Abstract
Representation in narrative fiction can be a powerful tool to shape perceptions and challenge stereotypes. For neurodivergent young people, opportunities to see their experiences reflected in the books they read could have powerful effects on their sense of belonging, self-acceptance, and self-understanding. For neurotypical readers, learning about the experiences of their neurodivergent peers through accurate representation in fiction books could help to promote understanding and reduce stigma. This article aims to provide detailed insights into neurodivergent young people's perceptions of the benefits and potential harms associated with the representation of neurodivergence in narrative fiction books (and other text types). Semi-structured interviews were carried out with 16 neurodivergent young people (14–17 years old) from two high schools in Scotland. Using an inductive data-driven thematic analysis process, benefits (supporting self-understanding and acceptance; facilitating positive emotional experiences; reducing stigma; and increasing peer understanding) and potential harms (reinforcing negative stereotypes; and changes in peers’ behaviour) were identified. Implications for education are discussed.
Lay abstract
Fiction books often reflect the social world we live in, and give readers opportunities to explore personally meaningful content, in addition to encountering characters and stories which may develop their understanding of others. In recent years there has been growing recognition of the importance of representation within books; however, no research has explored neurodivergent young people's perspectives of the representation of neurodivergence. Drawing on interviews with 16 neurodivergent young people (aged 14–17), their perceptions of benefits (supporting self-understanding and acceptance; facilitating positive emotional experiences; reducing stigma; and increasing peer understanding) and potential harms (reinforcing negative stereotypes and changes in peers’ behaviour) are shared and discussed. The implications for educational practice, but also the commissioning and publishing of young adult fiction are discussed.
Introduction
In recent years, improving media representations of marginalised and underrepresented groups has become the subject of increasing interest. In efforts to foster inclusivity and promote understanding of different groups, fiction books can be a powerful tool to shape perceptions and challenge stereotypes. Reading narrative fiction can reduce prejudice towards those perceived as different and support understanding of others (Chapple et al., 2021; Mar & Oatley, 2008; Vezzali et al., 2015). Relating to and identifying with fictional characters can also support self-understanding and identity development (Fialho, 2019; Schachter & Galili-Schachter, 2012). As adolescence is a key developmental period in the exploration and development of personal identity (e.g., Erikson, 1959), engagement with narrative fiction has the potential to support young peoples’ self-understanding and discovery (see Mathies, 2020; Slater et al., 2014). For neurodivergent young people, it may be especially challenging to make sense of where they fit into society (Creswell & Cage, 2019); reading about characters whose experiences are like their own has the potential to help them understand their experiences and see themselves as valued members of society.
The concept of neurodiversity encompasses the notion that natural variation in human neurological makeup affects how individuals process information and experience the world (Fletcher-Watson, 2022). Individuals whose neurotype overlaps with diagnostic categories such as autism, attention deficit hyperactivity disorder (ADHD), dyslexia, dyspraxia, among others (and including those with co-occurrences), may be referred to as neurodivergent (Fletcher-Watson, 2022). Advocates of the neurodiversity movement campaign for acceptance and respect for neurodivergent individuals, as well as for appropriate support and services to meet their needs and improve their well-being (Chapman, 2020). This includes being represented in the media (Jones, 2022).
The representation of neurodivergent characters in Young Adult (YA) fiction is important to provide opportunities for neurodivergent readers to engage with personally meaningful content, gain greater self-understanding, and connect with characters who inhabit similar worlds. Educators across primary and secondary school contexts believe that stigmatisation and social rejection can make neurodivergent pupils feel that they are ‘alien and unworthy’ (Hodge et al., 2019, p. 1353). For this reason, neurodivergent young people may find it especially challenging to make sense of where they fit into society, which could impact their self-esteem (Creswell & Cage, 2019). However, aligning with neurodivergent culture could provide neurodivergent young people with a sense of meaning, purpose, and belonging (see Cresswell & Cage, 2019). For neurodivergent young people, reading about neurodivergent characters and having opportunities to see their experiences reflected in the books they read has the potential to support the formation of their identity, as well as provide opportunities to find others they can relate to and discover a sense of belonging (see Barrio et al., 2021).
