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Keywords:

  • autism;
  • stigma;
  • Foucault;
  • identity

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Conceptual fields
  5. Sample and methods
  6. Subjectivity, stigma and resistance
  7. Conclusion
  8. Acknowledgements
  9. References

This paper analyses 12 parent interviews to investigate the stigmatisation of parents of children diagnosed with an autism spectrum disorder. Drawing on poststructural accounts of the relationship between knowledge and subjectivity, the stigma concept is critically interrogated in order to address previous individualistic constructions of stigmatisation and to place stigma within the power dynamics of social control. The results of the study indicate that a child’s diagnosis with an autism spectrum disorder (ASD) is critical for parents to resist stigmatisation. Parents experienced considerable enacted stigma, but successfully resisted felt stigma by deploying medical knowledge to articulate unspoiled subject positions. The institutionalisation of medical knowledge within the autism community was critical to this process. Resistance to enacted stigma was successful to the degree that medical constructions of deviance deployed by parents were accepted by others, notably those in power within institutions. It is concluded that poststructural accounts of subjectivity and social control provide a useful way of conceptualising stigmatisation. An acceptance of the painful nature of stigma as lived experience co-exists with an emphasis on the constantly negotiated nature of embodied subjectivity as a contingent social process to illustrate the conditions for active resistance to stigmatisation.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Conceptual fields
  5. Sample and methods
  6. Subjectivity, stigma and resistance
  7. Conclusion
  8. Acknowledgements
  9. References

The autism spectrum describes a range of developmental disorders most commonly diagnosed in early childhood which influence the social and cognitive abilities of those diagnosed. Children who, after diagnosis, are constructed as occupying a position ‘on the spectrum,’ regularly breach social norms in face-to-face interaction, often have language difficulties, and may display antisocial behaviours in the form of withdrawal, aggression, or self-stimulation, sometimes as a reaction to stress or changes in routine. For parents, these behaviours can lead to humiliation, social exclusion and isolation (Gray 1993, 2002). The influence that this has on parents’ construction of biographical identity and negotiation of the social world have been described using the concept of courtesy stigma (Goffman 1964) to argue that parents of children diagnosed with an autism spectrum disorder (ASD) must manage a ‘spoiled’ social identity due to the stigmatising nature of their child’s diagnosis (Gray 1993, 2002).

Whilst Goffman’s paradigm has remained the dominant theoretical foundation for examinations of stigmatisation in the sociology of health and illness, criticisms of the perspective have argued that a failure to consider structural power relationships, and a tendency to position the stigmatised as powerless victims, have led to empirical conclusions which are limited in analytical scope and apolitical. A focus on management rather than resistance, and a purely micro-social focus divorced from any wider structural context have led some authors to argue that the stigma concept should be abandoned (Oliver 1990), or reconstructed in the light of developments in social theory since Goffman’s writing (Scambler 2004). The purpose of this paper is to evaluate and reconstruct the stigma concept, and therefore to better understand the stigmatisation of parents of children diagnosed with autism spectrum disorder (ASD).

Conceptual fields

  1. Top of page
  2. Abstract
  3. Introduction
  4. Conceptual fields
  5. Sample and methods
  6. Subjectivity, stigma and resistance
  7. Conclusion
  8. Acknowledgements
  9. References

Medical knowledge of ASD

The concept of the autism spectrum was introduced by Wing (1988, 1991) to describe a continuum of disorders varying in symptoms, severity and prognosis. Individuals now constructed as ‘on the spectrum’ are most commonly diagnosed with either Autism, Asperger’s Syndrome, or Pervasive Developmental Disorder – Not Otherwise Specified. In establishing the autism spectrum as a widely used construct amongst practitioners, parents, and those diagnosed with ASD, Wing (1991) drew together a number of previously disparate conditions, the most well known and common of which is Autism. First identified as a childhood syndrome characterised by ‘autistic aloneness,’ obsession with routine, and profound problems with communication by Kanner (1943), the concept of autism now forms the ‘lower functioning’ part of the autism spectrum. Asperger’s Syndrome, first introduced by Asperger (1944/1991) and brought into contemporary discourse by Wing (1981), differs from ‘classic’ autism in that those diagnosed with Asperger’s do not evidence intellectual deficiency or language delay. The nature of the autism spectrum is still in dispute: in arguing for the validity of the continuum construct, Wing (1991) acknowledges that the difference between classic autism and Asperger’s is ambiguous, whilst some researchers argue that Asperger’s does not exist as a discrete condition (Mayes, Calhoun and Crites 2001).

As would be expected, changing explanations for the aetiology of ASD reflect broader trends in the currency of different bodies of knowledge in psychiatry and medicine. Kanner (1943) initially viewed autism as the result of an interaction between hereditary predispositions and parenting (specifically mothering) styles, and psychoanalytic discourses in the 1960s constructed autism as exclusively the result of ‘cold’ mothering. Through the popularisation of psychoanalytic thought, this ‘refrigerator mother’ thesis enjoyed significant attention from the wider community, beginning to fade only with the rise of the cognitive paradigm in the 1970s. The increasing importance of cognitive and then biogenetic science eventually removed the association between autism and parenting, and in the process constructed a new kind of autistic subject position (Nadesan 2005).

