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.
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
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?
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 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.