Abstract

This study explores the production of a counterhegemonic discourse of “autistic normalcy” among adults with high-functioning autism by analyzing notions of diagnosis. The discourse analyses are based on material from ethnographic fieldwork in a Swedish educational setting. Study participants were 3 male and 9 female adults who had been diagnosed with Asperger syndrome. The notion of diagnosis comprises issues concerning coming out and knowledge production. The findings capture an ongoing reformulation process among people involved in the autistic self-advocacy movement when it comes to the meanings of Asperger syndrome and what it means to be a person with Asperger syndrome.

Diagnosis can be seen as an expression of social conflict (see, e.g., Brown, 1995), as a relational process in which different parties approach illnesses with different explanations—for example, as something that arises when individuals, professions, or societies dynamically alter the boundaries of what they perceive as normal or problematic (Jutel, 2009). The differences between “lay and professional ways of knowing” (Brown, 1992), or diagnosis as a negotiation between medical and lay perspectives (see, e.g., Zavestoski et al., 2004), can be seen as exemplifying diagnosis as social conflict. Diagnostic terms can both challenge and uphold medical authority (Jutel, 2009). A diagnosis can be understood as an expression of negotiated knowledge and can also be seen as something that legitimizes experience-based knowledge (see, e.g., Dumit, 2006; Zavestoski et al., 2004). A diagnosis may provide security by offering a name for an experience; it also bestows legitimacy, and thus social recognition, because it signals that an individual's talk of his or her experience is taken seriously by others, both health care professionals and those in the social environment (Zavestoski et al., 2004). A shared diagnosis can also help create a collective identity among patients (Jutel, 2009).

Studies of self-advocacy among adults with autism describe the diagnosis of autism as something that gives a name to a diverse range of practices (e.g., Bagatell, 2007; Singer, 1999). Brownlow and O'Dell (2006), in their study in an online forum of identity formation among adults with autism, demonstrated how adults ascribe meaning to and act on the basis of their own experience of autism. Professional expressions of knowledge are challenged by the construction of lay diagnostic standards, such as alternative inclusion criteria and an emphasis on autism as a strength, a personality, and something to be proud of, rather than as a weakness and something to cure, formulating an alternative experienced-based knowledge of autism (see, e.g., Brownlow, 2010).

The diagnosis of autism can here be seen as something to be used rhetorically in the autistic self-advocacy movement, as part of the production of an alternative, counterhegemonic normalcy, that is, what is experienced as “‘normal’ for people with autism” by adults with autism (see Bagatell, 2007). This normalcy is sometimes formulated in juxtaposition to external others, such as neurotypicals (NTs; see, e.g., Bagatell, 2007; Brownlow, 2010; Brownlow & O'Dell, 2006), and sometimes in relation to differences within the autism spectrum group.

This article explores the production of this counterhegemonic discourse of autistic normalcy among adults with high-functioning autism (Asperger syndrome) by analyzing concepts of diagnosis. What meanings do adults with Asperger syndrome ascribe their diagnoses? How do they reinterpret their diagnoses in relation to their experience-based knowledge of Asperger's?

Method

The study is based on data from an ethnographic fieldwork in a Swedish educational setting, that of folk high schools. Folk high schools are a type of school for adults that is common in the Nordic countries. In Sweden, these schools provide educational programs for people age 18 years and older who have received an Asperger's diagnosis. These programs may comprise general education courses leading to the equivalent of an upper secondary school certificate, supplementing earlier studies, or training courses oriented toward an occupation or working life. From these programs, a 1-year occupational training course is selected. One class consisting of 10 students ranging in age from 20 to 50 years (seven women, three men) was selected as the focus of this study. In addition to the students, the class included two female teaching assistants with Asperger's (Helena and Johanna) and two female teachers without the syndrome. This study focused on both the students and the assistants, so in the remainder of this article, the group refers to both students and assistants. Most of the people in the group had received their diagnoses as adults, and all had received the diagnosis more than a year before. Most participated regularly in on- and offline self-advocacy activities produced by and aimed at adults with autism. These activities could be local chat groups, organizations, or online forums. The group met 5 days a week over a period of a year, in some cases outside school hours as well.

