Not so long ago autism was the province of a small group of individuals. Yet it is now everywhere, working to shape the public's imagination and ways of talking about the construct of autism. Public stories told about autism often conflict with and contradict one another, particularly as public stories meet the private, everyday practices of individuals with autism labels and their families and friends. Drawing upon discursive psychology, I share the findings generated from a discourse analysis of 14 interviews with parents of children with autism labels focused on the meanings of autism. I illustrate the ways in which the participants constructed autism as: (1) untenable and apt to receive multiple meanings; (2) representative of a different or non-normative way of thinking; and (3) minimally relevant, as the 'truth' of autism was overshadowed by bodily realities.


Not so long ago autism was the province of a small group of individuals; yet now it is everywhere, with talk shows (e.g., Winfrey, 2007, "The Faces of Autism" on The Oprah Show), television series (e.g., Trilling and Massin, 2010, ABC television series "Parenthood"), and popular magazines (e.g., Rosen, 2010, Ladies' Home Journal) working to shape the public's imagination and ways of talking about the construct of autism. Considered to be the most widely researched childhood psychiatric 'disorder' (Wolff, 2004), autism is a product of varied and conflicting disciplinary knowledges, with multiple institutional discourses and histories contributing to its production (Nadesan, 2005). Autism has most often been positioned within a discourse of disease and deficit; metaphors of "medical intervention" and "cure" frequently evoked by research communities and popular media outlets (Broderick & Ne'eman, 2008, p. 469). Medical literature has also represented autism as a biological fact to be understood primarily through the lens of positivistic methodologies (Glynne-Owen, 2010), as the "assumptions of the natural sciences" tend to shape the very definition(s) of autism (Nadesan, p. 2). Public stories told about autism often conflict with and contradict one another, with some versions describing the individual with autism as "imprisoned within, waiting to be reclaimed" (Maurice, 1993, p. 32), while other versions construct autism as "not just a 'shell' within which a 'normal' child is waiting to get out" (Happe, 1994, p. 6). It seems that the dominant autism story "is fractured by dissoi logoi, a scrambled collection of competing, contesting 'truth claims'" (Avery, 1999, p. 119), particularly when the public stories of autism meet the private, everyday practices of individuals with autism labels and their families and friends.

Certainly, there has been increasing emphasis upon the socially constructed and culturally contingent nature of disabilities (e.g., Corker & French, 1999), such as autism. Yet, far less work has specifically attended to the situated, discursive ways in which children with autism labels and their families perform and make relevant their own understandings and representations of autism. There is, however, a growing body of qualitative research focused on the life stories of individuals with autism labels (e.g., Ashby, 2010), the discursive practices of "high-functioning children with autism and Asperger syndrome" (e.g., Ochs, Kremer-Sadlik, Sirota, & Solmon, 2004, p. 147), and the process of identity construction (e.g., Bagatell, 2007). Further, while some researchers have examined the micro-level discursive practices of children with autism (Fasulo & Fiore, 2007), others have investigated the discursive formation of "recovery" in texts focused on applied behavioral analysis (Broderick, 2009) and how parents talk about normal development, medicine and disability from a Foucauldian perspective (Avdi, Griffin, and Brough, 2000). Although there have been some conversation analysis studies focused on the organization of talk of people with autism labels (e.g., Stribling, Rae, & Dickerson, 2007), much of this research has assumed that autism organizes discourse versus discourse organizing the construct of autism. Recently Grue (2011) argued that disability is an underexplored topic in discourse analysis and called for more discourse-oriented research to take up issues related to disability studies. She suggested that if the constitution of an "impairment" is dependent upon the language and structures that make it "real," the study of such language is of "key importance" (p. 536).

Drawing from a larger ethnographic study (Lester, 2012; Lester & Paulus, 2012), in this article, I report on findings generated from a discourse analysis of 14 interviews with parents of children with autism labels. I positioned this discourse analysis at the intersection of critical notions of human development (Steinberg, Kincheloe, & Hinchey, 1999) and discourse studies, interrogating the ways in which the varied meanings of autism were made relevant in the micro-level talk of the participants. Taking up discursive psychology (DP) (Edwards & Potter, 1993) and conversation analysis (Sacks, 1992), the following research question framed this study: What are the various meanings of autism and how are these meanings performed within and through the discursive practices of parents of children with autism labels?

Theoretical and Methodological Commitments

With a commitment to emic perspectives, I took up discourse theory and analysis, situating this study within a DP framework (Edwards & Potter, 1993) that was informed by certain aspects of conversation analysis (Sacks, 1992) and a social relational model of disability (Thomas, 2004). While I situated this work within a DP frame, I attempted to work within and across discourse traditions; while I engaged in the research process, my theoretical understandings were challenged and altered. I assumed that those who take up discourse approaches "must remain methodological bricoleurs and refrain from developing an all-purpose technique for discourse analysis" (Torfing, 1999, p. 292).

Certain aspects of DP informed my analytical and theoretical decisions. As a broad framework, DP attends to how "'psychology' and 'reality' are produced, dealt with and made relevant by participants in and through interaction" (Hepburn and Wiggins, 2005, p. 595). Rather than presuming that psychological states can serve to explain why people behave as they do, DP orients to "states" as features of situated talk. Potter (2004) presented three key aspects of discourse from a DP perspective. First, discourse is presumed to be action-oriented, resulting in the analyst considering what the discourse is doing versus assuming it reveals hidden meanings. Second, discourse is seen as constructive, as the talk of people is used to construct and reconstruct varied versions of reality. Finally, discourse is situated and always embedded within a particular interaction.

The social relational model of disability also informed my interpretation of the data. Thomas' (2004) pointed to the necessity of differentiating between impairment effects and disability, viewing disability as relevant only as restrictions of activity are socially imposed upon an individual with impairment(s). She further acknowledged "that impairments and chronic illness [may] directly cause some restrictions of activity-but such non-socially imposed restrictions of activity do not constitute 'disability'" (p. 581). From this perspective, impairment effects and disability are viewed as being interactively experienced by individuals, as what others might orient to as non-normative may become "the marker for other restrictions of activity which do constitute disability" (Thomas, 1999, p. 43). I assumed that when there is not a willingness to accommodate and make room for "difference as difference (not pathology)" (Savarese et al., 2010, p. 7), exclusion and "disability" emerges.

