Abstract
What texts do people use to think about, understand, and build upon the language and concept of ‘neurodiversity’? This article presents findings from an institutional ethnography study in which participants in Ontario, Canada each selected and discussed a text – any written, visual, or recorded source – that had influenced their understanding of neurodiversity. This analysis focuses on findings from interviews with the 44 neurodivergent participants. We found that participants were sometimes very connected to discussions on neurodiversity and sometimes new to or isolated from them. Our findings highlight the impact of influential texts such as the movie Rain Man and the book NeuroTribes, and confirm the structural dominance of the Diagnostic and Statistical Manual of Mental Disorders. While participants expressed varied opinions about specific items (e.g. television shows), all participants described a limited representational landscape. Participants talked about how neurodivergent people have unequal access to status and expertise; texts can be one way to mobilize the ‘expert’ status of others, or to assert the expertise of neurodivergent people. In hearing from neurodivergent people about how texts contribute their understanding of neurodiversity, researchers can learn about the everyday social impact of representation across institutional contexts.
Lay abstract
What books, shows, websites, movies, and other texts do people think about when they are talking about neurodiversity? We interviewed 44 neurodivergent people in Ontario, Canada, to find out what they thought about neurodiversity. Interviews were done in person or online through Zoom. The people who were interviewed chose a “text” that they thought was related to neurodiversity and explained what they thought and felt about it. Texts could be anything that is recorded: books, movies, shows, music, webcomics, and more. We examined what people selected and what was important to them about their selections. We found that some people were really connected to ideas and language about neurodiversity and had lots of places and people where they could discuss it, while others did not know many others who talked about neurodiversity. We learned that a few texts affected a lot of other beliefs and experiences - we called these “boss texts”. People also shared a lot of different feelings about how different texts (such as shows or books), but a problem everyone shared is that there are few representations of neurodivergent people that everyone could feel okay about. People also talked about how some texts could be taken more seriously than others based on who created them, and it could take a lot of work to find texts that were helpful. They also discussed how important it is to have texts created by neurodivergent people. Some people even decided to create their own texts. In asking participants about texts, researchers are able to hear different perspectives about neurodiversity from people whose knowledge is often ignored.
Introduction
What texts do people use to think about, understand, and build upon the concept and language of ‘neurodiversity’? While the term ‘neurodiversity’ has been used for over 20 years since its creation in Autistic 1 communities (Botha et al., 2024) and its subsequent appearance in the writings of Singer (1998) and Blume (1998), neurodiversity remains contentious and varied in its definition and application. Most people identify this term with a ‘neurodiversity movement’ that has largely existed outside of mainstream definitions and politics, and overlaps in its focus and membership with Autistic activism, disability justice, and Mad pride/service user advocacy movements (den Houting, 2019; Kapp, 2020; Piepzna-Samarasinha, 2018; Singer, n.d.). While the concept of neurodiversity has been taken up and mobilized by a variety of actors in ways that evidence many conflicts and tensions (Chapman, 2020; Livingstone et al., 2023), neurodiversity is commonly understood to have several defining features. As a paradigm, neurodiversity offers an alternative to pathologizing and deficit-based accounts of human difference (Gibson, 2021a; Gibson et al., 2024; Kapp et al., 2013). It frames ‘disorders’ such as autism and attention-deficit hyperactivity disorder (ADHD) as forms of difference akin to race or gender, and points to the marginalization and discrimination faced by people labelled with these forms of difference (Strand, 2017). Neurodiversity also tends to be understood as a biological phenomenon based on physical differences between bodies, whether vaguely described as differences in ‘wiring’ or explicitly discussed as brain-based or genetic (Livingstone et al., 2023). The definitions, actions, and priorities associated with ‘neurodiversity’ as a concept, movement, and paradigm continue to be debated and refined across communities and organizations.
However, in recent years, the term ‘neurodiversity’ and activities associated with the neurodiversity movement have become more widespread and diffuse, extending into spaces and texts associated with less overtly politicized aims, including service agencies, educational trainings, employment strategies, and books for a popular audience (Livingstone et al., 2023; Yergeau, 2017). This explosion of more conventional popular and professional writing about neurodiversity has continued alongside – and often in tension with – neurodiversity activism that critiques the ways in which people are pathologized and excluded in education, research, and other social realms. This more activist discourse has continued primarily across online venues and political organizations and groups, such as the Autistic Self Advocacy Network and Autistics for Autistics Ontario; while academic researchers and clinicians have arrived late to this conversation, they have rapidly increased their own writing on neurodiversity across a range of fields.
Many writers have worked to define neurodiversity and develop its critique of dominant practices around autism and other forms of human difference (e.g. Baggs, 2010; Kapp, 2020; Sinclair, 1993), even as others have called attention to the ways that the concept of neurodiversity itself remains open to critique, especially as related to the overwhelming Whiteness of neurodiversity as a concept and the movement's lack of engagement with intersectional analysis (e.g., Botha & Gillespie-Lynch, 2022; Cheng et al., 2023; Giwa Onaiwu, 2020; Nair et al., 2024). The relationship between understandings of neurodiversity and texts has also been explored from a number of different angles. In particular, scholars have explored autism-specific texts and how they affect different audiences. For example, philosopher Ian Hacking (2010) reflected on the ‘manifold’ of cultural portrayals of autism which have proliferated alongside the rise of the Internet. There is evidence that written texts such as ‘autie-biographies’ can influence non-Autistic readers’ understandings of neurodivergent experience (see, e.g. Akhtar & Dinishak, 2024). Others have directly compared the traits of television (TV) and film characters broadly understood to be Autistic to formal diagnostic criteria for autism spectrum disorder (Nordahl-Hansen et al., 2018). Some researchers suggest that there may be differences in reading practices and responses among Autistic and non-Autistic readers (Chapple et al., 2023). Recently, scholars such as Betts and colleagues (2023) have written about a collaborative neurodiversity-themed network where people explore and share narrative texts and decentre neuronormative academic practices. Ann Stenning's analysis of autistic autobiographies also contributes to a cultural studies approach that supports a neurodiversity paradigm (2024). Others have conducted a scoping review of academic journal articles about portrayals of autism and Autistic people across popular media, and noted the ongoing prevalence of stigmatization and stereotyping even as there is strong evidence that more positive portrayals of Autistic people can effectively shift audiences’ beliefs and attitudes (Mittmann et al., 2024a, 2024b).
However, the relationship between the available textual discourses about neurodiversity more broadly and their effects and roles in individuals’ everyday experiences has remained under-examined. Our research project investigated how people use texts of all kinds in their engagement with the concept of neurodiversity. In so doing, this study strives to fill in connections between recorded discourses (e.g. TV shows, films, books, etc.) and people's everyday experiences, with an emphasis on the experiences of neurodivergent people. This approach also highlights marginalized perspectives and knowledges held by the people who have often been left out of common academic and cultural understandings of ‘expertise’. An analysis that writes people back into textual relations can illuminate the material and embodied effects of cultural and institutional discourses – and provide critical alternatives.
