Sage Journals: Discover world-class research

Abstract

A substantial literature indicates that autistic children and young people are much more likely than their non-autistic peers to have difficult school experiences and poor educational outcomes. However, how autistic people describe and make sense of their school experiences has received less attention from researchers, especially in relation to primary school, the period of formal state education in the United Kingdom for children from the age of five to eleven years old. Furthermore, little is known about how early school experiences impact on the lives of autistic adults, particularly in terms of identity development. Using thematically analysed data collected from focus group and one-to-one interviews, this study aimed to contribute towards this gap in the literature by documenting the subjective accounts of six autistic young adults. The findings show that the participants’ primary school experiences were characterised by routine invalidations and hostilities from peers and school staff which led to anxiety about social acceptability. These early negative experiences had long lasting implications in terms of self-concept and general wellbeing. Recommendations for teacher training and education policy are discussed.

Lay Abstract

We know from previous research that lots of autistic children and young people have difficult school experiences. But we know less about what these experiences feel like for autistic people, especially in relation to the primary school years. We also know very little about what autistic adults remember about their primary school experiences and how such experiences affect their sense of identity. Our study aimed to address this gap in the research by asking a group of 6 autistic young adults about their experiences of mainstream primary school. We held a focus group discussion for 5 participants and 1 participant chose to be interviewed instead. They told us that they were regularly bullied by peers and teachers for being different. They also told us that the impact of these early negative experiences was still being felt in adulthood. These findings suggest that autistic children's school experiences may be improved by focusing on changing school cultures and attitudes to be more welcoming and accepting of autistic ways of being. We briefly discuss ways in teacher training and educational policy might play a role in this.

Keywords

Education services qualitative research school experience stigma identity autism

Introduction

The majority of identified autistic pupils in the state education system in England are educated in mainstream schools (DfE, 2023). However, many have difficult school experiences and poor educational outcomes. When compared with their non-autistic peers, autistic children and young people (hereafter, autistic CYP) are more likely to experience academic underachievement (Keen et al., 2016; Kim et al., 2018), school exclusion (Ambitious About Autism, 2022; DfE, 2022; Hatton, 2018), bullying (Maïano et al., 2015; Sterzing et al., 2012), and poor mental health (Lai et al., 2019).

These inequalities are long-standing and there has been much debate among researchers and other stakeholders about how to improve outcomes for autistic CYP (e.g., Dillon et al., 2014; McKinlay et al., 2022; Walsh & Hall, 2012; Warnock & Norwich, 2010). However, it is arguable that this debate has not fully included autistic people and has often failed to value autistic ways of being (Milton & Bracher, 2013), leading to what Waltz (2005) describes as “an official discourse about autism in which the words and views of those described are rarely heard”(p.421).

Historically, the discourse in autism and education research has also tended to ascribe the educational challenges experienced by autistic CYP in some way to their autism. For example, academic difficulties have been attributed to impaired cognitive processes (Mayes & Calhoun, 2007; Oswald et al., 2016), social difficulties to communication and interaction deficits (Chamberlain et al., 2007; Kasari et al., 2011), and psychological distress to differences in neurobiology and an inability to regulate emotions (Baron-Cohen et al., 2000; Cibralic et al., 2019). Such medicalised understandings of autism have in turn informed much of the narrative around the educational support for autistic CYP which has tended towards within-child interventionist approaches. These approaches have largely focussed on changing aspects of autistic children's social communication and interaction, and reducing behaviours perceived to be inappropriate (Bond et al., 2016; Watkins et al., 2019; Wong et al., 2015).

However, with the recent shift towards participatory approaches in autism research (Fletcher-Watson et al., 2019), there has been a welcome increase in the number of qualitative studies focusing on the subjective school experiences of autistic CYP. Such research has started to challenge some of these medicalised conceptualisations by revealing how the accepted norms of mainstream education can sometimes create unintentional but nevertheless significant barriers to learning and wellbeing. For example, autistic children have reported that the sensory demands of school can often be overwhelming (Birkett et al., 2022), that neuronormative teaching practices can overlook their communication and learning needs (Hummerstone & Parsons, 2021), and that accessing appropriate and timely support can be difficult and stressful (Goodall, 2018).

This growing body of qualitative research has also shed light on autistic children's experiences of school-based stigma and its effects on self-concept. Self-concept refers to the way we perceive ourselves and the beliefs we hold about who we are (Oyserman et al., 2012). These perceptions are formed in large part via our interactions with the people around us and play an important role in identity formation, self-esteem, and general wellbeing (Morf & Mischel, 2012). In a recent review of 33 qualitative studies on the experiences of autistic young people in mainstream secondary schools, Horgan et al. (2022) found that many participants reported feeling stigmatised by peers and staff because of differences related to their autism, with understandable negative effects on their sense of self. This has important implications for wellbeing since the development of a positive autistic identity is associated with improved social and psychological functioning (Cooper et al., 2017 , 2023). It is important to note that the development of a positive autistic identity also depends on CYP having access to timely diagnostic assessment or support for self-identification since this has been shown to provide a framework for self-understanding and acceptance (Crane et al., 2018; Oredipe et al., 2023).

However, while the increased research focus on the secondary school experiences of autistic people is encouraging and overdue, there remains a gap in our understanding of primary school experiences. This is significant to this study since middle childhood, the period typically associated with primary education, is thought to be a particularly sensitive period in terms of formation of self-concept (Harter, 2007). To this end, the present study aimed to explore the mainstream primary school experiences of a group of autistic young adults. In particular, this study was concerned with understanding how the participants viewed those experiences in hindsight, and how they described their primary school experiences in relation to their developing sense of self.

Method

Design

This study employed a focus group method since this approach offers participants a greater degree of control over the topics under investigation and allows for the discussion to move into areas deemed most meaningful to the participants (Howitt, 2019; Wilkinson, 2015). However, since there was a possibility that some participants may find a group discussion with unfamiliar people in an unfamiliar setting challenging and potentially stressful, the option of one-to-one semi-structured interviews was also offered.

