Narrating the Many Autisms

Front matter

The Routledge Series Integrating Science and Culture

NARRATING THE MANY AUTISMS

IDENTITY, AGENCY, MATTERING

Contents

Preface Acknowledgments

Introduction: Beyond the neurological subject

PART | On Autistic Intelligibility 1 The matter of a first-person perspective

Preface

This book argues against two of the most commonly conceived understandings of autism: that it is either a social disorder at the level of individual neurology, or — if it is not, and if psychology or neuroscience cannot prove that it is such — that it is meaningless and merely “a label’ that does a disservice to those who are thus diagnosed. I will argue that neither understanding accounts for the ethical or political utility of the term, and that both rely instead on stereotyping and a denial of the fundamental urge of all humans to make sense of our experiences and to consider what we think of as normal, desirable, and right for us. This book does not offer an ontological argument about autism, although it is sympathetic to efforts to do so which take into account lived experiences of autism: in line with feminist philosophers of science, it seeks to argue that what autism is cannot be separated from ethical and epistemological considerations and that this, in turn, should not be separated from the cosmopolitical in Isabelle Stengers’ sense. This is because even more ‘affirmative’, but supposedly dispassionate, discourses about autism have consequences for which worlds are brought into being. It centers on the writings of autistic people who show that ‘autism’ names phenomena that are essential in developing a narrative understanding of their lives, even if it is not the only term that they use to articulate what they see as important differences between themselves and those around them. I will argue that the term ‘autism’ can enable us to articulate ways in which we matter to others and others matter to us. In the light of the vast corpus of stories by autistic narrators, which has hitherto received very little critical attention, and in the context of a world in which non-autistic-authored, metaphorical, and ultimately stereotyping representations of autism ‘fascinate’ us (Murray 2008), attending to the moral texture of autistic lives is a necessary and neglected component of liberatory world-making.

This book therefore rests on the assumption that political life, in general, depends on a prior ethical form of mutual recognition, and it further contends that this is only possible when we conceive of others as capable of

Preface ix acting in unprecedented ways rather than as objects determined entirely by biology or social locations. Autism poses a particular challenge to the possibility of mutual recognition because it is stereotypically parsed as an inability to conceive of a mind other than one’s own. Even in more affirmative understandings, autism is regarded as presenting a ‘two-way’ challenge to mutual understanding in the light of autistic/non-autistic embodied differences that produce a ‘double empathy’ problem (Milton 2012). However, the corpus of autistic life-writing demonstrates that autistic narrators do engage in reflexive self-understanding in the light of conversations with both autistic and non-autistic others. Furthermore, they suggest that through the course of a life, autistic people develop a relatively enhanced understanding of the norms that govern social life in their immediate surroundings in comparison to neurotypical peers, due to the need to survive in a predominantly non-autistic world (Milton 2012).

If interpretations of our own and others’ behavior and actions are always guided by our sense of who we are and our existing orientations toward the future, it is important that I disclose that I am autistic. I come to the corpus of autistic life-writing with the desire for more accessible forms of relation, of a future that is genuinely open to difference rather than constrained by the desires of a few. It is clear that my interpretations are partial and based on my limited understandings, even if they have been constructed alongside other autistic people who are working on similar questions. However, in acknowledging my own limits, I do not wish for others to use this as an excuse to discredit my cognitive authority to bring new understandings to light. Autistic narrators often approach social rules critically, with a perspective on how they marginalize not only autistics but also other minorities who are subject to stereotyping and misrecognition. This leads to complex and intersectional identity narratives that serve as the basis of action in the world. While the narrators considered in this study may be regarded as distinctively expressive (Milton 2014a), they demonstrate how narrative sense-making can be a constructive feature of both individual and collective autistic life. In this way, they offer insight into the subordinating norms that have led to the misrecognition of autistic experience and to tools that could expand two-way understanding between different forms of embodiment. Their narratives contribute to a shared cultural repository for imagining ‘new forms of subjectivity, modes of self-understanding, sources of recognition, patterns of attachment and identification, and ways of living together’ (Allen 2010). Finally, while it may be assumed that the dominance of non-autistic interactional norms combined with a monotropic range of interests would lead to autistics having a ‘fragmented’ perception of themselves in relation to others (Milton 2014b), this relies on an assumption that we are fundamentally determined by our neurology and social location. Yet as both social and x Preface material selves, we have recourse to more than introspection and misrecognition to formulate a conception of ourselves as agents.