In this article we adopt and contribute to an institutional ethnography (IE) approach and method that sees texts as coordinating people's everyday lives (Smith, 2005). We draw upon interview findings from a 2-year ethnographic study, Neurodiversity Matters: An Ethnographic Investigation into Discourse, Practice, and Identity, which asked people in Ontario, Canada to talk about how texts are a part of their understanding and application of ‘neurodiversity’. As writers and researchers, we also have different positionalities with regards to this topic: in addition to our researcher roles, some of us identify as Autistic and/or neurodivergent, some as family members of neurodivergent people, some as service providers – and many as more than one of these at the same time. In our analyses, we have prioritized the standpoint of people who understand the concept of neurodiversity as something that is connected to their own identity and lived experience, while recognizing that the ruling relations that shape social understandings and applications of neurodiversity also affect the actions and experiences of many others.
Since this project set out to explore how different people understand and use the language and idea of neurodiversity, we did not start with a conceptual definition of what neurodiversity ‘should mean’. Instead, we explored the different ways that people use the language and concept of neurodiversity. We addressed three groupings of how neurodiversity was used:
People who used the language and concept of neurodiversity in relation to their identities (including those who identify as Autistic, ADHD, living with mental illness or Mad, neurodivergent, not believing in labels, people with learning disabilities, and epilepsy, among others). For simplicity, and in accordance with emerging community understandings, we describe this group as ‘neurodivergent’ (Zaneva et al., 2024). People who use the language and concept of neurodiversity in their work as educators or service providers. People who use the language and concept of neurodiversity in their familial relationships.
In considerations of length and scope, the current paper focuses on interviews with the first group of participants – those who indicated that they used neurodiversity in terms of their own identities and lived experiences – although we also consider the interviews from the other groups in our discussion of findings. Our analysis follows Smith's (2005) demand that researchers start from people's lived experiences of the ‘everyday’, attending to texts as a part of how people's actions are organized as a way to reveal ‘ruling relations’. Thus we proceed from detailed considerations of the perspectives of these individuals to an analysis of what they reveal about the larger institutional and representational landscape. We present our findings primarily at this level of characterizing ‘ruling relations’ – that is, how these discussions of texts identify the everyday and translocal (re)production of sociocultural power differentials that can be noted and, potentially, challenged (Smith, 2005).
Methods
Theoretical Approach
This project's theoretical and methodological approach was rooted in IE methodology, based on the work of Smith (2005), McCoy (1995, 2006), and Ng (1996), among others. IE moves away from a reliance on abstract categories and concepts to start research in the everyday practices and knowledge of people – and particularly people whose experiences come from the margins. Interviewing practices in IE: (i) start from a respect for people as knowledgeable about their experience and standpoint, (ii) include those from different social positions in relation to the topic, and (iii) focus on the everyday work that people do. This approach aims to develop the researchers’ understanding of how people's lives, activities, and experiences are shaped by a particular social context. Through this focus on people's work and daily activities, IE interviews contribute to our understanding of how larger social relations and discourses are developed, sustained, and governed (DeVault, 2006).
Within the IE method of enquiry, texts are viewed as shaping and coordinating the activities of people across different moments in space and time (Campbell & Gregor, 2002; Smith, 2005). IE understands power relations within our contemporary social world as mediated by texts: organizational policies, forms, standards, diagnoses, legislation, professional registrations, street signs, funding mandates, TV programs, and intake forms, among many others (Smith, 2005). The key commonality of these widely disparate texts is that they are translocal; they do not rely on people being in the same place at the same time in order to receive and respond to them (Gibson, 2016). Any digital, visual, or recorded element that can be viewed/heard/received by an audience and that is separable through time and space from the creator(s) is included under this definition of ‘text’. In the digital era, texts can be even more wide-ranging, since so much of what people receive and do is (potentially) durable and transmissible.
In the Neurodiversity Matters project, people from different institutional positions and experiences were asked to select and reflect upon texts that they deemed meaningful. While the knowledge and insight of the participants is assumed to be shaped through dominant discourses and institutional texts, it also represents an ‘activation’ of texts (Gibson, 2016; McCoy, 1995) in ways that perhaps the creators and other users of these texts might never have considered. In addition to relying methodologically on IE throughout, our approach was influenced by disability studies critiques – and particularly by neuroqueer and crip theory, with their connections to feminist, queer and queer of colour notions of resistance and repurposing (Hamraie & Fritsch, 2019; Kafer, 2013; McRuer, 2006; Munoz, 2009; Yergeau, 2017). We are indebted to such critical scholarship that shows how people who inhabit marginalized positions create and repurpose texts in deliberately anti-canonical ways. Such repurposing can promote more liveable alternatives than can otherwise be imagined and enacted through the dominant culture (Piepzna-Samarasinha, 2018; Schalk, 2018).
Participants
We interviewed 60 people about neurodiversity, and included a specific analytical focus on how texts are a part of people's understandings, feelings, and practices related to neurodiversity. Participants were all adults living in South-Central Ontario and used the language and concept of neurodiversity in relation to their own identities, roles as service providers or educators, and/or familial relationships.
Participants were recruited through a combination of disability organizations, self-advocacy organizations, the research team's networks, disability studies networks, and social media (Facebook and Twitter). This paper focuses on the 44 participants who discussed the language and concept of neurodiversity in relation to their identity; we designate this group as ‘neurodivergent’ since this is the term that is most commonly applied at the level of individual identity (Chapman, 2022; Zaneva et al., 2024). We are choosing to highlight findings from neurodivergent participants both because they were especially passionate about texts and as part of our larger aim to centre marginalized perspectives that are often excluded from dominant understandings of ‘expertise’.
Data Collection
Interviews were conducted initially in person and then on Zoom due to public health restrictions associated with the COVID-19 pandemic. All interviews followed a semi-structured interview guide, and the questions were provided to participants in advance. While participants were offered the opportunity to use a range of accommodations in the interview, all participants elected to do the interview through spoken language – with some following up by email to clarify or expand upon points later, or to request alterations to short passages of the interview. Demographic information about the interview participants is presented in Table 1. Interviews usually lasted 45–90 minutes, with the longest interview running for 2 hours. Participants received a $50 honorarium. All research protocols were approved by the Ethical Review Board at the Office of Research Ethics at the University of Waterloo (protocol number: 41334) and all approved protocols were followed.
Neurodivergent participant demographics
ADHD: attention-deficit hyperactivity disorder.
These participants reported that they would be struggling to meet their basic needs if they didn’t have ongoing financial support from parents, partners, or friends. Some lived with family because of this financial pressure.
The interview questions invited participants to share their thoughts, feelings, and experiences related to neurodiversity and to reflect on practices and policies that they would like to see change. Prior to the interview, participants were asked to select a text that had influenced their ideas or feelings about neurodiversity. Texts were defined as any kind of record that could be revisited, whether it was a book, a film, a video game, a blog post, an article, a website, a TV show, a handout, a form, a piece of music and so on. Within the interview we asked: How has this document or text that you selected influenced your experience of ‘neurodiversity’? We also used a series of follow-up questions as needed to understand the participant's experience in more depth: Where did you come across it? What do you think it contributes? What do you think it's missing? What thoughts or feelings come up when you look at it? What experiences does it remind you of? While this discussion of a particular text was only one part of the larger interview, participants also discussed other texts and media throughout the interview. Many discussed their selected texts in relation to other texts and in consideration of the larger representational landscape. We did not ask for, view, or keep any copies of the texts received, but relied on the interviews themselves as our data.
