“We are different, that’s a fact, but they treat us like we’re different-er”: understandings of autism and adolescent identity development

Sue Mesa (School of Science, Technology and Health, York St John University, York, UK)
Lorna G. Hamilton (School of Education, Language and Psychology, York St John University, York, UK)

Advances in Autism

ISSN: 2056-3868

Article publication date: 17 August 2021

Issue publication date: 2 June 2022

694

Abstract

Purpose

A key development in early adolescence is the active construction of individual identity; for autistic young people, integrating the idea of “being autistic” forms part of this process. The purpose of this paper is to explore identity development from a contextualist perspective, foregrounding young people’s experiences within mainstream educational settings.

Design/methodology/approach

A longitudinal, qualitative methodology was used: semi-structured interviews were conducted annually with 14 autistic young people, their parents and teachers between school years 6 and 9.

Findings

Young people felt different from their neurotypical peers and their acceptance of their diagnosis changed over time as they managed their developing personal and public identities. In pursuit of being treated “normally,” many camouflaged their differences at school, which sometimes involved opting out of school-based support. Adults described their own understandings of autism and discussed the responses of others in the school environment to autistic differences.

Originality/value

The influence of sociocultural discourses of autism on young people’s identity development is discussed and implications for both school based and post-diagnostic support for young people and their families explored.

Keywords

Citation

Mesa, S. and Hamilton, L.G. (2022), "“We are different, that’s a fact, but they treat us like we’re different-er”: understandings of autism and adolescent identity development", Advances in Autism, Vol. 8 No. 3, pp. 217-231. https://doi.org/10.1108/AIA-12-2020-0071

Publisher

:

Emerald Publishing Limited

Copyright © 2021, Emerald Publishing Limited


Introduction

Young people go through major biological, psychological and contextual changes in early adolescence, including puberty and the transition from primary to secondary education (Simmons and Blyth, 1987). The move into a larger, more complex school environment coincides with a key developmental period for identity construction, and typically an increased focus on the peer group over the family (Erikson, 1963; Kroger, 2004). For autistic young people, this developmental period may present challenges, as the social complexities of adolescence interact with the strengths and difficulties associated with autism (Humphrey and Lewis, 2008). For many, social communication and daily living skills develop markedly during this period (McGovern and Sigman, 2005; Smith et al, 2012). However, research also indicates a heightened prevalence of mental health difficulties and poor quality of life in comparison with the general population (Cottenceau et al., 2012; Hebron and Humphrey, 2014; Simonoff et al., 2012). Further, in the UK context up to one in five autistic young people has been excluded from mainstream school on at least one occasion (Moore, 2016). During adolescence, increased awareness of difference and of the stigma attached to autism may contribute to negative outcomes for autistic young people (Humphrey and Lewis, 2008). The current study examines understandings of autism among autistic young people, their parents and teachers, as they relate to identity construction and school experiences through the early years of mainstream secondary education.

A central concern of adolescence is the establishment of an individual identity; at the same time young people typically seek to fit in with recognised social and cultural groups (Blakemore and Mills, 2014; Kroger, 2004). The differences in social interaction characteristic of autism can lead to an assumption that identity is not a central concern and/or may be poorly developed. However, qualitative work indicates that autistic young people engage in identity construction within social contexts, positioning themselves in relation to cultural norms and expectations (Baines, 2012; Ringland et al., 2016). In an interview study, while autistic adolescent boys often found self-description difficult, some described themselves in terms of core characteristics associated with autism (Cridland et al., 2015a). In a participatory study, autistic teenagers articulated the complex ways in which their diagnosis shaped both personal and public identity (Morgeson and Mason, 2015). It appears, therefore, that identity construction is a concern for many autistic young people and that negotiating the idea of “being autistic” is an important part of this developmental process. Importantly, the ways in which others within the social environment orient to autistic individuals impacts identity negotiation (Bottema-Beutel and Smith, 2013; Ochs et al., 2001).