I accompanied the students throughout the school day, 2 days a week, for 3 months. While making my observations, I usually sat silently and took notes on various dialogues between students, assistants, and teachers, asking questions if I did not understand something. I also engaged in the informal conversations that took place, mainly during breaks. At the end of each day of observation, I wrote detailed field notes focusing on dialogues recorded in my day's notes or that I remembered. At the end of each day's field notes, I made analytical notes in which I reflected on my own feelings and on the conversational themes. The field notes totaled 143 pages. The information was processed thematically.

In addition to the observation, I held three voluntary group interviews, each including between four and six participants. The first group interview included only women, whereas the second and third interviews also included one and two men, respectively. Each session lasted about 1 hr and 15 min. The discussions were based on themes from my field notes and analytical reflections (see Sperry & Mesibov, 2005). The discussions were audio-recorded, transcribed, and then processed thematically. The transcribed group interview material totaled 22 pages for the first group interview, 26 for the second, and 23 for the third. I introduced themes to the group interviews but soon realized that more active involvement in the group interviews tended to disturb the social interaction between participants.

Both group interviews and field notes were analyzed from a discursive psychological perspective (Edley, 2001; Wetherell & Potter, 1988). Passages dealing with diagnosis were selected for detailed analysis. This material was then read and reread to distinguish patterns both within and between the passages and to formulate hypotheses about their functions. The final paper was translated into English.

My own experience of people with Asperger's was limited before embarking on the fieldwork. I do not have such a diagnosis myself. During the fieldwork, I tried to learn how to behave in order to fit into the group, which made me experience Asperger's within the group as both a verbal and a bodily discourse. The group treated me in a friendly way and made me feel welcome and part of it. Honesty about myself and openness about the research process were important aspects of the method. The field notes were submitted to a virtual learning environment, open only to the students, assistants, and teachers in the studied class. Participants were given the opportunity to comment on the field notes during the group interviews or by e-mailing me. The transcripts of the group interviews were e-mailed to the participants, who were given the opportunity to read and comment on the preliminary versions of my written texts. In response to participant feedback, I revised the methodological section and added a reflective section. The study participants decided to describe the course as an occupational training course. Because the course is unique in Sweden, I would threaten participant anonymity if I described the aims and content of the course more specifically.

The participants preferred to refer to themselves as Aspergers to emphasize Asperger syndrome as an identity, an essential part of their personality. This is the reason I have principally chosen to use this term rather than “people-first language” (for discussion of this matter, see, e.g., Brownlow, 2010; Davidson & Henderson, 2010). However, in cases in which the participants referred to other concepts, for example, “people with a diagnosis” or “we who are living with Asperger's,” I have also used these phrases.

Results

The key themes identified in the data and linked to the notion of diagnosis are presented here; these comprise issues concerning coming out and knowledge production.

Receiving the Diagnosis

Receiving the diagnosis was described by the participants as an important milestone on the path to self-understanding (i.e., coming out to oneself), giving meaning to past and present experiences (see, e.g., Madden & Sim, 2006; Samuels, 2003). Group member Maria described it as something that made “the pieces of the puzzle [fall] into place, so to speak, what the problem was, the specific problem” (see Brown, 1995; Madden & Sim, 2006). She continued:

And so there was also this along with getting the diagnosis, that I actually got a language, too. For the first time in my life, I could express myself and my own inner being—who I am, so to speak. Before that, I couldn't.

Several participants emphasized the diagnosis as a part of a process (see, e.g., Madden & Sim, 2006). This process was described by Maria as something involving “a vital step,” as one in which individuals were forced to “reexamine [their] whole life,” as a “gigantic process of reinterpreting your whole life,” as something that “[started] a process of maturing in me”; Anna described it as “a kind of grief work, and rebuilding work.”