Following feminist critical theorists and recognizing the Foucauldian claim that the subject is determined by power, I argue that it is necessary to recognize the autistic subject’s capacity for critical resistance and reconstruction (Allen 2010). That is to say, the possibility of mutually recognitive political discourse requires accounting for the prior existence of individual political actors who don’t recapitulate oppressive norms or the opinions of more powerful others. This means accounting for the confidence that individuals — autistic or otherwise — feel in bringing their claims to a public audience; it also requires that we analyze the conditions that prevent this disclosure from happening, when individuals are forced to accord with an image of themselves that is fundamentally alienating. It means understanding why so few autistic people are regarded as having the authority to speak on their own behalf, as opposed to non-autistic psychologists, parents, and neuroscientists having the authority to speak for them. To speak in a shared social world as an autistic individual, must we always conform to stereotypical understandings of the condition as a condition of hypermasculinity, of social failure, of whiteness?

Within feminist theory, the recognition that women’s experiences are heterogeneous has led to a shift toward thinking about how we achieve self-trust, empowerment, and self-recognition, including in the face of overwhelming oppression. As Nicholas Allen has explained, social movements:

[C]an serve as a site for the deconstruction, negotiation, and reconstruction of the subjectivity of participants, and they can provide conceptual and normative resources for participants and non-participants who are struggling to reconstitute themselves in less subordinated ways.

Such understandings of subjective resistance and autonomy move us away from thinking that agency is a matter of innate cognitive or emotional endowment. For Allen, this means exploring the ways in which social movements and culture provide new norms and conceptual tools that then become embedded in everyday life. For people who are devalued according to their assumed social status, actions may be constrained by environments designed for ‘normal’ people, but our understanding may not be. Nonspeaking autistics, in particular, teach us about the constraints on action that stem from assumptions about the nature of communication itself.

To support mutually recognitive conversations, any answer to the question ‘What is autism?’ must recognize both the relational agency of those labeled autistic and those non-autistic people who have sought to either explain or understand autism from an external perspective. And it must

Preface xi also acknowledge that non-autistic stories about autism have typically dominated the public conception of which answers might be available. We may also wish to ask, what are these non-autistic explanations of autism doing to our collective world of shared sense-making, and where have they got us? Considering both non-autistic and autistic-authored narratives in their plurality and diversity, we can look for an understanding of autism that explains why it can in some cases lead to difficulties in mutual recognition.

Reading life narratives by those who identify as autistic, we can understand that it is also a condition of lives that are relational and rewarding in distinctive ways. These narratives also show us that autistic embodiment can be understood as a relational misfit between the individual, their environment, and those around them (Chapman 2021). But, as Jo Bervoets and Kristien Hens have argued (2020), making sense of autistic experience requires our willingness to consider that it is possible to identify as autistic and consider oneself to be in good mental health and capable of relating to others. This is at odds with cognitivist and psychoanalytic paradigms that regard autism as defined by a fundamental deficit in subjectivity, models that have increasingly come under scrutiny for their failure to explain a wide range of individual differences between autistics. Bervoets and Hens explain how regarding autism as essentially a social disorder precludes the possibility of understanding and ethical engagement with autistic lives (2020). To do justice to individual autistic agency, they argue, we must disentangle individual behavior from its cognitive underpinnings, so that we recognize the distinctive causality of the mental, as opposed to the biological realm. However, this also requires sensitivity to the ways the mind extends beyond the brain to enact possibilities produced alongside affordances for action available in a particular environment (Gibson 1979), which in turn influence the development of a perceived self. As I explore further in the Introduction, our interpretations of other people’s behavior are the product of cultural pathways to personhood. We recognize others through existing stories that provide ‘courses of action toward desired subject positions and ways of being in the world that stand in contrast to other possible but undesirable futures’ (Solomon 2013: 120). But there is always a choice about the story we tell, and this has implications for what comes into being. As Olga Solomon has explored in relation to parental accounts of autism, stories make room for uncertainty as to whether their child’s actions are because of, or despite autism: what matters is the creation of an environment and stories in which such actions can be pursued.