Discourses of autism prevalent in the sociocultural contexts in which young people grow up are likely to influence identity construction (Brownlow, 2010). Within the medical model, autism is primarily conceptualised in terms of deficit with a focus on amelioration towards normative standards (O’Neil, 2008 for a critique). The neurodiversity movement instead frames autism as integral to individual identity, highlighting the role of person-environment fit in the presentation of neurodevelopmental conditions (Baker, 2011). Both discourses are evident in the way young people talk about themselves (Humphrey and Lewis, 2008). Many autistic and non-autistic people appear to adopt a hybrid “deficit-as-difference” conception of autism (Kapp et al., 2013). The terminology used to describe autism has seen a shift in recent years away from “person-first language” (e.g. person with autism) towards “identity-first” language (e.g. autistic person). Identity first language was indicated in a large-scale UK survey to be preferred by a majority of the autistic community (Kenny et al., 2016). For autistic young people, then, identity construction involves navigating multiple, often competing, discourses of autism.

Diagnosis of autism in the absence of intellectual disability is often not made until late childhood or beyond in the UK (Crane et al., 2015); individual responses to diagnosis are complex and likely to evolve over time. For young people and their families, diagnosis has several advantages, including access to support and increased understanding of difference from others. However, it can also lead to stigma and discrimination and can be perceived as being of limited utility due to the heterogeneous presentation of autism (Calzada et al., 2012). Asked to explain what autism meant to them, older autistic adolescents often framed the diagnosis as difficult to accept initially, with differing degrees of acceptance over time (Huws and Jones, 2008). The authors conclude that “whether being told that they had autism was perceived as a positive or negative event, it would appear that all participants had to some degree, reworked their identity” (Huws and Jones, 2008, p. 105). Some young people resist autism as a public identity, reluctant for their diagnosis to affect the way others perceive them, while accepting it as fundamental to personal identity (Morgeson and Mason, 2015). The decision as to whether, when and how to disclose diagnosis can, therefore, be complex; autism, once publicly disclosed, can be a “totalising” social identity, dominating other individual narratives (Gilling, 2012). However, autistic communities – often in online spaces – increasingly offer young people the opportunity to embrace autism as a positive collective identity (Bagatell, 2007; Brownlow, 2010; Ringland et al., 2016).

Young people’s experiences at school shape identity development (Gilling, 2012; Humphrey and Lewis, 2008). In retrospective interviews, autistic young adults and their parents tended to describe the transition from childhood to adolescence as a stressful time, marked by ostracisation and bullying, as social demands increase within the school context (Portway and Johnson, 2003). A desire to avoid negative responses from others can lead young people to mask behaviours that could mark them out as autistic, a phenomenon known as “social camouflaging” that is associated with identity confusion and mental health difficulties (Cage and Troxwell-Whitman, 2019; Cage et al., 2018; Hull et al., 2021; Mandy, 2019). Increased understanding of autism in wider school communities is likely to reduce negative experiences for autistic pupils; however, access to specialist training for school staff is variable (Roberts and Simpson, 2016).

Studying the ways in which autistic young people understand their diagnosis and negotiate identity can inform understanding of mental health and wellbeing in this population. However, relatively few developmental studies of autism directly include the perspectives of autistic young people themselves (Rasmussen and Pagsberg, 2019). There is increasing acknowledgement in autism research of the need for qualitative studies that foreground the experiences of individuals (Bolte, 2014). The current study aimed to address the following research questions by triangulating interview data from young people, their parents and teachers:

RQ1.

How do autistic young people and others in their social environments understand autism?

RQ2.

How do these understandings relate to young people’s identity development in early adolescence?

RQ3.

How do these understandings relate to young people’s school experiences in mainstream settings?

Method

Ethical approval was granted from the School of Education, Language and Psychology Research Ethics Committee at York St John University (Approval Code: RECPSY00019).

Participants

The data reported here are drawn from an on-going multi-informant longitudinal study investigating the school experiences of 14 autistic young people, between Year 6 (ages 10–11) and Year 9 (ages 13–14) in various mainstream educational settings in a city in the north of England. All families identified themselves as White British and socio-economic status using the National Statistics Socio-economic Classification categories, (ONS, 2020) ranged from L3 higher professional occupations to L14.2 long-term unemployed. Families were recruited in three cohorts, via a specialist autism teaching team at the local council. Inclusion criteria were:

  • young person had a diagnosis of autism/Asperger’s Syndrome; and

  • was in a mainstream educational setting and about to transition (or had very recently transitioned) to secondary school.