Participants

After obtaining ethical approval, purposive sampling (Denzin & Lincoln, 2011) was employed to recruit six autistic young adults who had attended mainstream primary schools in England. The study was advertised on social media, with local autism support groups, and university networks. To establish an element of diagnostic homogeneity in the sample, participants were required to have received a clinical diagnosis of autism in childhood or adolescence¹ to take part. However, given the significant barriers to timely autism assessment (Crane et al., 2016; Makino et al., 2021), the study welcomed those who had not received their diagnosis of autism in their primary school years. No proof of diagnosis was required as participants’ confirmation was considered sufficient. Pseudonymised demographic and descriptive information about the participants was collected in informal conversations with the first author prior to the main data collection, and is detailed in Table 1 below. Data on socioeconomic status and ethnicity were not recorded. The participants were not acquainted before the study.

Table 1.

Participant demographics - autistic adults (n = 6).

Pseudonym	Sex	Age at interview	Age at diagnosis	Level of formal SEN support in school	Occupation at time of discussion	Choice of interview method
Daniel	Male	19	7	Equivalent to EHCP ²	University Undergraduate	Focus group
Georgia	Female	19	15	None	FE College Student	Focus group
Holly	Female	22	18	None	University Undergraduate	Focus group
Callum	Male	19	13	None	University Undergraduate	Focus group
Katie	Female	25	15	Equivalent to EHCP	FE College Student	1–1 interview
Sophie	Female	21	16	None	University Undergraduate	Focus group

Participant demographics

Data collection

Focus groups and interview procedures

The first author moderated the focus group, supported by two research assistants who took field notes. The moderation process included obtaining consent, explaining the study, posing questions, and encouraging participation. One participant chose an individual interview conducted by the first author. Both sessions were audio-recorded, producing 2 h and 47 min of transcription.

Participant safety and wellbeing

While there were no plans to ask distressing questions, it was possible that a participant may have found discussing their school experiences difficult. To ensure their wellbeing, we took several precautions. During recruitment, we explained the project thoroughly and held informal conversations to identify stress-reducing adjustments. Participants also received a topic guide in advance and were encouraged to provide feedback. After data collection, we provided a debriefing sheet with support contacts and offered individual support from a clinical psychologist. We also followed up via email in the days following the focus groups and interviews to check on participants’ wellbeing.

Data analysis

After discussing the field notes taken by the research assistants in the focus group discussion, the first author thematically analysed the data according to the six-step process described by Braun and Clarke (2006, 2022). She began by familiarising herself with the data through multiple readings of the transcripts and listening to the recordings of the discussions. Using Nvivo 12 (QSR International Pty Ltd., 2018), she then engaged in line by line coding of the transcripts, focusing on semantic and latent meanings within the participant contributions. These initial codes were then grouped and used to identify patterns of convergence and divergence across the dataset. Finally, the grouped codes were used to construct themes which were then refined to represent common ideas or concepts present in the data (Braun & Clarke, 2022). Although the analysis was led by the first author, the second and third authors acted as ‘critical friends’ (Smith & McGannon, 2017) by providing feedback and opportunities for reflection throughput the analysis process. To ensure the quality of the study, we applied the validity criteria for qualitative research proposed by Yardley (2000) which focuses on 1) sensitivity to context, 2) commitment and rigour, 3) transparency and coherence, and 4) impact and importance. These four pillars guided each stage of the study and provided a framework for our reflexive practices.

Positionality and reflexivity statement

The study adopts a constructivist approach which recognises that knowledge production involves varying realities based on focus and representation (Ponterotto, 2005). This approach values the subjectivity of participants’ lived experiences and views meaning making as a collaborative process between researcher and participant (Clark, 1998).

Central to this collaborative process is the concept of reflexivity - a dynamic process in which researchers openly interrogate how their positionality has shaped their research (Hibbert et al., 2010). This was particularly important in this study since despite having considerable experience of working with autistic children and adults in clinical and research settings, all three researchers identified as non-autistic. In attempt to develop what Dahlberg and Dahlberg (2019) refer to as “heightened self-awareness” (p.4), the research team engaged in regular reflexive practice. The purpose of this was not to arrive at a consensus, but to inspect the reasons for our interpretations and to develop an increased sensitivity to potential misunderstandings relating to differences in how autistic and non-autistic people communicate, interact and perceive the world around them (Milton, 2012).

Community involvement statement

This study, part of the first author's PhD research, did not involve autistic co-researchers. However, she was supported throughout her PhD by autistic mentors Ann Memmott, Barney Angliss and Phillipa Smith. Their generous guidance and insight into autistic experiences and culture played a key role in developing the interpretations reported below.

Results

Four themes were constructed through the analysis process: 1) the undesirability of difference, 2) the various guises of bullying, 3) the emotional labour of ‘being good’, and 4) looking back.

Theme 1: the undesirability of difference

Although most of the participants did not receive their autism diagnoses until their adolescence, all reported feeling different from a very early age. This was largely remembered in negative terms with one participant describing their sensory responses and social interests within the context of being ‘not normal’:

I had, like, a…realising in year 1 that I was not normal. I would go to the school discos and I would cry because it was too loud and the lights were too bright (Holly)

Participants discussed how this sense of feeling ‘not normal’ may have been constructed in part through the negative evaluations they received from peers and school staff. Participants reported that their natural approaches to communicating, learning, and socialising were often misunderstood by others, and they all described situations in which their differences were perceived as wrong or ‘bad’ in some way by the people around them. Some participants suggested that they sometimes felt that the people around them became irritated with them and perhaps felt that they were intentionally trying to be difficult or disobedient:

I often did things which the teachers would think was bad behaviour, but it was just me misunderstanding what we were meant to be doing…[I was] always being told off for things which I didn’t understand were wrong (Georgia)

Much of the data in this theme relates to experiences in which the people around the participants perhaps lacked empathy or understanding of their needs. There is a sense that much of the participants’ early school lives were spent with people who had little appreciation for the ways in which autistic behaviour may differ from non-autistic behaviour. This may have been compounded by the fact that only one of the participants, Daniel, was formally identified as autistic during his primary school years. However, as expressed by Daniel below, even in situations when school staff were trying to be understanding and supportive, being treated differently tended to be experienced negatively, regardless of the intentions and motivations of the people involved:

I was always very aware there were people treating me differently and either for positive or negative, and I didn’t particularly like going through it really (Daniel)

In general, the feeling of being undesirably different seemed to be a defining characteristic of the participants’ school experiences to the extent where their earliest memories of primary school were of a place where they did not belong and were not necessarily welcome:

I was just so different from everyone else that not even the teachers really knew how to address me, and I just felt really…like I wasn't meant to be there at all (Sophie)

This theme highlights participants’ recollections of feeling different from a young age. Their sensory responses, communication styles, and social behaviours were frequently misunderstood by both peers and school staff leading to feelings of alienation during their early school years.