Data Sources

Upon IRB approval, I interviewed 14 parents (11 mothers and three fathers) of children with a clinical diagnosis of autism. The larger ethnographic study is focused on examining the everyday experiences of children, parents, and therapists at a pediatric therapy clinic in the Midwestern region of the United States, The Green Room (self-selected pseudonym). The parent interview data was part of a larger corpus of data which included 175 hours of audio and video data (e.g. from group and individual therapy sessions, interviews and waiting room conversations), eight interviews with physical, occupational, and speech language therapists, one interview with a state disability advocate, 650 pages of observational field notes, and a corpus of e-mail correspondence and documents used during therapy sessions. I also recorded face-to-face meetings with some of the participating parents in which I shared my interpretations of the data.

The interviews occurred at The Green Room. The parent interviews ranged from 22 minutes to 84 minutes and averaged 41 minutes. Although I only invited those parents to participate who had children identified as having an autism label, I presumed that a diagnostic label of autism did not necessarily indicate that the child's parents oriented to autism as a biological and stable construct. I recognized that "identity ascription of any kind, and by academics as much as by anyone else, is always occasioned by some interactional or institutional circumstance" (Rapley, Kiernan, & Antaki, 1998, p. 825). As such, during the interviews, I decided to use the word "autism" only after participants made it relevant, which all of the participants did at some point during the course of their interview. When they did make autism relevant, I asked, "When you say autism, what does that mean to you?" I followed a semi-structured interview protocol, asking three questions consistently, one of which was specific to their child's speech and occupational therapy sessions. The majority of the interview was spent exploring the parents' responses to the first two questions, questions focused on describing their child. It was within their descriptions of their children that meanings of autism were made relevant. At the completion of the interviews, I invited parents to complete a demographic survey.

Data Analysis

As I moved across the data set, I carried out multiple levels of analysis, refining often the ways in which I deconstructed and reconstructed the data set as I worked to the level of tentative explanations. While I took an interpretive and emergent approach to analyzing the data, the recursive analysis process did not result in a set number of "coding levels," but continued to evolve as I engaged in new ways with the data. More specifically, I conducted a discourse analysis from a DP perspective (Edwards & Potter, 1993), drawing upon conversation analytic techniques (Sacks, 1992). My analysis moved between the micro-level of the conversation (interview talk) and macro-level discourses. To analyze the data, I carried out six broad phases of data analysis: (1) intensive listening; (2) transcription; (3) repeated reading and listening; (4) selection, organization, and further analysis of patterns across the discourse segments; (5) generation of explanations/interpretations; (6) reflexive and transparent sharing of findings.

While the word "pattern" often evokes a sense of a unified idea or an overarching theme, I did not orient to it as such. Even while identifying commonalities, I presumed that each pattern was variable. More particularly, I struggled not to present the participants in monolithic ways, attempting to write in a way that did not presume "homogeneity, coherence, and timelessness" across the data set (Abu-Lughod, 1991, p. 154). In presenting the findings, then, I do not offer broad themes that function at the level of generalities nor suggest that the patterns I share offer a complete picture of the meaning(s) of autism. Instead, I make sense of the data in local and partial ways, and desire not to construct the participants as invariable and without contradiction.

Aware of the need to soundly warrant my claims, I engaged in several analytic techniques in order to validate my research findings. First, I acknowledge the need for reflexivity within the research process, recognizing "that texts do not simply and transparently report an independent order of reality. Rather, the texts themselves are implicated in the work of reality-construction" (Atkinson, 1990, p. 6). I assume, then, that my interpretation is situated and stands as one of many possible explanations. Through memos, journaling, and recording and electronically saving each analytical and theoretical decision, I leave an audit trail that permits an outside researcher to review and become familiar with my decision-making process. Second, with the participants' talk being understood as having shifting and multiple meanings, I intentionally sought out alternative cases and explanations. In seeking out negative instances/deviant cases or variability, I attended to inconsistencies and diversity within the natural talk of the participants. Third, I supported each of my explanations with detailed evidence and explications, showing how the participants oriented toward and worked up a given claim. Fourth, while I value deeply the role of reader evaluation, I also take seriously the idea that researchers should share their interpretations with those stakeholders involved with and interested in a given study (Flyvberg, 2001). So, over the course of nine months, I invited the participants to read and respond to my interpretations, resulting in further analysis and deepening understandings.

Finally, by transparently presenting how each claim is supported by excerpts from the corpus of data, I provide space for the reader to evaluate my claims (Potter, 1996). While the analytic process consisted of generating a corpus of examples for each pattern, I only present here a small number of these excerpts. In selecting the excerpts, I faced difficult decisions, such as where to begin and end a given excerpt and whether I should include all of the transcription conventions used during my analysis process. Ultimately, I aimed to present enough evidence to allow the reader to put forward alternative interpretations (Hammersley, 2010), while also selecting excerpts that show the variability within my data set. As such, I invite the reader to engage critically with the excerpts and with my interpretations of them and to re-interpret and offer alternative understandings. I turn now to share the findings.


The excerpts and interpretations presented below highlight how the participants oriented to autism as a fluid and negotiable construct, rather than as a unitary entity. Most of the participants did not use the category of autism in a way that assumed there was a shared definition. Instead, when they talked about autism, they negotiated its meaning as contingent and situated, often within the context of everyday events and institutionalized practices. The majority of the participants oriented to the meanings of autism as: (1) untenable and apt to receive multiple meanings; (2) representative of a different or non-normative way of thinking; and (3) minimally relevant, i.e., the actual meaning or truth of autism was minimized as the impairment effects of the child were positioned as being most relevant.

Excerpt One illustrates the contingent and unstable nature of autism. In response to my question, "When you say autism, what does that mean to you?" few participants offered a straightforward definition of autism. Instead, like Melissa, the majority of the participating parents oriented to autism as difficult or even impossible to define, making evident how "extraordinarily unstable" the category of autism is (Osteen, 2008, p. 10). Excerpt One illustrates (see Appendix A for Jeffersonian transcription symbols) well this dilemma.