The diagnosis also helped group members identify with others and feel normal within a group of people with autism. Anna described how, even before she received the diagnosis, she felt a “certain kinship with autism, that is to say, autistic children, like in films and that sort of thing, you'd think, ‘Yes, I'd probably be able to come up with how you should communicate with them.’” Several participants described encounters with people with autism as incidents that led them to seek diagnostic evaluation themselves. For example, Kristina, who worked for a time as a resource person for a child with autism, said that her encounter with the child prompted her “to enter this world” and start reading about autism. This brought on a realization—“This applies to me, doesn't it, and explains why I don't function in social settings”—and caused her to seek diagnostic evaluation. Anna described the diagnosis as a “key” that led to her finding out that “there were other people who had similar . . . who were like me”:

And it was actually a feeling of, that I actually felt enormously satisfied with the diagnosis. It felt as though I'd become normal. Because, well, because there were other people who had it and because there wasn't anything especially weird about me in that case.

Receiving a diagnosis meant that “you're much kinder to yourself” (Johanna) and can “focus more on what you need” (Kristina). Anna described how she needed a lot of “processing time” when she had attended many meetings or had met many people in the course of a day. Following her diagnosis, she could “forgive herself for [this] or give it an OK.” Kristina, in the same spirit, felt that she had learned to know herself better: “So you accept that ‘OK, now I'm like this for a few days.’ Then you allow yourself—I don't get angry because I am so unconstructive, so to speak [laughs], or asocial.”

An Ambivalent Ideal of Openness

Openness, or coming out to other people, stood out as an overall ideal in the group: Not coming out was considered something that needed to be explained (cf. Davidson & Henderson, 2010). Johanna described how she made a practice of telling people that she had Asperger syndrome, noting that, when people make judgments, “that makes me particularly want to go and say that I have Asperger's.” She also noted that there “is nothing hard about coming out about something you don't think there is anything wrong with” and stated that she thought it depended on “how open you are to other things yourself” and “what attitude you have yourself toward other ‘abnormal’ or divergent phenomena or people.” Mikael stressed the significance of feeling that “you have finally hit on the right thing” as a substantial reason for why he was so open about his diagnosis.

Despite the ideal of openness, the participants mentioned various problems that openness may entail. Several people in the group stressed that one substantial problem was insufficient knowledge among both people diagnosed with Asperger's and their parents. Eva stated that it is “not hard to come out of the closet if you know exactly what it's about.” Kristina described her experience of not being believed by people she came out to, because she did not match their ideas about people with Asperger syndrome. Kristina's experiences of misrecognition in the NT environment were shared by several other participants. Johanna even described doubting one's own diagnosis as something that “almost all Aspergers” did from time to time, especially “those times when you're feeling good and getting an extra lot done.”

It was also not self-evident when or to whom one should come out. Mikael said that he mentioned both his Asperger diagnosis and his special interest in his presentation on an Internet dating site that he used, since it would then “be much simpler to talk with the person” who chose to write to him. Helena then wondered whether this was “because [he] understood how other people functioned, that they really wanted or needed to have” the information, or whether he, for his part, had wanted that information from others.

Mikael: Yes. Well, I don't know if I would have, if it would have been necessary, but I feel that there are two major parts of my life so that, well, if they can't cope with this, then there's probably no point [laughs].

Johanna: Yes, though the risk is that the person who's reading it doesn't have the slightest idea what it means …

Mikael: Yes.

Johanna: … and therefore doesn't choose you.

Mikael: Yes, that's what I also think, but to some, there is in fact a certain risk.

Johanna: But it's always hard to know when. You've got to say it sometime, if you're going to meet each other and form a relationship. It's got to come out sometime. But the result might be that you don't meet the first time at all, if you write something like that.