Data Analysis
Data analysis was guided throughout by the commitments and practices of IE as both method and methodological approach that shapes the research design, intention, and analytical process. The interviews were audio-recorded and then professionally transcribed; during transcription, all identifiers (organizations, places, names) were removed. Transcripts were analysed by research team members including but not limited to the authors, using NVivo software to support the process. Analysis involved multiple close readings of the interview transcripts with a particular focus on the ways texts featured in each interview (Gibson, 2016; McCoy, 1995, 2006; Smith, 2005). We paid attention to the texts that were officially selected for discussion, those that came up in passing or incidental ways, and those that served to coordinate participants’ experiences at the level of identity and culture. The first stage of our analysis involved categorizing the texts by genre (e.g. self-help materials, academic articles, novels, TV shows, etc.) and thinking about the ways that practices and power show up differently across different kinds of texts. We examined the ways texts were discussed and evoked in individual interviews and also identified commonalities and distinctions that emerged across the interviews. Then we asked ourselves what social relations and discourses were shaping these patterns, identifiable behind the different texts and experiences that people shared. Next we paid particular attention to text–action relationships and analysed the transcripts with an eye to what texts were doing in people's lives and in the world – to the actions, practices, and stories attached to texts. This process extends beyond a description of specific texts or a designation of themes that moved across different participants’ experiences. It is instead grounded in IE's foundational premise of working to explicate the translocal social processes and discourses that shape how everyday relations are produced through and alongside texts (Gibson, 2016; Smith, 2005). Throughout, we focused on the ways that power is produced through textual relations and the attendant ways that people can repurpose, refashion, and resist texts, and narrowed our focus to highlight the interviews with neurodivergent participants. Finally, during our extensive writing and revisions process, we broadened our lens further to consider what these emerging findings on the meaning and practices neurodivergent interview participants associated with the concept ‘neurodiversity’ in their discussion of texts could tell us about contemporary systems of representation and institutional practices. These different analytical moves built over time but were not entirely linear and strictly sequential, following the investigative practices of IE methods where emerging understandings influence further practices and questions (Smith, 2005). In presenting our findings, we used quotes from interviews to illustrate where relevant; however as IE relies on observing and analysing trends, patterns, and power relations (rather than thematic groupings), some sections provide a synthesis rather than direct quotations.
Findings
Across these 44 interviews with neurodivergent individuals, participants discussed a wide range of experiences and beliefs surrounding neurodiversity. The type of texts selected by these participants have been summarized in Table 2; we cannot identify all the specific texts selected because several people shared texts they had been part of creating and this identification would pose confidentiality concerns. We found that neurodivergent participants tended to be particularly invested in texts and came to the interviews with a lot to say about their selected text. Compared to the other two groups of participants (those who use neurodiversity in their work or familial relationships), the 44 neurodivergent participants had stronger associations and feelings related to texts. Whether these participants discussed a text they loved, fundamentally disagreed with, or had created themselves, they tended to bring emotion into their discussions in ways that were less frequently in evidence among the non-neurodivergent participants’ engagements with texts. Neurodivergent participants also described the most passionate feelings about representation of all kinds, including the impact of fictional and diagnostic representations.
Types of Texts Selected by Participants.
TV: television.
Some participants selected more than one text, and one participant did not select a text.
Beyond the texts that people specifically selected to discuss, many interview participants mentioned shows, films, websites, comics, and other texts in passing throughout the interviews, which led to an even larger pool of texts that we considered in this analysis. We examined the ways in which texts became an important part of how people made meaning of and acted upon the concept and language of neurodiversity, as presented in their interviews – and not simply which texts people identified as significant. Nevertheless, we will note two texts that were formally selected for discussion by more than one participant each: the popular non-fiction book NeuroTribes by Steve Silberman, and John Elder Robinson's Psychology Today article titled What is Neurodiversity. There were both common and notably diverging feelings and opinions about texts that were casually mentioned across multiple interviews (but not officially selected by participants). On several occasions, one interview included a discussion of the positive effects of a text that other participants described in much more negative terms. Thus, no universal consensus or common ‘canon’ of neurodiversity texts emerged from these interviews.
Our analysis of these 44 interviews solidified into four main findings as related to how participants talked about texts in relation to the language and concept of neurodiversity, and what these discussions revealed about structural relations in contemporary Ontario:
Connected and disconnected groups: Overall, we found that there were distinctive differences in people's discussions of neurodiversity and texts across two loosely formed groups of participants: those who had a lot of social and/or textual connection to the concept and language of neurodiversity, and those who were more novice or isolated in their considerations of the concept. Boss texts: Several ‘boss texts’ (explained below) influenced many participants’ identities, actions, and experiences related to the concept of neurodiversity. Specifically, the film Rain Man, Silberman's book, NeuroTribes, and the professional guide of the Diagnostic and Statistical Manual of Mental Disorders (DSM) operated as key cultural and institutional texts that shape sociocultural representations and experiences of neurodivergence. These boss texts were present in the interviews even when participants had explicitly selected other texts for discussion. Restrictions and possibilities in representation: Participants’ discussions offered a window into the complexities and limitations of the current representational landscape as related to neurodiversity. These representational hopes and fears were more evident in discussions of popular texts such as TV shows and films. Whose knowledge counts? Participants’ discussions of texts illuminated a broader set of exclusionary epistemological relations where neurodivergent subjects are often denied the credibility and expertise afforded to (presumed) non-neurodivergent ‘professionals’. This concern with the politics of knowledge was most evident when people discussed the relevance and use of texts by neurodivergent authors.
Connected and Disconnected Groups
One of the central findings from this project was that there were two distinctive sets of experiences around neurodiversity and community: (1) people who were very connected to communities where the concept and implications of neurodiversity circulated through discussions and relationships, and (2) people who had few people in their lives who even understood, let alone discussed, the concept and implications of neurodiversity. While both the ‘neurodiversity connected’ and ‘neurodiversity disconnected’ participants talked about texts as being a meaningful part of their understanding and experience of what neurodiversity was, the ways in which they engaged with these texts differed.
The more ‘neurodiversity connected’ participants were selecting, discussing, and regarding texts about neurodiversity as a part of their other community relationships; these relationships were based in neurodiversity-related social media (e.g. neurodiversity-themed Facebook/Meta groups), and/or neurodiversity-related activist/advocacy networks (e.g. Mad-identified student groups, Autistic-led advocacy groups). Activist and online connections overlapped, since most activist groups also incorporated an online component. For participants who described strong connections to online and activist communities where neurodiversity was a focus, their selection and discussion of texts reflected these ongoing conversations. They described texts that had been recommended to them by others, or that had been posted on Facebook groups or online blogs or through personal networks. Texts became a way for them to contribute to other conversations, such as when they shared texts with service providers, clients, family members, or friends. They had strategic reasons for using the texts that they did. People who were very connected to online groups focused on neurodiversity and/or Autistic and/or disability activism were exposed to a wide range of resources, terms, debates, and critiques by and for neurodivergent people. Individuals who were in these circles were also more likely to object to or reject the most readily available representations, such as mainstream TV shows. To add to this circulation of ideas and identities, social media and online resources offered spaces for people to connect and create community based on their common passions for certain texts and topics. The use of social media was not limited to any one group of participants, but only neurodivergent participants talked about ‘fan-based identities’ as a part of engaging with neurodiversity.