Excerpt One
  1. Melissa: Well you know everybody's is so (.) different (1) you know like (8) the
  2. whole concept of autism (5) I don't know how I would explain that↑ (1) cuz
  3. everybody's my experience with autism is so different (.) than my girlfriend who
  4. has=
  5. Jessica: =Hm=
  6. Melissa: =a son who's verbal↑ (.)
  7. Jessica: Mm hm=
  8. Melissa: =you know our (3) our (1) goals for our children may somewhat be the
  9. same↑ (.)
  10. Jessica: Mm hm (.)
  11. Melissa: but our experiences are so different he's not (2) he doesn't have the the
  12. yeast stuff that Noodle does he doesn't have the (1) the um (5) food allergies that
  13. Noodle does=
  14. Jessica: =mm hm=
  15. Melissa: =you know so m- my experience is so much different than hers you know
  16. auti- (2) it's a lifestyle really for us=
  17. Jessica: =hm=
  18. Melissa: =you know it's (2) it's (2) just >part of our daily normal< life=
  19. Jessica: =mm hm=
  20. Melissa: =that=
  21. Jessica: =mm hm=
  22. Melissa: =I don't know how↑ I would explain I really honestly don't=
  23. Jessica: =mm hm (2)
  24. Melissa: tuh you know is (2) I would just say well it's (1) <blah blah blah cognitive
  25. blah blah blah de- disorder but> for me is I don't know how I would explain it=
  26. Jessica: =mm hm=
  27. Melissa: =personally I don't honestly know how I would explain it

Melissa's initial statement emphasized that autism, as a "concept," is variable and individual, stating that "everybody's is so (.) different." Melissa, as a parent of a child with an autism label, could have taken up the category entitlement to speak about and define autism in a definitive and expert-like manner (Potter, 1996); yet, Melissa's orientation to and attempt to manage the dilemma of defining autism is made evident as she continued speaking. As she defined the "whole concept of autism," long pauses were noted, with pauses often signaling some type of interactional trouble (Speer, 2001). In this case, the interactional trouble is the very process of coming up with a definition of autism. I was particularly struck by Melissa's next statement: "I don't know how I would explain that↑ (1) cuz everybody's my experience with autism is so different." I oriented to this as significant in that Melissa, not offering a monolithic textbook definition of autism, instead situated the definition of autism in the experiences of parents with a child with an autism label. Autism, then, was defined in relation to the unique, everyday experiences of those who lived with or were around autism. Following her claim of not knowing how to explain autism, she further accounted for why making sense of and explaining autism was impossible, contrasting her experience with that of her girlfriend. She made relevant that her girlfriend's son is "verbal," implying then that her daughter, Noodle, is nonverbal.

This distinction is particularly relevant in that the broader discourse surrounding autism is rife with distinctions between verbal and nonverbal individuals with autism labels. Osteen (2008) noted that even within the autism advocacy community, distinctions are frequently made between verbal and nonverbal individuals, with verbal abilities being associated with high-functioning autism and nonverbal abilities being associated with low-functioning autism. Thus, I found it particularly intriguing that Melissa moved to suggest that her goals for her daughter are at least somewhat similar to her girlfriend's goals for her son. She could have said, for example, that because her daughter was nonverbal, her goals were remarkably different from her girlfriend's. Yet, such a move may have risked positioning her daughter as less competent, even lower functioning. Nevertheless, Melissa did make relevant what was different about her experience, pointing to Noodle's allergies or bodily realities/impairment effects.

While her goals for her daughter were somewhat similar to those of her girlfriend, Melissa returned to all that made her experience with autism unique, stating: "my experience is so much different than hers you know auti- (2) it's a lifestyle really for us." Rather than simply being an afterthought or minimally relevant in her day-to-day living, Melissa located the meaning of autism as being bound up in all that her life entails. She reaffirmed this idea by stating that "it's (2) just >part of our daily normal< life." She positioned, then, the doing and performing of autism in everyday events. Sacks (1984) noted that within talk, speakers often go about "doing being ordinary" (p. 416), positioning their everyday experiences as nothing out of the ordinary or indicative of an aberration of some kind. In this case, Melissa oriented to her lifestyle as being nothing extraordinary, while still linking it to autism. I interpreted this move as constructing autism as something not to be spectacularized, as she positioned it as nothing more or less than what she lived day in and day out.

Melissa concluded by returning to the dilemma and the impossibility of precisely defining autism, stating that "I don't know how↑ I would explain I really honestly don't." When she finally came to offer what she would say to someone else about autism, her lexical choices are particularly interesting. She used the phrasing "blah blah blah" prior to both the term "cognitive" and "disorder." Perhaps, the inclusion of "blah blah blah" functioned to position the precise, medical definitions of autism as difficult to explain, pointing to the impossibility of really making sense of autism apart from its performance in everyday events/life. "Blah blah blah" may also have functioned to minimize or resist the medicalized or technical jargon associated with autism. She emphasized that she "honestly" does not know how to explain autism, claiming responsibility for her inability to answer (Edwards & Fasulo, 2006). Further, by reemphasizing that she does not know how to explain autism, Melissa made visible, once again, the challenge of defining autism. Thus, Melissa's talk never precisely defined autism, at least not in academic or medicalized language, yet it always located its real meaning in everyday, individual experiences.

Excerpt Two and my interpretation illustrate how autism was worked up by some of the participants as an advantageous gift. Just prior to the start of this excerpt, Nicole had described her son George as "being a happy boy" whose "behavior's a little bit different." She linked his "behaviors" to "his autism," defining further his frequent "meltdowns" as being the result of his "disability." Yet, after I asked, "so what does autism mean to you," Nicole quickly moved to distance George's abilities from the notion of disability, reworking how she made sense of his identity and the very construct of autism, as shown in Excerpt Two.