Non-autistic perspectives on the condition are currently dominated by the question of how autism can be both socially constructed according to those individuals who are currently regarded as autistic and at the same time be a biological reality (Bervoets and Hens: 1). The answer, as Bervoets xii Preface and Hens suggest, is that these are two explanatory modes that seek to understand autism at fundamentally different levels of reality: of social appearance through behavior and via biophysical makeup (this is akin to the complementary ‘particle’ and ‘wave’ forms of matter). But from the first-person perspective, there may be many ways of explaining behavior. Throughout this book, I will argue that this is the space in which ethical interaction occurs.

At this level of complexity, we can see that autism is neither a fixed social location, nor a form of subjectivity determined by neurology. As Anand Prahlad explains in his memoir, The Secret Life of a Black Aspie (2017), ‘if I was among a group of white people and didn’t understand what was being said, was it because of Asperger’s or because of race? Usually it was both’ (9). Prahlad explains that the causes of misunderstanding in any interaction are unclear: is it because he has not had access to the norms of white US culture, or because he experiences language in different ways to most people? His family had taught him how to interpret the behavior of those who were different from him: he had been taught ‘to read all things [...] To know what people wanted before they started talking’ (33). His family also had to teach him, as someone who experiences synesthesia and sensory hyper-sensitivity, tactics to survive by such as ‘how to deflect sound’ which would enable his neurological difference to go unnoticed (9). Neither strategy could allow him to share his experiences with others, since there was no context for explaining the constraints imposed by the intersection of neuro-normativity and white supremacism. The Secret Life of a Black Aspie can therefore be read as an effort to create such a shared context.

While Bervoets and Hens emphasize the importance of both social and biological understandings of autism, they underestimate the significance of the narrative imagination and the relational capacity of all individuals to resist pathologizing social designations. Part of this resistance can be explained in terms of what Ulric Neisser calls the ‘conceptual self’, which is the sense we develop of ourselves according to the stories we encounter that incorporate experiences that are different from our own (Neisser 1988). This is why it is important to consider how autism may combine with being mentally well, and also how what may go wrong is consequent upon the stories we tell and the simplifications they embody (including those that make it harder for us to access diagnosis or appropriate support). These stories inhibit recognition for intersecting forms of identification: of being a woman and not communicating in ways that ease social tensions; of being black and ‘uncool’ or soft; of being a man who is dependent on others for support in order to maintain a job; of being intelligent but not learning or producing in ways that are valued by our culture; of being ‘non-speaking’ but having much to say. Thinking deeply about the

Preface xiii apparent ‘incompatibility’ of autism with well-being — or the absence of mental health difficulties or distress — requires us to question our assumptions about the inherent vulnerability of autistic embodiment and listen to what people actually communicate. As researchers, we need to be aware of the ways in which we are subject to, and agents of, power through the stories we tell. At the same time, through awareness of the eddies and currents of power to which we are subject and perpetuate, we can produce research that is both more ethical and nuanced.

At any moment in time, we are capable of recognizing the different locations into which society would typically place us, and it is through occupying this liminal position ‘that the virtues and defects of each community are easier to spot’ (Meyers 2000: 155). Insofar as we are identified as belonging to a distinctive social group (and regardless of whether that is perceived to be a natural or social construct), we are ‘inducted into its distinguishing paradigms and norms’ (157). Social belonging, especially to a stigmatized group, poses constraints and possibilities for action that are not direct consequences of our embodiment. These include not only relations of domination and subordination themselves but also constraints on disclosure, because dominant discourses of subjectivity valorize ‘unity, coherence and constancy’ rather than the ‘heterogeneity’ that is a feature of intersectional lives (158). Taking account of an intersectional identity challenges the dominant discourses of sovereign selves — especially when one communicates experiences in non-normative ways. Very often this means that others will find such stories strange and complicated. But accounting for our lives in this way allows us to recognize that there is always something ‘in excess’ of authorized or received identities, something that comes when we recognize that other people’s actions are always tied up with their sense of what is right and normal for them.