For ‘neurodiversity disconnected’ participants, their selected texts offered a means to address their experience of isolation. These participants shared accounts of knowing few people who used the language and ideas of neurodiversity, and experiencing few opportunities to share thoughts or resources about neurodiversity. Indeed, a few people actually participated in the project as a means to talk and learn more about neurodiversity. This was a surprising finding in any research process, and indicated both that discussions of neurodiversity are scarce for some people, and that people are simultaneously eager to learn more and engage further. For these disconnected participants, popular media such as provider websites and TV shows offered their primary means of learning about neurodiversity and feeling themselves to be a part of a community that they could not readily find in other ways. This group of participants was, in general, less critical of popular media texts and service provider representations. They were unlikely to cite other people's perceptions of dominant portrayals of neurodiversity; instead, they discussed what had mattered to them personally about these shows, books, or websites. Thus, the opinions and ideas of the neurodiversity-disconnected group about these common texts were less politically oriented, and often more positive and eclectic, than those of the neurodiversity-connected participants. As an overarching observation of our conversations with participants, this finding did not come through at the level of quotations or texts selected in the same way as the other findings. IE approaches to investigation urge researchers to offer this type of broader delineation of social organization that can elude more individualized texts and experiences (Gibson, 2018; McCoy, 2006; Smith, 2005).
Boss Texts
In Dorothy Smith's (2005) terminology, ‘boss texts’ influence and shape large swathes of people's experiences and discussions. Identifying boss texts and their effects is a central strategy in IE analysis not only because their influence might not be immediately identifiable to those most affected, but also because they are a nexus through which social power operates, and a possible target for the production of meaningful change. The three texts described below emerged as boss texts in our analysis.
Rain Man
The film Rain Man (1988) offered a starting example of a text that was seen as influencing a range of other beliefs and interpretations people encountered about autism. In some interviews Rain Man was used as an interactive shorthand for a limited and limiting stereotype of Autistic people – one that directly affects what people assume, and even who can be diagnosed. These conversations about Rain Man showed the impact of a restrictive cultural context in which few options exist for to Autistic and other neurodivergent people to identify with. Some participants articulated what the concept of neurodiversity meant to them in part by contrasting their present understanding with the representation of autism seen in Rain Man. Of note is the fact that several participants used the film as a point of contrast without further description or contextualization. Participants assumed a common understanding of Rain Man's depiction of autism, illustrating the film's powerful and ubiquitous influence. For example, this participant brought up Rain Man as a short-hand to articulate a particular set of deficiencies common to dominant representations of autism: Interviewer: What do you want people to understand about neurodiversity? Speaker: I want people to understand that it can connote positive differences, perspectives, mindsets, skills, passions. Those are the associations I would love people to have with the term. I would really love people to associate it with these sorts of levels of giftedness, of passions, of atypical perspective, a certain amount of creativity also, rather than associate it with deficiencies, like Rain Man.
While this participant offered quite a few details about what she hoped others would take away from the concept of neurodiversity, she let a single mention of Rain Man sum up the deficit-centric perspective she saw as contrasting with neurodiversity.
NeuroTribes
Perhaps unsurprisingly, mainstream author Steve Silberman's (2015) bestselling book NeuroTribes: The legacy of autism and the future of neurodiversity was discussed by many participants as a highly influential text. This book follows the history of autism as a diagnostic category, combining stories of different researchers with descriptions of individuals who might or did attract the label of autism, culminating in a discussion of Autistic advocates and some parents who have argued for a shift to ‘neurodiversity’ over ‘pathology’. Several participants described this book as the place where they had first encountered the term ‘neurodiversity’.
One Autistic activist and parent talked about how the book allowed her to reclaim her own identity and situate herself in history: I like the history aspect of it because… as someone in my 40s, I was able to place myself within history and a lot of the blogs and things that I had seen before his book were so much about the now. But for me, my identity is rooted in the past, in history, so I didn’t really understand, before, anything about how it was conceived at the time of my own childhood. I think it's an incredibly powerful book and he gets a free pass from everyone. Even though he's not Autistic, he gets a pass because he's a historian, like he really gets it and he's given us something, as a historian, that only a historian could give to us.
In addition to reflecting on the historical component of Silberman's work, this participant spoke to the fact that Silberman was generally accepted and appreciated in Autistic communities even though he himself was not Autistic. Silberman was given a ‘free pass’ because his book was seen as very valuable, and in this sense, he held a relatively unique position in Autistic communities. Indeed, several participants described interacting in some way with Silberman, including through social media (e.g. Twitter) and podcasts. The sense of common purpose in improving systems and challenging practices made Silberman seem like a member of their community. Participants also acknowledged that Silberman could also get more access to a mainstream audience as a non-Autistic writer in a social landscape that rarely acknowledges Autistic people's own expertise.
This individual also used NeuroTribes strategically as a ‘litmus test’ with service providers: I gave it to [my child's] first GP and then we had another meeting with him and he clearly had not read it, and then we switched to a new GP and I gave the book, and then I said, “Oh, what do you think of the book?” She had something to say about the book and it was important for me that the GP was engaged enough to actually look at the book. I’ve done that a few times with people to sort of check them out.
This type of deliberate sharing and pointed discussion of texts shows how actively some participants incorporated texts into the work of navigating service systems. For this participant, sharing NeuroTribes with providers offered a concrete way to determine who she could trust to work with her family.
An Autistic service provider talked about NeuroTribes as a source of needed validation: The book NeuroTribes was really great because it was a big wave of validation. It was great to learn the history… and I felt like I met a new friend. I listened to it for a really long time on my way to and from [a social work] placement. Sometimes, I just cried in the car because there were things verbalized. First of all, it's really good research. Second of all, it's really well written, in a seamless way. His voice is soothing, and it does sound like he cares. That book informed me about neurodiversity, but also filled me with love and appreciation for my people. By that, I mean other Autistic people… I now recommend it to everyone.
In often isolating situations, texts could offer connections across space and time, and create bonds with a larger Autistic community. The process of recommending or loaning texts to help generate community and shift the social landscape was described by a number of participants.
One educator who had ADHD emphasized NeuroTribes’ centrality in rethinking his teaching: My spelling was a huge issue for all of my studies, so if I had a student prior to university, in my special education career, I might have tried to work with them to try to find ways for them to learn tricks so they could pass spelling tests, whereas now if I had a student like that in my class, I just wouldn’t make them do the spelling tests because there's no benefit and only negative would come out of doing it that way… I don’t know if it was specifically the term neurodiversity, but I think reading NeuroTribes … [led to] understanding the idea that trying to force prescribed behaviors in someone where they have no benefit doesn’t make any sense.
This participant saw Silberman's work as key to the expansion of neurodiversity to a larger, more mainstream audience: I would say the book is probably one of the major ways that the concept of neurodiversity was spread. I don’t know for sure if that's the case with everyone, but I certainly encountered the book long before I knew who Judy Singer was. I’m sure he mentions her in the book, but I assume he's the gateway for a lot of people. I found him on Twitter. You occasionally see a lot of people thanking him for it. I think that, as daunting looking a book as it is – it's fairly thick – it's the more common public entry to the term and the concept.
As seen in this quotation, people often also brought up Judy Singer as an originator of the term ‘neurodiversity’ alongside their discussion of Silberman's work. However, nobody selected Singer's thesis (1998) or subsequent writing on neurodiversity as central texts to discuss in the interview.
Diagnostic and statistical manual of mental disorders
The relative influence of a text may be most powerful when it is present without the same level of conscious selection and choosing – as something that ‘comes up’ in the conversation, even if another text has been officially ‘selected’ for discussion in the interview. The Diagnostic and Statistical Manual of Mental Disorders, or DSM, the cornerstone of all psychiatric/psychological diagnoses, was a central text that participants mentioned in an incidental or underlying way, as something that could not be avoided across settings and relations. The DSM criteria are used in determining whether people receive diagnoses or not – even, to some extent, among the growing number of people who diagnose themselves. Many participants talked about the impact of diagnosis in their own lives, and some specifically talked about the DSM as a text that required further examination and critique.
