Medical Sociology

Themeaningofalabelforteenagerswithautism.pdf

Home >Social Science homework help >Sociology homework help >Medical Sociology

The meaning of a label for teenagers negotiating identity: experiences with autism spectrum disorder Lise Mogensen1 and Jan Mason2

1Medical Education Unit, School of Medicine, University of Western Sydney 2School of Social Sciences and Psychology, University of Western Sydney

Abstract There is a lack of consideration for the effects that labels such as autism, and the associated diagnostic processes, have on the children to whom they are applied. In this article we present research conducted with five teenagers diagnosed with autism. Through a collaborative, participatory research approach, these teenagers shared their experiences of their diagnosis using communication methods of their choice. The young people’s accounts illustrate the understandings they had of autism. Important findings from the research illustrate how the participants integrated this knowledge with their sense of self, how they negotiated issues of identity and the meanings that feeling ‘different’ had for them. Whether the diagnosis was experienced as advantage or disadvantage by the young people depended on the extent to which it facilitated knowledge and control. The article concludes with a discussion of the significance a diagnosis may have for the ways in which children and young people construct their personal identity and their social relations, and in terms of negotiating control in their lives. We suggest that ways of minimising stigma and marginalisation associated with a diagnosis of autism need to be considered at a policy level.

Keywords: children, youth, disability, identity, participatory research, health policy

Introduction

In the past two decades autism has increasingly been defined as a social problem. During this time a growing number of children and young people have been diagnosed with one of a range of autism spectrum disorders (ASD) (Matson and Kozlowski 2011). This increase has been attributed (in part) to the widening of the diagnostic criteria for ASD (Gernsbacher et al. 2005, Matson and Kozlowski 2011). The labelling of children with autism1 is, however, a complex decision with many implications (Hodge 2005, Nadesan 2005). On one hand, the pol- icy decision to diagnose or label children has significant advantages for children and their fam- ilies in terms of delivery of services (Ho 2004, Nadesan 2005). In particular, a diagnosis is used to determine the nature and quantity of services provided to children in education sys- tems. Children without a diagnosis, who behave in a manner perceived as different from the norm, may be interpreted and responded to as lazy or lacking interest in educational activities, based on assumptions that children generally learn and develop in the same way (Ho 2004). The early detection of significant impairments can be a prompt for the development, by

© 2015 The Authors. Sociology of Health & Illness © 2015 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd. Published by John Wiley & Sons Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Maiden, MA 02148, USA

Sociology of Health & Illness Vol. 37 No. 2 2015 ISSN 0141-9889, pp. 255–269 doi: 10.1111/1467-9566.12208

teachers, support staff and parents, of focused educational plans and of specialised help to assist students achieve academically (Ho 2004, Nadesan 2005).

On the other hand, potential disadvantages for children are inherent in the assumptions and stereotypes associated with labelling them as autistic, and with the medical processes which accompany such a diagnosis (Hodge 2005, Nadesan 2005). Firstly, the pathologising of differ- ence that a diagnosis brings may result in a sameness of treatment for children with this diag- nosis, despite their individual strengths, achievements and interests (Ho 2004). In this process the diagnostic label may become ‘more significant than the nature of the child’ (Hodge 2005: 2), as in situations where children become objectified because they are associated with, or even named as, the diagnosis (for example, ‘the autistic boy in year seven’). Secondly, the asym- metrical relations embedded in the medical, diagnostic process can position the child as pas- sive or inferior and as having needs that are abnormal (Ho 2004). These notions are informed by Goffman’s (1963) theory of social stigma by which particular labels have the power to spoil the identity of the individual.

The implications of the diagnostic process and the labelling that accompanies it have received little attention in the literature in terms of what it means in the lives and experiences of the children and young people who receive a diagnosis of autism. An extensive literature review, conducted by the first author (and researcher) (Mogensen 2011), highlighted the fact that research about autism has primarily been based on what is commonly referred to as the medical model. In this model the researcher adopts an expert role, which has been critiqued for treating the child as an object, in contrast to that of a subject whose views are included in the data (Prout 2002). It has also been critiqued for emphasising deficiencies in those diag- nosed and thereby ignoring their qualities as persons. Alternative constructions of both the child and disability have been promoted in the literature in recent decades (for example, Con- nors and Stalker 2007, Davis et al. 2003).

The literature shows that connecting the principles of childhood sociology and disability studies in research can significantly contribute to understanding the lives of disabled children and young people from their own experiences (for example, Connors and Stalker 2007, Davis 2006). Epistemologically, sociology of childhood theory was considered relevant to this research because it recognises children ‘as active in the construction . . . of their own social lives, in the lives of those around them and of the societies in which they live’ (Prout and James 1990: 8). Acknowledging children as social actors who are able to contribute knowl- edge about issues that are important in their lives, such as having a diagnosis, emphasises the importance of taking their view seriously and placing them centrally in research.