Theme 2: the various guises of bullying

For most participants, being perceived as different by others was intrinsically connected with experiences of bullying. Most participants could recall numerous instances of overt bullying such as name-calling or physical assaults:

…from kids it was mostly name-calling or…they'd hit me on the back with a stick or something…then run away. (Daniel)

However, much of the bullying reported related to more subtle forms of hostility. These tended to involve varying degrees of social exclusion and some participants’ reported feeling completely disregarded by their peers. In the case of Holly, her recollections of social exclusion carry with them a sense of being invisible or existing in a liminal space quite separate from their peers:

…being picked later for sports teams or just not having people to sit with at lunch…or kind of having difficulties like finding the right things to talk about that people would be interested in…or not being invited to birthday parties (Holly)

This idea of visibility extends paradoxically to the level of support that was available to the participants. Despite not necessarily being formally identified as autistic in primary school, several participants had access to accommodations to support their learning. However, instead of contributing to a greater sense of inclusion, the visibility of this support tended to magnify participants’ differences and increased their vulnerability to bullying to the extent where they would often avoid using the support available to them:

Sometimes I was allowed to leave [the class] and pace in the corridor but I often didn't do that cus…people would bully you then because of that. Or like, pick on you for leaving (Sophie)

I had a teaching assistant [mimicking peers] “oh yes, he's different. He's got a teaching assistant” and people would bully me because of that. (Daniel)

The participants reported not only bullying from their peers, but also from their teachers. All participants recounted experiences in which a teacher had expressed intense frustration or disapproval. There was a sense among the participants that they were not particularly liked by their teachers and, as expressed by Callum below, this was as confusing as it was hostile:

The main person that put me off in primary school was my year 5 teacher who used to bully me quite a lot… I don't know why she had such a problem with me but…she just seemed to have this real dislike for me and I don't know why (Callum)

In the case of Sophie, the hostility she experienced led to her feeling so afraid of her teacher that she would experience overwhelming anxiety which led to a reluctance to attend school:

My…teacher really bullied me really…um…and made me scared to go to school every day…it got to the point where like…every day…I was…literally shaking… (Sophie)

When invited to describe the kinds of teacher behaviour which constituted bullying, the participants recounted experiences that were distinctly different to treatment they had experienced from peers. Rather than behaving in obviously harmful or exclusionary ways, much of the participants’ recollections of teacher bullying centred on the implication that if they adopted more normative behaviours, life would be easier for them:

[I] remember a teacher…basically saying…the way that you’ll get bullied less if you act like a normal person…and the reason he said that was that I liked to just sit read a book erm, and not go play football (Daniel)

Daniel's recollection here also carries with it a hint of blame; the idea that he is in some way responsible for being bullied by his peers. This is also evident in Georgia's quote below in which she describes how her teacher claimed to be acting in her best interests by highlighting what she perceived as Georgia's selfishness:

[The teacher] told me that she was doing it for my own good. I was very clear I didn't want friends and she thought that made me, like, selfish, like ‘one day you’re going to regret you didn't make friends when you were younger’ (Georgia)

This theme highlights participants’ experiences of bullying which they associated with being different from their peers. Most participants experienced various forms of peer bullying, from overt abuse to more subtle forms of exclusion. However, all participants cited specific teachers whose hostility was instrumental in their othering.

Theme 3: the emotional labour of ‘being good’

Given the hostility experienced by the participants from peers and teachers, it is unsurprising that most participants reported feeling under significant pressure to behave in ways that could be seen as more ‘normal’. In the case of Daniel, this led to increased anxiety and feelings of self-consciousness:

I was always very nervous about trying to fit in potentially so like, making sure I didn't go do anything that would be not normal (Daniel)

Like Daniel, some participants’ attempts to be accepted by those around them involved considerable effort. Holly's account below offers insight into the effort she expended while trying to mask her differences in an attempt to be socially accepted:

I was always aware that I was different and so I always strived to be similar, which was obviously really hard as I’m not similar… I had to go to school knowing that I was not going to fit in that day and things were going to be hard and teachers were going to be hard…I was putting everything on, you know, and trying so hard to please everyone because to me, it did matter and I really did want to make friends (Holly)

One notable exception to this theme was expressed by Callum. He shared Holly's strong desire to make friends, but he wanted to do so on his own terms and thus rejected the pressure to conform. However, he acknowledged that this left him isolated which links with the notions of invisibility expressed by Holly earlier:

I did want friends, but I didn’t want to change for anyone…I mean…I’m not going to like…change myself and be like…fake just to make friends with people […] I just kind of [had] no interactions with the other kids, because I kind of acted like they weren't there and they acted like I wasn't there (Callum)

Nevertheless, all participants reported feeling often overwhelmed by the emotional labour involved in either blending in or coping with the fallout of non-conformity. Invariably, the effort expended in attempting to disguise their authentic identities or cope with others’ hostility led some participants to supress their emotional responses while in school and wait to release some of the tension in the safety of their homes. In the case of Sophie, this led to challenges and tensions in her relationship with her mother:

In school, I would bottle it up. And try and be good to kids and good to teachers. And that's probably why me and my mum never got on because I probably just exploded on her really. Like, just let rip (Sophie)

This idea of ‘trying to be good’ as expressed by Sophie appeared to be central to the participants’ experience of primary school. They wanted to have a good school experience and most worked hard to try to win the approval of others. However, they lived with a pervasive sense of somehow always failing to meet the required standard, despite their efforts. There was also a sense of frustration that their attempts to fit in were not matched by comparable efforts on the behalf of school and peers to include them or adjust to their needs:

I liked school, but school didn’t like me (Katie)

This theme highlights the pressure participants felt to conform to behavioural norms and the toll this took on their emotional wellbeing and family relationships. Despite their significant efforts to gain acceptance, they felt they consistently fell short of expectations and were frustrated by the seeming lack of effort on the behalf of peers and school staff to make accommodations or adjustments.