Cognitive and biogenetic paradigms now form the basis for most research into ASD. The aetiology of ASD is assumed to be biogenetic, and whilst an increasingly sizeable body of literature continues to investigate the biological and genetic basis for ASD, a specific biogenetic cause has not been established (Rutter 2005).

The cognitive paradigm views ASD as a particular kind of information processing deficit related to brain structure. In a wide ranging analysis of the social construction of ASD, Nadesan (2005: 126) argues that the view that ASD is an information processing deficit constructs those diagnosed with ASD as embodying a particular kind of ‘autistic’ intelligence, the nature of which is defined through a reification of both ‘normal’ rationality and a dehumanised ‘autistic’ subjectivity, whilst the biogenetic paradigm rests on an uncritical reduction of mind to biology (2005: 174). Thus, while these paradigms remove the pejorative associations of the ‘refrigerator mother’ thesis, these discourses construct a distinct, ontologically different, autistic subject position.

Medical knowledge and parents of disabled children

Gray (1993, 2002) shows that parents of children diagnosed with ASD experience considerable stigmatisation due to the socially inappropriate behaviour of their children. Regular breaches of social norms in social situations can lead to feelings of shame and humiliation, as well as exclusion from normal social activities. Gray argues that the normal physical appearance of those diagnosed with ASD makes these behaviours more stigmatising for parents (2003: 742-3). Thus, whilst the ‘refrigerator mother’ thesis has passed out of professional and lay discourse around ASD, the complex and challenging nature of the behaviours associated with ASD, the normal physical appearance of diagnosed children, and the construction of the autistic subject position as ontologically other, places parents of children diagnosed with ASD in a difficult and ambiguous position regarding their views of their children, and, by association, their families and themselves. Resistance to the potential stigmatisation which Gray’s work identifies as being associated with parenting a child diagnosed with ASD requires a negotiation and interpretation of the discourses constructing the intelligible subject positions that diagnosed children are said to embody. Parents must ‘come to locate, interpret, and often to advocate for the personhood of one they would previously have known only as ‘the other’’ (Landsman 2003: 1948).

Whilst medical constructions of disabilities and disorders such as ASD construct the disabled subject position in ways that are pessimistic, individualistic, and focused on deficit and inferiority, literature which investigates the negotiation of competing discourses of disability and personhood shows considerable agentic resistance and negotiation of these discourses on the part of parents of disabled children, as well as those diagnosed with ASD themselves (Chamak 2008). Parents deploy discourses drawn from medicine and the lifeworld in order to understand their children and negotiate an identity for themselves and their children which, whilst not ‘normal,’ is valuable and not necessarily inferior (Landsman 2005). Fisher and Goodley (2007) show that in interpreting ‘the other’ (in the sense of Landsman 2003, quoted above) parents creatively appropriate medical knowledge, as well as directly challenge conceptions of normality to resist the pessimistic teleology of the medical narrative. Raspberry and Skinner (2007) argue that biogenetic discourses become the new frame within which the ‘normality’ of a different but still valuable child is constructed. Parents assert the uniqueness and individuality of their child (Whitmarsh et al. 2007) and may use the ambiguity of medical constructions in order to achieve this (Whitmarsh et al. 2007). Thus, whilst parents in the position of parenting a child constructed as ‘other’ are aware that their family is not ‘normal’ (Rehm and Bradley 2005), they nevertheless achieve a different kind of ‘normality’ through the practice of what comes to be conceived as family life (Kelly 2005, Rehm and Bradley 2005, Clarke-Steffen 1997). For parents of children diagnosed with ASD, this process is made more difficult by the disruptive behaviour that their children often engaged in and of their normal physical appearance (Gray 1997). Nevertheless, Gray (1997) shows that the negotiation of different ways of knowing disability and the disabled subject are central to the process of parenting children diagnosed with ASD.

Stigma?

In the light of the above discussion, the stigma concept conventionally deployed to analyse the experience of shame and social exclusion on the part of parents of children diagnosed with ASD (Gray 1993, 2002) as well as parents of children with other disabilities (Birenbaum 1970, Voysey 1972) is an inadequate heuristic. As articulated by Goffman (1964), courtesy stigma describes a ‘spoiled’ social identity due to interpersonal ties with a stigmatised individual. Scambler and Hopkins (1986) identify a distinction between felt and enacted stigma, the former describing feelings of worthlessness and inferiority, and the latter describing overt acts of social exclusion. Whilst this paradigm has been usefully deployed to analyse the social life of parents of children diagnosed with ASD (Gray 1993, 2002), Goffman’s focus on the management of (rather than resistance to) stigmatising marks (rather than socially constructed disablement as in Oliver, 1990) has led to criticisms that the stigma concept thus articulated is apolitical and divorced from the social processes with construct difference. Goffman’s micro-social focus sheds no light on the origin of socially devalued stereotypes, or the conditions which allow legitimate and successful resistance strategies. The construction of identities to resist stigmatisation is an inherently political process which cannot be fully interrogated through a focus on the decontextualised face-to-face encounter.