As well as potential benefits for neurodivergent readers, the representation of neurodivergence in YA fiction could provide opportunities for neurotypical readers to learn about the experiences of their neurodivergent peers. To date, relatively little research has explored environmental factors that might influence peer attitudes towards neurodivergent young people (Thompson-Hodgetts et al., 2023). However, some research has indicated that books can be used as a tool for increasing children's acceptance of disabled peers (see Salinger, 2020). Furthermore, previous research has shown that reading narrative fiction can improve attitudes towards stigmatised groups (Chapple et al., 2021; Vezzali et al., 2015), with perspective-taking playing a critical role in attitude improvement (Vezzali et al., 2015) and social acceptance (Chung & Slater, 2013). Taking others’ perspectives provides opportunities for the reader to perceive marginalised characters in terms of similarities to themselves, rather than differences (Chung & Slater, 2013). In the case of disability, ‘reflexive representations encourage the reader to think or feel disability anew, challenging, destabilising, or denaturalising assumptions about disability or disabled people’ (Cheyne, 2019, p. 162). Therefore, reading about neurodivergent characters could support young people to gain deeper insights into the experiences of their neurodivergent peers, improve attitudes towards them, and reduce stigma. For neurotypical readers, learning about the experiences of their neurodivergent peers through accurate representation in fiction could help to promote understanding and attitudes of acceptance (Chapple et al., 2021; Hayden & Prince, 2023; Salinger, 2020).
However, it is also important to consider any potential harms that may arise from contact with YA books featuring neurodivergent characters. First, misrepresentations of neurodivergent experiences could perpetuate negative stereotypes (see Kearney et al., 2019), contribute towards worsening attitudes, and increase stigma towards neurodivergent people. For example, representations which present disabled characters as ‘someone who has to “fight against his/her impairment” in order to overcome it and achieve unlikely success’ (Silva & Howe, 2012, p. 178) perpetuate the stereotype that disabled people cannot be accepted or included in society until they conform to an acceptable ‘ability norm’ (Kearney et al., 2019, p. 546). Even when representations are accurate and positive, neurodivergent young people may have other concerns about their peers reading books featuring neurodivergent characters, such as drawing attention to their diagnosis or feeling obligated to share personal experiences with others.
Therefore, understanding neurodivergent young peoples’ perceptions of the benefits and potential harms associated with the representation of neurodivergence in YA fiction is essential to develop an understanding of how to introduce such texts in school to raise awareness and support neurodivergent pupils. Furthermore, efforts to promote inclusion and understanding of neurodivergent experiences should be informed by neurodivergent people themselves.
This study therefore sought to explore neurodivergent 1 young peoples’ (aged 14–17 years old) perceptions of the benefits and potential harms associated with the representation of neurodivergence in YA fiction. It is, to the best of our knowledge, the first study which has explored this.
Method
Research–practice partnership
This project was a research–practice partnership between a group of university-based researchers (n = 6) and practice partners (n = 8) with a shared interest and commitment to improving young people's literacy experiences, and understanding and amplifying the voices and perspectives of neurodivergent young people. The researchers were based in Schools of Education (CW, ES, and SM) and Clinical Brain Sciences (CC and SFW), with degrees in education, psychology, and children's literature. The practice partners were based in literacy advocacy organisations (BookTrust, National Literacy Trust Scottish Book Trust), or within the publishing sector (with a specific focus on supporting neurodivergent readers and/or including neurodivergent characters within fiction books), or were teachers (n = 2) currently teaching in U.K. schools. Two members of the project team identify as neurodivergent, six members have a personal interest in neurodivergence (e.g., close family member/s) and six members disclosed no information relevant to this. All 14 members of the project team contributed to, and were named on, the original grant application, and through online meetings and offline communication, agreed on the research questions, methodological approach, and the first draft of the interview schedule. The interview schedule was then shared with three neurodivergent young people for consultation. During this process, the neurodivergent young people each received an accessible summary of the project aims and a copy of the interview schedule prior to meeting with a member of the research team. During the meeting, they were encouraged to reflect on the questions and suggest revisions to improve relevance and accessibility, and/or suggest new questions which they personally felt were important. Several revisions were made as a result, primarily edits to existing questions, and these were agreed upon with the entire project team. Aligned with open research practices, the project was then preregistered on the Open Science Framework, and can be found here: https://osf.io/b4cfh.