Using a critical disability studies perspective was important for this study because of the way the social model of disability (Oliver 1990) differentiates disability from impairment. It enables us to understand the disabling effects of structural, social and attitudinal barriers on disabled people’s lives as separate from individual experiences of physical, cognitive or sen- sory impairments (Morris 2001, Oliver 1996). Difference and identity are two contested con- cepts in critical disability studies theory (for example Oliver 1996, Shakespeare 1996) that resonate strongly with findings in this research. Identity as a concept has different meanings in different contexts (Shakespeare 1996) but in terms of disability, Oliver (1996) argues that dis- abled people are those who can be identified as such (by the presence of an impairment or externally imposed restrictions) or those who actively identify as such. Currently, these con- cepts have received limited attention in research with children and young people diagnosed with autism.

One aim of this research was to learn about the lives of a small group of young people diagnosed with autism, from their own experiences. Another aim was to use methods to facili- tate their direct participation in the study. In this article we present findings about individual © 2015 The Authors Sociology of Health & Illness © 2015 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd.

256 Lise Mogensen and Jan Mason

experiences of having a diagnosis of autism as shared by five young people in this research. These findings contribute to our understanding of the significance that receiving a diagnosis of autism had for these young people’s active construction of identities, and the meanings they attributed to the diagnosis.

Methodology and methods

The theories informing the research reported here, contributed to a particular use of phenom- enology and ethnography for developing an inclusive, collaborative, participatory approach with the participants. Phenomenology was relevant to this research, as it involves setting aside personal beliefs and, in Crotty’s (1998) terms, enables the ‘privileging of personal experiences’ of the young participants and thereby widening the sociological knowledge about their individual lives and experiences. The use of ethnography provided flexibility in allowing the researcher to observe and interact with the children in social settings and enabled them to actively contribute to the direction of the research process (Christensen and Prout 2002, Davis 1998). For example, in this research the young people were consulted prior to commencing (and during) data collection on their preferences for methods of com- municating with the researcher. A flexible use of methods allowed the researcher to individu- alise and change communication strategies according to each participant’s preferences and abilities.

The five young people who contributed to the findings presented here were aged between 13 and 19 years of age (teenage), diagnosed with different forms of autism. These participants were recruited through the website of Autism Spectrum Australia and the organisation’s school newsletters. Institutional ethical approval was obtained for this project and consent was treated as an ongoing process throughout the research. All names used in this article are pseudonyms.

The methods used in this research were flexible and were allowed to change. The researcher offered the participants a range of communication options (including face-to-face interviews, drawings, photos, communication cards and e-mails) for sharing their views in ways suited to them individually. The face-to-face interview was the most common choice by participants ini- tially, but after the first two visits two individuals changed to e-mail due to their time con- straints. Communication strategies were also flexible, depending on individual style and requirements. For example, people diagnosed with autism sometimes have difficulty in responding to the open-ended questions typically associated with qualitative interviews (Beres- ford et al. 2004). Therefore, the researcher took direction from the way in which the individual participants communicated with her during interactions with them (on average in three sessions per participant) and some open-ended questions were broken down into a more structured format.

Thematic analysis was carried out across the data collected from the participants (transcripts, e-mails and photos of a communication board). An interpretative framework (Richards 2005) was used to explore how themes related to the broad research question topics and the theoretical underpinning of the project. Firstly, the researcher identified initial strong or recurring topics. These initial topics were listed, and possible connections were made with theoretical concepts relating to childhood sociology and disability studies. Thereafter, links between individual topics were explored to develop the themes. This process was iterative and identified common and divergent perspectives within and across data inputs, which formed the basis for the construction of new understandings about the lives of young people diagnosed with autism.

As part of the collaborative approach, and to strengthen research rigour and the trustworthi- ness of the analysis, the young people were encouraged to provide feedback on summaries of

The meaning of ASD for teenagers negotiating identity 257

the findings as well as on the research process. Two participants provided feedback on the research process and four participants commented on their own contributions. Feedback from the young people showed that three of them felt empowered by being able to contribute their own views, while for two participants being able to direct and decide on research methods was more significant.

In the following sections of this article we present findings from the views and experiences shared by five research participants. In the final section of the article we discuss the signifi- cance of these findings.

Findings

The findings presented here illustrate the meanings the diagnosis of autism had for the way the young people negotiated identity. The accounts show a variety of experiences and views about learning of and being labelled with autism, in terms of the young people’s struggles with personal identity, their social relations and the ways in which they negotiated impairment.

Meanings of the diagnosis of autism at the level of individual personal identity

The meanings that a diagnosis of autism had for the young people at a personal level, pre- sented here, are indicative of the diversity and complexity of experiences with a diagnosis. While individual participants variously described the diagnosis as being oppressive, positive or even liberating, several individuals it also facilitated their having some control in their lives.

Diagnosis as oppressive Kim (age 18) described her experience of being diagnosed as oppressive. With help from her mother, she explained that she had not wanted anything to do with the diagnosis, because it meant ‘difficulties’ and ‘made everything so much harder’. The diagnosis had confronted her with issues of her difference from others, of which she had not previously been aware:

Mother: Kim has in the past said that up until she was 8 . . . she didn’t think she was different at all. She just lived in her own little world and was quite happy doing what she was doing. But then as soon as the intense intervention sort of stuff happened, evolving around ASD specifically, all of a sudden there was a label and that is when you started hating . . .