Excerpt Two
  1. Nicole: So (.) you know I hate tuh I hate tuh even (.) sometimes call it a disability
  2. sometimes I feel that it is but sometimes I think (2) you know it's gunna be (.) to his
  3. advantage 'cuz maybe he sees things differently (.) than we do=
  4. Jessica: =Mm hm=
  5. Nicole: =and he he will able to figure things some out you know finger figure things
  6. out that we can't so it may be a a gift↑ (.)
  7. Jessica: Mm hm=
  8. Nicole: =some time so yeah=
  9. Jessica: =Can you say a little bit more about that↑ (.)
  10. Nicole: Um well if he were um (1) you know he could maybe he can uh process (.)
  11. visualize something and (.) um see it differently than I can and maybe um (1) uh you
  12. know make it work to his advantage down the road in a job↑ (.)
  13. Jessica: Mm hm (.)
  14. Nicole: So yeah hopefully he can see um maybe even some good in things that we
  15. (.) that we can't [or we
  16. Jessica: mm hm]
  17. Nicole: don't or you know (1) so (.) I hope I hope (1) you know he can use what he's
  18. got you know to his advantage=
  19. Jessica: =Mm mm=
  20. Nicole: =later in life and find one certain area that he loves and and uh you know he
  21. loves fans and vents and air conditioners and furnaces maybe he'll invent something
  22. for them and you know somebody's got to be interested right↑ and um (.) you know
  23. maybe it'll be a huge moneymaker for him someday

Nicole began by stating that she "hates" to call autism a disability, implying that to be named disabled is undesirable. Edwards (1999) noted that it is particularly relevant to consider how emotions are used in discourse to link specific ideas together. Everyday understandings and uses of emotions do not simply reflect mental states, but instead point to the "cultural values and the prerogatives of power that some members of this society currently hold" (Lutz, 1990, p. 204). So, it is particularly telling to consider how in the above excerpt, the word "hate" is deployed in relation to disability. Historically, being named disabled has been linked to social exclusion, stigma, and deficits (Braddock, & Parish, 2001) and has rarely functioned as a desired social category. Thus, to "hate" to associate autism with the notion of disability evokes the broader discourses and institutionalized practices that construct being a member of a disability category as aversive.

Yet, while Nicole oriented to autism as being a disability, she softened her claim with the word "sometimes" (Edwards, 2000), leaving open the possibility that autism does not solely function as a disability. She moved to complicate and rework the meaning of autism, stating that autism is "gunna be (.) to his advantage" (lines 2-3). So, she constructed autism as fluid and flexible, functioning as both disability and advantage. The "gift" of autism was worked up in connection to (lines 3-5) George's real differences — "he sees things differently (.) than we do" and "he will able to figure things some…that we can't" (lines 3-5). Nicole's use of the pronoun "we" constructed a contrast between a person with autism and a person without autism. Not only does George have a gift, he is positioned as different from us, the presumed majority. When I asked Nicole to clarify further (lines 10-11), she moved to name George's advantage more precisely, naming his ability to "process" and "visualize" as exceptionalities. These were particularly interesting lexical choices in that popular and medical discourses surrounding autism often point to visualizing capacities as exceptionalities for many individuals with autism labels (e.g., Grandin & Scariano, 1986). I was particularly struck by how Nicole eventually moved to link George's advantage to "one certain area that he loves" (lines 20-23). Earlier in the interview, Nicole had described George's "obsessions" with fans, vents, furnaces, and air conditioners as being part of his disability and as inherent traits oriented to as oddities by those who do not know George well. Yet, now, these "obsessions" were no longer pathologized, but reframed as a potential advantage.

Siebers (2008) suggested that "it is easy to mythologize disability as an advantage" in that "disabled bodies" are oriented to as "unusual" and bend "the rules of representation to such extremes that they must mean something extraordinary" (pp. 63-64). Some have suggested that a sentimentalized notion of disability works to minimize the realities of being oriented to as different and living with real impairment effects. Davis (1995) noted that in "narrativizing an impairment, one tends to sentimentalize it and link it to the bourgeois sensibility of individualism" (p. 4). While the move to romanticize disability categories can be seen throughout popular media and has been criticized within disability studies literature (Osteen, 2008), it is important to consider the alternative. Consider how Nicole might have otherwise constructed her son. What if, for example, Nicole had only worked up a definition of autism that included a deficit orientation? What if she had solely constructed autism as nothing more than a disabling impairment? She could have drawn upon the dominant discourses surrounding autism that orient to an "autistic brain" as "broken" and in need of being "fixed" (Osteen, 2008, p. 12), with no advantage to be found. Perhaps, then, the construction of autism as a deficit stands in contrast to the construction of autism as a gift. I argue that whether one "reads" Nicole's orientation as a romanticized notion of autism or not, her discourse worked to complicate understandings of autism. Autism was not simply oriented to as a disability, for it somehow also functioned as a gift. The positioning of George's identity then was negotiated and fluid, including, in the same moment, both a disability, which Nicole "hates" to call it, and a gift.

While some of the parents spoke about autism as being a potential "gift," linking the very notion of autism to a special way of thinking, a minority of the parents oriented to autism as something to be overcome or even to "beat." In an attempt to include examples that point to the variability within my data set, Excerpt Three illustrates this notion of overcoming, curing, or even defeating autism. Just prior to the start of Excerpt Three, Alisha had listed all of the skills and abilities that her son Picasso had recently acquired, all of which medical doctors had told her he would never achieve.

Excerpt Three
  1. Jessica: What do you mean beat it ↑ can you say a little bit more about that↑ you've
  2. said that twice (.)
  3. Alisha: Um (4) I really believe that I can get Picasso to a point and my other son to
  4. points that we can possibly drop that diagnosis=
  5. Jessica: =Mm hm=
  6. Alisha: =I want I want autism gone I want autism out of our lives=
  7. Jessica: =mm hm=
  8. Alisha: =I want it to be in the past (.)
  9. Jessica: mm hm (.)
  10. Alisha: So even if Picasso has an Asperger's diagnosis someday I'm okay with that
  11. as long as we're able to just (.) make that step forward

The excerpt began with me requesting clarification around Alisha's use of the term "beat." Alisha took up my question by emphasizing her belief that the diagnostic label itself will one day be dropped (lines 3-4). With two sons with autism labels, Alisha positioned this notion of beating autism as being synonymous with dropping or ridding of the diagnosis itself. Autism, then, was constructed as representing something undesirable, something that she wanted "gone" and in the "past" (line 6 and line 8). Alisha's next move positioned an Asperger's label as a more desirable label, naming it a "step forward" (lines 10-11). Alisha's construction of Asperger's as a "step forward" evoked the concept of autism as a spectrum of variable disorders, moving from undesirable to more desirable, from low-functioning to high-functioning. Osteen (2008) noted that there is a rift in the "autism culture" that divides the "so-called 'high-functioning' and the 'low-functioning' people" with autism labels (p. 6). In fact, much of the popular writing around autism has constructed individuals with autism labels as either savants or worthy of public attention only after they have overcome their autism (Osteen). With autism constructed as a spectrum, certain autism labels, particularly Asperger's, are constructed as more desirable than other autism labels, even being oriented to as a "step forward."