While nobody specifically selected this text for the interview, the DSM was referenced across all the interviews and operated as a shadow document to the participants’ discussion of what neurodiversity meant to them. One Autistic participant who had other psychiatric diagnostic history talked about neurodiversity as a way to validate their own experiences beyond the diagnostic framework outlined in the DSM: I feel like just the fact that autism is a DSM diagnosis sort of enforces that it's a disorder and something that needs to be fixed. It's very medical model, just the fact that it's in the DSM, whereas neurodiversity isn’t, so it avoids the trap of the medical model and limiting people to nothing but a diagnosis. I feel like [neurodiversity is] also sort of empowering, like it came out of an activism community that believes there's nothing wrong with us, that we’re just different in the way we are and that we should be allowed to think and stim and just be who we need to be…
For this participant, the need for and value of the concept of neurodiversity was intimately connected to the problems that a diagnostic framework imposes on neurodivergent people and their place in the world.
The thorniness of diagnostic categories was expressed across all of the interviews, but was felt most acutely by those who had experienced the process and limitations of being diagnosed/seeking diagnosis. While some participants identified diagnostic challenges in terms of gender (e.g. providers only looking for neurodiversity in boys) or race (e.g. diagnosis being less available to BIPOC communities), others objected to diagnostic frameworks as inherently insufficient and pathologizing. As a text, the DSM was central, unavoidable, and resented. The concept of neurodiversity presented an alternative and a critique. Participants knew that the DSM document was created, revised, and deployed by people who were removed from their own experiences and their communities, but who had a great deal of power over their lives.
Restrictions and Possibilities in Representation
The most capacious and varied category of texts that participants discussed were fictional portrayals of neurodiversity; these discussions illustrated the complexities of navigating the current representational landscape as a neurodivergent person. Participants discussed cultural items they felt passionately about. Interestingly, only some of these texts had an explicitly stated connection to neurodiversity. In many cases, participants instead identified fictional texts as related to the concept of neurodiversity based on how those texts framed, reflected, or represented traits and experiences that participants associated with neurodivergence. The most common neurodivergent identity that people discussed in the project was autism; unsurprisingly, the most common fictional portrayals they referenced were focused on autism as well.
Participants selected a number of texts from contemporary popular media, and often differed in their assessment of whether these representations were validating or limiting. For example, one White, female, Autistic participant selected the TV series The Good Doctor and talked about its positive influence on her and her community experience: ‘I really like the show, The Good Doctor, for example. I quite like the depiction of autism in that. Freddie Highmore is very cute. He's not Autistic, but he plays autism very well. Most of his fan base is Autistic females anyway’. This participant's engagement with the selected text went beyond passive viewing and into participation with an online fandom. Her first encounters with the language and idea of neurodiversity came from around the same time that she started watching the show: Yeah. The thing is, I self-identify as an Autistic person and neurodivergent. I first heard the term neurodiversity – you were wondering how I first heard about it. Well, I first heard about neurodiversity just from other Autistic people, I think only about a year ago, maybe 2–3 years ago I first heard about the term. Maybe the time The Good Doctor started coming out. That show had really brought autism to the forefront.
For this individual The Good Doctor led to her experience of an online, Autistic community:
Another mainstream TV show, The Big Bang Theory, was also discussed by participants as a popular representation of Autism. One White, Autistic woman talked about identifying with The Big Bang Theory's Sheldon, a White, male character that many people commonly view as Autistic – although this diagnosis/identity is not officially stated. She contrasted Sheldon's portrayal with the ‘extreme’ examples of The Good Doctor or Rain Man. I think the entire eight seasons of Big Bang Theory, for me, was the one that really accurately and in your face demonstrated neurodiversity, without ever admitting that that's what it was. For me, it was the first time I had ever seen someone like me in a role that wasn’t like The Good Doctor or Rain Man or something of the extreme in Hollywood… My husband is, like, “Yup, that's you, that's you, that's you. Yup, you do that. Yup, yup, yup.” Little checkboxes when we watch it or rolls his eyes or looks at me. I’m Team Sheldon. I get that. I know I do that. It's just fun to watch and a lighthearted way to watch neurodiversity in action.
This participant talked further about identifying with the White, pansexual character of David on another TV comedy, Schitt's Creek. In this show, she offers examples of David representing Autistic experience, concluding that ‘He does a really good representation of our community’, even though this character is never described as Autistic in the show. For this participant, feeling seen and accurately represented in media was more important than whether characters were written to be explicitly neurodivergent.
For other participants, however, both The Good Doctor and The Big Bang Theory offered examples of the limited representations of Autistic people as almost exclusively White, male, and interested in science. One participant who identified as a gender non-conforming person of colour stated: One day, I was in [this subway station]. You know how some stations cover from top to bottom in ads? At one point, [this station] had Atypical, Big Bang Theory, and The Good Doctor all being advertised at the same time. I was like, oh my god, I can’t deal with this Whiteness anymore… every time I see autism in pop culture, it's almost always a White dude. It's become so tiring. Even the fact that not even White women are featured is bad enough.
For this participant, TV shows created and perpetuated a landscape through which certain experiences of neurodiversity are highlighted over and over – and others are excluded. This lack of representation means that people are ‘tired’ and feeling they ‘can’t deal’ with their ongoing invisibility and exclusion.
These interviews highlighted that commonly accessed popular texts can be interpreted and responded to differently by different people, even as these commentators might share other aspects of identity. The restricted range of representations of neurodiversity and neurodivergence can also mean that many people connect with characters whose ‘Autistic’ or ‘neurodivergent’ identities may not be explicitly stated, and/or even as they acknowledge the gaps between these representations and their experiences. For example, one White, Autistic, woman talked about a social media post on the film Lilo and Stitch: The text I picked is a Facebook thread. Somebody made a long Facebook thread about how and why they think Lilo Pelekai from Lilo and Stitch is Autistic. It's a go-through of some of the scenes from the movie and Lilo's odder behaviors and an explanation of how an Autistic or neurodiverse identity might explain them. For me, this whole thread was really enlightening because I always really identified with Lilo and the way that her behaviors are looked at by everybody else as really strange and often inappropriate. She just doesn’t seem to cotton on that other people are looking at her strangely, and that really hits home for me.
The participant saw Lilo as a largely ‘positive portrayal’, but also reflected further about what it means to have representations of your experiences that are not explicitly labelled as Autistic: I don’t know what the creators intended or if it was meant, but I think pop culture does have a habit of creating characters with all of the characteristics and traits of an Autistic person, without ever using the word autism. Because then it's possible that it can appeal to mass culture and people can enjoy that character and laugh at that character without ever considering the fact that it may be ableist or stigmatized or what have you. So, it resonates, but there's also a double-sided blade there of: if this character was created with these traits and autism is never actually used, is it because pop culture wants to laugh at Autistic people without saying it?
For this participant, the trend of having characters be unlabelled in terms of neurodiversity may produce a certain kind of harm, in that the audience members are unlikely to examine their own assumptions.