Theme 4: looking back

It was clear in the data that looking back on their primary years from the position of early adulthood had considerable significance for the participants. Many of the challenges they experienced had only been fully understood and articulated with the passing of time. For some participants, it was only now in early adulthood that they realised how difficult their primary school years had been:

I thought I was happy but I wasn’t really (Georgia)

For many participants, this growing realisation went hand in hand with discovering their autistic identity and developing a deeper understanding of what that meant to them. This included acquiring the necessary vocabulary and awareness of concepts to fully understand what had happened to them. For some, they felt that they had had to develop this awareness on their own because they had not received the necessary support in their younger years:

I think my change of awareness of how I was in primary school kind of comes from…learning. I knew it was difficult to make friends, but I didn’t kind of have a way of saying like “well, that could’ve been social anxiety.” There was no one to kind of help figure that out (Holly)

For some participants, looking back on their primary years and the lack of support they had experienced brought about strong emotions. The difficulties they had faced and the long-term impact those difficulties resulted in ongoing feelings of anger and resentment:

Looking back, like, it just makes me angry. I'm just, like, full of anger because if they’d just intervened a bit earlier, y'know…maybe I wouldn't have gone through all that mess (Sophie)

Several participants also noted that the challenges they experienced in adolescence and adulthood might have stemmed from their formative experiences at primary school. For some participants, the difficulties of primary school were still being felt in adulthood. In the case of Georgia, she attributes the mental health difficulties she experiences presently to her primary school experiences:

Erm…well, at the time it didn’t really seem like it was having an impact on me. I…I…was…I had a very stiff upper lip attitude and just got on with things and it seemed like I was having a happy childhood…but…it…kind of came bubbling up and I started getting really bad anxiety over the stupidest things, nowadays I can barely leave the house erm…and yeah…and really a lot of that is probably because…y'know…primary school (Georgia)

Looking back on their challenges also meant that the participants were well placed to comment on how improvements could be made to the education system. All agreed that more needed to be done to create more tolerant school cultures with more understanding of autism on the part of teachers and parents. Participants also commented on how they wished they had been able to be themselves more authentically during their primary school years. In the case of Callum, there is a suggestion that this would have involved the rejection of the notions of normality which were pervasive throughout the group's recollections of their early school experiences:

To some extent I still, kind of, wasn't really being myself the whole time and sometimes I would try to pretend to enjoy stuff when I didn't, just to try and kind of feel like I was doing something normal when in fact I was just lying to myself. So, I should have started being myself earlier (Callum)

This final theme outlines how participants’ difficult school experiences became clearer over time as their self-understanding grew. Some participants expressed anger about what had happened to them and attributed some of their ongoing challenges to their early school experiences. Participants emphasised the need for more tolerant school cultures and better understanding of autism from peers and supporting adults. Overall, participants expressed a desire for a more authentic childhood, free from pressures to conform to notions of normality.

Discussion

In this study, participants spoke clearly of how difficult primary school was for them. When invited to reflect on these difficulties, they spoke mainly of feeling disliked and othered by the children and adults around them. They spoke of feeling unwelcome at school and gave examples of situations where peers and teachers were openly disapproving or critical of them. In particular, the importance given in their primary schools to the appearance of ‘normality’ and the hostility they received whenever they strayed from accepted behavioural norms seemed to be central to their experiences of stress and difficulty.

These findings align with previous research suggesting that non-autistic people can view autistic people unfavourably, describing them as unlikeable and awkward (Sasson et al., 2017), as behaving in ways that “violate societal norms” (Huws & Jones, 2010, p. 336), and even as potentially dangerous (John et al., 2018). Our findings also connect with research indicating that autistic children experience lower reciprocity and acceptance compared to non-autistic peers (Chamberlain et al., 2007), leading to higher rates of peer rejection and social exclusion in school settings (Dean et al., 2017).

Due to the hostility they experienced, participants in the present study felt significant pressure to conform to ‘normal’ behaviour. Although research on autistic masking is still in its infancy (Cook et al., 2022), it is understood to involve conscious and unconscious strategies to adapt to non-autistic norms and expectations (Hull et al., 2017; Pearson & Rose, 2021). While these strategies have been shown in small-scale qualitative studies to be adaptive methods for avoiding potential social awkwardness and conflict for some autistic adults (Hull et al., 2017; Livingston et al., 2019), the costs of using such strategies can be significant. Masking has been associated with feelings of not belonging which, in turn, are associated with poor mental and physical health outcomes including exhaustion, poor sense of self, and suicidal behaviours in autistic adults (Bradley et al., 2021; Cassidy et al., 2020; Pelton et al., 2020).

In terms of the bullying reported by our participants, this is an aspect of autistic mainstream school experiences which is sadly well-documented in the literature (e.g., Humphrey & Hebron, 2015; Maïano et al., 2015; Rowley et al., 2012) and, as such, we had anticipated that participants may share experiences of bullying by peers. However, the discussions relating to bullying by teachers were unexpected and not widely reported elsewhere. This may be because school bullying is conceptualised in the literature and education policy as a uniquely child-to-child phenomenon. It is characterised as a form of repeated aggression on the part of someone who is socially or physically more powerful (Olweus, 1993) and more recent conceptualisations have included the intent to harm as part of the definition (Maïano et al., 2015; Schroeder et al., 2014).

While acknowledging the power differential between teachers and pupils, we would hope that the intent to harm is not commonplace among educators. Furthermore, some participants described the bullying they had experienced by teachers as potentially driven by misguided but nevertheless good intentions. As such, traditional definitions of childhood bullying do not fully capture the stigma inherent in the experiences of our participants. Therefore, it is arguable that the concept of microaggression found in the literature on discrimination in ethnic minority groups provides a more suitable theoretical lens for exploring the impact of our participants’ experiences.