Contesting Holders of Knowledge

The participants' emphasis of similarities within the group can be seen as expressing a desire for “autistic normalcy,” that is, what is normal for adults with Asperger's. Others emphasize an ideal of diversity and openness to difference within the group of adults with Asperger's. This more individualistic perspective stressed that all Aspergers are different. They may have the same diagnosis, but they have had different experiences and have different ways of being Aspergers. Kristina observed that “it's exciting to reflect on how we can be so different, with the same diagnosis,” and that “what's fun is that people in the group are so different.” The participants mentioned several differences within the Asperger group, based on how concerned the members were about following rules or going their own ways, whether they were taciturn or talkative, what their difficulties or degrees of impairment were, how old they were, and whether they were among the more “fact-oriented” or more “feeling-oriented” Aspergers. Although more feeling-oriented Aspergers may have difficulties with social interaction, Helena says, they can be good at reading feelings. Finally, the participants emphasized sex-based differences. Women with Asperger's were described as being people who “might go into relationships as a special interest,” as people with a greater desire to be normal (versus men with Asperger's), and as people who “want to have friends but don't know how, while the guys are more content doing their own thing” (Helena). The variation within the group of women with Asperger's was also considered greater than the variation within the group of men.

From the perspective of a counterhegemonic discourse of experienced-based knowledge, the emphasizing of differences within the group, or the diverse ways in which to be an Asperger, relates somewhat ambivalently to the participants' exclusion of people with no diagnosis of their own.

Two kinds of knowledge were emphasized in the training course that the participants were taking: the participants' own experience-based or lay knowledge and various types of medical or professional knowledge (see Brown, 1992; Brownlow & O'Dell, 2006). In the training course, these kinds of knowledge were made into ways of knowing that complemented each other. The researchers' knowledge or the research-based literature about diagnostic criteria was turned into something general—that is, Asperger's in theory. The participants' knowledge was turned into something particular, offering illustrative examples, that is, Asperger's in practice. For example, the participants read books about Asperger's written by researchers and regularly attended public lectures about Asperger's given by researchers. At the same time, the participants' own knowledge was emphasized, as were opportunities for the participants to disseminate knowledge of Asperger's on the basis of their own experience and that of others in the group. In connection with a group interview, I chose to take up these two ways of knowing as a theme for discussion.

In the group interview, participants expressed ambivalence about the relationship between the two ways of knowing or perhaps between the people who possessed them (see, e.g., Zavestoski et al., 2004). For example, a lecturer with access to both ways of knowing would be ideal. Erik emphasized that researchers and people without Asperger's but with professional knowledge could never “come from a bottom-up perspective” in contrast to “we who have been living with” Asperger's. Mikael also emphasized the ability of people with diagnoses to “know how we think,” unlike a researcher without a diagnosis, who could certainly ask questions but who would always have to proceed on the basis of information provided by others. Mikael further stated:

It happens so easily that people think it's the researchers who are supposed to disseminate knowledge. There's still a certain kind of mentality that “this is something for the experts to take care of.” But, I mean, who is actually the expert? Is it [Christopher] Gillberg who has kind of sat and looked it up in the books and who has kind of met a lot of people with Asperger's, or is it I who am in fact living with Asperger's and have been doing so all my life?

Various ideas were challenged in the discussion, regarding what it means to be an expert and who or what can define what expertise involves (see Lupton, 1997). Several participants distinguished between researchers without diagnoses who have a certain sort of knowledge, Aspergers who may have all sorts of knowledge, and various “social welfare secretaries”—or, as Mikael put it, those who “even if they aren't experts, are the ones to whom society has said, ‘You are the experts.’” On the one hand, some “social welfare secretaries” unself-critically positioned themselves as “the experts” without even knowing what Asperger's “is in the least” (Eva). On the other hand, other social welfare secretaries were more self-critical, openly stating that “much more knowledge of the group is needed” (Erik). Several participants criticized the absence of people with diagnoses from the various processes by which knowledge is defined, for example, in the formulation of research agendas and quality-assurance evaluations of activities for adults with autism. Erik emphasized the diversity of Aspergers, challenging the view that regards all adults with Asperger's as uniform in experience or that regards individual Aspergers as bearers of knowledge of all Aspergers.