Another participant selected a video game, Persona 5, in which she related strongly to a character who was not officially labelled in terms of neurodivergence. She described the emotional impact of seeing the game's hero responded to with support and acceptance: They [other video game characters] need her help, which is so nice to see, as a [chokes up] super anxious person who stayed home from school and none of my skills were considered valid, to see this other girl who was super anxious and stayed home from school and she has this messy, horrible room and her parents don’t consider her skills valid, to have the heroes of a game come in and say we need your help… they noticed her room was a fucking tornado and nobody judged her. The group was literally like, “Wow, she must be really suffering,” and they cleaned her room. [chokes up] They cleaned her fucking room. Nobody was like, “She must be lazy.” Nobody was like, “You’re not trying.” Nobody was like, “You don’t care about cleanliness.” They just cleaned her room for her and I just fucking lost it. I sobbed for hours because that would have made all the difference in the world to me, for somebody to come in and say they needed my resources, my skills, and to clean my fucking room for me [laughs], instead of judging me.
This game opened up new representational possibilities for this participant because it showed a world in which the character's struggles were responded to with compassion. In some ways, the character was ‘read’ as neurodivergent – but the relationships and context also showed ways in which the concept of neurodiversity could be enacted in relationships.
Literature also opened up room for conversation and reflection. One participant described a novel that made her think about neurodiversity as a person who had an Autistic sibling and identified as living with anxiety and ‘probably’ having ADHD: There's this book I read way back when, called House Rules by Jodi Picoult. It's an interesting book. It's about this kid that has Asperger's, autism, and he lives in a very structured schedule and his mom makes sure that's his life, but then he's accused of murdering his tutor. [laughs] Yeah, it took a hard left there. …It's an interesting book because it reminded me, like the mom, I definitely saw the parallels between the mom and my mom, where the mom really wants to keep a super-structured schedule for the Autistic child. Oh, and there's a brother that the main Autistic character has, that reminded me of myself [laughs], and he's very upset a lot of times at how he feels his life has to revolve around his Autistic brother's life and he just wants to leave the household and have this whole other life outside of the brother.
This participant's engagement with a fictional text offered room for her to reflect on dominant practices and beliefs related to neurodiversity without having to take a definite stance with regards to her family or herself: Yeah. Even in this House Rules book, I saw where they were like, okay, this is your schedule, this is your medication. That's your life. It's like, okay, what else does this Autistic child like and want to do with their life? How can we tie that into their life too? Maybe that will help them. Or it could create more triggers, but I think that's a part of the journey. I don’t know.
Fictional portrayals could be interpreted a variety of ways, and this fluidity allowed many participants the opportunity to sort through their own identities and assumptions. Neurodivergent participants were passionate about the possibilities and the dangers of fictional representations, and mindful of the ways in which fictional portrayals could connect them to or isolate them from community.
Whose Knowledge Counts?
In addition to illustrating the nuanced ways many participants engaged with fictional representations of neurodivergence, our analysis also revealed the ways that participants grappled with a complex set of power relations related to expertise and credibility. Many participants made strategic use of ‘professional’ texts, recognizing that they conferred a degree of credibility not afforded to other types of texts. For example, one psychotherapist talked about having developed a list of resources for clients: ‘I’ve noticed that I have spent quite a bit of time curating a list of things that I think are positive or affirming or provide some theory or some grounding for a lot of things. …I understand that when you’re trying to navigate in the world, sometimes it helps to refer to something or name-drop’. The search for, review of, and dissemination of texts was something that many of the participants did on a regular basis, particularly if they were working in a professional role or engaged in community or individual advocacy roles.
Some participants also talked about the historical prevalence of professional or research publications as the main (or only) form of information available about neurodivergence. Two people discussed the work of researcher Tony Attwood. One participant selected Attwood's book, Asperger's Syndrome, to discuss because it was one of the only texts available when he was diagnosed and forming an identity: Why I chose this book is because this was the only book when I was… what year was it published? 1998, I think. Yeah, 1998… The first book is [from] when I graduated from high school, so going from that, where when I’m a kid, we didn't even have books that you can refer to… Now we have neurodiversity, now we have people posting on YouTube, their experiences of being on the spectrum. There's that young woman from [city] who is doing TikTok videos…. [It] show[s] how far we have come, from having nothing to everything, basically. It's very interesting. Going from having only professionals talk about autism and Asperger's and that sort of thing, to now people themselves talking about it, bringing in other people, like people with ADHD and all this stuff, so how far things have really come that now it's almost expected that you have people with autism and neurodiversity and they talk about it themselves. That's quite a way.
Participants also objected to the enduring power held by experts and professionals in discussions of and decisions around neurodiversity. Many brought in an extensive archive of texts that were produced by neurodivergent creators – including themselves – which offered a possible response. Such texts also offered the emotional, personal connection that they sometimes found in the fictional representations – but in a way that was more directly connected to lived experiences and could have an impact approaching that of ‘expert’ documents. Indeed, in the production of these texts, people who openly identified as Autistic, ADHDer, disabled, Mad, and otherwise neurodivergent were claiming their experiences as important forms of expertise.
Accounts of personal experiences were a significant source of interest and learning for participants. Older memoirs by Autistic women Temple Grandin and Donna Williams were mentioned across the interviews, although not specifically selected by any of the participants. One participant did select a more recent memoir called How to be Autistic by Charlotte Amelia Poe but did not talk extensively about it. The edited collection All the weight of our dreams: On living racialized autism was discussed by participants as an important response to the overwhelmingly White representation of autism in mainstream culture and neurodiversity activism. For many participants, texts by Autistic researchers could be powerful. An Autistic participant talked about (and read several passages from) John Elder Robinson's writing about neurodiversity, and highlighted how much more meaningful his books and articles were because the author was Autistic. Another Autistic participant was eloquent in their discussion of a research article called ‘The Misbehavior of Behaviorists’ by Autistic scholar, Michelle Dawson: To see that being written by someone who is respected in the community and to see that I’ve come to a lot of these conclusions on my own is like, I know I’m on the right path. I know that this is what is right and this is what is true, because how could it possibly be that two people who have never met each other, one of whom has professional experience going on years and years, and me, who is just a kid who is still in college, we’ve both come to the same conclusions?
These texts were seen to speak back to powerful voices and dominant representations in ways that included but also went beyond singular identities. Participants often credited sociologist Judy Singer with the creation of the term ‘neurodiversity’, and usually mentioned that she was Autistic. Other professional texts that participants mentioned were by neurodivergent authors included Am I Autistic? A Guide to Autism and Asperger's Self-Diagnosis for Adults by Lydia Andal, and The Asperger's Handbook by Alina Kislenko.
For many participants, discussions of neurodivergent experience had moved to online spaces by authors/creators who were primarily focused on connecting with and advocating for neurodivergent communities. Many participants named creators who were known to discuss neurodiversity and related activism online. The designation of ‘a text’ became increasingly challenging as people discussed social media. While people often talked about Facebook groups or other social media venues as primary sources of information and ideas about neurodiversity, they were simultaneously sharing their own ideas in these spaces. The lines between ‘audience’ and ‘creator’, ‘text’ and ‘community’, were impossible to draw with any certainty.