Microaggressions, as defined by Sue et al. (2007), are subtle intentional or unintentional verbal, behavioural, or environmental hostilities based on social status, occurring at both individual and institutional levels. Sue explains that microinvalidation, a particular form of microaggression, is characterised by hostilities that “exclude, negate, or nullify the psychological thoughts, feelings, or experiential reality” (Sue et al., 2007, p. 274) of a person because of a particular characteristic. Microaggressions and invalidations by adults towards autistic children in schools is an under researched topic. To our knowledge, there is only one other published paper by Hodge et al. (2022) that examines this issue. Their study involved autistic adults and parents of autistic children, focusing on the impact of the casual, often unconscious, and unintended ways some teachers talk about autistic children. They too found that existing conceptualisations of childhood bullying did not fully capture the “unbridled ferocity and cruelty” (Hodge et al., 2022, p. 26) experienced by some participants (or their children) at school. Participants reported being spoken to in ways so dehumanising that, for some, it had a pervasive negative impact on their sense of self; something the authors conceptualise as a “denial of personhood” (Hodge et al., 2022, p.32).

Therefore, the experiences described by our participants might be most clearly interpreted as a form of disablism in which the inherent characteristics of an autistic child may be seen by some members of school staff as undesirable. This interpretation chimes with previous research on the negative attitudes held by some mainstream primary school teachers towards the inclusion of children with special educational needs and disabilities (see De Boer et al., 2011 for a review). Other studies have reported similar trends with teachers expressing a lack of confidence in their ability to meet the needs of autistic students, citing insufficient funding, resources and training (Humphrey & Symes, 2013; Ravet, 2018; Roberts & Simpson, 2016). The findings of the present study suggest that negative attitudes and lack of confidence in teachers may impact negatively not just on the quality of an autistic child's education, but also on their developing sense of self.

The idea that staff lack appropriate training to meet the needs of autistic children in mainstream schools has a long history, and in recent years, there have been renewed calls from national autism charities for increased investment in training for school staff and leaders (Ambitious About Autism, 2022; National Autistic Society, 2021). This has been echoed in government with a commitment to increased autism training (APPGA, 2019; Department of Health and Social Care and Department for Education, 2021). However, there are scant details on what this training might involve or what its objectives might be.

The findings of the present study, in accordance with the wider qualitative literature cited above, indicate that for teacher training to bring about positive change, there first needs to be greater recognition of the harmful impact of neuronormative school cultures and attitudes, particularly in terms of autistic CYP's wellbeing and self-concept. Recent research into neurodiversity-affirming approaches to supporting autistic children may offer some suggestions on how this shift might take shape if it were to be incorporated into staff training. Leadbitter et al. (2021) have proposed a move towards a strengths-based approach to support in the early years which, instead of prioritising neuronormative goals and aspirations, prioritises autonomy and wellbeing. Similarly, Fletcher-Watson (2022) proposes that in order to create a neurodiversity-affirming education system, it needs to: 1) expect diversity instead of defining difference as unusual, 2) teach self-advocacy skills so that autistic learners can ask for help when they need it, 3) actively fight stigma and, 4) profile the individual rather than the label in order to create effective personalised approaches to meeting need. Regardless of the form future teacher training might take, the findings of this study suggest that greater attention needs to be paid to role of the school cultures and school-based stigma in autistic CYP's development.

Conclusion

As highlighted above, we know that autistic CYP tend to experience significantly greater difficulties in school than their non-autistic peers, and many of these difficulties are attributed in some way to perceived impairments and deficits associated with autism. Our research does not and cannot challenge the veracity of these ideas, but it suggests that such conceptualisations may fail to recognise the role of environmental factors in the challenges autistic children face. Historically, the impact of cultural factors in the education on autistic children has received little attention. The idea that school environments and the attitudes of the school community could be at the heart of the challenges an autistic child is experiencing is not one that has been sufficiently explored, particularly within the context of primary school. Future research which investigates such factors is much needed.

Strengths and limitations

This study makes a novel contribution to the literature on the autistic school experience and, to our knowledge, is the first to report on microaggressions and invalidations towards autistic CYP specifically within the context of mainstream primary school. However, this study was a small-scale qualitative investigation involving autistic young adults without co-occurring learning disability who use speech to communicate. As such, it makes no claims to generalisability and more research is needed to establish the extent to which the experiences documented here are shared more broadly among the wider autistic mainstream primary school population.

It is also notable that only one of the participants was aware that they were autistic during their primary school years. Despite the fact that since the 1980s, inclusive education policy in England has been needs-led rather than contingent on medical diagnoses (Wearmouth, 2017), it is possible that the absence of diagnoses for most participants during the primary years may have had a bearing on their experiences.

Furthermore, it is important to highlight that the autistic adults in this study were reflecting on their primary school experiences from the position of some distance. This was an intentional aspect of the study design and featured prominently in the fourth theme, looking back. It is possible that their perceptions at the time of the study were different to their perceptions as children and this could be seen as a limitation of the study. However, we would argue that there is a strong rationale for the exploration of the perspectives of autistic adults on their formative childhood experiences. For example, previous research into the long term impact of early childhood intervention has revealed important dimensions of experience that may not have been possible to capture in childhood (e.g., Anderson, 2023; McGill & Robinson, 2021). It is possible that significant childhood experiences take time to process, so exploring early life experiences retrospectively from the position of adulthood may have considerable advantages.

Footnotes

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Jo Billington

Notes

References

All Party Parliamentary Group on Autism (APPGA). (2019). The Autism Act, 10 Years On: A report from the All Party Parliamentary Group on Autism on understanding, services and support for autistic people and their families in England. Retrieved from https://pearsfoundation.org.uk/wp-content/uploads/2019/09/APPGA-Autism-Act-Inquiry-Report.pdf

Ambitious About Autism. (2022). Written Off: Tackling problems in the SEND system that hold back autistic children and young people. Retrieved from https://www.ambitiousaboutautism.org.uk/sites/default/files/campaigns/written-off-report-ambitious-about-autism.pdf

Anderson

L. K.

(2023). Autistic experiences of applied behavior analysis. Autism, 27(3), 737–750. https://doi.org/10.1177/13623613221118216

Baron-Cohen

Ring

H. A.

Bullmore

E. T.

Wheelwright

Ashwin

Williams

(2000). The amygdala theory of autism. Neuroscience & Biobehavioral Reviews, 24(3), 355–364. https://doi.org/10.1016/S0149-7634(00)00011-7

Birkett

McGrath

Tucker

(2022). Muting, filtering and transforming space: Autistic children's sensory ‘tactics’ for navigating mainstream school space following transition to secondary school. Emotion, Space and Society, 42, 100872. https://doi.org/10.1016/j.emospa.2022.100872

Bond

Symes

Hebron

Humphrey

Morewood

Woods

(2016). Educational interventions for children with ASD: A systematic literature review 2008–2013. School Psychology International, 37(3), 303–320. https://doi.org/10.1177/0143034316639638

Bradley

Shaw

Baron-Cohen

Cassidy

(2021). Autistic Adults’ experiences of camouflaging and its perceived impact on mental health. Autism in Adulthood, 3(4), 320–329. https://doi.org/10.1089/aut.2020.0071

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa

Braun

Clarke

(2022). Thematic analysis: A practical guide. Sage Publications Ltd.