In addressing these issues, this paper reconstructs the meaning of stigma in an effort to move beyond the largely descriptive, micro-social emphasis of previous stigma concepts and to establish stigma as a concept with increased power and analytical value. Rather than a focus on the management of discrediting marks, this paper is based on the premise that stigmatisation concerns identity construction in the context of social control. Stigmatisation is conceptualised as a socio-cultural process which operates to reproduce structural power relationships and exclude stigmatised individuals from the social world (Parker and Aggleton 2003). If, as Parker and Aggleton argue, ‘stigma and stigmatisation function, quite literally, at the point of intersection between culture, power and difference’ (2003: 17, emphasis in original) then analysis of stigma and resistance must become an examination of subjectivity and negotiation of the power relationships structuring the social world. Addressing these issues may result in a stigma concept which can remain a powerful heuristic in researching the social lives of parents of disabled children.

Foucault (1977, 1988) and Butler (1990, 1993) provide an account of the social construction of subjectivity that, when used to inform stigma research, effectively illustrates the structural aspects of stigmatisation. Foucault (1977) describes a mutually constituting relationship between power and knowledge, arguing that power produces and is constituted through discourse, operating through the construction of embodied subjectivity. Social control is actualised within institutions governed by knowledge in the hands of experts (Foucault 1977), and through bio-power: political/discursive strategies which constitute the subject as knowable and create the conditions for subjectivity (Foucault 1990) as well as the technologies through which subjectivity is actualised, experienced, and performed (Foucault 1988). Subjectivity is temporal and ‘citational’ (Butler 1993); subjectivity is an iterative, performative citation of discourse. In producing the norm, discourse produces that which is abnormal, constructing that which it excludes, thereby producing the ‘spoiled’ subject position as the binary opposite to the unspoiled. Agency is located in the space created by the temporal nature of performative subjectivity between discourse and its citation in the subject (Butler 1993, 1995). Resistance to stigma is performative and discursive, enabled as it is produced by power/knowledge.

Within this framework, I define felt stigma as the experience and articulation of a subject position discursively constructed as ontologically inferior (in Goffman’s terms, ‘spoiled’). I define enacted stigma as an overt political/discursive act of power for the purposes of social control which attempts to position the stigmatised as spoiled. Resistance to stigmatisation must therefore involve the negotiation of structural/discursive contexts to articulate unspoiled subject positions and negotiate an unspoiled social identity in face-to-face interaction.

Drawing on the conceptual field thus articulated, this paper examines the social life of parents of children diagnosed with ASD. Through analysis of parents’ accounts of their sense of self, and their face-to-face experiences in different social contexts, the aim is to analyse the consequences that parenting a child constructed as ontologically other has for parents of children diagnosed with ASD and the influence that the changing and sometimes ambiguous nature of medical knowledge of ASD has on this process. The utility of the stigma concept thus articulated can thereby be evaluated.

Sample and methods

  1. Top of page
  2. Abstract
  3. Introduction
  4. Conceptual fields
  5. Sample and methods
  6. Subjectivity, stigma and resistance
  7. Conclusion
  8. Acknowledgements
  9. References

Participants were contacted through an Australian support group for parents of children diagnosed with ASD. The sample consisted of 16 participants, 11 mothers and five fathers, with a total of 12 semi-structured interviews ranging from one to three hours in length. Four interviews were conducted with both the mother and father of the child present, and one interview with the father alone. All others were with the mother only. All participants were from an Anglo-Saxon background and the majority could be described as middle class with the exception of one working class father. Participants were parents of children ranging in age from five to 23 years old.

Most interviews took place at the participants’ home, with the exception of one interview at a café and one at the participant’s place of work. Questions asked aimed to cover all aspects of the influence having a child with ASD had on the lives of participants. Themes discussed included parenting, changes to social lives, changes to daily activities, and encounters with institutions. Some themes, such as constructions of identity, normality and the character of family life, were brought up spontaneously by all participants.

Interviews were recorded and fully transcribed. Since part of the eventual analysis concerned the discursive construction of subjectivity, discourse analysis (Burman and Parker 1993) was used to analyse participants’ accounts of their sense of self. Discourse analysis ‘offers a social account of subjectivity by attending to the linguistic resources by which the socio-political realm is produced and reproduced’ (Burman and Parker 1993: 3). Discourse is viewed as a social practice in the context of social relations of which some are material, some institutional, some micro-social, and all related to power. Discursive practice acts to reproduce and constitute these social relations, as well as the subjectivities of the speaking subjects. Analysis proceeded by coding interview fragments according to qualitative data coding techniques (Neuman 2006) to identify the subject positions which participants articulated, the discourses constituting these subject positions, and the ways in which discourses were deployed in order for the participants to speak their selfhood.

Following Silverman (1987), accounts of face-to-face encounters were informed by both interactionism and discourse analysis. The deployment of social identities was taken as a political, discursive strategy designed to exercise agency within the structural context of the interaction (Silverman 1987).