Activism and advocacy were central features in many interview discussions of selected texts, and the connections between texts and activism were clearest for participants who talked about creating their own texts. Because of confidentiality guidelines, the specifics of these texts cannot be shared, but the range of genres and purposes was striking. Several participants were engaged in other research projects related to neurodiversity. Several were artists who created and disseminated visual work on the topic. Some wrote non-fiction, personal essays, and stories. Some wrote texts specifically addressing service providers such as psychotherapists or counsellors. The extensive involvement of the project participants in creating new texts about neurodiversity underlines how inadequate and harmful many participants found the most readily available resources on neurodiversity and related identities. The representational gaps and failings that participants noted across these interviews had led many of them to create their own alternative texts in order to communicate the community's experiences, to improve service experiences, and to advocate for social justice.
Discussion
In this paper, we have argued that texts are a part of lived experience – and that qualitative researchers need to regard them as such. Texts are not only a background influence on a large-scale, cultural level, but are also part of people's everyday activities, emotions, and relationships. Texts are resources that people work with, challenge, repurpose, and otherwise activate. When we investigate large-scale, socially complex constructs such as neurodiversity, it is not enough for us to either assess the sociocultural landscape or learn about people's individual experiences. Instead, we need to investigate the connections between the structural/discursive and the everyday, since each is only ever possible through the other. Asking people about their relationships to and their uses of texts offers a way in which to accomplish such investigations and allows us to analyse social relations as activities that people engage in, recreate, and resist (Gibson, 2016; McCoy, 2006; Smith, 2005).
IE has been at the forefront of thinking about texts in complex ways, developing methods that analyse texts as means to (1) reveal how society is structured and (2) understand the hierarchies that organize people's everyday experiences. Some research topics lend themselves to mapping text–action chains in organizations or programs with a central regulator or funder (see, e.g. Gruson-Wood, 2016, on applied behavioural therapies in Ontario), however a topic such as neurodiversity is not bound to a discrete institution or regulatory framework. There is no singular hierarchy of texts related to neurodiversity, but rather, a plethora of texts that people read, watch, suggest, comment on, discuss, critique, write, share, and create. In this project, we integrated the process of textual analysis into the interviews to understand the range of perspectives and experiences that people bring to a topic that they find significant in their everyday lives and relationships. Thus, this project has not attempted to analyse the texts that people brought to the interviews. Instead, it has been a means of examining what roles texts play in how the concept of neurodiversity is understood, responded to, and taken up by people who engage with it in their everyday relationships, work practices, and identities.
What can we say about texts as a part of how the language and concept of neurodiversity is currently understood, experienced, and enacted in people's lives? Our interviews show that for most of the participants in this project, texts were a central way in which the concept and language of neurodiversity was understood, enacted, and communicated to others. The stories that participants told us about texts revealed how integral texts were in what people did. These textual discussions were interconnected with participants’ relationships, identities, feelings, and beliefs. Participants talked about texts alongside their conversations about community. Indeed, this study shows that texts can be a core part of people's experience of community, as interview discussions of texts illuminated individuals’ other social relationships of dis/connection. Texts are not simply representing ideas: texts are actively connecting people to each other. Even still, our findings also illustrate participants’ shared experience of a dominant representational landscape that reproduces the social exclusion of neurodivergent people, especially neurodivergent women, trans and non-binary folks, and people of colour. All the participants contended with socially dominant representations of neurodivergent people that are stereotypical, restrictive, pathologizing, and steeped in gendered and racial bias. A growing number of scholars have critiqued the Whiteness of neurodiversity as a concept, movement, and paradigm (e.g. Botha & Gillespie-Lynch 2022; Cheng et al., 2023; Giwa Onaiwu, 2020; Nair et al., 2024). These authors argue that Whiteness remains ‘the foundation upon which neurodiversity rests’ (Giwa Onaiwu, 2020, p. 61), and assert that the neurodiversity movement's lack of intersectional analysis both makes it complicit in racism and risks its depoliticization (Nair et al., 2024). These critiques were echoed by our participants, all of whom contended with a discursive landscape where the most widely available texts feature stereotypical representations of neurodivergence and have been created with a neurotypical, ablebodied, saneminded audience as a presumed ‘norm’. Any attempt to read neurodiversity into and through these resources required subversion, creation, repurposing, and ignoring of the many dominant and ubiquitous representations that shape people's beliefs and actions about neurodiversity, across different moments and spaces.
These representational findings have implications for research that extends beyond disability studies. A large body of research examining media depictions of neurodivergence exists (see Jones et al., 2023 and Mittman et al., 2024a for a systematic and scoping review of studies analysing media depictions of autism, and Mittman et al., 2024b for a review of media depictions of depression and anxiety), and scholars typically begin from the premise that these portrayals serve an important educational function and influence understandings of and attitudes towards neurodivergent people. From this perspective, it is perhaps unsurprising that questions related to the ‘accuracy’ of media portrayals then feature prominently in research related to media representations of neurodivergence; if people are learning about neurodivergence from media, there's a logical value in ensuring that media is fairly ‘correct’ in its depictions. However, much of this research is also based on the assumption that accurate representation is inherently positive representation. While some authors simultaneously grapple with questions of stigma and stereotype as perpetuated by media, an overarching preoccupation with the ‘accuracy’ of media portrayals of neurodivergence persists. Findings from this study complicate the idea that we should be primarily concerned with accuracy when assessing whether media portrayals are helpful or harmful. Perhaps more importantly, this research adds to a growing body of literature questioning the gendered and racial biases embedded in what we consider to be ‘accurate’ (read: dominant) depictions of neurodivergence and neurodiversity (see, e.g. Botha & Gillespie-Lynch, 2022; Giwa Onaiwu, 2020; Nair et al., 2024).
As a boss text and film that's frequently included in research exploring media representations of neurodivergence, Rain Man offers a salient example through which to examine such tensions between notions of accuracy and the complexities of representation. Nordahl-Hansen and colleagues (2018) evaluated 26 films and TV series against the DSM-5 criteria for a diagnosis of autism and reported that Rain Man is highly accurate in its portrayal of Autistic character Raymond Babbitt; in fact, they suggest that Raymond meets 11 of the 12 criteria they used to assess the accuracy of media portrayals of autism. However, while Rain Man may be ‘accurate’ in its depiction of autistic characteristics as defined by the DSM-5, Babbitt's character is archetypal in its adherence to diagnostic criteria (as Nordahl-Hansen et al., 2018 acknowledge), as well as unflinchingly stereotypical (i.e. Babbitt is a White man, implied to be heterosexual, with savant skills). The frustration and sense of invisibility or exclusion many of our interview participants described when faced with such unrelentingly stereotypical portrayals of neurodivergence are a powerful illustration of the representational inadequacies of even ‘accurate’ depictions.
While Rain Man was released in 1988, similarly limited depictions of neurodivergence persist. For example, a recent review of depictions of autism in film and TV found that three quarters of the 87 characters discussed across the articles were White, more than half were male, only two of those whose sexual identities were discussed were explicitly described as LGBTQIA+, and over one-third (i.e. a highly inflated number) were depicted as having savant skills (Deal & Nordahl-Hansen, 2022). Such depictions not only fail to illustrate the diversity of neurodivergent traits, experiences, and identities, but actively perpetuate dominant and exclusionary representations of neurodivergence in the cultural imagination. This is to say nothing of the fact that many assessments of the so-called accuracy of media portrayals of neurodivergence are made in reference to the DSM or other pathologizing diagnostic frameworks.