Indeed the popularized claim that autism is something to beat, overcome, or defeat (McCarthy, 2007) is not without contestation. For instance, some autism experts construct autism as a "developmental disorder which lasts throughout life" (Happe, 1994, p. 6) and can never be defeated. Disability scholars and advocates have also participated in this conversation, critiquing the very notion of overcoming a disability and linking the mere suggestion to deep seeded cultural prejudices against individuals with disability labels (Ferguson & Asch, 1989). Alisha's construction of autism was not without complication; recasting a child as recovered or even potentially recovered, according to some, only serves to omit irreducible human differences, with bio-remedies positioned as the force that will potentially recapture what a child might lose to autism (Rocque, 2010). Yet, if Alisha had taken up the common construction of autism as a threat to the very humanity of her child, would she still have been able to position her son as competent and capable of learning how to do all that the doctors said he would never learn to do (e.g., being potty trained, communicating his needs, etc.)? While few participants oriented to autism as something to be overcome, Alisha's talk, like the majority of the participants, also continued to point to the common pattern of constructing autism as fluid and shifting.

While the meanings of autism remained elusive for the majority of the parents, at some point in each participant's interview, the parent emphasized the realities of their child's impairment effects. They often minimized the value and importance of even considering or talking about a particular child's actual or real disability label. Instead, the participants concluded, like John, a participating parent, that "at the end of the day we're still going through the same process." Excerpt Four illustrates how John moved to emphasize the realities of his son's needs.

Excerpt Four
  1. John: So um (1) 'cuz I don't know PDD-nos what does that mean well it means he
  2. has autism but what does that you know oh he's high functioning autistic okay so
  3. now does that mean that you know there's an upgrade from PDD-nos on to
  4. Asperger's and that Asperger's is maybe (.) maybe a little bit better understood or
  5. maybe more socially accepted [you know
  6. Jessica: mm]
  7. John: that I you know I don't know (1) but you know at the end of the day we're
  8. still (1) going through the same process=
  9. Jessica: =Mm hm=
  10. John: =the same classes the same The Green Room [the clinic] the same you know
  11. help at the public school system the coaching the constant (.) you know um I guess
  12. (.) fostering and mentoring at home =
  13. Jessica: Mm hm=
  14. John: =to help him with his uh disability=

This "process," as described by the participants, included acquiring and providing assistance and support to the participating children as they learned to function in institutional and community spaces that privileged communication styles and ways of behaving that were often remarkably different than their own. That which could be positioned by some as "limiting," like Thomas (1999) suggested, might be oriented to as an effect of the individual's impairment and not necessarily indicate disability. Yet, such impairment effects, without accommodations, can become "the marker for other [potential] restrictions of activity" (p. 43). So, for instance, as the participants spoke of the realities of needing to identify ways to teach a child how to safely cross the street or communicate with an alternative communication device, they frequently minimized the importance of defining the actual meaning of autism. Rather they emphasized that regardless of the child's "official" label, the child would potentially benefit from outside supports, most of which were out of reach without an insurance-approved disability label.

The participants' emphasis on a child's impairment effects is a particularly intriguing finding; in recent years, disability studies scholars have expressed concern regarding an over-socialized understanding of impairments, which can make it difficult to theorize about impairments as being potentially separate from the socially created notions of disability. Some disability scholars have minimally attended to impairment, perhaps for good reason, as French (1993) noted:

It is no doubt the case that activists who have worked tirelessly within the disability movement for many years have found it necessary to present disability in a straightforward, uncomplicated manner in order to convince a very skeptical world that disability can be reduced or eliminated by changing society, rather than by attempting to change disabled people themselves. (p. 24)

Nevertheless, it is possible, as Thomas argued (2004), to consider the ways in which impairments may "directly cause some restrictions of activity," while maintaining "that such non-socially imposed restrictions of activity do not constitute 'disability'" (p. 581).

Not only is it possible to attend to impairment effects, but some would suggest it is imperative. As Shakespeare and Watson (2002) stated: "We are not just disabled people, we are also people with impairments, and to pretend otherwise is to ignore a major part of our biographies" (p. 11). I aimed, then, to consider autism as a disability category in complicated ways, hoping not to over-socialize my understandings, while simultaneously viewing autism as always being discursively constructed and reconstructed. As I did so, I sought to attend to how the participants made impairments relevant, noting how "needing help" was often coupled with a child's real impairment effects. The following paragraph, taken from my research journal, illustrates my commitment to considering the bodily realities of the participating children, as made relevant in the data:

July 18, 2010 7:02 pm

There is something that I'm calling "ethic of the participants:" I do not want to omit or avoid discussing the challenges of impairment. I've now listened to many parents describe the disabling effects of their child's impairments. I can't talk about my data without making explicit the real moments of challenge the children, parents, and therapists make relevant in their everyday practices. The participants shared/worked up these "real" moments in which a child experienced disabling impairments and "help" was needed. One participating father said that he didn't care what "they" called it, just give his "kid some help." I see that at times scholars who take up "radically constructionist" positions risk minimizing the everyday real moments of challenges of children and families. I think we need to complicate our understandings.

With autism, located at the intersection of biology and society (Osteen, 2008), I turn now to share my analysis/interpretation of an excerpt that illustrates how many of the parents discursively minimized the label of autism and other disability labels, while at the same time making relevant the real needs of the child. The minimization of the child's "official" label was coupled with an emphasis upon the needs of the child, which I came to interpret as the impairment effects (Thomas, 2004). Consider the following excerpt taken from the interview of Joel and Diane, the parents of Diesel Wiesel. This excerpt begins with Diane describing the process of acquiring a diagnosis for Diesel Wiesel.