Parents provided informed consent for their own and their child’s participation. Information on the study was also provided in age-appropriate written form and young people gave verbal assent to participate; one young person did not wish to take part in interviews at any time point. Parents and young people jointly identified a teacher who had worked closely with the young person in that academic year. The teacher provided their own consent.

In total, we conducted 36 interviews with 13 children, 36 interviews with 31 teachers and 38 interviews with 14 mothers and 2 fathers. Most families joined the study when their child was in Year 6; four joined shortly after transition to secondary school in Year 7. Table 1 summarises the demographic characteristics.

Data collection procedures

Semi-structured interviews were conducted with young people, their parent(s) and teachers, at annual intervals. Semi-structured interviews offer the flexibility to focus on the specific issues and experiences that are meaningful to individuals, within an overarching schedule informed by the research aims (Smith, 1995). In planning the interviews, we were guided by the recommendations set out by Cridland et al. (2015b) for conducting qualitative research with autistic individuals and their families. For example, we prepared clear interview guides that were differentiated by participant (young person, parent, teacher) and school year group, focussing on key domains of daily lives at school (e.g. classroom learning, peer interactions, physical school environment). Young people were given the option of participating in interviews with or without a familiar adult present, to mitigate the unfamiliarity of the situation. Young people and parents were interviewed in the family home, school setting or university according to preference; all teachers were interviewed in the school setting. Interviews were conducted by researchers with experience of working with autistic young people (Cridland et al., 2015b).

In interviews with young people, we took care to phrase questions in an age-appropriate manner, avoiding non-literal language. The mean interview time for young people was 23 min, for teachers, 19 min and parents, 34 min. Interviews were audio-recorded and transcribed verbatim using standard orthographic transcription by research assistants. All identifying information was redacted from interview transcripts.

Data analytic approach

We analysed the data using inductive thematic analysis with the aim of giving an account of the individual experiences of the young people and the meaning that they, their parents and teachers attach to those experiences. We adopted a contextualist analytic approach, foregrounding the impact of the social contexts in which the young people live – specifically family homes, school environments and broader sociocultural context – on these experiences and understandings (Braun and Clarke, 2013; Tebes, 2005). Contextualism takes a middle ground between strong essentialist and constructionist epistemological positions. It acknowledges that, while individual experience is inevitably subject to interpretation and, therefore, not an objective “reality”, it nonetheless appears “real” to the individual (Willig, 2008).

We adopted the protocol for conducting thematic analysis set out by Braun and Clarke (2006). Both authors listened to audio recordings of interviews repeatedly, and iteratively read accompanying transcripts, taking note of ideas and comparing notes regularly. We generated initial codes systematically across the full data set, reviewing each other’s coding and resolving disagreements through discussion. At this stage, we extracted those sections of the full data set containing codes that were relevant to the research questions for the current study. We then began the process of collating codes that were identical or closely related from across the reduced data set into initial themes, using a thematic map to visualise the analysis.

We identified provisional sub-themes that were supported by a limited amount of data and either discarded them, or integrated with other, related themes. When refining the themes, we re-read the interview data, to identify disconfirming cases and ensure that the thematic structure adequately reflected the whole data set. We named the themes and sub-themes, developed working definitions of their meaning and analysed the data assigned to each theme in further depth, integrating insights from existing research literature to our analysis. At the final stage, we identified excerpts from the data to illustrate the thematic structure of our analysis.

Analysis

An overview of the thematic structure is presented in Figure 1. Throughout the analysis, pseudonyms are used (Table 1) and the time point at which the interview was conducted is indicated in brackets (e.g. Y6 = Year 6).