10.

Cassidy

S. A.

Gould

Townsend

Pelton

Robertson

A. E.

Rodgers

(2020). Is camouflaging autistic traits associated with suicidal thoughts and behaviours? Expanding the interpersonal psychological theory of suicide in an undergraduate student sample. Journal Of Autism And Developmental Disorders, 50(10), 3638–3648. https://doi.org/10.1007/s10803-019-04323-3

11.

Chamberlain

Kasari

Rotheram-Fuller

(2007). Involvement or isolation? The social networks of children with autism in regular classrooms. Journal Of Autism And Developmental Disorders, 37(2), 230–242. https://doi.org/10.1007/s10803-006-0164-4

12.

Cibralic

Kohlhoff

Wallace

McMahon

Eapen

(2019). A systematic review of emotion regulation in children with autism Spectrum disorder. Research in Autism Spectrum Disorders, 68, 101422. https://doi.org/10.1016/j.rasd.2019.101422

13.

Clark

A. M.

(1998). The qualitative-quantitative debate: Moving from positivism and confrontation to post-positivism and reconciliation. Journal of Advanced Nursing, 27(6), 1242–1249. https://doi.org/10.1046/j.1365-2648.1998.00651.x

14.

Cook

Crane

Hull

Bourne

Mandy

(2022). Self-reported camouflaging behaviours used by autistic adults during everyday social interactions. Autism, 26(2), 406–421. https://doi.org/10.1177/13623613211026754

15.

Cooper

Russell

A. J.

Lei

Smith

L. G.

(2023). The impact of a positive autism identity and autistic community solidarity on social anxiety and mental health in autistic young people. Autism, 27(3), 848–857. https://doi.org/10.1177/13623613221118351

16.

Cooper

Smith

L. G.

Russell

(2017). Social identity, self-esteem, and mental health in autism. European Journal of Social Psychology, 47(7), 844–854. https://doi.org/10.1002/ejsp.2297

17.

Crane

Batty

Adeyinka

Goddard

Henry

L. A.

Hill

E. L.

(2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal Of Autism And Developmental Disorders, 48(11), 3761–3772. https://doi.org/10.1007/s10803-018-3639-1

18.

Crane

Chester

J. W.

Goddard

Henry

L. A.

Hill

(2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153–162. https://doi.org/10.1177/1362361315573636

19.

Dahlberg

(2019). The question of meaning—A momentous issue for qualitative research. International Journal of Qualitative Studies on Health and Well-Being, 14(1), 1598723. https://doi.org/10.1080/17482631.2019.1598723

20.

Dean

Harwood

Kasari

(2017). The art of camouflage: Gender differences in the social behaviors of girls and boys with autism spectrum disorder. Autism, 21(6), 678–689. https://doi.org/10.1177/1362361316671845

21.

De Boer

Pijl

S. J.

Minnaert

(2011). Regular primary schoolteachers’ attitudes towards inclusive education: A review of the literature. International Journal of Inclusive Education, 15(3), 331–353. https://doi.org/10.1080/13603110903030089

22.

Denzin

N. K.

Lincoln

Y. S.

(2011). The Sage handbook of qualitative research. Sage Publications Inc.

23.

Department for Education (DfE). (2022). Permanent exclusions and suspensions in England. Retrieved from https://explore-education-statistics.service.gov.uk/find-statistics/permanent-and-fixed-period-exclusions-in-england/2021-22-autumn-term

24.

Department for Education (DfE). (2023). Special Educational Needs in England. Retrieved from https://explore-education-statistics.service.gov.uk/find-statistics/special-educational-needs-in-england

25.

Department of Health and Social Care and Department for Education. (2021). National strategy for autistic children, young people and adults: 2021 to 2026. Retreived from

26.

Dillon

G. V.

Underwood

J. D. M.

Freemantle

L. J.

(2014). Autism and the U.K. Secondary school experience. Focus on Autism and Other Developmental Disabilities, 31(3), 221–230. https://doi.org/10.1177/1088357614539833

27.

Fletcher-Watson

(2022). Neurodiversity affirmative education for autistic learners. Paper presented at the University College London Centre for Research in Autism and Education (CRAE) annual lecture. Retrieved on from https://figshare.com/articles/presentation/Neurodiversity-Affirmative_Education_for_Autistic_Learners/19355570/1

28.

Fletcher-Watson

Adams

Brook

Charman

Crane

Cusack

Leekam

Milton

Parr

J. R.

Pellicano

(2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943–953. https://doi.org/10.1177/1362361318786721

29.

Goodall

(2018). I felt closed in and like I couldn’t breathe’: A qualitative study exploring the mainstream educational experiences of autistic young people. Autism & Developmental Language Impairments, 3, 1–16. https://doi.org/10.1177/2396941518804407

30.

Harter

(2007). The self. In Damon

Lerner

R. M.

Eisenberg

(Eds.), Handbook of child psychology ((6^th ed, pp. 505–570). John Wiley & Sons, Inc.

31.

Hatton

(2018). School absences and exclusions experienced by children with learning disabilities and autistic children in 2016/17 in England. Tizard Learning Disability Review, 23(4), 207–212. https://doi.org/10.1108/TLDR-07-2018-0021

32.

Hibbert

Coupland

MacIntosh

(2010). Reflexivity: Recursion and relationality in organizational research processes. Qualitative Research in Organizations and Management: An International Journal, 5(1), 47–62. https://doi.org/10.1108/17465641011042026

33.