Concerns of validity and reliability were addressed through the use of the constant comparative method, and deviant case analysis (Silverman 2001). Hypotheses on social processes were drawn from the actual data, with constant reference back to the data as analysis progressed. Categories emerging from the data evolved as analysis progressed towards the final themes. The use of deviant case analysis, as well as comprehensive data treatment, resulted in an analysis that could account for all of the data without exception.

Subjectivity, stigma and resistance

  1. Top of page
  2. Abstract
  3. Introduction
  4. Conceptual fields
  5. Sample and methods
  6. Subjectivity, stigma and resistance
  7. Conclusion
  8. Acknowledgements
  9. References

The results of the study will be presented as a narrative covering pre-diagnosis issues, reconstruction of subjectivity and family life, and the influence of setting on the negotiation of face-to-face interaction.

Discursive reconstructions of subjectivity following diagnosis

The meaning of diagnosis

Participants described their child’s diagnosis as a positive event, since it provided an explanation for the difficulties participants were having in parenting their diagnosed children. Before diagnosis, parents experienced feelings of failure and rejection by their children, often blaming the problems they were having on their own parenting. This was especially true for parents whose children had not been diagnosed as toddlers, and who therefore had had many years of trying to parent unexplainably difficult children. Parents (especially mothers) were frequently referred to parenting classes when seeking advice about how to deal with their children. All parents reported knowing that ‘something was wrong’ before actual diagnosis, and reported a certain degree of felt stigma until diagnosis provided them with another explanation:

Researcher: When you had the diagnosis did it actually change anything for you, having the actual diagnosis?

Participant: It made me feel better, a lot better about my parenting…I had all the parenting training, all the community organisations, there’s lots of parenting courses and…I attended…several parenting courses all…And it didn’t seem to be getting the results that other people say they’ve either got or the courses led you to believe you would expect to get. So I wasn’t getting those. [From the mother of a teenager with Aspergers.]

The support group that this sample was drawn from emphasises a biogenetic aetiology for ASD, assuming an innate, biological foundation for the behaviour of children diagnosed as ‘on the spectrum’. This removes guilt or shame about parenting, and diagnosis is an especially important event since the normal physical appearance of children diagnosed with ASD can make interpreting their disruptive behaviours difficult and ambiguous for parents. The pre-diagnosis subjectivity of parents of children in the study can be described as spoiled. They considered themselves, and were seen by others, as bad parents with naughty children. Following diagnosis, they are able to reinterpret and medicalise the meaning of their children’s socially inappropriate and difficult behaviour, allowing the articulation of an unspoiled subject position through the creative, agentic use of medical discourse which will be described below (cf.Kelly 2005, Rehm and Bradley 2005 for similar processes in the context of other disabilities).

Changes in family life

Gray (1997) illustrates the challenges that the socially inappropriate behaviour and strong preference for routine associated with ASD creates for the performance of what is conventionally viewed as a normal family life. Participants in the present study described the influence a child with ASD has on family life in terms of their houses and family routines becoming structured around the needs of the diagnosed child, with some participants even referring to theirs as ‘autism households’. As a result of the needs of children, the activities of an autism household are directed by strict routines governing all aspects of life, variations on which can have disastrous consequences:

Researcher: So what’s it like, I mean, has it influenced his sibling’s social lives a lot?

Participant: Absolutely. Massively. I try to avoid it but basically the house is structured around the needs of someone with autism…anything that we plan to do I think about the effect it’s going to have on him and the effect he’s going to have on it and whether it’s worth it or not and whether there’s another way, whether he can go somewhere else for a few hours. You do, you try and negotiate it because you don’t want the others missing out. Um, I don’t stop and get an ice cream after school. I tried that once and the change in routine was such a horrible experience that I wouldn’t do it again.

Researcher: Horrible how?

Participant: Um because that was when he was younger and he doesn’t cope well with changes in routines. So it led to six hours of tantrums or something like that. [From the mother of a child with Aspergers.]

The vital importance of routine and familiarity to a child diagnosed with ASD contributes to the separation of autism households from the rest of the community. In a discussion of changes to social life and friendship circles, the following participant claimed that other autism households were more ‘comfortable’ to visit, because the house had been made ‘autism proof’ with locks on doors and cupboards and a minimum of breakable ornaments displayed. Furthermore, norms concerning the requirement to interact are looser in autism households:

Participant: Long time friends that we’ve known from when we first lived in Sydney and have kept in contact with. They’ve got a bit of a medical background so they’ve got that awareness, even though they don’t have the knowledge they’ve got that acceptance…So yeah, they’re not ignorant to things. Associating with autism families is just so much more comfortable because nothing fazes them…

Parents who did not describe their households in this way included those who had children with relatively mild positions ‘on the spectrum’, who did not require the routine or tolerance from others for disruptive behaviour that other children diagnosed with ASD did. The process of structuring family life around the needs of the diagnosed child (becoming a more ‘autistic household’), while necessary for the family to be able to function given the ‘whirlpool at the centre of the family’, also sets parents of children diagnosed with ASD apart from the rest of society. This change in family life is a restructuring of social routines with the needs of the diagnosed child in mind, as well as a reconstruction of family norms according to discourses of parenting, family life, and ‘normality’ very different from those prevailing in the wider community. As the next section will illustrate, these discourses are institutionalised in, and drawn from, medicine, psychology, and autism support groups.