Theme 1: Identifying with autism

1a: Negotiating difference

Almost all participants identified feeling different. For some, an autism diagnosis had been exonerating in explaining the basis of their perceived difference and they had positively integrated the idea of “being autistic” into their personal identity. Jenny (Y6) said “everything sort of like clicked”, explaining further:

I’d rather be different and have a reason for it, than not be different. I’d rather be different and have a label for it, because a lot of people say labels are a bad thing.[…] I like being labelled autistic, I don’t know why […] Because it’s the reason why I am who I am. (Jenny, Y6)

In describing their experiences of difference, some young people drew on an autistic group identity. Lee (Y7) used the phrases “the autism people” and “people like me”. Identification with other autistic young people helped them make sense of their difference favourably, at least to some extent:

Well me and my friend [name], we’re quite different [from others]. We don’t really like storybooks; we prefer fact books and statistics. And we’re really similar and we almost feel as if we’re outcasts, but we also feel really good because we’re different and I like that. (Richard, Y6)

Some young people publicly identified as autistic, talking openly about their differences. Justin’s parent (Y6) said, “he owns it” and that he had recently introduced himself with “my name is Justin, I’m ten and I’m autistic”. Gerry’s teacher (Y6) described how he had delivered a training session about autism to his peers at primary school and he had “felt very proud of it as he was telling them about how he is”. Conversely, others perceived difference negatively:

I think he’s just struggling with the idea of having Asperger’s as well. […] He spoke to me for a long time last night saying how different he feels […] He said to me I wish you had not told me. (Tim’s parent, Y7)

Likewise, Jonathan’s parent (Y6) described him wanting to “be like anybody else, he doesn't want the label”. This was described further:

We have to call it the ‘A’ […] You cannot mention the word autism at all times, or he’ll just start shouting and kicking off”. (Jonathan’s parent, Y6)

Despite differing responses to diagnosis, a commonality was the desire to be treated as “mainstream”, like everyone else. Jenny (Y6) said, “I want to be treated like normal. I don’t want to be treated like there is something, like I have Asperger’s”.

Several young people had declined support at school, including additional transition visits, use of identified inclusion spaces, and teaching assistant support, sometimes with acknowledgement that it would have been helpful. David’s parent (Y7) said he had told his teaching assistant to “go away”, because he felt support identified him as being different and “made him look weak”. Archie (Y7) felt that accepting support would “probably ruin my already practically non-existent social standing even further”. Parents and teachers reported further examples of young people’s reluctance to accept support:

There was an option for him to have a locker within the [specialised autism] unit and he chose to have that and very quickly decided he didn’t want to. He didn’t want to be different. (Tim’s parent, Y7)

I see this with a number of young people I work with, where they recognise their own differences and they don’t want to look any different. And they are a really tricky group of young people to work with, because any strategies you try to put in place to support them, they perceive as making themselves look different so they are unwilling to engage. (Simon’s Specialist Autism Teacher, Y8)

1b: Changing understandings over time

The meanings young people attached to the diagnostic label changed over time. Some were described as having sudden points of realisation; others showed increasing or decreasing acceptance of “being autistic” with age. Jonathan’s parent (Y6) reported that he was initially accepting of the diagnosis but has since “realised” and had become “embarrassed”. Likewise, his teacher identified a change when they started planning for secondary school transition:

Understanding autism, that’s the thing that, Year 6 it’s suddenly hit him. He has had quite out-of-the-blue meltdowns, crying proper tears […] which we’ve never seen before […] He’s expressed he doesn’t understand why he got this, why he has caught this and we’ve explained that he hasn’t caught anything […] everybody is special and unique and you too. So we’ve had to read books about famous people who are autistic who’ve actually made great things of their lives […].I think it has just dawned on him now that this is not going away, I’ve got this forever' (Jonathan’s teacher, Y6).

In Y7, Jonathan had been uncomfortable being referred to as “autistic”, but when asked about his diagnosis in Y8 said “Yeah, I’m getting there […] I’m 50%”.

Conversely, Jenny had shared her diagnosis in Y7 but felt she had consequently been treated differently, and in Y9 she reported she had made a new friendship group, from whom she had chosen to keep her diagnosis hidden.

Adults tried to support acceptance of diagnosis by presenting autism as an inherent part of the person, or by framing difference in a constructive way. Jonathan's parent (Y7) said she kept reiterating to him that autism is “who you are. That’s just your personality”. Simon’s teacher used the analogy of different operating systems attributed to neurodiversity advocate, Steve Silberman (2016):

I explain that it’s just like two different brains, one is like a Microsoft computer and one is an Apple computer, and you all get the same outcomes but it’s just that you think differently. (Simon’s teacher, Y7)

Justin's parent (Y6) reflected that acceptance and understanding of autism was a family project. As a family, they had bought books and been to talks as “it affects us all' and “it’s sort of like a learning curve for all of us”.