Hodge

Douglas

Kruth

Connolly

Martin

Gowler

Smith

(2022). Contemplating teacher talk through a critical autism studies lens. In Milton

Ryan

(Eds.), The routledge international handbook of critical autism studies (pp. 242–254). Routledge.

34.

Horgan

Kenny

Flynn

(2022). A systematic review of the experiences of autistic young people enrolled in mainstream second-level (post-primary) schools. Autism, 27(2), 526–538. https://doi.org/10.1177/13623613221105089

35.

Howitt

(2019). Introduction to qualitative research methods in psychology. Pearson Education Ltd, UK.

36.

Hull

Petrides

Allison

Smith

Baron-Cohen

Lai

M.-C.

Mandy

(2017). Putting on my best normal”: Social camouflaging in adults with autism spectrum conditions. Journal Of Autism And Developmental Disorders, 47(8), 2519–2534. https://doi.org/10.1007/s10803-017-3166-5

37.

Hummerstone

Parsons

(2021). What makes a good teacher? Comparing the perspectives of students on the autism spectrum and staff. European Journal of Special Needs Education, 36(4), 610–624. https://doi.org/10.1080/08856257.2020.1783800

38.

Humphrey

Hebron

(2015). Bullying of children and adolescents with autism spectrum conditions: A ‘state of the field’ review. International Journal of Inclusive Education, 19(8), 845–862. https://doi.org/10.1080/13603116.2014.981602

39.

Humphrey

Symes

(2013). Inclusive education for pupils with autistic spectrum disorders in secondary mainstream schools: Teacher attitudes, experience and knowledge. International Journal of Inclusive Education, 17(1), 32–46. https://doi.org/10.1080/13603116.2011.580462

40.

Huws

Jones

(2010). They just seem to live their lives in their own little world’: Lay perceptions of autism. Disability & Society, 25(3), 331–344. https://doi.org/10.1080/09687591003701231

41.

John

R. P.

Knott

F. J.

Harvey

K. N.

(2018). Myths about autism: An exploratory study using focus groups. Autism, 22(7), 845–854. https://doi.org/10.1177/1362361317714990

42.

Kasari

Locke

Gulsrud

Rotheram-Fuller

(2011). Social networks and friendships at school: Comparing children with and without ASD [journal article]. Journal of Autism and Developmental Disorders, 41(5), 533–544. https://doi.org/10.1007/s10803-010-1076-x

43.

Keen

Webster

Ridley

(2016). How well are children with autism spectrum disorder doing academically at school? An overview of the literature. Autism, 20(3), 276–294. https://doi.org/10.1177/1362361315580962

44.

Kim

S. H.

Bal

V. H.

Lord

(2018). Longitudinal follow-up of academic achievement in children with autism from age 2 to 18. Journal of Child Psychology and Psychiatry, 59(3), 258–267. https://doi.org/10.1111/jcpp.12808

45.

Lai

M.-C.

Kassee

Besney

Bonato

Hull

Mandy

Szatmari

Ameis

S. H.

(2019). Prevalence of co-occurring mental health diagnoses in the autism population: A systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819–829. https://doi.org/10.1016/S2215-0366(19)30289-5

46.

Leadbitter

Buckle

K. L.

Ellis

Dekker

(2021). Autistic self-advocacy and the neurodiversity movement: Implications for autism early intervention research and practice. Frontiers in Psychology, 12. https://doi.org/10.3389/fpsyg.2021.635690

47.

Livingston

L. A.

Shah

Happé

(2019). Compensatory strategies below the behavioural surface in autism: A qualitative study. The Lancet Psychiatry, 6(9), 766–777. https://doi.org/10.1016/S2215-0366(19)30224-X

48.

Maïano

Normand

C. L.

Salvas

M.-C.

Moullec

Aimé

(2015). Prevalence of school bullying among youth with autism Spectrum disorders: A systematic review and meta-analysis. Autism Research, 9, 601–615. https://doi.org/10.1002/aur.1568

49.

Makino

Hartman

King

Wong

P. Y.

Penner

(2021). Parent experiences of autism Spectrum disorder diagnosis: A scoping review. Review Journal of Autism and Developmental Disorders, 8(3), 267–284. https://doi.org/10.1007/s40489-021-00237-y

50.

Mayes

S. D.

Calhoun

S. L.

(2007). Learning, attention, writing, and processing speed in typical children and children with ADHD, autism, anxiety, depression, and oppositional-defiant disorder. Child Neuropsychology, 13(6), 469–493. https://doi.org/10.1080/09297040601112773

51.

McGill

Robinson

(2021). Recalling hidden harms”: Autistic experiences of childhood applied behavioural analysis (ABA). Advances in Autism, 7(4), 269–282. https://doi.org/10.1108/AIA-04-2020-0025

52.

McKinlay

Wilson

Hendry

Ballantyne

(2022). It feels like sending your children into the lions’ den” – A qualitative investigation into parental attitudes towards ASD inclusion, and the impact of mainstream education on their child. Research in Developmental Disabilities, 120, 104128. https://doi.org/10.1016/j.ridd.2021.104128

53.

Milton

(2012). On the ontological status of autism: The ‘double empathy problem’. Disability & Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008

54.

Milton

Bracher

(2013). Autistics speak but they are heard. Journal of the BSA MedSoc Group, 7, 61–69.

55.

Morf

C. C.

Mischel

(2012). The self as a psycho-social dynamic processing system: Toward a converging science of selfhood. In Leary

M. R.

Tangney

J. P.

(Eds.), Handbook of self and identity ((2nd ed, pp. 69–104). The Guilford Press.

56.

National Autistic Society. (2021). School report 2021. Retrieved from https://www.autism.org.uk/what-we-do/news/school-report-2021

57.

Olweus

(1993). Victimization by peers: Antecedents and long-term outcomes. In Rubin

K. H.

Asendorpf

J. B.

Asendorpfz

(Eds.), Social Withdrawal, inhibition, and Shyness in Childhood. Psychology Press.

58.

Oredipe

Kofner

Riccio

Cage

Vincent

Kapp

S. K.

Dwyer

Gillespie-Lynch

(2023). Does learning you are autistic at a younger age lead to better adult outcomes? A participatory exploration of the perspectives of autistic university students. Autism, 27(1), 200–212. https://doi.org/10.1177/13623613221086700

59.