Excerpt Five
  1. Diane: we had to go through he had to go through everything and check everything
  2. until (.)
  3. Joel: it took us a while but I think this was around five and a half↑ (.)
  4. Diane: yeh that was when he was on about when he started on medication (1)
  5. Joel: and that's when we first said alright we're going to try one you know and=
  6. Jessica: =mm hm=
  7. Joel: =see (.) and it just evolved over the years you could see alright this is
  8. obviously more than ADHD=
  9. Jessica: =mm hm=
  10. Joel: =it's well then you get the PDD-nos↑ because they don't know what else to
  11. call it and (2) I don't care what they call it (laughs) anymore you know I wrote diag-
  12. his diagnosis down (points to demographic form) but I don't=
  13. Jessica: =mm hm=
  14. Joel: it it's it doesn't matter (.) call it what you want (2) you know he needs help↑ he
  15. needs accommodations

The excerpt began with Diane recounting the required ("we had to") technical process that led to Diesel Wiesel's diagnosis, serving to link the meaning of Diesel Wiesel's diagnostic labels to the institutionalized practices that made their naming possible (lines 1-2). Similar to many of the other participants, Joel described the diagnostic process itself as one that "evolved over the years," (line 7) never standing still or without questions. His use of the word "evolved" evoked a sense of fluidity with the very diagnostic process itself. The initial diagnosis of ADHD was not constructed as invariable, with Joel positioning the real issue being "obviously" something "more than ADHD" (line 8). Perhaps, his use of the word "obviously" functioned to position a differing diagnostic label as reasonable and logical. When Joel introduced his son's most recent disability category of PDD-nos, he did not orient to the diagnostic label as being obvious and representative of some internal biological state. Instead, he minimized the label's veracity with the statement, "because they don't know what else to call it" (lines 10-11). Joel continued by emphasizing that he doesn't care what "they call it," with "they" likely referring to the psychologist and psychiatrist who diagnosed their son, both of whom he and Diane spoke of earlier in the interview. Further, not knowing what to call "it" pointed to the realities that something was adrift with Diesel Wiesel. Yet, the very individuals that most would presume to hold 'expert' knowledge, i.e., the psychologists or diagnosing experts, were positioned as not knowing what to call "it."

Prior to pointing to the demographic form that Joel and Diane had completed in order for their son to participate in this study (line 11), Joel laughed. When I engaged in the analysis, I was surprised by the location of the laughter and decided to consider its function further. First, I presumed that our interview talk, focused on a child with multiple consequential diagnostic labels, was sensitive and potentially troubling for the speakers. Thus, as I attempted to make sense of what Joel's laughter might be doing discursively, I drew upon Jefferson's (1984) conversation analysis work around the way in which laughter is often used in talk that focuses on potentially troubling topics. Jefferson reported that in "talk laced with trouble," speakers often deal with the trouble or discomfort by deploying laughter (p. 351). She noted that laughter typically functioned to suggest that "although there is this trouble," the speaker is "managing" and dealing with the "trouble lightly" (p. 351), while simultaneously making relevant just how troubling the topic is. So, I interpreted Joel's laughter as functioning to add levity to a troubling and serious topic — his son's multiple diagnostic labels.

Joel concluded by pointing to the demographic form in which he had responded to the following two questions: "Does your child have a diagnostic label? Yes or No (circle one)" and "If yes, what is/are the diagnostic label(s)?" On this form, Joel had circled "yes" and written the following diagnostic labels: "PDD-nos, Bipolar, OCD, ADHD, and Tourette's." As he pointed to the form, both Diane and I looked down at the form, while Joel continued with, "it it's it doesn't matter (.) call it what you want" (line 14). The phrase "it doesn't matter" worked to undermine the legitimacy of the diagnostic labels and suggested that something else far more important was at stake. As was true of all of the participants, the reality of needing supports for their child often trumped the veracity of a given label. While some parents took up labels with more adamancy than Joel, all of the parents emphasized the realities of not always knowing how to support their child. So, as was made relevant in Joel's talk, the diagnostic label was only a means to an end—the key that opened the door for "help" and "accommodations" (line 14). In many ways, the participants' talk worked to undermine the "truth" of untenable diagnostic labels, complicating the meanings of autism and pointing to the ways in which impairment effects, without accommodations, might become a socially created disability (Reindal, 1999).


With a great deal of research surrounding autism predating or simply evading the discursive turn, much of the research has been conducted from a realist position. In many ways, this has resulted in ascribed pathologies and fixed orientations to autism. More particularly, researchers outside of disability studies have rarely presumed that meanings are not given or guaranteed. The meaning(s) surrounding autism, then, has frequently been positioned as something that can be arrested and perhaps eventually fixed. Further, the autism experience has most often appeared in the discourse of our times as an experience that can only be understood through a negative interpretation. The discourses surrounding autism, both "official" (e.g., psychological definitions) and popular (e.g., television shows), are most often deployed within the framework of a meta-text about a "crazed," "aloof," and "alone" individual. Autism has most often been framed as a clearly definable, internal trait that can be identified and treated. Local understandings of autism, those produced by parents and youth with autism for instance, can act to challenge this meta-text, complicating understandings and challenging persistent structures and discourses that attribute pathology and simplistic definitions of being.

At present, far less empirical work, particularly at the level of micro-discourses, has illustrated the ways in which the meanings that surround autism are negotiated, resisted, contested, and/or taken up. I argue, then, that in pursuing research focused in the places people are "ordinarily and functionally employing constructs of interest" (Sacks, 1992, p. 27), new and layered understandings might be generated. Nadesan (2005) suggested that the significance of research that examines the social construction of autism "extends beyond autism as a distinct disorder to include the ideas and practices whereby we constitute everyday life and social institutions, including the processes that will ultimately produce the opportunities for personhood in the early twenty-first century" (Nadesan, p. 3). In lieu of presuming that autism is ahistorical and exists apart from institutionalized and technical practices, orienting to autism as culturally and socially embedded leaves opens up new possibilities for alternative meanings to be produced.

Indeed the dominating discourses of the day that surround autism point to "a series of choices made at different times between different possible worlds" (Skinner, 1998, p. 117), implicitly illustrating that autism is always coupled with the cultural models that make its naming possible. Yet, there remain always junctures in time when we have opportunities to generate new discourses and possibilities for constructing and reconstructing one another. When "equipped with a broader sense of possibility, we can stand back from the intellectual commitments we have inherited and ask ourselves in a new spirit of enquiry what we should" (Skinner, p. 117) do in our everyday living, while acknowledging that "impairment" and "disability" is always already dependent upon the language and power structures of the present and past. This is particularly critical as society at large engages with individuals "…whose physical, mental, cognitive and sensory abilities….fall outside of the scope of what is currently defined as socially acceptable" (Rauscher & McClintock, 1996, p. 198). Perhaps through embracing the idea that meanings of autism are situated allow for the identities of those with autism labels and their families to be constructed and reconstructed in ways that position them as competent, and capable of participating in society, while inviting "outsiders" to make room for behaviors and communication style presumed to be non-normative. Parent, practitioners, and society, then, by orienting to autism as having shifting meanings, might avoid constructing fixed and stable identifies for and with those with whom they work and interact, inviting parents and individuals with autism labels themselves to offer accounts that function to shape and reshape their social realities.