Enacted stigma and the strategic reconstruction of normality

Enacted stigma

All parents reported changes to their social circle due to direct enacted stigma on the part of previous friends, many suggesting that they lost around half of their friends in this way:

Participant: Like uh we discovered really who your friends and that are. Because their social skills and that aren’t up to speed. So you go to their place and you know it’ll be a case rather than where you can tell the child well look you can’t touch anything, you can’t tell them that, they do. So a lot of people will be ‘oh yes you can come around but can you not bring the boys they’re a bit loud’ or this and that. Well our motto is it’s one in all in so.

Researcher: So does that mean that um your circle of friends changed?

Participant: Yep. Considerably.

And later:

Researcher: Right okay. So you said you found out who your friends really were. Does that mean you stopped hanging out with some people?

Participant: Nah they stopped hanging out with us. All of a sudden you know it was ‘come around to our place but don’t bring the kids’ or um they’d come around and they’d just be sitting here rolling their eyes all the time because like Daniel and Alex you know will interrupt and everything and they just didn’t have patience for it. [From the father of two children with ‘classic’ autism.]

Enacted stigma was reported by all participants whose children’s behaviour was regularly socially inappropriate. Parents attributed enacted stigma to a rejection of the medical construction of their children’s behaviour deployed by parents in favour of an explanation which focused on parenting:

Researcher: So who did you, when it dawned on you that there was something different about him who did you tell? Do all of your friends and family know?

Participant: All of my friends know. I lost a lot of friends because they were very unsupportive of my efforts to deal with his behaviour and they didn’t necessarily see my explanation of his behaviour as being accurate. I’ve got new friends and I’m very up front with people because it’s a huge part of my life. They need to know that and I’m not going to waste any of my time with them if they’re not.

Researcher: How do you mean people were unsupportive?

Participant: ‘You’re being a bad mother. He’s behaving like that because you don’t discipline him. If you did it this way you wouldn’t have problems.’ That kind of stuff…you know, it doesn’t help.

This example illustrates the importance of the autistic label. As Gray (1993) points out, the socially inappropriate behaviour and otherwise normal appearance of children diagnosed with ASD can make the disorder especially stigmatising for parents despite the prevalence of biogenetic explanations for the disorder in professional discourse. The normal physical appearance of diagnosed children means that parents must intentionally deploy a medical construction of their child’s socially inappropriate behaviour in order to avoid being stigmatised. If the medical explanation for their child’s behaviour is not accepted by others they are treated as bad parents, a stigmatised subject position.

Strategic reconstructions of normality

Participants in the present study joined the support group from which the sample was drawn in response to a need for advice and support, as well as enacted stigma. Through the support group, participants come into contact with other parents of children diagnosed with ASD, as well as professionals such as psychologists and pediatricians.

In describing their ties with these institutions, and articulating their constructions of themselves and their children, participants position themselves in what some described as the ‘world of autism’: the interpersonal ties which the support group leads to provide emotional support to parents, creating a space in which parents come into contact with autistic discourses, drawn from medicine and psychology, that construct them as unspoiled subjects. Chamak (2008) shows that support groups can become politically active in promoting biogenetic explanations of ASD in contexts where explanations for ASD continue to stigmatise parents. Similar to the process reported by Gubrium and Holstein (1993), this Australian support group institutionalises discursive constructions of family life that give new meaning to participants’ families. In positioning themselves in a ‘world of autism’, parents make an effort to research the nature of ASD in an effort to know as much about the disorder as possible. This knowledge provides them with the power to resist stigmatisation, since as will be shown, parents cite medical discourses in articulating unspoiled subject positions.

It is not the contention of this paper that the autistic label has no pejorative implications for children or parents. The diagnosis is emancipatory in the sense that it constructs parents as unspoiled, although not ‘normal’. Aware of the pejorative implications which a diagnosis has for their children, parents’ notions of normality are reconstructed in such a way as to cite medical discourses whilst avoiding the negative implications this has for their child’s social identity.

Whilst this process of strategic reconstruction was negotiated differently by all participants, some common strategies can be identified. Parents were at pains to construct the social and cognitive difficulties of their children medically. Nevertheless, this was not a straightforward process. Parents recognised that there were certain pejorative implications of the autistic label. Therefore, resistance to stigma placed them in an ambiguous position with regard to medical constructions of themselves and their children. Parents did not merely accept straightforward medical definitions of their children. Rather, in a process similar to that described by Kelly (2005) and Rehm and Bradley (2005) parents constructed their children medically when accounting for their behavioural problems, but asserted their individuality and intrinsic human worth at other times, rejecting pejorative implications of the autistic label in favour of other constructions drawn from the lifeworld. A clear example of this is that of the following couple, parents of a young child with classic autism who regularly exhibited some socially inappropriate behaviour and had almost no language, as well as having one other disorder mildly influencing his physical development.