Setting aside questions of accuracy, it is also important to consider the implications of (sometimes extremely popular) fictional characters being written in ways that align with neurotypes such as autism while not being diagnostically labelled as such. To use another media example mentioned by one of our participants, Nordal-Hansen and colleagues (2018) found that Sheldon from The Big Bang Theory met 8 of their 12 criteria for an accurate portrayal of autism, though he is never labelled as Autistic. Several of our participants talked about identifying with and feeling represented by fictional characters who are not explicitly labelled as neurodivergent, and in some ways this ambivalence towards a character's diagnosis (or lack thereof) can be seen as a pushing back against the delineating power of the DSM. At the same time however, it is not accidental that characters such as Sheldon are easily ‘read’ as neurodivergent but remain unlabelled. We encourage other scholars to consider the implications of this type of representation. What is lost by not labelling these characters as neurodivergent? What is potentially gained in terms of expanding representations beyond diagnostic boundaries?
Additionally, our findings underscore the need for researchers, providers, and community members to consider the complexities of diagnostic experience, and the role of texts in making diagnosis reverberate through and across different domains of social practice. Other scholars have written about the importance of diagnostic texts in both understanding and moving beyond dominant framings of neurodivergent experience, often examining passages from the DSM to illuminate how it frames autism (see, e.g. Douglas, 2024; Rodas, 2018; Yergeau, 2017). Our findings offer a somewhat different approach, with a focus on the ways that neurodivergent people talk about texts as a part of their meaning-making and interpersonal experiences with the concept and language of neurodiversity, including but extending beyond autism. As a result, these findings show how the DSM shapes power and identity, on top of and beyond its specific inaccessibility or inadequacy for individuals or groups seeking a diagnosis. That is, the ways that institutions use diagnostic texts affects multiple moments and interactions that extend far beyond the diagnostic encounter, spanning across years, institutions, and relationships (see also Douglas, 2024; Gibson, 2016; Hacking, 2001; Tucker, 2009). These findings affirm that, in the current Canadian context, diagnostic texts are unavoidable as a part of the everyday world that neurodivergent people and others all participate in. Our analysis supports the broader argument that, in order to address the social injustices of neurotypical privilege, ableism, and interlocking oppressions such as racism and sexism, activists and scholars must attend to and disrupt the ways in which ‘boss texts’ such as the DSM fundamentally structure our everyday beliefs and practices (see also Chapman, 2021; LaFrance & McKenzie-Mohr, 2013).
Analyses based in IE are attentive to the ways that such texts, and the representations they create and reflect, translocally coordinate people's actions. Power is a central element of representation: who is centred as audience, who is portrayed as protagonist, and who is able to create texts that receive publication/production and acclaim? While it is important to note the unavoidable power of the DSM and the residual cultural reach of Rain Man in shaping people's lives (a reach perhaps emphasized by a review finding that Rain Man's Babbitt was the single most discussed character across 25 articles exploring representations of autism in film and TV (Dean & Nordahl-Hansen, 2022)), it is also important to note the important impact of Steve Silberman's book, NeuroTribes, a text that historicizes the DSM and related diagnostic portrayals of Autistic people and offers cultural commentary on Rain Man. Silberman became the primary popularizer of neurodiversity, a framework and concept that originated in Autistic, Mad, and otherwise disability-identified social movements. Silberman's positionality as a non-Autistic, White, male, apparently able-bodied American author afforded a platform that no other neurodiversity advocates have been able to access. This reality of inequality persists even as the participants in this project largely appreciated Silberman's contribution.
This research also highlights the differences that exist among neurodivergent community members. While an overview of commonly referenced texts can be illuminating, this study has also shown that the discussions of common or overlapping texts contain variability and dissent. The commitment to supporting neurodiversity as a political ideal and movement does not entail a uniform set of beliefs and opinions – indeed, any research that tries to summarize ‘the ADHD perspective’ or ‘the neurodiversity advocate perspective’ will flatten and silence the existing range of ideas and insights that exist. Further, many group identities are partial and strategic rather than essentializing. The research participants flowed frequently across the groups of those who were neurodivergent, those identifying as providers or educators, and those identifying as family members. These divisions have too often been reified in the research literature and in larger cultural discussions.
What does prevail is the differential access to social power and ‘expert’ status experienced by participants such that those who are neurodivergent are often excluded and denigrated. Participants forged relationships with and through the texts they discussed based on how these texts positioned them as social actors; they considered how to use these texts to achieve their own goals within given institutional contexts. In following the effects of professionalized texts beyond the walls of any singular institution, this work offers an important corollary to other IE scholarship that has showed how texts written by professionals bolster enduring power differentials in psychiatric institutional contexts (see, e.g. Daley & Pilling, 2021; Gibson, 2021b). It was not accidental that participants strategically deployed texts created by those with ‘expert’ status (e.g. journalists, researchers) in their encounters with people such as teachers, counsellors, or hostile family members, or even in overcoming the harmful beliefs they held about themselves. The shift toward self-created texts and content also holds great potential in righting this balance, particularly as such texts become more widely available.
Conclusion
Our findings underscore the need for researchers to engage with and listen to the ideas of people who are so often ‘written about’: people who identify as Autistic, as neurodivergent, as ADHDers/having ADHD, as Mad/psychiatric survivors/living with mental illness, as disabled, and as having a range of experiences of exclusion due to gender, race, sexuality, and class. They suggest that researchers need to go beyond referencing other researchers when it comes to neurodiversity. Most participants in this project had done an extensive amount of reading and thinking about this topic and had crucial insights to offer to any researcher or practitioner.
Furthermore, researchers need to attend to what people actually do with the available discourses – and to respect their contributions to the sociocultural landscape. Doing research that asks about neurodivergent people's passions and insights represents a challenge to dominant portrayals of neurodivergent people's investments and experiences as limitations or liabilities rather than as valuable sources of meaningful knowledge and analysis. The term ‘special interest’ has been used in diagnostic materials to denote neurodivergent people's strong focus on less commonly endorsed topics as a ‘symptom’ of neurodivergence; the phrase can carry pejorative associations for some, however, many people in neurodiversity-affirming spaces have begun to reclaim the term and re-assess the value of people's deep attention and commitment to things that others gloss over. This paper employs a methodology that validates passionate and deep attention to texts – including texts that others might discount – as vital acts of knowledge production and dissemination.
Self-advocates are engaged and involved in creating and mobilizing new texts, but are providers and policy-makers listening? From an IE understanding of coordination and ruling relations we note how neurodivergent-authored texts have not, in reports from participants, broadly changed the ‘doings’ of providers and policy-makers. Instead, and despite variable textual reading and creation practices, the DSM remains the coordinating ‘boss text’ for institutional practices (e.g. provider documentation and funding). This is not to say that community-generated texts are ineffectual – they are the means by which those who actively seek alternatives can find and create other versions of diagnoses/identities that they can base community and activism around (Stenning, 2024). But as long as funding structures and provider certification rely on diagnostic texts and other researcher-generated mandates that proceed from a ‘treatment’ modality, the coordinating power of the DSM and resulting treatment manuals remain difficult to contest.
Footnotes
Acknowledgements
This research has been funded by an Insight Development Grant from the Social Sciences and Humanities Council of Canada as well as a Renison University College Research grant and a University of Waterloo-SSHRC grant. The authors are grateful to all who participated in and supported the project. For more on the project and the research team, see 
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Author's Note
Steacy Easton is also affiliated with the Critical Disability Studies, York University, Toronto, Canada.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Social Sciences and Humanities Research Council of Canada (grant number: Insight Development Grant 430-2019-00140).
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.