This is how it is possible for Prahlad to say that, despite being autistic and black in a culture where each of those identities are devalued, he has a ‘secret life’ that he sustains through maintaining habits that reward him emotionally and aesthetically. These habits are based on a scale and pattern of attention that he initially shared only with his family and are revealed through the way he reads the many different identity discourses and stories he has encountered during his lifetime. He discloses these experiences because he thinks it may ‘help someone else to hear the stories, someone with autism or someone with a loved one on the spectrum’ (2017: 11) and not because he believes he has overcome his autism. That he can do so is a product of his having learned — and subsequently able to break in meaningful ways — the generic conventions of autobiography, which define the expectations of his anticipated readership for a linear progression of events toward a static outcome. Instead, like many of the life writers cited in this book, he deploys a more cyclical narrative structure which should xiv Preface be read not as deficits in narrative cognition but as an altogether different perspective on causality, the limits of human agency and ways to live otherwise to the dominant ‘worlds of sense’ (Lugones 1992).

Prahlad’s secret life is one defined by both sensory sensitivity and cross-modal sensory associations. That is to say, he does not suggest that there is a singular ‘first order’ cognitive dysfunction that is responsible for his ‘autistic’ behaviors, nor does he look for a cause for the difficulties in his upbringing. Neither does he say that autism is just a label, imposed on him by others. The question of who decides what autism is matters to whether we can make sense of Prahlad’s story, because without any mutual effort toward reaching a shared understanding, there is always the possibility of misrecognition. And the greatest obstacle to this is not autistic embodiment but the dominance of understandings about autism and race that are based on stereotypes.

Inspired by these narratives that deploy an excess of meaning between authorized subject formations, I ask what possibilities arise for intersubjective meaning-making and a shared world of experience? What forms of sociality are enabled when we attend to the unexpected and novel aspects of experience, when we do not prioritize how we expect others to behave according to our preconceived expectations? What meanings of autism emerge? How might narratives unsettle our received understandings of communication by foregrounding its basis in ‘patterns of action, attention, or emotional response, in bodily dispositions and habits, in moral commitments, or in one’s personal relationships’ (Mackenzie 2008: 1)? If we focus, that is, on the process, through which we achieve ‘narrative agency’ (Lucas 2016)?

I therefore encourage you to listen to what autistic people say about their lives — we are not to be reduced to a homogeneous group, as though other aspects of our identity are unimportant. If biological research can make room for social-scientific explorations of what it means to be an autistic person in a non-autistic world, the social sciences should also make room for humanistic work on autistic cultures, languages, and competencies which have not traditionally been thought consonant with the condition and which demonstrate real differences in experience. Otherwise, much-needed work against autistic disempowerment through intersecting forms of oppression risks reifying the meanings of the condition and demoting us to the level of abject existence. We must avoid fixing autism at the level of discourse and recognize instead the potential of weaving narratives to articulate the meaning of a life lived well — in spite of oppression.

Acknowledgments

I would like to thank James McGrath, Hanna Bertilsdotter-Rosqvist, Rosemarie Cawkwell, Robert Chapman, Jenny Bergenmar, Nick Chown, Susy Ridout, Matthew Wolf-Meyer, Richard Kerridge, Alice Hagopian, Timothy Baker, Gareth Farmer, Samantha Walton, Amy Pearson, Marie Manalili, Greg Hollin, and Jorn Bettin, who have read and responded to drafts of this book and the ideas behind its inception in insightful ways.

Anand Prahlad, Joanne Limburg, Leni Van Goidsenhoven, Natalie Joelle, Nick Walker, Gideon Henner, Julia Ankenbrand, Alyssa Hillary Zisk, Ralph Savarese, Dawn-Joy Leong, Dyi Huijg, Rachel Clive, Fergus Murray, Sonny Hallet, Steven Kapp, Damian Milton, Monique Botha, Rebecca Lewis, Alex Chand, Andrew Coltrin, Kelsie Acton, David Hartley, Des Fitzgerald, Georgia Pavlopoulou, Stuart Read, Jill Anderson, Paola Debellis, and Isabelle Finn-Kelcey and colleagues in the Narratives of Neurodiversity Network have been excellent conversation partners during this project. My especial thanks to Sarinah O’Donohue, Louise Creechan, Hanna Bertilsdotter-Rosqvist, and Sarah Lucas for their wisdom, humor, and solidarity. My thanks to Stuart Murray for his support for this project and for his guidance during the writing process. He has helped me to understand that research can be critical and creative.