Much like the memoirs of parents with children with autism labels who felt tensions between constructions of autism as "a gift" and autism as a "real" and "unconquerable, debilitating force" (Osteen, 2008, p. 19), this study's findings point to the ways in which parents talked about autism in variable and, at times, contradictory ways. Similar to the published roundtable discussion of parents and siblings focused on neurodiversity and caregiving (Savarese et al., 2010), the "journey to neurodiversity" and insistence upon accommodation, as also seen in Joel's talk (Excerpt Five), the findings further illustrate the ongoing and multidimensional process of coming to make sense of a child being identified as autistic. As illustrated in the analysis of the excerpts, the talk surrounding autism is never trivial, as entire social worlds are built in and through talk. Yet, with a commitment to questioning taken-for-granted ways of talking and constructing identities, we can collectively create moments of solidarity that work against all that functions to pathologize, exclude, and stereotype those with autism labels. In the struggle to accommodate "difference as difference (not pathology)" (Savarese, p. 7), ongoing analysis of everyday discourses surrounding autism has the potential to challenge the "perceived wisdom of those at society's center," generating "a context to understand and transform established belief systems" about normality and abnormality (Solorzano & Yosso, 2002, p. 156).


  • Abu-Lughod, L. (1992). Writing against culture. In R. G. Fox (Ed.), Recapturing anthropology: Working in the present (pp. 137-162). Santa Fe, NM: School of American Research Press.
  • Ashby, C. E. (2010). The trouble with normal: The struggle for meaningful access for middle school students with developmental disability lab. Disability & Society, 23(3), 345-358.
  • Atkinson, P. (1990). The ethnographic imagination: Textual constructions of reality. London: Routledge.
  • Avdi, E., Griffin, C., & Brough, S. (2000). Parents' constructions of the problem during assessment and diagnosis of their child for an autistic spectrum disorder. Journal of Health Psychology, 5(2), 241-254.
  • Avery, D. (1999). Talking 'tragedy:' Identity issues in the parental story of disability. In M.  Corker & S. French (Eds.), Disability discourse (pp. 116-126). Buckingham: Open University Press.
  • Bagatell, N. (2007). Orchestrating voices: Autism, identity and the power of discourse. Disability & Society, 22(4), 413-426.
  • Braddock, D. L., & Parish, S. L. (2001). An institutional history of disability. In G. L. Albrecht, K. D. Seelman, & M. Bury, (Eds.), Handbook of disability studies (pp. 11-68).  Thousand Oaks, CA: Sage.
  • Broderick, A. A. (2009). Autism, "recovery (to normalcy)," and the politics of hope. Intellectual and Developmental Disabilities, 47(4), 263-281.
  • Broderick, A. A., & Ne'eman, A. (2008). Autism as metaphor: Narrative and counter narrative. International Journal of Inclusive Education, 12(5-6), 459-476.
  • Corker, M., & French, S. (1999). Reclaiming discourse in disability studies. In M. Corker & S. French (Eds.), Disability discourse (pp. 1-20). Buckingham: Open University Press.
  • Davis, L. J. (1995). Enforcing normalcy: Disability, deafness and the body. New York, NY: Verso.
  • Edwards, D. (1999). Emotion discourse. Culture & Psychology, 5(3), 271-291.
  • Edwards, D. (2000). Extreme case formulations: Softeners, investment, and doing nonliteral. Research on Language and Social Interaction, 33(4), 347-373.
  • Edwards, D., & Fasulo, A. (2006). "To be honest": Sequential uses of honesty phrases in talk-in-interaction. Research on Language and Social Interaction, 39(4), 343-376.
  • Edwards, D., & Potter, J. (1993). Language and causation: A discursive action model of description and attribution. Psychological Review, 100(1), 23-41.
  • Fasulo, A., & Fiore, F. (2007). A valid person: Non-competence as a conversational outcome. In A. Hepburn & S. Wiggins (Eds.), Discursive research in practice: New approaches to psychology and interaction (pp. 224-246). Cambridge: Cambridge University Press.
  • Ferguson, P. M., & Asch, A. (1989). Lessons from life: Personal and parental perspectives on school, childhood and disability. In D. Biklen, D. Ferguson, & A. Ford (Eds.), Schooling and disability: Eighty-eight yearbook of the national society for the study of education: Part II (pp. 108-131). Chicago: University of Chicago Press.
  • Flyvberg, B. (2001). Making social science matter: Why social inquiry fails and how it can succeed again. Cambridge, UK: Cambridge University Press.
  • French S. (1993). Disability, impairment or something in between. In J. Swain, V. Finkelstein,  S. French, & M. Oliver (Eds.), Disabling barriers: Enabling environments (pp. 17-25).  London: Sage.
  • Glynne-Owen, R. (2010). Early intervention and autism: The impact of positivism and the call for change. International Journal of Children's Rights, 18, 405-416.
  • Grandin, T., & Scariano, M. (1986). Emergence: Labeled autistic. Novato, CA: Arena.
  • Grue, J. (2011). Discourse analysis and disability: Some topics and issues. Discourse & Society, 22(5), 532-546.
  • Hammersley, M. (2010). Reproducing or construction? Some questions about transcription in social research. Qualitative Research, 10(5), 553-569.
  • Happe, F. (1994). Autism: An introduction to psychological theory. Cambridge, MA: Harvard University Press.
  • Hepburn, A., & Wiggins, S. (2005). Developments in discursive psychology. Discourse & Society, 16(5), 595-601.
  • Jefferson, G. (1984). On the organisation of laughter in talk about troubles. In J. M. Atkinson, Maxwell & J. Heritage (Eds.), Structures of social action: Studies in conversation analysis (pp. 346-369). Cambridge University Press, Cambridge.
  • Jefferson, G. (2004). Glossary of transcript symbols with an introduction. In G. H. Lerner (Ed.), Conversation analysis: Studies from the First Generation (pp. 13-31). Amsterdam: John Benjamins.