1c: Social camouflaging at school

Many young people, even those who construed their diagnosis positively, were keen to keep it private. Parents reported that their child would “act” at school to convince others that they were “like everybody else”. They also described the impact of camouflaging at school on emotional wellbeing and behaviour. Justin's parent (Y6) said “because he has held it together all day at school, when he is home, he is a total wreck”. Other parents also described distressed behaviour:

He is storing it up and he is controlling himself and managing himself and by the time he gets home his self-management is lost and the smallest thing, you know if that fell on the floor, that would be enough for a flying rage, (Alistair's parent, Y6)

He acts fine, so he goes under the radar a lot, so they actually find him ‘normal’ to a degree and then he comes home, and everything basically erupts.” (Jonathan’s parent Y8).

Some teachers were aware that there were differences in how young people presented at school and home but, in contrast to parents, did not identify the school environment as a stressor:

From my experience I’ve got several students at school who present really well at school, and then they go home and it’s absolutely chaotic […]. You know, it could be the stress that we’re minimising, that kind of all floods out. (Simon’s teacher Y7).

In Y8, following exclusion from school, Simon’s teacher expressed surprise that suddenly things “seemed to go pear-shaped” as staff had thought he was managing well and had planned to reduce support. However, during the previous year Simon’s parent (Y7) had described him being “really reclusive […][he] just locks himself away in his bedroom” after school. Simon’s case illustrates how social camouflaging can contribute to poor wellbeing and educational outcomes for young people; staff in Simon’s school environment were unaware of the challenges he was experiencing in Y7 and reported that his transition from primary school had gone “really well”. By Y8 Simon had moved to a specialist educational setting after several exclusions from his mainstream school.

Many young people preferred to keep home and school clearly separated. Young people could “be themselves” at home, but homework blurred the home/school boundary. Richard (Y7) said “I think maybe we should add 20 minutes to school or something instead […] It makes me feel angry […] It makes me feel like I’m at school. I think when you're at home it should mean you're at home.” Bertie’s parent (Y9) reported that he would “have a 25-minute meltdown over a 15-minute piece of homework.”

Some children extended this self-imposed boundary to friendships. Evan’s parent (Y7) said, “I mentioned to him about if there is anyone he’d like to invite round and he said he would not want to do that, that this was a different place and a different environment, that he would not want to mix them”. They had understood this in the context of Evan being “secretive” about his special interests and his desire to keep precious possessions hidden, as “he doesn’t want [peers] to see all that and know all that about him”. Taken together, these accounts suggest that young people often experience the home environment as a sanctuary, where the ‘mask’ worn at school, under social pressure to ‘fit in’, can be dropped.

Theme 2: Social construction of autism

2a: The autism label

Parents talked about autism as a “label” which provided a route to support, but was perceived negatively by others, leading to adverse consequences for young people. For some, this had made the decision to seek diagnosis difficult:

We had reservations about going through the process of diagnosis. Yes, I know that […] he can access services and things and if people understand then they can make accommodations for him, but there are negative things that come with a diagnosis as well. It’s a label and you know[…]. is he going to be treated differently because of that? Evan’s parent (Y6)

Neurotypical peers were described as viewing autism unfavourably. Sometimes awareness of the diagnosis, or that the young person accessed support, resulted in bullying. Richard (Y7) said “the autism people at [secondary school] are a bit targets to bullies,” and Bertie (Y8) said “They call me [autism unit name]. Sometimes they say get back to the [autism unit] and I just don’t really like it.” Jonathan reported bullying had intensified in Y9, and he felt it happened because people saw him as “freaky and they are just the type of people that hate different.”

Parents had concerns about whether the diagnostic label negatively influenced teacher assessment of academic ability. Related to her school record Jenny’s parent (Y7) said, “I hope it doesn’t say autistic or Asperger’s and they’ve just immediately blackmarked her.” A teaching assistant for Richard (Y8) reported that they had to advocate for him to be moved up an academic set, as he had been placed in an insufficiently challenging class, which they attributed to his diagnosis. Jenny (Y9) said that some teachers had lower expectations of her compared to her peers. She explained further:

Jenny: “They treat me like a cute cat […] They treat us like we’re not human, like we’re less, I don’t know how to put it really”.