Pm grateful to Thomas Bray, at the Wellcome Trust for his excellent support and guidance during the early stages of this project. A thousand thanks to David Perkins and Meg Price for helpful discussions and proofreading support. Lennard Davis, Tyler Bay, and Paige Loughlin at Taylor and Francis have been consistently helpful throughout the time I’ve been working on this project. With thanks to Amanda Forest Vivian, Daina Krumins, and Jorn Bettin for their kind permission to use their artwork and illustrations in this book.

Finally, I would like to acknowledge the ongoing love and support of my friends and to thank Lee Clifton, who has sustained me with his faith in my perspective not only in writing this book but in navigating the world with an autistic sensibility.

This book was written with the support of Wellcome Grant Number 218124/Z/19/Z.

Introduction

Beyond the neurological subject

Autism as a node of address and as a record ofa sensibility

The focus of this book is not so much what autism is or autistic people are, but rather what does it take for autistic people to participate in a shared world as equals with other people? I will argue that the difficulties and possibilities which individuals face originate from those individuals’ unique circumstances of embodiment, culture, and social status; they are not generalizable into the epiphenomena of the universal deficits model that is so often applied as the conceptual framework for the ‘understanding’ of autism. If these generalized models are intended to help with developing more inclusive environments, why do we have so little input from autistic people as to which models may be most appropriate?

As a ‘neurologically atypical person’, I can attest to the value of the frameworks that autistic life writing and community-oriented counternarratives have provided for me to understand my own experiences. More generally, I argue that individual identity stories can become the basis for counternarratives that resituate individuals as the source of the meaning of their experiences or facilitate recognition of the agency that enables the articulation of projects, plans, and the sense of what is normal, right, and desirable — even if this is at odds with what ‘people like us’ are supposed to be doing. For instance, I suggest in Chapter 2 why narratives that employ the concept of Monotropism may be far more useful in enabling autistic people to make sense of their experiences than the cognitive model of ‘Weak Central Coherence’ which is entangled with assumptions about interpersonal connectedness according to earlier characterizations of autism as ‘Mindblindness’. However, I also discuss the risk that counterstories may become cultural master narratives in other situations, or otherwise fail to mesh with the tapestry of stories that provide ways of being a person in local contexts. While I make some generalizations about constraints on narrative and political agency in the Western cultural and

DOI: 10.4324/9781003036807-1 This chapter has been made available under a CC-BY-NC-ND license.

cosmological milieu, I also describe how other worldviews inform new imaginative horizons and constraints on disclosure. In exploring this, I suggest that a practical identity is the constantly shifting, and sometimes necessarily contradictory, understanding of our actions through time. I argue that there is far more to making sense of experiences than simply that which resides in neurology as defined by positivistic neuroscience.

At the same time, my interactions with other autistic people have led me to believe that there is something about autistic embodiment that I assume to be a consistent part of the diverse expression of the human nervous system. This includes at least two of the following: relative difficulties with fast-paced verbal speech and, therefore, difficulty with engaging with social spaces that depend on having access to a world of shared symbolic meaning; a relative preference for iconic and indexical modes of association and interaction; and a sensory orientation to the world. The question of whether I am qualified to make that judgment is one that I will leave for now. Recent commentators have argued that proponents of a neurodiversity paradigm! — and autistic narrators in particular - make assumptions about autistic people who, from their perspective, seem to have very different experiences of the world. And yet very little attention has been paid to the need to find more democratic and pluralistic ways to articulate and understand our subjectivity. I argue that autistic individuals experience constraints on their narrative agency — understood here as their presumed capacity and authority to make sense of themselves in relation to others through time (Lucas 2016). Some of these constraints are inherent to communicative norms and the practices of facilitating or providing support to individuals within the West which may privilege high-affect verbal speech and highly stratified social roles, and others are produced by the ‘organic ensemble’ of stories within a culture about what it is to be a human self (Nelson 2001). Within the West, autistic people face misrecognition because of dominant medical narratives, regardless of whether they are interacting in private or public spaces. At the same time, they experience specific challenges engaging with public discourses about autism, as I explore in Chapter 1 of this book. Yet insofar as autistic individuals and groups are allowed/invited to intervene in public discussions about autism and thus about themselves, we can learn from these instances about the ways in which political recognition is granted. This is the theme of Chapters 2 and 3.