The concept of diagnosis as negotiated knowledge was perhaps manifested most clearly with regard to the legitimacy and contents of the diagnosis. The diagnosis becomes part of a “reflexive project of the self” in the form of reflection, doubt, evaluation, and uncertainty (see Giddens, 1992; Lupton, 1997). Several participants expressed doubts about their diagnoses, asking who or what had the legitimacy (i.e., sufficient knowledge) to make a diagnosis (i.e., to define the problem; see Lupton, 1997). For example, Eva recounted how she first received her diagnosis from a “general psychiatrist” and not from the team of neuropsychiatric specialists available in the region where she lives. She described how she and the psychiatrist together reviewed the various diagnostic criteria, concluding that she probably had a mild form of Asperger's. Although she did receive a diagnosis, she would have preferred a more certain, more reliable assessment either from the neuropsychiatric team or from Christopher Gillberg's team of specialists in Göteborg. After reading Vad innebär funktionshindret? by Norrö and Åström (2004) during the training and working with the diagnosis and her own reflections, she felt that she had received corroboration and could now recognize herself in the criteria (see Madden & Sim, 2006).

Contesting the Diagnostic Criteria

Several participants described how they found certain aspects of the diagnosis or certain diagnostic criteria to be incorrect, indicating that lack of knowledge and incorrect understanding had informed the diagnosis. One instance of this was the descriptions of the various manifestations of the syndrome as strengths or weaknesses (i.e., Asperger's as deficiency). The research-based literature, lectures, or documentary films studied by the participants regarded Asperger's mainly as a deficiency, whereas the participants repeatedly emphasized that “Asperger's is good” (i.e., depicting Asperger's as a gift; see Bagatell, 2007; Davidson, 2010). They also spoke of the importance of emphasizing strengths and possibilities, to extend hope both to people who have received diagnoses and to parents of children with diagnoses. For example, Anna argued for a sharper focus in the training course on strengths and advantages and less on difficulties and problems (and on questions such as “Is it possible to get rid of this with practice?”). She observed that weaknesses should be named but that it was important, above all, to emphasize strengths, that is, characteristics that give Aspergers advantages relative to NT people, and weaknesses as situational. For example, what might be perceived as a weakness in one situation could be perceived as an expression of strength in another. Certain things, such as difficulties in social interaction and communication, could also be seen as manifestations of a “process of maturing that is just going a little more slow” (Anna). Certain difficulties, such as stress, problems with food, and depression, might be expressions of the fact that “you don't feel understood” (Anna). In cases of certain difficulties, such as “eye contact and uneven talent, it's a question of the people around you having to be educated, too, or just accepting that you have certain characteristics” (Anna). Anna also stressed, in line with the social model of disability (see, e.g., Oliver, 1990), the importance of an Asperger “having a good environment at the workplace.” The difficulties never disappeared completely, but in her view, they “have been paid too much attention.”

In line with the critical perspective on Asperger's as a deficiency, the participants stressed the diagnosis as an expression of a personality or identity rather than an expression of a disability. Most emphasized the diagnosis as something that “defines a little bit of your personality” (Maria) or “really a lot of [your] identity” (Johanna).

Johanna: I think it's interesting, this matter of identity. And it's something I've thought about … when they say, “You are not your disability”—sort of the standard phrase—when it's supposed to be nice in some way, politically correct to say. But I actually am my disability. If disability is what they say now. But I actually am my Asperger's, because it's here. For me, it's, I am my brain. I have a little difficulty knowing what the soul is and things like that, but I think the Asperger's is, it's in the brain, it is me, in other words, for me I am my Asperger's. So I am an Asperger, so to speak. It's the same thing with ADHD. It's incorrect to say that you are not your disability. If I had one leg too few, then that's a different thing. But just when it's the person herself, and I think the brain is. You can have your whole body like this and be the same person.