Kim: Yeah, the label and what came with it . . . Mother: The fact that there was so much focus put on her all of a sudden . . . And she

was . . . yeah would that be right? Kim: Yeah . . . Researcher: Were you told of it [autism] then (when she was 8)? Kim: I was probably told but I just didn’t understand what it meant until like the

end of last year.

Kim explained that what came with the label, was intense, early intervention directed by a health professional. She experienced this ‘sudden focus’ on her as an effort to change her and frame her identity, in ways that, at that time, she did not understand. The mainly negative feel- ings Kim associated with the diagnosis of autism meant she had to struggle with a personal sense of identity of being different. Interactions with others and, in particular, with health prac- titioners confronted her with ways in which she was different and outside the norm:

258 Lise Mogensen and Jan Mason

Researcher: Did you feel different? Kim: Yeah . . . Researcher: From other people? Kim: I felt it . . . but like I didn’t notice it until that – just special things – at

intervention and places . . .. And then I felt different and it was . . . like an outsider sort of . . . I don’t know why, I couldn’t fit in. I couldn’t fit in . . . I couldn’t talk . . . I got lost.

Diagnosis as liberating In contrast to Kim, Ian (age 18) and Anna (age 16) experienced the diagnostic process as lib- erating – as a means of situating themselves in relation to normative experience. Their experi- ences of receiving a diagnosis were connected with their understandings of identity, in terms of the ways in which the diagnosis enabled them to integrate knowledge about their condition in their lives. Ian explained how he used the diagnosis of Asperger’s syndrome, when given 2 years before the research interviews, as part of a reflexive process to understand his self within his biography:

Um I started to look at my life completely differently . . .. Well, I noticed that um . . . but I never really looked at it . . . but all throughout my life . . . I was sort of . . . I was always a bit weird, and I noticed I had little habits and things . . . and this thing that I eventually was diagnosed with . . . that condition . . . looking back on my life and thinking yeah I saw a lot of it there, where previously I just thought it was normal.

The knowledge inherent in the diagnosis enabled Ian to gain insights into the ‘habits and things’ which characterised how he lived his life and to confront the ways that he felt his life differed from normative life experiences:

Researcher: Right. So once you were diagnosed, you saw things that were different? Ian: Um, yeah . . . I had symptoms back then which I didn’t know I had . . . so

little habitual things and little patterns and things.

For Ian, being able to apply the diagnostic label to himself enabled him to reframe his prob- lems and incorporate them into an acceptable sense of self, legitimising his experiences of dif- ference, while still recognising the negative connotations commonly associated with the label:

[W]hen she . . . like she [his specialist] diagnosed me with Asperger’s and stuff and just . . . it just put everything into perspective for me because . . . um . . . a lot of people think ‘Oh, it’s a label’ and all of a sudden it has to be some sort of prejudice – but I think that is sort of like a secure sort of thing for me. And just finding out that problems that I was dealing with were real problems and that they actually had names and labels and that they have diagnosis and treatments for that sort of thing. And that was a really secure thing for me. I wanted to be labelled because I suddenly knew what I could do and I knew there was a way I could cope with that problem once it had been identified. It was like a diagnosis in a way, saying that ‘Oh, for this certain thing like you use this certain method and it works well’.

Diagnosis as facilitating control For Anna the significance of a diagnosis was that it provided her with a sense of gaining con- trol in her life. It gave her a reason for feeling different from others and she was resentful that

The meaning of ASD for teenagers negotiating identity 259

the diagnosis had been withheld from her until recently (3 months before the research inter- views). She was beginning to recognise that the knowledge provided by the diagnosis could have helped her in earlier attempts to develop a frame for making sense of her experiences:

Anna: I had just been through months of problems and questioning why . . . [things were happening] she (her mother) had known long enough . . .

Researcher: So you feel that it would have been helpful to know about . . . ? Anna: Yeah . . . Researcher: Do you think things would have changed much for you if you had known

earlier? Anna: Yeah . . . it would have . . . if I’d known before.

There was a sense that Anna had been struggling for control over things happening to her in terms of what Huws and Jones (2008) have described as the ‘absent presence’ of autism. Anna’s experience resonates with the argument made by some autistic self-advocates that it is important for diagnosed individuals to be informed that they have a diagnosis of autism as soon as possible. While most will already know, or feel, that they are different from others, ‘they will suffer deeply from not knowing why’ (Princes-Hughes 2004, cited in Davidson and Henderson 2010: 174).

For Ian, actively exploring and using knowledge of the diagnosis also helped him to gain some control in his life:

It was really helpful because I suddenly understood myself a bit more. Because I read these books about heaps of people who had Asperger’s in their lives or that – and I found out that there were certain similarities that all Asperger’s people had with each other.