In the final chapters, I grapple with what it may mean to think about autism in terms of other cosmological perspectives. This is not for the sake of trying to create a universal model of autism but to think about whether it is possible that an ‘autistic sensibility’ may foster new forms of solidarity at a planetary scale, which have the potential to disrupt the categorical distinction between ‘life’ and ‘non-life’ that is fundamental to the operations of power within late Liberalism (Povinelli 2016). In light of both the grass-roots neurodiversity movement originating in North America and Europe and institutional efforts to develop a coordinated global approach to the management of those with “autism spectrum disorders (ASD) and developmental disabilities’ (WHO 2014), the question of how we interpret the experiences of autistic people has an inescapably cosmopolitical dimension and one that we do not yet have the means to understand within the Medical Humanities as currently practiced.

This text has been written with an awareness that my own narrative agency may be undermined from the outset by my mode of address. That is, I write as an autistic and otherwise neurodivergent person who has a background in the humanities. My positionality entails that my own work may be read according to clinical master narratives about autism that would cast me as an unreliable narrator because I am autistic and therefore presumed to be unfamiliar with experiences that are regarded as definitive of personhood. My disciplinary home, however, means that I do not align straightforwardly with epistemic approaches that seek to understand autism as either the product of historical social structures and/or neurology, but propose something that I think is new. I outline how ‘sensory subjectivity’ provides a more inclusive framework from which to consider ‘lived experience’ than symbolic, structural or neurological models. I focus on individual acts of sense-making rather than the social structures or cognitive structures that would implicitly deny these. This is why this book does not offer any systemic appraisal of all autistic-authored autobiographies from an Anglophone and Anglo-American tradition: my selection of texts has centered instead on identifying particular patterns that manifest at the level of personal disclosure in Britain and North America. I then proceed to map how sense-making practices operate across geographical and cultural borders. I do not seek to capture these in any comprehensive way, but I register how these narrators challenge the construction of autism as a deficient form of subjectivity or as one that precludes interest in relating to others — even if some of these others are nonhuman. I consider how images of autistics as ‘new animists’ may seem potentially liberating but, in reality, are used to reinforce existing power arrangements that extract not only capitalist value but also inhibit other modes of collaboration. I, therefore, argue that questions about what autism is, in the context of personal disclosure, cannot be separated from the political realm, and questions about what it means to be acting in a world that is historically and materially interconnected in both oppressive and potentially emancipatory ways.

Autism was initially a diagnostic classification that gained traction during the 20th century within North America, Western and Northern Europe, and Australia but has spread in the 21st century to other parts of the world. To the extent that psychologists have attempted to argue for a universal diagnostic category across cultural contexts, there is typically a consensus on the value of a worldwide acceptance of the diagnostic criteria for ASD (Autism Spectrum Disorder as defined in the APA DSM-5, see APA 2013) notwithstanding culturally enacted ‘differences in the presentation of autistic symptomatology’ (Matson et al. 2011: 1598-1599). Yet, cross-cultural comparisons are sought even when it is unclear that participants are discussing the same research object. For instance, the term autism is used in ‘low- and middle-income countries’, and it is ‘associated with an intellectual disability’ (Russell 2020: 2). Some have speculated that intellectual disabilities, in general, are only meaningful in the context of the intensifying social demands posed by industrial societies (McKearney and Zoanni 2018: 6).

We might further extrapolate that autism as a social disorder, a relatively independent condition from intellectual disability, gains meaning as a disorder in post-industrial societies where service industries provide the main source of employment even if, under capitalism, these same capacities alone are insufficient to allow more apparently ‘neurotypical’ people to thrive (Chapman 2022). Certainly, even if we believe that there may be a globally prevalent autistic neurology or autistic condition of embodiment it is difficult to see how this could lead to a meaningful strategy to intervene in heterogeneous cultural contexts, where ‘behaviors’ that would elsewhere lead to diagnosis are not considered culturally relevant or where the risk of stigmatization for families outweighs the perceived benefits. In many instances (and I would argue, including in the West), attitudes to autism are entangled with ideas about developmental and/or ‘cognitive’ disabilities and depend on a broad range of factors including attitudes to marriage, social competence, religion, and stigma (McKearney and Zoanni 2018: 6). Autism is also implicated in a tapestry of stories about what it means to be ‘healthy’ as a distinctive kind of individual socioeconomic success that is, even in the West, available only to a few.