Oswald

T. M.

Beck

J. S.

Iosif

A. M.

McCauley

J. B.

Gilhooly

L. J.

Matter

J. C.

Solomon

(2016). Clinical and cognitive characteristics associated with mathematics problem solving in adolescents with autism spectrum disorder. Autism Research, 9(4), 480–490. https://doi.org/10.1002/aur.1524

60.

Oyserman

Elmore

Smith

(2012). Self, self-concept, and identity. In Leary

M. R.

Tangney

J. P.

(Eds.), Handbook of self and identity ((2nd ed, pp. 69–104). The Guilford Press.

61.

Pearson

Rose

(2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52–60. https://doi.org/10.1089/aut.2020.0043

62.

Pelton

M. K.

Crawford

Robertson

A. E.

Rodgers

Baron-Cohen

Cassidy

(2020). Understanding suicide risk in autistic adults: Comparing the interpersonal theory of suicide in autistic and non-autistic samples. Journal Of Autism And Developmental Disorders, 50(10), 3620–3637. https://doi.org/10.1007/s10803-020-04393-8

63.

Ponterotto

J. G.

(2005). Qualitative research in counseling psychology: A primer on research paradigms and philosophy of science. Journal Of Counseling Psychology, 52, 126–136. https://doi.org/10.1037/0022-0167.52.2.126

64.

QSR International Pty Ltd. (2018). Nvivo (version 12). https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home

65.

Ravet

(2018). ‘But how do I teach them?’: Autism & initial teacher education (ITE). International Journal of Inclusive Education, 22(7), 714–733. https://doi.org/10.1080/13603116.2017.1412505

66.

Roberts

Simpson

(2016). A review of research into stakeholder perspectives on inclusion of students with autism in mainstream schools. International Journal of Inclusive Education, 20(10), 1084–1096. https://doi.org/10.1080/13603116.2016.1145267

67.

Rowley

Chandler

Baird

Simonoff

Pickles

Loucas

Charman

(2012). The experience of friendship, victimization and bullying in children with an autism spectrum disorder: Associations with child characteristics and school placement. Research in Autism Spectrum Disorders, 6(3), 1126–1134. https://doi.org/10.1016/j.rasd.2012.03.004

68.

Sasson

N. J.

Faso

D. J.

Nugent

Lovell

Kennedy

D. P.

Grossman

R. B.

(2017). Neurotypical peers are less willing to interact with those with autism based on thin slice judgments. Scientific Reports, 7, 40700. https://doi.org/10.1038/srep40700

69.

Schroeder

J. H.

Cappadocia

M. C.

Bebko

J. M.

Pepler

D. J.

Weiss

J. A.

(2014). Shedding light on a pervasive problem: A review of research on bullying experiences among children with autism spectrum disorders. Journal Of Autism And Developmental Disorders, 44(7), 1520–1534. https://doi.org/10.1007/s10803-013-2011-8

70.

Smith

McGannon

K. R.

(2017). Developing rigor in qualitative research: Problems and opportunities within sport and exercise psychology. International Review Of Sport And Exercise Psychology, 11(1), 101–121. https://doi.org/10.1080/1750984X.2017.1317357

71.

Sterzing

P. R.

Shattuck

P. T.

Narendorf

S. C.

Wagner

Cooper

B. P.

(2012). Bullying involvement and autism Spectrum disorders: Prevalence and correlates of bullying involvement among adolescents with an autism Spectrum disorder. Archives Of Pediatrics & Adolescent Medicine, 166(11), 1058–1064. https://doi.org/10.1001/archpediatrics.2012.790

72.

Sue

D. W.

Capodilupo

C. M.

Torino

G. C.

Bucceri

J. M.

Holder

Nadal

K. L.

Esquilin

(2007). Racial microaggressions in everyday life: Implications for clinical practice. American Psychologist, 62(4), 271. https://doi.org/10.1037/0003-066X.62.4.271

73.

Walsh

Hall

(2012). The autism strategy: Implications for people with autism and for service development. Advances in Mental Health and Intellectual Disabilities, 6(3), 113–120. https://doi.org/10.1108/20441281211227166

74.

Waltz

(2005). Reading case studies of people with autistic spectrum disorders: A cultural studies approach to issues of disability representation. Disability & Society, 20(4), 421–435. https://doi.org/10.1080/09687590500086575

75.

Warnock

Norwich

(2010). Special educational needs: A new look. Bloomsbury Publishing.

76.

Watkins

Ledbetter-Cho

O'Reilly

Barnard-Brak

Garcia-Grau

(2019). Interventions for students with autism in inclusive settings: A best-evidence synthesis and meta-analysis. Psychological Bulletin, 145(5), 490–507. https://doi.org/10.1037/bul0000190

77.

Wearmouth

(2017). Special educational needs and disabilities in schools: a critical introduction. Bloomsbury.

78.

Wilkinson

(2015). Focus Groups. In Smith

(Ed.), Qualitative psychology: A practical guide to research methods. Sage Publications Ltd.

79.

Wong

Odom

S. L.

Hume

K. A.

Cox

A. W.

Fettig

Kucharczyk

Brock

M. E.

Plavnick

J. B.

Fleury

V. P.

Schultz

T. R.

(2015). Evidence-based practices for children, youth, and young adults with autism spectrum disorder: A comprehensive review. Journal of Autism And Developmental Disorders, 45, 1951–1966. https://doi.org/10.1007/s10803-014-2351-z

80.

World Health Organization (2001). The Second decade: improving adolescent health and development.

81.

Yardley

(2000). Dilemmas in qualitative health research. Psychology & Health, 15(2), 215–228. https://doi.org/10.1080/08870440008400302

“I liked school,but school didn’t like me”: Autistic young adults’ reflections on their mainstream primary school experiences

Abstract

Lay Abstract

Keywords

Introduction

Method

Design

Participants

Participant demographics

Data collection

Focus groups and interview procedures

Participant safety and wellbeing

Data analysis

Positionality and reflexivity statement

Community involvement statement

Results

Theme 1: the undesirability of difference

Theme 2: the various guises of bullying

Theme 3: the emotional labour of ‘being good’

Theme 4: looking back

Discussion

Conclusion

Strengths and limitations

Footnotes

Declaration of conflicting interests

Funding

ORCID iD

Notes

References