Seeing a common identity with others with whom he shared characteristics, contributed for Ian, to his positive experiences of who he was, in a similar way to that described by other people diagnosed with Asperger’s syndrome who choose the label for themselves and empha- sise the way they differ from social norms (for example Brownlow and O’Dell 2006, Davidson and Henderson 2010).

Autism as positive identity For Lucas (age 16), autism and ‘being different’ were positive and fundamental parts of his self-concept. In contrast to Anna, autism was something he had always’ known about, and the diagnosis had formed a significant part of his childhood. This knowledge meant that Lucas did not have the same struggle to understand his experiences of difference. Lucas framed his iden- tity in relation to the diagnosis of autism and with a distinct sense of pride in being exactly as he was, including where he saw himself as different from the norm, as illustrated in the extract below from an e-mail response to a question of whether there was ever a time when he wished away autism from his life:

Never, I believe that it was pure chance and genetics that I am this way, and it gives my class group a more serious look on things, my friends notice two sides to me, the more pro- active and punctual Lucas, and the mysterious out- of-school Lucas, I say mysterious, as [a] few people think I work for ASIO [Australian Security Intelligence Organisation]. This may be because I have an interest in the subject of Intelligence and that I can say things and know a lot about security subjects, and the fact that I disappear when I’m not on school grounds. This two sided me is a trait of Autism, and I feel my peers admire me because of

260 Lise Mogensen and Jan Mason

it. . . . when I’m in a relaxed environment the real me comes out, and I think they are taken by that, also general comments like ‘my gosh Lucas, you are soo mysterious’.

Lucas’s account shows how he asserted his identity within his own interpretations of the diag- nosis. He actively structured his identity around difference and through his objects of interest, choosing to focus on aspects that contributed specific qualities to his personality such as being punctual, knowledgeable and mysterious.

These findings clearly show that the personal meanings and experiences young people attri- bute to a diagnosis of autism are complex and multifaceted according to the context in which the diagnosis is given and how young people understand it in relation to their personal biogra- phy. One young person, Dylan (aged 13) said the diagnosis of autism was unimportant to his personal identity.

Dylan, who had had the diagnosis explained to him by his sister when he was 9, asserted that it was not significant for him, answering an emphatic ‘No,’ in response to the research- er’s question: ‘Do you think it [autism] makes you different from your friends in any way?’ However, he indicated that others, adults in particular, saw him as different. He interpreted this difference positively in terms of the allowances that were sometimes made for him, explaining: ‘I know that if I wasn’t autistic my Mum wouldn’t let me get away with much stuff’ and ‘I think I get a bit of easier work’ at school. So although Dylan indicated that the diagnosis was not significant for his self-identity, he recognised that it had a meaning and a function – in perhaps reducing some of the typical school expectations and the way others saw him.

Meanings of diagnosis for identity at the socio-relational or public level

The dilemma of disclosure and social identity: stereotypes and negative attitudes The participants suggested that too much focus was placed on the negative connotations attached to the diagnosis in society. They felt that public attitudes generally showed a lack of understanding about autism, typically constructing the differences in terms of deficiencies. These negatives were aspects of the diagnosis that the participants resisted as part of their identity. For example, Lucas criticised the ‘stereotype of an autistic or borderline autistic, and of Aspergers, as people who are anti-social, can’t handle relationships (sexual and otherwise) and know a lot about trains’. He spoke of the need for what he referred to as ‘a more in-depth awareness’ of ‘the nature of autism,’ explaining:

[T]here is no definite diagnosis for any case of borderline autism, autism, Asperger’s, ADD/ ADHD . . . we are all different.

Kim suggested that the broader society needs to recognise that ‘we are not stupid . . . we can think for ourselves.’

This awareness of stereotypes and attitudes towards the diagnosis of autism meant that some of the young people were reluctant to disclose their diagnosis to others. Anna and Kim both struggled with the fear that disclosing the diagnosis would for them result in being treated as different:

Researcher: Do your friends know [about your diagnosis]? Anna: Nooo I don’t tell them.

The meaning of ASD for teenagers negotiating identity 261

Researcher: Do you think it would make life easier for you if they knew . . . sometimes? Anna: Yeah. Researcher: But at the same time you don’t really want them to. Anna: No. Researcher: Why don’t you want them to know? Anna: I just want them to think about me the way they think about me now. Researcher: Do you think they would think about you differently if they knew? Anna: Yeah.

When Kim was asked whether any of her friends knew about the diagnosis, she responded:

I didn’t want to tell them at first because I wanted them to have their own opinion before they find out something that could . . . you know, let them treat me differently . . . I didn’t want to be perceived as different.

Kim and her mother described how Kim had become proficient at executing social strategies, described in previous research as ‘masquerading’ (Carrington and Graham 2001), allowing her to adapt to various social contexts and being perceived as normal. When asked to elaborate, Kim asked her mother to describe the way she worked at conveying a picture of her self to fit normative expectations:

Mother: I describe. OK. Kim has told me that because she spent so much time observing what she calls NT2 behaviour and working out how people tick that she’s worked out that there is certain characteristics of people. Like she has studied it so much that she can pick how . . . what someone is like . . . the way they behave sort of describes to her what they’re like as a person. And then she is able to sort of put on like a mask, she puts on a mask that allows her to fit with that person’s character so she can relate to them . . . or at least fit . . . is that right?