Participants
In total, 16 neurodivergent young people (aged 14–17 years old) from two high schools in Scotland participated in one-to-one interviews with the second author. Six participants self-identified as male, nine self-identified as female, and one self-identified as transgender. While ethnicity information was not collected, the majority of participants appeared to be White Scottish/British. Participants had a range of diagnoses including autism (N = 6), ADHD (N = 1), autism/ADHD (N = 1), dyslexia (N = 7), and dyspraxia (N = 1). Participating schools were selected based on existing relationships with the research team and students were invited to take part through their teacher/school librarian.
Interview schedule
The interview questions first introduce young people to the topic of representation in general, before asking them about their own reading habits and preferences. The majority of questions then focus on neurodivergent representation in fiction books, including perceptions of benefits and potential harms. A copy of the interview schedule can be accessed within the preregistration: https://osf.io/b4cfh.
Procedure
Ethical approval was sought and granted by the University of Edinburgh Ethics Committee. Following consent from headteachers, parents, and participants, semi-structured one-to-one interviews were conducted in a quiet room within participants’ schools. All participants received a copy of the interview schedule in advance so they could prepare their responses if they wished. To improve accessibility, participants were also offered the opportunity to give written responses to the interview questions, rather than being interviewed in person, if they preferred. All took part in in-person interviews which were audio recorded using a dictaphone. All interviews were then transcribed in full by the first author and shared with the second and final authors. Anonymised data collected as part of this project will be made publicly available on the U.K. Data Service in September 2024.
Data analysis
The analysis was conducted from within a constructivist paradigm, using a data-driven inductive approach and following Braun and Clarke's (2006) six stages of thematic analysis. Three researchers (authors 1, 2, and final) initially read the first four interview transcripts independently, reading them twice in full (Phase 1), generating initial codes to identify interesting features of the data in a comprehensive way (Phase 2), and sorting the codes into themes (Phase 3). The researchers then met discuss codes and preliminary themes. This process (Phases 1–3) was then repeated for the entire dataset by the first author. Once completed, the themes were reviewed and refined by the same three researchers to ensure that they accurately represented the data (Phases 4–5), before being written up for publication (Phase 6).
Results and discussion
To provide depth to the findings, we present an integrated results and discussion which is split into two sections, containing themes relating to young people's perspectives of (a) the benefits and (b) the potential harms of neurodivergent representation in fiction books.