Researcher: “That they treat you differently to other children?”

Jenny: “Yeah like […] we are different, that’s a fact, but they treat us like we’re different-er. Like we’re more different to other people than we actually are”.

Some parents and teachers reported being mindful that the provision of support could have adverse consequences for inclusion. Jonathan’s teacher (Y7), referring to small group teaching, said, “they almost become defined by it.” Bertie’s parent (Y7) reported school staff had tried to reduce his use of ear defenders so that he stood out less. Likewise, Gerry’s teacher (Y6) said, “If he’s got someone with him and if he’s got toys, I think he’ll get picked on. It’s the nature of children, isn’t it?”

Parents’ concern about the impact of labelling influenced their choices about their child's education more broadly. Jonathan’s parent (Y7) when discussing the option of a school that offered autism enhanced provision said that they “wouldn’t dream of putting him there,” as they did not want him to be treated differently. Similarly, Evan’s parents (Y6) declined a residential school trip as it “might kind of expose his differences.”

Adults often constructed autism hierarchically based on perceived severity, contrasting 'extreme autism’ with Asperger's Syndrome, which was referred to as “mild”. Evan’s parent (Y6) reflected that Evan, who had a diagnosis of Asperger’s Syndrome, would have been considered just “a bit of a geek” in previous generations. Several parents highlighted their child was “not as autistic” as others: “She’s not on the major spectrum[…] She’s on the lower spectrum.” (Jenny’s parent, Y8). In contrast, neurotypical children were often referred to as “normal”.

2b: Individuality and sameness in autism

Autism was presented as highly variable, but participants also anticipated there would be a degree of commonality among autistic young people, with some referred to as “typically autistic”. In developing their own understanding of autism, some parents tried to distinguish behaviour that was “typically autistic”:

It is difficult to know what is autism and what is him just being an eleven-year-old boy. (Simon’s parent, Y6)

Where a young person did not present as “typically autistic”, there were expressions of doubt about the validity of the diagnosis. David’s parent (Y7) reported that teachers did not believe he was autistic, which prevented access to a timely diagnostic assessment. Correspondingly, following Simon’s exclusion from school in Y8, his teacher reflected that “he didn’t display at all as being autistic. He seemed very sociable, mixed with his friends […] and I was saying 'are we sure he is autistic?’

Despite the variability in presentation, several teachers felt autism as a category was “so well defined,” which facilitated identification of support strategies. However, the need for teachers to see autistic young people as individuals was stressed by parents and specialist teachers:

They said oh there’s another autistic child in the class, we’re used to autism, but every autistic child is unique, and they never got his uniqueness. (David’s parent, Y7)

It would be nice to put it in a little box and say right this is how this child with autism presents but it’s never like that […] 'Oh yeah we’ve had an autistic child before its fine'. You think, you’ve not had that one, it’s not the same, you know you would never say that about a neurotypical child. (Simon’s Specialist Autism Teacher, Y8)

Parents discussed the potential benefits of autistic young people interacting with each other at school because they would be similar:

I think it will also be nice for him to be around other children which are autistic, because at the moment he’s the only one […] He’s not used to being around other people like him. (Gerry’s parent Y6)

Discussion

This study examined understandings of autism among autistic young people, their parents and teachers, related to identity construction and school experiences. For the young people in this study, understanding what “being autistic” meant and their acceptance of it, changed and unfolded in the broader context of their early adolescent development as they “grew up” with the diagnosis (Hurlbutt and Chalmers, 2002; Huws and Jones, 2015). The extent to which “autism” was integrated into their developing identities was mediated by the responses of others in their social environments (Bagatell, 2007; Humphrey and Lewis, 2008).