Kim: Yes. Mother: Without feeling um . . . Kim: Uncomfortable . . . Yep. Mother: Uncomfortable . . . So she is quite often in character when she is talking to

people, depending on who they are.

In contrast to the two young women, Lucas was more relaxed about his peers knowing about his condition. He was comfortable with his diagnosis and the idea of being different in ways that worked for him socially:

[I]t doesn’t bother me at all, my friends have some idea about me being unusual, but I’m not sure that they know a complete diagnosis, and I don’t think it really matters.

The findings presented in this section clearly indicate that social experiences were significant for the way the participants understood themselves and related to the diagnosis. Feelings of being different could be detrimental to their sense of self when connected with lack of social competence. They seemed uncomfortable with the connotations of incompetence and negative stereotypes associated with autism that seem to persist in society, while still acknowledging certain personal limitations as part of the condition.

262 Lise Mogensen and Jan Mason

Meaning of the diagnosis in terms of negotiating impairments

Impairment and losing control The young people did not talk about the social effects of autism as impairments but referred to their specific difficulties, or personal faults, flaws or limitations. Anna and Ian both gave examples of how they experienced the effects of impairments in their engagements with friends, as having difficulties with understanding certain social interactions. Ian explained:

I’ve got some of my faults . . . I guess um the friendship thing – it has always been a big sort of problem for me . . . I go too far in some jokes, sort of thing. Sort of – I don’t under- stand that there’s a certain boundary that you don’t cross when you’re speaking to people. . . . And I can do that unintentionally, just not even knowing I’m doing it.

Ian and Anna also both talked about impairment in terms of losing control of the self. Inappro- priate anger was a significant issue which they related to their diagnosis:

Ian: I really lose it . . . or something, so I can get angry quite a bit . . . um . . . just snapping at people over nothing.

Anna: The fact about . . . it’s not normal . . . I get angry at Mum, and when she asks a question I sometimes yell the answer at her . . . I don’t know but it just comes out . . . I can’t control it.

It was at the social relational level that the meanings of their diagnoses in terms of impair- ment, as defined by medical practitioners, impacted on and required active negotiations from the young people, as they lived their lives in various social contexts.

Context, especially school, was significant for the young people’s individual experiences of living with difference and of lacking control. Kim described a sense of losing control of her feelings, as related to her diagnosed impairments, after having changed schools. Kim experi- enced the effects of the new environment and the demands that followed, as losing control in ways that meant she had to make a decision to confront her differences:

Kim: I went to boarding school then that’s when we had to sort of open up and discover about it because of problems being with the stress issues and stuff like that . . . I can be quite unfocused. And that was hard to begin with cause [sic] I didn’t really want to. But then sort of had to. I had to make that decision.

Mother: The environment at boarding school was such that it was such a high level of stress all the time. Kim started saying things like ‘I feel like I’m becoming autistic again’ or ‘I feel like I’m not controlling it anymore’. ‘It throws me . . . I used to be able to control it, now I can’t’.

Even though Kim had identified the boarding school environment as being stressful, she interna- lised her difficulties and attributed her lack of control to her diagnosis using the term, ‘becoming autistic again’. Kim explained that while she tried ‘not to use Autism as an excuse’, she some- times felt that the diagnosis was necessary in validating experienced difficulties and to obtain sup- port from teachers in order to achieve, according to normative expectations in the school context.

Ian recognised how leaving the school environment was liberating in terms of enabling him to experience broader social relations, as talked about in the extract below in terms of his experiences at church and in his newfound employment:

The meaning of ASD for teenagers negotiating identity 263

I don’t really think I am all that different after all, as I have recently found a nice group of people at church who will accept me for who I am. Not to say I don’t have to try my best anymore, but rather, I can be allowed to contribute to other people just like I have always wished I could. Other than the example of church, there have been some other areas within my new life that have revealed to me that I am probably just as normal as the next teenager. One more of these areas can be found in the form of my current employment – it is here that, once again, people enjoy my company and make me feel very valued. I have begun to think that my life has been very limited at school and I just haven’t been able to experience many friendships beyond my peers.

Ian’s new experiences outside of school not only enabled him to feel useful and valued, they had the effect of ‘normalising’ him as a person.

In another context, Kim had found health professional–client relations disempowering in terms of the professional’s attitude and control over prescribed interventions. She considered how the professional’s condescending attitude toward her emphasised her inferior status:

Kim: I found it very patronising with all these cards and things. Mother: So it became more of an issue of feeling like an idiot rather than . . . ‘cause

that is what she said. She used to hate – you know – those PECS cards and Boardmaker – she just hated it!