Benefits of neurodivergent representation in fiction books
Supporting self-understanding, acceptance, and understanding of other neurodivergent identities
Neurodivergent young people reported that reading about neurodivergent characters could help them understand themselves better. They noted that where they could relate to the experiences of neurodivergent characters, this could help them interpret their own experiences. For example: I think it would maybe help to, sort of, understand my experiences, because there's other things that I struggle with on a day-to-day basis but I'm not sure if that's, like, to do with my dyslexia or if that's something else, but if I was to read a book that, like, accurately represented someone with a similar neurodivergence to me … I’d sort of understand and be able to, like, connect (my) experiences to neurodivergency. (Dyslexic, female) There was one book that we read in class, A Kind of Spark, I think it was called. And it had an autistic main character and I think they handled that really well … because I could relate to a lot of the situations that happened in that book, like, accidentally hurting people, not being able to control emotions well. Yeah, I could relate to those situations. (Autistic, male) If I could relate to that person, I can sort of use the strategies that they use in the book, to use a bit to help myself … I think it would make learning in high school much easier, because you could-, you've already got more strategies. (Dyslexic, male) It might help because, if maybe in a book someone has some sort of tactic to remember something, I could try that out and that might work. (Dyslexic, female) (The book) was about accepting that this is a thing that you have, and that it has strong points as well. That it is not all bad. (Autistic, male) If the book has a happy ending or happy times and it's a character like me or, like, someone who has any difference in how they are … it would be important (to see that) people who go through this stuff, almost like, every single situation they come up, like, they come out more stronger. (Autistic/ADHD, female)
Neurodivergent young people also reported that reading about characters with different diagnoses could help them better understand the experiences of other neurodivergent people. For example, one young person noted: I know what neurodivergence I have, but I don’t know about what it's like to have other neurodivergences, so I think I could benefit from that by learning about others that have similar things to me, but not the same as what I have. (Autistic, male)
Facilitating positive emotional experiences
Neurodivergent young people also reported positive emotional experiences (e.g., happiness, comfort) associated with reading books featuring neurodivergent characters, for example: They made me feel quite happy, but also quite invested. I think it made me quite happy in a sense of, you know, having characters who sort of have disabilities that you can relate to. It's a very good thing. (Autistic, female) I could like, figure out, like, a few things, like, that remind me of autism and stuff and it's really cool to spot like stuff like that in characters … it made me feel, like, really comfortable and happy. (Autistic/ADHD, female) I feel like (in a book) I can, like, accept change and stuff because, like, in real life I find that really difficult, but when I’m reading a book, it's like, mind blowing … I’m not upset about it. I can, like go through the change without being stressed. (Autistic/ADHD, female) It could also be good for other people who may feel left out … and it can make them feel like they’re not alone, even though it is just a book. (Dyslexic, male) By having similarities, you can build a better bond with the character especially and almost make it feel real. And also just the fact of making it feel real actually does break into reality in this case, because obviously there is people out there around the same age as you and they're going through different things but you have a lot of similarities … [it] can make you feel more safe and not feel, you know, different to other people. (Dyslexic, male)
Reducing stigma and increasing peer understanding
Neurodivergent young people noted that for their peers, teachers, and parents, reading books featuring neurodivergent characters could help them gain a better understanding of neurodivergent experiences. They commented that explaining their experiences to others could be challenging, and that books could act as a medium for facilitating understanding. For example: If they have, like, read the same book then it'll help them understand better because it's quite hard to explain what you struggle with when it's not something that you can physically see with the person, because if they don't-, if you've never experienced it, then it's probably harder to understand why you can't do something, because it's something that they find easy to do. So if they read the book, then they might understand. (Autistic, male) I feel like no matter how much you explain what it's like, no one will ever like, understand. You know? It's really difficult to explain. So I feel like, if you saw a person in the book and you watch the person and what they did and if it was like one of those books where it's like-, it's like explaining what they're thinking, I think that would be so cool, because then they could understand. (Autistic/ADHD, female)