In describing themselves, young people used terminology aligned with prevalent socio-cultural discourses of autism – both medical and neurodiversity models – often in overlapping ways (Humphrey and Lewis, 2008; Kapp et al., 2013). The idea of “normality” was used as a benchmark from which young people described themselves as deviating. Difference was conceptualised negatively by many, a finding consistent with other studies of autism (Hebron and Humphrey, 2014; Humphrey and Lewis, 2008) but also characteristic of the desire to fit in associated with early adolescent development more broadly (Blakemore and Mills, 2014). “Normal” and “different” were largely presented as binary categories, with both autistic and neurotypical people characterised as homogenous groups. In this sense, autism was sometimes understood as a “totalising identity” (Gilling, 2012), with limited appreciation of the multiple layers of difference and similarity between individuals.

Autism was similarly a “totalising identity” for teachers, who assumed that autistic young people would be a relatively homogenous group with similar support needs and sometimes doubted the validity of the diagnosis if the person did not present as expected. Contrastingly, parents and specialist teachers identified the need for teachers to see each young person’s individuality (see also Larcombe et al., 2019) This discrepancy suggests that some teachers lack understanding of the heterogenous nature of autism and have limited expertise to offer individualised support (Larcombe et al., 2019; Van Herwegen et al., 2019). In the absence of sufficient knowledge, they sometimes draw upon societal stereotypes about how autistic people behave (Humphrey and Lewis, 2008).

Participants described teachers as sometimes underestimating young people’s abilities and typically developing peers as responding to the autism label in more overtly negative ways (Baines, 2012; Morgeson and Mason, 2015). Congruent with other studies several had experienced bullying (Hebron and Humphrey, 2014; Humphrey and Lewis, 2008). Research suggests bullying is associated with limited understanding of autism (Larcombe et al., 2019; Symes and Humphrey, 2012), an example of the “double empathy problem” (Milton, 2012).

Several young people, engaged in social camouflaging to avoid “appearing autistic” at school (Huws and Jones, 2015; Morgeson and Mason, 2015). Research suggests that social camouflaging is a response to stigma and is used to avoid bullying and discrimination, but is costly to mental health (Hull et al., 2017; Cage and Troxwell-Whitman, 2019; Hull et al., 2021). Consistent with this, parents in this study, described how social camouflaging took a toll on young people’s mental health, and it is notable that a third of the young people were excluded from school following behavioural misdemeanours and/or referred to mental health services. Keen et al. (2016) identified that mental health difficulties in autistic young people are associated with poorer educational outcomes. These findings, therefore, underline the importance of increased awareness of social camouflaging in school as part of efforts to increase positive educational outcomes (Mandy, 2019) and improve mental health.

Cooper et al. (2017) suggest that opportunities to experience group belonging and develop a positive social identity may offer protection against mental health difficulties. Parents in this study discussed the perceived benefits of autistic young people interacting in school, to develop a group identity and some young people positively discussed their shared difference with autistic friends. Stevenson et al. (2016) found that facilitating opportunities for autistic young people in a special school, to reflect on their diagnosis together, helped develop understanding of autism as a difference to be accepted, which “thickened” their identity. However, our study raises the question of whether such peer support mechanisms could be facilitated in mainstream settings, where young people may be reluctant to engage with activities that makes their difference visible.

Parents and teachers in this study, also seem to be negotiating the competing socio-cultural discourses of autism (Baron-Cohen, 2019; Kapp et al., 2013). They positioned “difference” positively, but like young people, also used language that indirectly, and likely unintentionally, communicated negative conceptualisations of autism. For example, when parents refer to neurotypical children as “normal”, the young person might infer that they are “abnormal”. Similarly, when parents express concern that engaging in extracurricular school activities or accessing specialist support may expose their child’s “difference”, this may inadvertently suggest that difference is better hidden. Several parents also described autism hierarchically, positioning their child on a scale as “not as autistic as others”. While the intentionmay be to support children to perceive their diagnosis more favourably, it could reinforce the idea that being “more” autistic is undesirable.

Many of these examples can be understood as parents seeking to protect their child. However, it is possible that the conflicted messages result in unintentional pressure for young people to “act normally” and camouflage their difference (Bagatell, 2007). Parents are similarly subject to and part of a neurotypically dominated social world, in which negative characteristics associated with autism are foregrounded and positive attributes hidden (Brownlow, 2010). Post-diagnostic support in the UK has been identified by families and professionals as inadequate (Crane et al, 2016; Crane et al, 2018; Rogers et al., 2016), which leaves parents limited opportunity to explore the diagnosis, its impact on their family and ways to talk about difference. Perhaps then, opportunities for young people to reflect on their diagnosis should extend to parents too.