Early in a discussion about their perception of community attitudes towards ASD, this mother and father describe the way they presented their child to the rest of his school upon enrolment:

Mother: We ended up writing a letter from Terry just about who he was. And first and foremost he was a child and not you know

Father:  An autism.

Mother: Not autism. And just explained a few of the little things and the little quirks that he has and maybe if you get to know him you know, keep trying to interact because one day he’ll turn around and play. Most mums now give me the kind smile and ‘okay, stay right away from you’. And there’s about three that’ve actually gone ‘oh tell me more about him…’

Concerned about the environment their child was to enter, these parents wrote a letter outlining that their child had ASD, but also emphasising his individual characteristics. However, soon afterwards they go on to construct their child in purely medical terms when talking about problems he has had:

Mother: And I guess…with that genetic situation there is, we know it’s called a marker chromosome and it’s on chromosome 15. And what’s actually happened is that it’s an extra bit and that extra bit has actually broken off. And because they have no other cases to compare him to then there is no label as such. So he doesn’t have, he didn’t have that for so long and this was like we have to wait and see.

Despite this purely biological discourse, these parents assert the individuality and uniqueness of their child. Then, in further describing the way they explain their child to visitors, they reject the autistic label, preferring instead to describe their child as a ‘special needs child’. They considered this a more ambiguous construct, a kinder, less pejorative label that encouraged visitors to be more forgiving of social transgressions, whilst avoiding the negative implications they felt were associated with the specific label of autism:

Researcher: So why a special needs child rather than autistic? Do you think there are negative attitudes towards autistic people in the community?

Father:    Yes absolutely.

And later:

Mother:   I think that the terminology of special needs child is far more acceptable than whether it be autism or whether it be cerebral palsy or you know anything like that. As soon as you say ‘he’s a special needs child’ people are just more accepting.

Avoiding the specific implications of ASD, ‘special needs child’ is a more flexible construct for parents to deploy when presenting their family to others.

Many parents used the nature of ASD as a ‘spectrum’ to affirm the individuality of their child. Generally, the ‘place on the spectrum’ that parents constructed their children as occupying was one that explained the child’s inappropriate behaviours without placing limits on what their children could achieve in their lives, and emphasised their child’s individuality. The concept of the autism spectrum allows parents to deploy legitimate medical discourses to affirm the individuality of children. Contact with the world of autism, and especially the support group, was vital to this process:

Participant: What I’ve done by going to all those workshops and reading about the disabilities and, and normal managing, some of the courses were called ‘managing normal behaviours’ which means that temper tantrums um you know pooing their pants, they’re all normal behaviours. And some children manage to get over it by the time they’re five and some take until they’re 11 but they are normal behaviours and some are emotional responses and it’s just observing. Sometimes just making mental notes of when these things happen and what happened, what did they eat that day, what did they eat the day before, what things happened that might have caused this, if you want to look for a physical reaction the pooing, what’s happened that this has sort of happened. So it is very trial and error, you have to deal with your own situation and knowing that they’re all normal behaviours.

Researcher: So it helps to know what’s normal in the context of ASD in terms of…

Participant: Um yes. Yes. It does help to know. It helps to know um what is normal, how to look in within yourself. [From a mother discussing her experience with workshops run by support groups.]

In the present context it is clear that for parents, the medical definition of ASD is ambiguous, allowing considerable creative space for parents to articulate unspoiled selves (cf.Whitmarsh et al. 2007). The medical label is deployed in creative ways when constructing the social identity of their child and their family, this reconstruction reflecting parents’ own subjectivity. Their subject position, and the social identity they deploy in face-to-face interaction, is not ‘autistic by association’ in the way one would expect, following the description of courtesy stigma provided by Goffman (1964). Rather, stigmatisation is resisted through a complex discursive process designed to result in an unspoiled subject position for themselves and a manageable, unstigmatised identity for their children:

Participant: Their okay and our okay are two very different things. And Terry’s okay is a different thing again. Yes he will be okay, but he will never be like any other child in the world. He’s on the spectrum and so therefore he’s different even to other children on the spectrum. Um but he will be okay. That’s normal. But he mightn’t be their okay. He’ll be his okay and our okay. But he mightn’t necessarily be their okay. [When describing family attitudes towards his child’s development.]

Reports of felt stigma were very rare, and all parents who reported any felt stigma asserted a recognition that it was unjustified, and claimed that they rarely had such feelings. By positioning themselves through the ‘world of autism’ construct and the discourses on parenting, social behaviour and normality institutionalised within the support group and professional discourse, parents are able to articulate an unspoiled subjectivity through a reconstruction of ideas of difference and normality. Parents cite medical discourse to articulate unspoiled subject positions, and continue to do so in response to enacted stigma. Support groups are a vital space for this reconstruction of normality to take place. As has been suggested above, however, processes of stigmatisation are influenced by the extent to which medical constructions of their children are accepted by others, a process which is well illustrated by parents’ accounts of their experiences in public places and schools.