Young people also felt that their peers gaining a deeper understanding of particular aspects of neurodivergent experiences could support acceptance, reduce stigma, and help their peers learn how to better support them It's easier when you see things as, like, a story than if you’re just meeting someone, because if you don’t understand prior then you’ll just think they’re weird … (they could understand) the way we think and the way we see the world and the way we feel. Seeing us as actual people. (Autistic, Trans) Maybe it would just make them understand rather than make them think that it's just zoning out, for example, or not being able to focus. Maybe they’d understand it more than that instead of having to go out of their way and do research on something. (Autistic, female) I think it would maybe help them understand me a bit more. You know, when it comes to learning and new things, I can be a bit, kind of, distant if it's something to do with, like, reading or writing or spelling and helping them understand. (Dyslexic, female) Because (your friends) already know you more as a person and they’re going to know ways how you will struggle and how you can cope with that, and the things you’re good at. (Dyslexic, male) All my friends, we’re all, like, neurodivergent and we’re all just, kinda, clumped together in a group … we all act that way. (Dyspraxic, female)
Potential harms of neurodivergent representation in fiction books
Negative, inaccurate, or stereotypical representations of neurodivergence could increase stigma
Neurodivergent young people were concerned that negative, inaccurate or incomplete representations could increase stigma and perpetuate stereotypes. For example: The amount of times that, sort of I've seen, you know, like media or things like that, not specifically with autistic characters, but with other conditions just be represented in just the worst of ways. And I have no doubt that there will be other people with different conditions that will feel like that when they're misrepresented in the media, what the misrepresentation could also do is it can lead to stereotypes, it can lead to things being built, it can lead to these sort of, you know, misunderstandings or hatreds of the conditions. (Autistic, female) My brother, he's autistic, and I think if he was to see a character that was represented wrong I think it could be quite damaging. And it can be quite-, not just damaging for the kids that are reading them who are autistic, but just in general, it can put even more of a negativity towards it. (Dyslexic, female) They just go over the basics, I think a lot of the time they just sort of paint the image that everyone thinks … they forget a lot of the key aspects of what's important. I'd like to see probably just, you know, a lot of people get this thought of dyslexia, because I'm dyslexic, that you look at a word and it, you know, mutates and it jumbles around that doesn't happen for me. (Dyslexic, male) Probably the two main ones are autism and ADHD. They’re just very inaccurate most of the time, with the books, they’re always just stereotyped. With autism, they're more seen as childish … and ADHD are just always zoning out or just spacing out and not able to concentrate. They're always stereotyped as those for some reason. (Autistic, female) I think a good way for representation is … (it) doesn’t, like, sort of perpetuate, like, harmful stereotypes, because otherwise I’d just rather not be represented if it's, like, offensive. (Dyslexic, female)
(Negative) changes in peers’ attitudes/behaviour
Neurodivergent young people also noted that negative and/or inaccurate representations of neurodivergence in books could affect how their peers perceive them which could affect their attitudes and/or behaviour. For example: The way (others) act around you, or maybe the way they perceive you would probably change if they’re seeing all these negative things about a condition and then, you know, it can just sort of change how they might behave towards you. Because, you know, they're seeing this negative thing around this condition and then they sort of realise like, ‘oh, that might be them, what if they turn in to the same as this book?’. (Autistic, female) The only thing I wouldn’t like is, if it came off as a thing where people will start like being, around me all the time, like asking me how I am … it would need to be a positive thing that isn’t coming off as ‘I feel sorry for you’, you know? (Autistic/ADHD, female)
Educational implications
The insights from this study illustrate numerous ways in which neurodivergent young people and their peers could benefit from reading good (i.e., accurate, positive) books featuring neurodivergent characters. Schools should therefore support young people's access to texts featuring a diverse range of neurodivergent characters with different diagnoses and demographics (e.g., race, gender, etc.) and which capture a variety of neurodivergent experiences.
Crucially, texts featuring neurodivergent characters need to be accessible to neurodivergent readers, especially those who might face additional barriers to reading. Providing access to texts in different formats (e.g., graphic novels, audiobooks), providing varied means of accessing (e.g., reading aloud, linking to film/TV adaptations), and ensuring book provision matches the skill levels of pupils with additional needs is paramount.
Furthermore, it is important that access and reading of these books is not encouraged only among neurodivergent readers. Reading about characters different from ourselves can reduce prejudice towards those perceived as different (Vezzali et al., 2015), and support the understanding of others (Mar & Oatley, 2008). As outlined by young people in this study, peer engagement with texts featuring neurodivergent characters could increase their understanding of neurodivergence and support greater acceptance. Sensitive discussions around neurodivergent characters could also help challenge stereotypes or assumptions held about neurodivergence and foster an environment where learning about one another's experiences is valued.