There were examples of teacher interventions that could also encourage social camouflaging. Attempts to limit the use of successful supports such as ear defenders and fiddle toys to reduce the visibility of difference, indirectly communicates that difference is undesirable. While these interventions aim to safeguard young people from difficulties with neurotypical peers, the focus on changing the behaviour or appearance of the autistic person to help them “fit in”, originates from a deficit-orientated perspective (Brownlow, 2010).

An alternative approach would be grounded in the social model of disability (Oliver, 1990), situating the “problem” with peer relationships within the wider social context. Interventions would focus on increasing understanding of autism and acceptance of diversity in the wider school community, which research indicates can promote more positive judgements (Sasson and Morrison, 2019). This may require a cultural shift for schools, which currently offer support mostly in the form of one-to-one classroom input. It would also require consideration of who facilitates whole-school interventions, given that demands on teachers are perennially high, they do not always know how to promote peer acceptance and inclusion (Lindsay et al., 2013) and autism training is not widely available (Roberts and Simpson, 2016).

Strengths of this study include its longitudinal design, which allows analysis of identity development and school experiences over time. The multi-informant data collection further enables consideration of young people’s perspectives in relation to those of important others in their social environment. Limitations include a low response rate to recruitment letters (∼10%) and consequent small sample, which included only one female adolescent. The school experiences discussed are specific to one local authority area in the north of England and should not be viewed as representative at a national level. However the analytic structure may be transferable to other studies. Finally, the data set included some missing interviews (Table 1) due to constraints on the time of participating families and teachers.

Conclusion

The current study enhances understanding of identity construction in young adolescents with autism and the influence of mainstream school experiences on this process. To promote positive identity development and wellbeing in autistic young people, two recommendations for further research and practice are made. School-based interventions could focus on the whole-school system to increase understanding of autism and acceptance of diversity, to promote a better person-environment fit for autistic young people. Extended post-diagnostic support for young people and families to include opportunities to reflect on the diagnosis with others and exploration of the best ways to talk about autism is also recommended.

Figures

Thematic map

Figure 1

Thematic map

Participant characteristics

CohortPseudonymGenderSchool years for which interview data availableAdditional informationParent/s interviewed
1 Simon M Y7, Y8 * Moved to a specialist education setting following school exclusions. Referred to mental health services Mother
1 Tim M Y7, Y8, Y9 Moved to a specialist education setting following school exclusions Mother
1 Bertie M Y7, Y8, Y9 Mother
2 Richard M Y6, Y7, Y8 * Family unavailable in Y8. Teacher unavailable in Y7, Y9 Mother
2 Jonathan M Y6, Y7, Y8, Y9 School exclusions. Referred to mental health services. Teacher unavailable in Y9 Mother
2 Gerry M Y6, Y7, Y8 * Mother
2 Jenny F Y6, Y7, Y8, Y9 Referred to mental health services. Teacher unavailable in Y9 Mother and Father
3 Evan M Y6, Y7, Y8 * Mother and Father
3 Justin M Y6, Y7, Y8 * Mother
3 Jacob M Y6, Y7, Y8 * Mother
3 Alistair M Y6, Y7, Y8 * Mother
3 Lee M Y6, Y7, Y8 * Mother
3 David M Y7, Y8 * School exclusions. Teacher unavailable Y8 Mother
3 Archie M Y7 * Mother
Note:
*

Data collection on-going

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Acknowledgements

The authors would like to thank all the participants, who have given their time and expertise generously to this project. Authors would also like to to thank the Autism Specialist Teaching Team for their support with recruitment, and Laura Cliff and Denise Brogden who supported the project as research assistants.

Corresponding author

Sue Mesa can be contacted at: s.mesa@yorksj.ac.uk

About the authors

Sue Mesa is based at School of Science, Technology and Health, York St John University, York, UK

Lorna G. Hamilton is based at School of Education, Language and Psychology, York St John University, York, UK

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