  • Lester, J. N. (2012). Researching the discursive function of silence: A reconsideration of the  normative communication patterns in the talk of children with autism labels. In G. S. Cannella & S. R. Steinberg (Eds.), Critical qualitative research reader (pp. 329-340) New York, NY: Peter Lang.
  • Lester, J. N. & Paulus, T. M. (2012). Performative acts of autism. Discourse & Society, 12(3), 259 - 273.
  • Lutz, C. A. (1990). Engendered emotion: Gender, power, and the thetoric of emotional control in American discourse. In C. A. Lutz & L. Abu-Lughod (Eds.), Language and the politics of motion (pp. 69-91). Cambridge: Cambridge University Press.
  • Maurice, C. (1993). Let me hear your voice. New York, NY: Knopf.
  • McCarthy, J. (2007). Louder than words: A mother's journey in healing autism. New York, NY: Dutton Adult.
  • Nadesan, M. H. (2005). Constructing autism: Unraveling the 'truth' and understanding the social. New York, NY: Routledge.
  • Ochs, E., Kremer-Sadlik, T., Sirota, K. G., & Solmon, O. (2004). Autism and the social world: An anthropological perspective. Discourse Studies, 6(2), 147-183.
  • Osteen, M. (2008). Autism and representation: A comprehensive introduction. In M. Osteen (Ed.), Autism and representation (pp. 1-47). New York: Routledge.
  • Potter, J. (1996). Representing reality: Discourse, rhetoric and social construction. London: Sage.
  • Potter, J. (2004). Discourse analysis. In M. A. Hardy & A. Bryman (Eds.), Handbook of Data Analysis (pp. 607-624). London: Sage.
  • Rapley, M., Kiernan, P., & Antaki, C. (1998). Invisible to themselves or negotiating identity? The interactional management of 'being intellectually disabled.' Disability & Society, 13(5), 807-827.
  • Rauscher, I., & McClintock, J. (1996). Ableism curriculum design. In M. Adams, L. S. Bell, & P. Griffen (Eds.), Teaching for diversity and social justice (pp. 198-231). New York: Routledge.
  • Reindal, S. M. (2008). A social relational model of disability: A theoretical framework for special needs education? European Journal of Special Needs Education, 23(2), 135-146.
  • Rosen, M. D. (2010, September). We battle constantly over our autistic child. Ladies' Home Journal. Retrieved December 13, 2010, from http://www.lhj.com/relationships/can-this-marriage-be-saved/kids/we-battle-constantly-over-our-autistic-child/
  • Rocque, B. (2010). Science fictions: Figuring autism as threat and mystery in medico-therapeutic literature. Disability Studies Quarterly, 30(1).
  • Sacks, H. (1984). Everyday activities as sociological phenomena. In J. M. Atkinson, & J. Heritage (Eds.), Structures of social action: Studies in conversation analysis (pp. 411-429). Cambridge, UK: Cambridge University Press.
  • Sacks, H. (1992). Lectures on Conversation. Oxford: Blackwell.
  • Savarese, R. J., Block, P., Chew, K., Cumberland, D., Duffy, J., Etlinger, S., Klar, E., Osteen, M., & Wilson, J. C. (2010). Parent & sibling roundtable: Neurodiversity and caregiving. Disability Studies Quarterly, 30(1), 1-64.
  • Siebers, T. (2008). Disability theory. Ann Arbor, MI: The University of Michigan Press.
  • Shakespeare, T., & Watson N. (2002). The social model of disability: An outdated ideology. Research in Social Science and Disability, 2, 9-28.
  • Skinner, Q. (1998). Liberty before liberalism. Cambridge, UK: Cambridge University Press.
  • Solorzano, D. G., & Yosso, T. M. (2002). A critical race counterstory of race, racism, and affirmative action. Equity & Excellence in Education, 35(2), 155-168.
  • Speer, S. A. (2001). Reconsidering the concept of hegemonic masculinity: Discursive psychology, conversation analysis and participants' orientations. Feminism & Psychology, 11(1), 107-135.
  • Steinberg, S. R., Kincheloe, J. L., & Hinchey, P. H. (1999). The post-formal reader: Cognition and education. New York: Falmer Press.
  • Stribling, P., Rae, J., & Dickerson, P. (2007). Two forms of spoken repetition in a girl with autism. International Journal of Language & Communication Disorders, 42(4), 427-444.
  • Thomas, C. (1999). Female forms: Experiencing and understanding disability. Buckingham, UK: Open University Press.
  • Thomas, C. (2004). How is disability understood? An examination of sociological approaches. Disability & Society, 19(6), 569-583.
  • Torfing, J. (1999). New theories of discourses: Laclau, Mouffe and Zizek. Oxford, UK: Blackwell Publishers Ltd.
  • Trilling, L., & Massin, D. (2010). Parenthood [ABC television series]. United States: Imagine Television and Universal Media Studios.
  • Winfrey, O. (2007, April). "The Faces of Autism" on The Oprah Show. Chicago, IL: Harpo Productions, Inc.
  • Wolff, S. (2004). The history of autism. European Child & Adolescent Psychiatry, 13(4), 201-208. 

Jessica Nina Lester is an Assistant Professor of Educational Psychology at Washington State University. Her research interests include qualitative methodologies, the social and historical construction of disabilities, and critical notions of human learning and development.

Appendix A: Transcription Symbols

The transcription conventions utilized were developed by Jefferson (2004) and adapted for use within the context of this research study.

Upward arrows represent marked rise in pitch.
Downward arrows represent a downward shift in pitch.
> < Text encased in 'greater than' and 'less than' symbols is hearable as faster than the surrounding speech.
< > When turned 'greater than' and 'less than' symbols encase speech, the speech is hearable as stretched or slower than the surrounding speech.
= Equal signs at the end of a speaker's utterance and at the start of the next utterance represent the absence of a discernable gap.
Cu- cut-off word or sound
e Underlining represents a sound or word(s) uttered with added emphasis.
(laugh) Description of what can be observed and/or heard
[ ] Extended square brackets mark overlap between utterances.
(7) Numbers in parentheses indicate pauses timed to the nearest second. A period with no number following (.) indicates a pause which is hearable, yet too short to measure.
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