However, it is also important to be considerate of the concerns neurodivergent young people (e.g., texts which misrepresent neurodivergent experiences, increase stigma, or perpetuate stereotypes). Therefore, the addition of book provision should be done with care. and involving neurodivergent pupils in recommending and selecting books which they feel accurately represent their experiences. Furthermore, it is important to encourage pupils to critically engage with representations of neurodivergence in texts, for example, facilitating discussions about authentic representation, stereotyping, etc. Finally, simply adding books with neurodivergent characters to the library is important, but not sufficient. Representative book provision should be combined with ongoing education for teachers and pupils, in consultation and collaboration with neurodivergent pupils.
Limitations and considerations
We recognise a lack of diversity in our sample, for example, the lack of non-speaking 2 participants, and those in Alternative Provision (education outside school). By not including these individuals in our sample, we acknowledge that we are contributing towards systems of hierarchy which exist within neurodivergent populations, whereby the experiences of some neurodivergent experiences (namely those of white autistic individuals) receive more attention than others (Jones et al., 2020; Jones & Mandell 2020). Furthermore, while our participants’ ethnicity was not recorded, the vast majority of participants appeared to be White Scottish/British. Understanding intersectional representation in narrative fiction, as different minority identities/experiences intersect should be a priority for future research.
Finally, it is necessary to note that the characters which neurodivergent readers relate to may not, and need not, be explicitly labelled as neurodivergent. Neurodivergent readers may find ‘coded’ characters (where neurodivergent characters are implied, rather than explicitly labelled) to identify with, and/or identify with characters which do not have neurodivergent traits. Neurodivergent young people should also not be expected to identify with all neurodivergent characters; just because a character is neurodivergent does not mean all neurodivergent readers will relate to their experiences. This again highlights the importance of having many and varied representations of different neurodivergent experiences (both explicit and implicit) for readers to access.
Conclusion
The representation of neurodivergence in YA fiction has the potential to deliver multiple benefits for both neurodivergent and non-neurodivergent readers. For neurodivergent readers, these include supporting self-understanding and acceptance, helping identify strategies for use in their own lives, facilitating positive emotional experiences, and learning about the experiences of individuals with different diagnoses to them. For non-neurodivergent readers, reading about neurodivergent characters has the potential to reduce stigma and increase understanding of their neurodivergent peers. Participants also identified several potential harms, such as reinforcing negative stereotypes and causing changes in the way their peers behave towards them. Therefore, connecting young people with books featuring neurodivergent characters should be done with care, ensuring that chosen texts do not reinforce negative stereotypes, are selected in collaboration with neurodivergent pupils themselves, and are combined with explicit education on neurodivergence for staff and pupils.
Footnotes
Acknowledgements
We would like to thank all the young people who contributed to this project and generously shared their thoughts and experiences in relation to neurodivergent representation, or supported us to improve our interview questions. Thank you also to the teachers and librarians who facilitated these interviews. This project benefitted considerably from input from different practice partners with a shared interest and commitment to this topic. The Neurodiversity and Narrative Fiction partners include Daniel Payne (Book Trust), Victoria Williamson (author), Lucy Juckes (former publisher, Barrington Stoke), Eadaoin Lynch (Scottish Book Trust), Katie Juckes (teacher) and Christina Clark (National Literacy Trust). We would also like to thank a member of the research team, Dr Katie Cebula, for her contribution to the project.
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 disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the University of Edinburgh Challenge Investment Fund, awarded to Principal Investigator Sarah McGeown, with researcher co-investigators Dr Catherine Crompton, Prof. Sue Fletcher-Watson and Dr Katie Cebula.