The influence of setting: public situations and institutions

As this paper has argued, the nature of ASD means that resistance to stigmatisation is contingent upon parents’ capacity to deploy medical discourses constructing their children as sick and themselves as unspoiled. In face-to-face interaction, the result of these efforts is mediated by the setting in which interactions take place. Settings which limited the capacity to deploy unspoiling discourses resulted in enacted stigma.

Public situations

The nature of face-to-face interaction in public makes deploying medical constructions of their child’s behaviour difficult for parents. As this paper has argued, without a medical definition of their children, parents are once again positioned as ‘bad parents with naughty children’. Therefore, most parents reported significant enacted stigma in public situations. Many parents restricted their daily activities to avoid public situations with their children, which whilst avoiding enacted stigma, contributes to the position of autism families as separate from the wider community.

Similar to Gray (1993), enacted stigma in public consisted of ‘looks’ or ‘glares’, as well as unsought-for advice about parenting, the most common of which was the advice that they should smack their children. The importance of medical discourses in resisting stigma is illustrated by the fact that the support group through which participants were recruited produces and distributes cards for use in public situations. The purpose of these cards is explicitly to avoid stigma by deploying medical constructions of children. On the front are the words ‘Please don’t let my child’s behaviour concern or upset you…’ and inside is printed ‘My child has Autism Spectrum Disorder…’ followed by a description of ASD as ‘a neurological disorder that causes problems with communication, behaviour and learning’. Some parents reported the occasional desire to put a shirt or a sign on their child that said ‘I have autism’, in order to make public situations less stigmatising.

Enacted stigma in public was commonly reported as being caused by the difficulty participants had in presenting their children, who look normal but behave inappropriately, as ‘on the spectrum’ to the general public. Passing is impossible due to the nature of their child’s behaviour, and their status as ‘bad parents’ gives them very little power to define social situations. Their only legitimate strategy, deploying the medical label, is made problematic by the anonymity of face-to-face encounters in public. However, parents’ self perceptions were generally unchanged by public reactions to their children. While many reported embarrassment resulting from public enacted stigma, they still constructed their children medically: felt stigma is fleeting and extremely rare.

Institutions

The process of stigmatisation as it occurs in institutional settings is an effective illustration of the way structural power influences stigma and social identity. Institutions, most notably schools, are settings in which parents are obliged to engage in strategic measures in order to have their children defined as ill, and hence to avoid stigma. Whether or not an encounter within an institution was stigmatising depended on the extent to which these discursive strategies were resisted by those in power.

The situation most commonly reported as stigmatising was that in which schools responded to behavioural problems in ways that were contrary to the advice of professionals in the world of autism, due to their refusal to fully accept the medicalisation of the child’s behaviour. Parents attributed the resulting lack of success in managing the behaviour to the inappropriate nature of the strategies used, and reported stigmatisation from school authorities, who blamed parents for this lack of success:

Participant: The deputy principal was…hideous. She’d call me up, and she would call me to the school and have me in the office with Andrew sitting there and being a sook or whatever, grumping, pulling things off the wall and she’d be going ‘Now…this just isn’t good enough, he’s done this and this and we’re going to have to punish him’ with her best school mum voice on. And I would feel this small, going ‘but, but’ and I felt like I was constantly making excuses for him, and she’d say ‘well we know he’s got a diagnosis but, can’t you just talk to him…’ I mean yes I can talk to him until I’m blue in the face but it’s not going to help. They just had no concept whatsoever of what they were dealing with.

And later:

Participant: …Seriously I’d go in there to pick him up from school and I’d come away feeling like I was on detention. Because she would just belittle everything he did and make it sound like I should have been able to talk him out of it or something. But she had absolutely no idea whatsoever.

The experience of two other participants, a mother and father, also illustrates this process. While their son was in an autism unit, they were dissatisfied with the quality of education he was receiving. The executive teacher at the school was experienced in education for disabled children, but these participants felt that her failure to understand or accept the implications of autism led to their parenting being questioned nevertheless:

Participant 1: …one of them in particular her favourite comment is ‘we’ve got to lift the autism off the boy’.

Participant 2: And she is an executive teacher supposedly with long experience with children with disabilities.

And later:

Participant 1: I mean this particular person that we’re both thinking of has mentioned probably over the last 12 months ‘oh you need to let us know if there’s anything happening at home or if there’s any stresses from home that he’s bringing to school’ as if to say well it’s only happening at school because it’s happening at home. And we keep saying ‘well it’s not happening at home’. Yes he’s showing signs of stress like this sort of anger talk [their son is screaming in the background] um and those are happening but I said that sort of stuff is more a result of what’s happening at school rather than the other way around. But I think because she can see without admitting that there is issues at school, doesn’t want to acknowledge them because then that puts them in the wrong and they have to fix it. No she’d much prefer to put the blame on to us.

The language used by the executive teacher above (‘lift the autism off the boy’) suggests that this teacher accepted that this child had a diagnosis, but considered it somehow ontologically peculiar to the child, refusing to honour an identity defined by ASD. Since this teacher had had the family assessed by psychologists, this may indicate the continued currency of psychoanalytic constructions of ASD.1 Alternately, and in keeping with the views of this participant, this teacher’s actions may be viewed as a discursive strategy designed to reject an entirely autistic identity, and therefore validate behavioural intervention methods being used by the school. Regardless of which is the case, this example illustrates that the history and continued ambiguity of medical knowledge around ASD means that this power/knowledge can operate in different ways depending on the power relationships involved.