Researcher: OK, so what do you think would have been helpful for you? Kim: I don’t know. I really – I just didn’t like the patronising manner. I still cannot

stand being spoken down to . . . Mother: . . . and once you said to me, that it was like they tried to get you to work on

areas that weren’t relevant . . . but it would have been helpful if they had helped in other areas.

Kim: Yeah.

It was clear that Kim’s experiences of early intervention had been significant in shaping the way she related to her diagnosis. Kim’s inferior, ‘idiot’ status was reinforced for her when she experienced interactions as defining her needs and interventions, in ways that lacked meaning for her and took away her control.

Impairment and taking control To several participants the notion of losing control of self, implied . . . a lack of competence. Some of them described how they used strategies in negotiating social relations to exert con- trol over their impairments in different contexts. In addition to masking her differences, Kim’s efforts to become ‘normal’ involved gaining control in social situations by working hard to ‘fix what was wrong’ with her, in order to overcome her differences. Lucas also explained how, over time, he had consciously worked to acquire certain skills to overcome perceived social limitations:

[Y]ou know how people with autism generally have really bad social skills . . . I’ve tried to teach myself good social skills . . . Over 12 years I have taught myself through trial-and- error, thinking and learning from people to gain social skills.

Lucas described how his preferred mode of social interaction, communicating online, enabled him to have a sense of control and security because he could stay in his comfort zone. Ian and

264 Lise Mogensen and Jan Mason

Kim both explained that maintaining control in their everyday lives required ongoing planning and effort, learning skills that would conceal or diminish differences:

Ian: It takes a lot of time and effort and just um, just thinking ahead before you do something to keep everything . . . to actually keep things under control . . .

Kim: Years ahead. Yeah plan every single day . . . everything would go like . . . not consciously, but pretty much the next hour, to the next, to the next. I will just do a plan to the week, to the month to the year.

The findings presented here relate to struggles for control associated with having a diagnosis of autism. For the young people these experiences were additional to everyday struggles for control typical of the socially structured period of teenagehood, in the school and sometimes the family. The young people experienced a regular undermining of their social competence as persons, on the basis of their age, in ways described in findings from research with children and young people more generally, where they tell us the importance of day-to-day control in their lives (for example Mayall 2002).

Discussion

Children diagnosed with autism are typically portrayed as being significantly different from other young people and generalisations are made about their lives. These generalisations tend to define the experiences of children diagnosed with autism as either positive or nega- tive. However, the participatory research reported here indicates that when we hear from young people directly, we learn that there is more complexity and heterogeneity in the ways in which they engaged in making sense of their diagnoses than is evident in the lit- erature. While the diagnosis was associated with negative experiences – of being stigma- tised and treated differently from non-diagnosed young people, it was for some young people associated with positive experiences in terms of better understanding oneself. It legitimated difference and empowered them to negotiate living lives of difference. In the discussion we focus on the significance, for the young people, of a diagnosis of autism for personal identity, for social relational processes and for facilitating control in their own lives.

Significance of diagnosis for personal identity In relation to self-identity, the findings highlight the significance of the labelling process for young people who at times struggled to understand who they were, in terms of Giddens’ (1991: 53) description of ‘the self as reflexively understood by the person in terms of her or his biography’. In the case of Kim the diagnosis was experienced as negative and restrictive in her interactions with health professionals and in discovering limitations she did not know she had before she was labelled with autism. However, for some other young people the diagnosis provided a sense of liberation and understanding of self. For Ian, seeing a common identity with others with whom he shared characteristics contributed to positive experiences of who he was. For Lucas, the uniqueness of the characteristics he attributed to autism was significant to the way he constructed his identity in positive terms. The accounts of Ian and Lucas reflect reports in the literature of people diagnosed with Asperger’s syndrome who choose to identify with the label and emphasise the way they differ from social norms (for example Brownlow and O’Dell 2006, Davidson and Henderson 2010). Dylan’s discussion of his experiences con- trast with those reported by Kim, Ian and Lucas, in indicating that for some young people

The meaning of ASD for teenagers negotiating identity 265

diagnosed with autism, the experiences associated with the label may not have significant implications for the way they construct their identity.

The diversity of experiences of these young people contrasts with the typically homoge- neous portrayals of children in more traditional research about autism. These findings also sup- port the comment by Tom Shakespeare (1996) in a discussion on ‘disability identity’. He refers to the fact that ‘identity is a complex field’ (p. 94) and that, while numerous disciplines use the word ‘variously and in different contexts’ (p. 94), the metaphor ‘provided by the con- cept of identity as narrative which focuses on the stories we tell about ourselves and our lives’ (p. 99) has value for understanding key approaches to disability identity.

