervasive deployment of the rhetoric of autism as "disease" and as "epidemic" through its Ad Council Public Service Announcements and other prongs of its "awareness" mission (Broderick, 2010) was a necessary precondition for the deployment of the strategy to pursue and secure legislation funding the ABA industry through private health insurance (rather than, say, through legislation that might seek to secure or require ABA as an educational intervention). It is indeed a remarkable rhetorical coup to be able to establish such consistent cultural buy-in for behavioral interventions as "medically necessary treatments" for any phenomenon constituted as "disease," let alone the genetic phenomenon further constituted as "epidemic," autism. These contradictions internal to the rhetoric (of a behavioral intervention being constituted as medically necessary, of a genetic epidemic, etc.) appear to be culturally insignificant, because they are overridden by the power of the comprehensive, pervasive, and nearly unilateral cultural narrative deployed through Autism Speaks's corporate-style, strategic approach to rhetoric. It has proven thus far to be remarkably effective.

Discussion

O. I. Lovaas died at the age of 83 on August 2, 2010, as this manuscript was in preparation. In a Los Angeles Times article reporting on Lovaas's death, it was noted that "He described some of his research subjects as having 'recovered,' a concept that remains controversial but appealed to parents and helped launch an industry that provides the treatment to the growing numbers of children being diagnosed" (Zarembo, 2010). The author incisively notes the crux of Lovaas's rhetorical legacy: crafting a rhetorical construct ("recovery") with wide popular appeal (especially to parents), the appeal of which forms the rhetorical basis for a lucrative intervention industry (ABA). Lovaas's most enduring legacy is not his science, it is his rhetoric. His 1987 rhetorical construction of the notion of "recovery [to normalcy]" continues to appeal powerfully to parents and family members and educators and legislators and journalists and academics, and even to some autistic people, all of whom are immersed in a culture wherein normalcy is highly and unquestionably valued and relentlessly pursued through a wide range of "interventions," while an autistic identity continues to be rhetorically devalued and stigmatized, carrying the cultural baggage of disorder, damage, deficit, disease, abductor, invader, enemy (Broderick, 2010). The impact of this powerful rhetorical legacy, catapulted into mainstream public consciousness and inextricably linked with the potent cultural discourse of science through Maurice's beautifully crafted and widely read autobiography, continues to be felt in popular autism discourse, indeed, to the point of being codified in policy and legislation.

While it may be regarded as somewhat premature to speak of the "legacy" of an organization that has barely been in existence for six years, I will nevertheless contend that the powerful impact of Autism Speaks's cultural rhetoric will also prove to be enduring, notwithstanding the material impact that its rhetoric has had thus far upon the lives of autistic citizens. Its cultural impact stands as a masterful example of the strategic, incisive, and systematic deployment of cultural and political rhetoric. In the six short years since its inception, the organization has launched a series of public awareness campaigns and an accompanying "media blitz" rhetorically constituting autism as not only disease, but as epidemic disease, thereby manufacturing need. It has also managed to quite effectively sell a particular intervention method—ABA—as the only legitimate intervention (along with the underlying assumption that the life of an autistic person necessarily requires intervention of some sort), and to neatly and deftly legislate provisions to ensure a steady funding source for this burgeoning for-profit industry. The deployment of corporate-style rhetorical and political strategy in the service (ostensibly) of a disability advocacy organization marks the 2005 inception of Autism Speaks as a third historically significant rhetorical moment in contemporary ABA autism rhetoric.

Collectively, these three rhetorical moments have substantially shaped contemporary autism cultural rhetoric, and they have done so in ways with significant material impact upon the lives of autistic people. However, these three moments did not emerge in a cultural, political, or rhetorical vacuum; they may be regarded rather as subcurrents within much broader and deeper cultural waves, including, among others, an epistemological wave that Sandler and Apple (2010) refer to as "evidence-based policy/practices" or "EBP" (p. 327):

We use the term "evidence-based practices" (EBP) as a general term that includes several related initiatives. Among these initiatives, we intend for this term to be inclusive of the notion that educational practices ought to be guided by "scientifically based research," as indicated in the No Child Left Behind Act. We also include initiatives that call for evidence-based policy, scientifically-based research (SBR), and the increased use of randomized controlled trials (RCTs) and randomized field trials (RFTs) in social and educational reform efforts. In short, we use EBP to indicate all agendas that infuse a methodological bias toward applied, causal intervention questions and toward experimental methods as an ideal means to investigate these questions. (p. 329)

Further, Sandler and Apple describe EBP as "a movement that advocates in multiple ways for a culture of evidence, portraying itself as an effort to bring objectivity and reason to a field characterized by subjective biases and myth" (p. 337). Each of the rhetorical moments analyzed above is entirely congruent with, and has no doubt been buoyed to cultural prominence in some part due to its rhetorical congruence with the broader epistemological movement in the U.S. toward evidence-based practice: Lovaas's controlled (although not randomized) treatment effect study; Maurice's rhetoric of science and reason vs. faith and ideology; and Autism Speaks's agenda for writing and passing state-level legislation enshrining ABA as an "evidence-based, medically necessary autism therapy," as well as its federal-level Combating Autism Act of 2006, which likewise calls for "evidence-based" treatments for autism—all are rhetorically congruent with what Sandler and Apple call "a resurgence of what is perhaps best seen as a cult of objectivity" (p. 326).

As cohesive, pervasive, and effective as the rhetorical strategies analyzed above have been in their deployment, they are nevertheless mere rhetorical moments in the age-old debate over the question of what (and, more importantly, whose) knowledge is of most worth. As Sandler and Apple here contend:

Far from a truly objective intervention in a cultural and ideologically polluted field, as its advocates would have it, the EBP movement is simply another response to the question of whose knowledge is of most worth. (p. 338)

Likewise, the rhetorical moments of contemporary autism and ABA discourse that I have analyzed above are but another asserted response to these perennial questions—who gets to say what autism (in this case) is, means, does, matters? How are language and rhetoric deployed at the intersections of knowledge and power? It is far from a closed debate, and the voices from within the neurodiversity movement (see special issue of Disability Studies Quarterly [vol. 30] on neurodiversity: Thornton Savarese & Savarese 2010; Broderick & Ne'eman, 2008) amply illustrate the generative possibilities engendered when rhetorical imagining begets political activity begets cultural evolution.

Works Cited

Endnotes

  1. See http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909977/k.C9AE/About_Us.htm


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  2. See http://www.autismspeaks.org/community/family_services/100_day_kit.php


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  3. See http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909977/k.C9AE/About_Us.htm


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  4. See http://www.autismvotes.org/site/c.frKNI3PCImE/b.4411927/k.D10A/Kentucky.htm


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  5. See http://www.autismvotes.org/site/c.frKNI3PCImE/b.4411951/k.9E4B/North_Dakota.htm, http://www.autismvotes.org/site/c.frKNI3PCImE/b.4411863/k.D755/Arkansas.htm, and http://www.autismvotes.org/site/c.frKNI3PCImE/b.3937867/k.B64E/Hawaii.htm


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  6. See http://www.pharmacistelink.com/medicaid/14909.html


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  7. See http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm


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  8. See http://www.autismvotes.org/atf/cf/%7B2A179B73-96E2-44C3-8816-1B1C0BE5334B%7D/Arguments_for_private_insurance_%20coverage.pdf


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