These parents resisted the idea that autism was somehow peculiar to their child. In avoiding stigma in the face of resistance to medical constructions of their child’s behaviour, they asserted many times their child’s autistic master status (Hughes 1945). In their meetings with their child’s school, parents used the services of psychologists, who came to meetings with school authorities after having observed their parenting style at home. This strategy was used by parents to validate the quality of their parenting, enlisting the professional power of psychology to promote an autistic social identity for their child. Furthermore, felt stigma remained successfully resisted despite enacted stigma in institutional settings.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Conceptual fields
  5. Sample and methods
  6. Subjectivity, stigma and resistance
  7. Conclusion
  8. Acknowledgements
  9. References

Gray (2002) speculates that whilst biogenetic explanations for disorders have the potential to reduce stigmatisation of parents, it is not clear whether this will be the case for parents of children diagnosed with ASD. The central finding of this research is that these medical discourses are strategically deployed by parents of children diagnosed with ASD to resist stigmatisation. Parents resist felt stigma by articulating subjectivities discursively positioned in a ‘world of autism’, a discursive setting which constructs parents as unspoiled. Enabled by the ambiguity intrinsic to the medical construction of ASD as a spectrum, parents engage in a strategic reconstruction of normality, creatively citing medical knowledge to articulate an unspoiled subject position (cf.Whitmarsh et al. 2007). This creative process means that felt stigma in this sample was extremely rare despite the loss of friendships through enacted stigma. As a caveat, it must be noted that since this (relatively small) sample was entirely drawn from parents active in support group activities, this close involvement with institutionalised knowledge is likely to have influenced the prevalence of this kind of discursive strategy in this research.

Stigma management in public situations was made difficult by the anonymous nature of face-to-face interaction in public, with parents experiencing enacted stigma due to the difficulty of deploying medical constructions of their children’s deviance. In schools, medical constructions of deviance were sometimes met with resistance by those in positions of authority, resulting in the need for resistance aided by legitimate professional power in the form of psychologists. This active disclosure of otherness runs contrary to Goffman’s (1964) assertion that the stigmatised manage information in order to prevent others from discovering their status, illustrating the agency-enabling character of knowledge for this group.

Parents of children diagnosed with ASD successfully negotiate and perform an unspoiled subject position. This is a subject position that can not be described as stigmatised, since no parent reported feeling inferior or devalued. This is a subjectivity that is constructed as a different kind of normality, the performance of which parents value (cf Kelly 2005, Rehm and Bradley 2005, Landsman 2003). However, it is important to note that this articulation and performance is contingent upon an acceptance of their child’s ontological difference as an autistic subject. Only through citation and creative iteration of these discourses can this subject position be articulated. This ongoing performance therefore reproduces the power of the discourses which create their child’s difference. Whilst stigmatisation is resisted, this strategy prevents subversion of the discursive construction of the autistic subject as other. Medical knowledge enables resistance to stigmatisation at the cost of othering the child diagnosed.

Informed by these findings, the concept of felt stigma describes the experience of an ontologically inferior subject position, resistance to which requires a structural (discursive) context which constructs the subject as unspoiled. Enacted stigma in face-to-face encounters is enabled by the discursive construction of identity as it is expressed through power relations in a micro-social setting. Resistance to this political act requires others to accept unspoiled definitions of the social actor, the legitimate range of which is discursively produced. Furthermore, it must be noted that in the poststructural account of agency as produced by temporality, in the space between discourse and iterative performativity (Butler 1997), it is clear that no subject position is ever fully actualised. Subjectivity is a process, performativity a constant negotiation of the discourses which constitute the subject. Indeed, it is the impossibility of fully actualising any subject position that reveals stigmatisation as a constantly contingent social process and sensitises empirical research to the importance of resistance. Whilst acknowledging this, the characterisation of certain subject positions as spoiled or unspoiled allows stigma research to maintain a focus on the social control element of stigmatisation and the painful lived experience of being stigmatised. The tension between the somewhat static characterisation of a subject position as spoiled and the constantly contingent nature of subjectivity as a process is useful to enliven stigma research, and does not reduce the usefulness of stigma as a concept.

Footnotes
  • 1

     My thanks go to the anonymous reviewer who suggested this interpretation.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Conceptual fields
  5. Sample and methods
  6. Subjectivity, stigma and resistance
  7. Conclusion
  8. Acknowledgements
  9. References

My thanks go to Kevin White for his support during the time this research was being conducted, Johanna Wyn for suggestions on early drafts of this paper, and the anonymous referees of Sociology of Health and Illness for their valuable comments.

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  2. Abstract
  3. Introduction
  4. Conceptual fields
  5. Sample and methods
  6. Subjectivity, stigma and resistance
  7. Conclusion
  8. Acknowledgements
  9. References
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