Significance of diagnosis for social relations It was in their interactions with others, that participants’ experiences reflected the complexity of having a potentially stigmatising label. While the participants were generally accepting of their own differences from others, some of the young people resisted autism as a social or public identity. They experienced relationship issues attributable to the broader cultural repre- sentations of autism and to persistent disabling attitudes in society, similar to those described more broadly by writers in disability studies (Shakespeare 1996, Thomas 1999). Goffman (1963) has referred to experiences of stigma as highlighting ‘undesired differentness’ from ‘the normals’ (p. 44) – an attribute of relationships that is ‘deeply discrediting’ (p. 3). Recent research more specifically on autism, (for example Davidson and Henderson 2010) highlights problems with disclosing the diagnosis at the public or socio-relational level, even when peo- ple may consider their diagnosis helpful at the personal level. For young people, issues of dis- closure may become particularly significant in attempts to fit in with peers (Humphrey and Lewis 2008). The act of trying to pass as normal is not an uncommon theme in the disability literature. The perceived stigma associated with a diagnosis leads some people to go to great lengths to deliberately mask or conceal their differences (for example Goode 2007, Thomas 1999), and their experiences illustrate complex interrelations between the direct effects of impairment and the effects of disablism (Thomas 1999). Thomas (1999) has suggested that while such strategies might provide an immediate sense of control, long term, the fear of being discovered may have negative psycho-emotional effects. This issue was highlighted by Kim who actively used masquerading in an effort to pass as normal and to hide the feelings of infe- riority that she attributed to autism.

Some of the findings presented here contribute a unique insight into how some children might experience being diagnosed with autism and early intervention practices. While the impacts of health professionals’ attitudes on children’s experiences are rarely discussed in the literature about autism, it was clear that Kim attributed her negative feelings toward the diag- nosis to her early experiences of intervention and the responses she received from health pro- fessionals. Kim’s experiences highlight the significant implications of a diagnosis for sense of self-worth, in a context where the medical meaning of a diagnosis is that of being deficient and is experienced as oppressive. Shakespeare (1996) proposes that such internalised oppres- sion occurs because people are ‘socialised into thinking of disability in a medical model way’ (p. 104).

Significance of a diagnosis for facilitating control The findings indicate that a major factor in determining whether the diagnosis was experienced as an advantage or a disadvantage was the extent to which it facilitated agency and control for the young people. Where individuals experienced their diagnosis as helping them understand themselves and gaining control in their lives, they considered the label an advantage. Where the young people associated autism with a lack of control, or when it impacted negatively on © 2015 The Authors Sociology of Health & Illness © 2015 Foundation for the Sociology of Health & Illness/John Wiley & Sons Ltd.

266 Lise Mogensen and Jan Mason

their identity and social relations, the label was experienced as a disadvantage. The importance of children and young people having agency and control in their own lives is acknowledged in research and policy which, in line with the UN Convention, argues for greater participation for children in decision-making about their own lives (United Nations 1989). In the research reported here, in the context of having a diagnosis of autism, control, or the lack of it, appears crucial in the young people’s negotiations of their development of identity and in their every- day social relations. These findings contribute important knowledge about the experience of autism to the dialogue in the literature on the advantages and disadvantages of this diagnosis (Hodge 2005, Nadesan 2005).

Conclusion

The young peoples’ experiences of being diagnosed with autism inform us of the way in which these diagnoses can impact on children and young people so labelled. These findings illustrate that knowledge from those who live with the diagnosis can add to and also challenge dominant understandings about young people with a diagnosis of autism. In particular, it adds knowledge in highlighting the significance of structural factors embedded in social policies and the practices associated with them. Acknowledging the significance of structural factors contributes challenges to the policies and practices that continue to marginalise young people with impairments, when diagnosis is interpreted as defining difference from a norm. This point is emphasised by young people’s descriptions of how, in disabling environments, the diagnosis of autism itself became a context for experiences of difference.

The findings support McDonald’s (2008) suggestion that social policy developed for and about children has a significant role in creating and promoting identities of those who are its object. In illustrating the extent to which the framing of autism is associated with the ordering of social relations and normative expectations for those with autism, the findings point to the importance of promoting policies and practices which not only minimise the stigmatisation and marginalisation of those with a diagnosis of autism but also provide the spaces for chil- dren and young people to experience a sense of control in their own lives.

Address for correspondence: Lise Mogensen, Medical Education Unit, School of Medicine, University of Western Sydney, Locked Bag 1797, Penrith NSW, Australia. E-mail: L.Mogen- [email protected]

Acknowledgements

We wish to thank the young people and their families who contributed their time, experiences and knowledge to this project. We greatly value the contributions made by Annie McCluskey as the second supervisor on this research project.

Note

1 For brevity we use the term autism in the remainder of this article. The term ASD is often used in policy documents but inconsistently in the literature. At the time of the research ASD encompassed a broader range of diagnoses including that of Asperger’s syndrome, which has been eliminated in the recently (2013) published DSM-5.

The meaning of ASD for teenagers negotiating identity 267

2 (NT,neuro-typical: a description people diagnosed with autism use about non-diagnosed people in aut- ism advocacy forums)

References

Beresford, B., Tozer, R., Rabiee, P. and Sloper, P. (2004) Developing an approach to involving children with autistic spectrum disorders in a social care project, British Journal of Learning Disabilities, 32, 4, 180–5.