At the same time, there was an emphasis on the difference between “a certain image of Asperger's”—indicating, for example, that a person “must be really weird in some way” (Maria)—and having Asperger's “in my own way” (Maria). Maria stressed the false images of Asperger's as something that people “must try to erase with knowledge.” False images of Asperger's lead the NT people to whom the Asperger comes out, in an effort to “just be nice,” to stress the Asperger's neurotypicality by saying, “But you seem totally okay.” Asperger's was also understood in line with the social model of disability (see, e.g., Oliver, 1990), as something that “doesn't need to be disabling, but can be in some situations; and in others, it can conversely be a privilege” (Johanna).

Although this view of Asperger's as chiefly a personality trait that can sometimes be disabling but that is not in itself an expression of disability was dominant in the group, views challenging this view were also expressed. Helena, who criticized the idea that Asperger's was a personality type, instead stressed that the syndrome belonged to the autism spectrum; she emphasized the importance of recognizing one's difficulties as an Asperger as well as variation within the autism spectrum in terms of degree of both strengths and weakness.

Discussion

Within the group, the diagnosis was described in relation to narratives about an internal and external coming-out process (cf., e.g., Samuels, 2003) and in relation to various types of knowledge (cf., e.g., Brownlow & O'Dell, 2006). Receiving the diagnosis was described as the start of a coming-out process that begins internally; it constitutes an important milestone on the path to self-understanding and an expression of being the same as others and normal within a group of people with autism. The coming-out process culminates externally, when Aspergers declare their identity to people in their environment, representing an ideal of openness about the diagnosis. This ideal of openness also entails being a person who is generally open to and accepting of differences. Meanwhile, the ideal of openness stands out as something conditional: First, the ideal depends on having accurate knowledge of the diagnosis to counter erroneous ideas held by others; second, it is not self-evident when or to whom a person should come out.

The coming-out process is an ongoing negotiation between various representations of expected similarities within the group of individuals with Asperger's or of what is normal for people with Asperger's. This is evident in participants' narratives about their experiences of misrecognition (cf. Davidson & Henderson, 2010; Samuels, 2003). On the one hand, personal experience-based knowledge can be found, knowledge that is individual and particular and refers to the diagnosis in practice or living with Asperger's. On the other hand, various abstracted ideas about the diagnosis and what it entails are found both among certain people with Asperger's and among NT people. Such generalized knowledge refers to the diagnosis in theory. Regardless of whether these types of knowledge are perceived as facts about a disability, as stereotypical images, or as preconceived notions, they may be viewed as potential cultural resources with which people with Asperger's can identify and to which they can relate—to resist, question, or embrace.

The participants' narratives about misunderstanding and misrecognition also reflect an ideal of passing as NTs. Aspergers believe that by talking about their diagnoses, they can challenge society's misconceptions about what it means to have Asperger syndrome. By manifesting Asperger's in a way that may be considered “normal” within the Asperger group, the participants earn the right to assert their own experience-based knowledge in a general rather than a particular manner to confront knowledge from other sources that claims to be general.

The norm of openness within the group can be viewed as reflecting a more general ideal of openness in Sweden, according to which the members of subordinate groups are expected to come out and be open about their differences to gain access to various societal support services. At the same time, the ideal of openness is linked to the politics of identity in disability movements, especially as concerns disabilities that may not be overt (see, e.g., Bagatell, 2007; Davidson & Henderson, 2010; Samuels, 2003). Several researchers have pointed out parallels between people with invisible disabilities and the lesbian, gay, bisexual, and transgender (LGBT) community. One such parallel is the question of disclosure versus passing (see, e.g., Corbett, 1994; Sherry, 2004).