Brownlow, C. and O’Dell, L. (2006) Constructing an autistic identity: AS voices online, Mental Retarda- tion, 44, 5, 315–21.

Carrington, S. and Graham, L. (2001) Perceptions of school by two teenage boys with Asperger syn- drome and their mothers: a qualitative study, Autism, 5, 1, 37–48.

Christensen, P. and Prout, A. (2002) Working with ethical symmetry in social research with children, Childhood, 9, 4, 477–97.

Connors, C. and Stalker, K. (2007) Children’s experiences of disability: pointers to a social model of childhood disability, Disability & Society, 22, 1, 19–33.

Crotty, M. (1998) The Foundation of Social Research: Meaning and Perspective in the Research Pro- cess. Sydney: Allen & Unwin.

Davidson, J. and Henderson, V. (2010) ‘Coming out’on the spectrum: autism, identity and disclosure, Social & Cultural Geography, 11, 2, 155–70.

Davis, J. (1998) Understanding the meanings of children: a reflexive process, Children & Society, 12, 5, 325–35.

Davis, J. (2006) Disability, childhood studies and the construction of medical discourses: questioning attention deficit hyperactivity disorder: a theoretical perspective. In Lloyd, G., Stead, J. and Cohen, D. (eds) Critical New Perspectives on ADHD. New York: Routledge.

Davis, J., Watson, N., Corker, M. and Shakespeare, T. (2003) Reconstructing disability, childhood and social policy in the UK. In Hallett, C. and Prout, A. (eds) Hearing the Voices of Children: Social Pol- icy for a New Century. London: RoutledgeFalmer.

Gernsbacher, M., Dawson, M. and Hill Goldsmith, H. (2005) Three reasons not to believe in an autism epidemic, Current Directions in Psychological Science, 14, 2, 55–8.

Giddens, A. (1991) Modernity and Self-identity. Cambridge: Polity. Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. Englewood, Cliffs: Prentice- Hall.

Goode, J. (2007) Managing disability: early experiences of university students with disabilities, Disability & Society, 22, 1, 35–48.

Ho, A. (2004) To be labelled, or not to be labelled: that is the question, British Journal of Learning, Dis- abilities, 32, 1, 86–92.

Hodge, N. (2005) Reflections on diagnosing autism spectrum disorders, Disability & Society, 20, 3, 345–9.

Humphrey, N. and Lewis, S. (2008) ‘Make me normal’: the views and experiences of pupils on the autis- tic spectrum in mainstream secondary schools, Autism, 12, 1, 23–46.

Huws, J.C. and Jones, R.S.P. (2008) Diagnosis, disclosure, and having autism: an interpretative phenome- nological analysis of the perceptions of young people with autism, Journal of Intellectual & Develop- mental Disability, 33, 2, 99–107.

McDonald, C. (2008) The importance of identity in policy: the case for and of children, Children & Soci- ety, 23, 4, 241–51.

Matson, J.L. and Kozlowski, A.M. (2011) The increasing prevalence of autism spectrum disorders, Research in Autism Spectrum Disorders, 5, 1, 418–25.

Mayall, B. (2002) Towards a Sociology for Childhood: Thinking from Children’s Lives. Buckingham: Open University Press.

Mogensen, L. (2011) ‘I want to be me’: learning from teenagers diagnosed with autism using collabora- tive, participatory research. PhD thesis. Social Justice and Social Change Research Centre, School of Social Sciences, Sydney: University of Western Sydney.

268 Lise Mogensen and Jan Mason

Morris, J. (2001) Impairment and disability: constructing an ethics of care that promotes human rights, Hypatia, 16, 4, 1–16.

Nadesan, M. (2005) Constructing Autism: Unraveling the ‘Truth’ and Understanding the Social. London: Routledge.

Oliver, M. (1990) The Politics of Disablement. Basingstoke: Macmillan. Oliver, M. (1996) Defining impairment and disability: issues at stake. In Barnes, C. and Mercer, G. (eds) Disability: Exploring the Divide. Leeds: Disability Press.

Prout, A. (2002) Researching children as social actors: an introduction to the Children 5–16 programme, Children & Society, 16, 1, 67–76.

Prout, A. and James, A. (1990) A new paradigm for the sociology of childhood? Provenance, promise and problems. In James, A. and Prout, A. (eds) Constructing and Reconstructing Childhood: Contem- porary Issues in the Sociological Study of Childhood. London: Falmer Press.

Richards, L. (2005) Handling Qualitative Data: A Practical Guide. London: Sage. Shakespeare, T. (1996) Disability, identity and difference. In Barnes, C. and Mercer, G. (eds) Disability: Exploring the Divide. Leeds: Disability Press.

Thomas, C. (1999) Female Forms: Experiencing and Understanding Disability. Buckingham: Open Uni- versity Press.

United Nations (1989) Convention on the rights of the child. Available at http://www.ohchr.org/en/profes- sionalinterest/pages/crc.aspx (accessed 14 November 2014).

The meaning of ASD for teenagers negotiating identity 269

http://www.ohchr.org/en/professionalinterest/pages/crc.aspx