In line with participants' ambivalence about the ideal of openness, several researchers have demonstrated how the ideal of openness may have various ramifications. On the one hand, not coming out as a person with an invisible disability affords the individual the opportunity to benefit from those privileges that belong to people with no disability (cf., e.g., Cain, 2010). On the other hand, there is a price to be paid in that the individual cannot benefit from the recognition, support, and environmental adaptations made available by openness. Research into both sexuality and disability has demonstrated how the coming-out narrative may itself serve both normative and disciplining functions. A person who comes out as bisexual is expected to fit society's concept of what it means to be bisexual (see, e.g., Bertilsdotter Rosqvist, 2007). Likewise, a person who comes out in regard to a specific diagnosis or disability is expected to manifest certain behaviors or characteristics that society perceives as typical of the disability (see, e.g., Siebers, 2004) or diagnosis (Dumit, 2006). Merely receiving the diagnosis is thus insufficient in itself for gaining recognition from one's environment.

The ideal of openness can be associated with a struggle for the right to interpret knowledge—that is, what can be construed as true rather than false knowledge—and who is considered the bearer of the true knowledge. In the participants' narratives, the diagnosis is linked to knowledge production, which is discussed in relation both to the terms and conditions of knowledge production in itself and to the knowledge bearers. These narratives challenge misconceptions about who the bearers of knowledge are by arguing for a preferential right of interpretation for those with both experience-based and professional knowledge. This morphs into a sort of exclusionary practice in which people without any diagnosis are excluded from being bearers of knowledge about autism. At the same time, there is ambivalence as to the extent to which experience-based knowledge can be generalized. Based on an emphasis on similarities among people with Asperger's, the experience-based knowledge of the individual with Asperger's assumes the guise of more general, experience-based knowledge. Based on an emphasis on diversity within the group of people with Asperger's, the experience-based knowledge becomes an essential complement to professional knowledge. The ideal of combining experience-based and professional knowledge may be viewed as a precondition for producing a counterhegemonic discourse of knowledge in which the participants differentiate between true and false knowledge (or ignorance), and legitimate versus illegitimate claims to being bearers of knowledge.

The participants negotiate with the diagnostic criteria based on their experience-based knowledge. From an experience-based perspective, their opinions can be viewed as expressions of either ignorance or false knowledge. The diagnostic criteria were criticized primarily for their emphasis on difficulties rather than strengths and for seeing difficulties as static rather than situational or variable over time. At the same time, the experience-based perspective remains. It emphasizes viewing Asperger's as part of the autism spectrum group and recognizing the difficulties people with Asperger's have, as well as variation within the spectrum in terms of both strengths and weaknesses.

In sexuality research, the ideal of openness has been problematized because it contributes to a misconception concerning essential identities and to an exclusionary practice that excludes and assigns pathologic value to people who cannot or will not come out (see, e.g., Bertilsdotter Rosqvist, 2007, 2009). The present findings may be interpreted as capturing similar ongoing process of identity politics among people involved with the autistic self-advocacy movement. The ambivalent ideal of openness, like the challenge to the professional's preferential right of interpretation in knowledge production, may be viewed as part of reformulating the essential implications of Asperger's, shifting the emphasis from difficulties and discretion to strengths and openness. This may exclude from the group of activists the people with autism who do not espouse openness as an ideal or who do not behave according to what is perceived as “normal for people with Asperger syndrome.” Reformulating the meaning of Asperger's may be understood as a process entailing the internal autistic political production of a counterhegemonic discourse of autistic normalcy: What is expected from a person with Asperger's, according to participants in the autistic movement, and who owns the knowledge (or right of interpretation) of autism?

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Author notes

Editor-in-Charge: Steven J. Taylor

Authors:

Hanna Bertilsdotter Rosqvist (e-mail: Hanna.Bertilsdotter@soc.umu.se), Department of Sociology and Umeå Centre for Gender Studies, Umeå University, Umeå, 90187, Sweden.