A Sensory Sociology of Autism

Habitual Favourites

Robert Rourke

• Publisher: Routledge
• Year: 2019
• ISBN:
  9781351031486
• Edition: 1
• Topic: Scienze sociali
• Subtopic: Lavoro in ambito sociale

This innovative book places the sensory experiences of autistic individuals within a sociological framework. It instigates new discussions around sensory experience, autism and how disability and ability can be reconceived.

Autism is commonly understood to involve social and communication difficulties. Less commented upon is the sensory challenges faced by those with autism. Sociology is no different, focusing on communication and neglecting the sensory dimensions of experience. Sensory experiences and relations are central to how we understand and navigate through the natural and social worlds, and mediate our interactions with other people, objects and spaces. In this book, the author explores how these processes are affected by the favourite activities of autistic people.

With real-life case studies and cutting-edge research, this book will be useful to students, autistic people, advocates and carers, disability studies researchers and sociologies of disability and the senses.

1 Introduction

Exploring autism, the senses and autoethnography

A sensory beginning

Consider the importance of our senses in everyday living. Imagine the challenges of everyday living if our sensory perceptions were constantly confused, ephemeral and uncertain. Now, think of how distressing and disruptive experience would be if our sensory systems were so reduced that we could not feel pain or hunger, or smell dangerous chemicals. Or if our sensory perceptions were so potent that lightbulbs become gigantic spotlights, affectionate caresses become sandpaper being vigorously rubbed against the skin. Life, experience, interactions with people and things, become a blur, unreal, there is no concreteness to attach to. No one can communicate with us and there is no recourse for us to communicate with them. However, remember that sensory experience can also be pleasurable and bring us to higher levels of experience. The light breeze in a park, next to a large tree, can invoke feelings of awe. The age and experiences of the tree can be felt in the rough bark, which, rather than being painful, like that of the affectionate hand, is fascinating, not something to remove ourselves from as soon as possible. The bark conveys the wonders of nature and the different material nature of trees as compared to people. Life becomes boundless, the wonders of how everything interconnects on an abstract, as well as material level, brings forth an excitement and affective passion for life that is almost impossible to put into words.

Equally, keep in mind that sometimes nothing terrible or incredible happens; sensory experience is mundane, even boring; it almost recedes to the background of awareness so that we do not even notice that sensory input is registered at all. Or, negative sensory input is easily dealt with to restore balance without intense reactions. The noise of the TV may be too loud, but we can turn it down. A jumper may have large, white labels inside that rub against our skin on a rare occasion, temporarily and very mildly distracting us. But, they can simply be cut out, no big issue, problem solved. Nobody would even know it had been done, a perfectly rational and practical response, just as any person without alternative sensory sensitivities would do. Even though this removal of the label occurred on the same day our friends sandpaper hands made us jump up in pain and tense up in anxiety. Thinking about all these distinct, potentially overlapping possibilities has caused physical and mental exhaustion. The only thing left to do is retreat to the bedroom, or rather, sanctuary and lie on the bed, recovering from the anxiety, physical tension and sense of dread that has overcome any other sensations or thoughts. This eclectic jumbled and disorientating array of sensory perceptions and processes of making sense of these perceptions is how the sensory experience of someone with autism might manifest.

This book is a sociological exploration and examination of the mechanisms, relations and actions that impact on the intersection between habitual relations with ‘favourites’ and the sensory experiences and dynamics of those with autism. Favourites as a singular term here is treated as conceptual short-hand that brings together favourite activities, people, events, objects, places, consumption practices and areas of interest. I examine the ways in which the repetitive and creative potentials of habitual social action provide a theoretical and empirical basis in which we can examine the social and sensory lives of those with autism. This is important because of the perceived ‘deficits’ and ‘challenges’ faced by those with autism create insurmountable barriers to effective communication and recognition as right-bearing and self-identifying subjects in modern social life. Sensory and habitual differences in autism are central to everyday living experience, yet, sociology (until recently), has few resources to investigate the interconnection between the senses, habits and autism/disability. Juggling between hyper and hypo-sensitive sensory perceptions is pressing on an embodied and mundane and everyday level. Integrating these confused experiences into forms of self-awareness and understanding, let alone integrating this self-awareness into shared social and cultural modes of expression, bonding, understanding and exploration is a challenge that is little understood within sociological thinking. Sociologies relationship with the senses and disability as a joint empirical frame of study is woefully lacking. I will address the limitations (or what were limitations until recently) of sensory theorisation in sociology in the next chapter and will here introduce sociologies difficulties in conceptualising disability. Before we can truly tackle these questions, it is necessary to explore exactly what autism is.

Autism spectrum conditions: categorisation and expanding definitions

I begin this section by outlining the contemporary biomedical definition of autism. I will then go on to develop a critical response utilising disability studies theory which challenges the neat compartmentalisation of ‘disabled’ characteristics. Autism is characteristically defined and conceptualised in medical and psychiatric terms as comprising a ‘triad of impairments’. These include difficulties in social interaction by not being able to read body language, difficulties in interpreting emotions from others and themselves, difficulties in adapting to social change which results in sticking to predefined routines leading to anxiety and lacking a social imagination which is conceptualised as difficulties in getting a sense of other people’s thoughts and feelings (Hyman, 2013). These characteristics are lifelong and the intensity of each of the below identified characteristics will alter over the life course. Equally, whether a characteristic causes ‘disabling’ effects also alters across the life course.

It is important to note that just before I started to write the PhD thesis in which this book is based upon, the Diagnostic and Statistical Manual 5 (DSM-V) was nearing completion and when released in 18 May 2013, altered the diagnostic criteria for Autism Spectrum Disorders/Conditions (ASD/CS). The most publicised change was the removal of Asperger’s Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) and Disintegrative Disorder (Hyman, 2013). The triad of impairments noted above are now consolidated into two diagnostic groups labelled ‘Social Communication/Interaction’ and ‘Restricted and Repetitive Behaviours’ (ibid.). The first group includes challenges in reciprocating social interactions which may include difficulties in initiating discussions or sharing emotions. Further, there may be issues in keeping relationships going and imagining expectations. Finally, nonverbal signals such as eye contact or gestures are difficult to understand or interpret. For a diagnosis of autism to be considered, each of the above elements must be present. The second group of criteria requires that only two of the four characteristics are present. These are: repetitive speech or motor movement, sticking to routinised behaviours or verbalisations that resist opportunities for change, intense interest in specific topics and hyper/hypo responses to sensory inputs and experiences (ibid.).

A point arises from the placement and wording of sensory behaviour for the definition and diagnosis of autism. To place them within ‘restricted and repetitive behaviours’ and to delimit them from ‘social communication/interaction’ characteristics may be necessary for strict medical definitions that categorise symptoms. Such an approach though, does not fully account for how a more holistic consideration of autism reveals a complex reality that unfolds in different times and spaces. A value judgement is present in the way in which ‘unusual’ sensory engagements are presented as a ‘neurotypical’, or non-disabled and majority perspective on what constitutes normality and the constitutive deviations from this. Neurotypical or ‘NT’ are terms used by autistic sub-cultures, found on online forums and advocacy groups that argue that autism, as a spectrum condition, is a part of the continuum of what it is to be human and are not necessarily ‘disabilities’. Rather, they are merely alternative modes of bio-social-psycho-eco of being in the world and hinder and highlight capacities of being human (Ortega, 2009). The symptoms are based on criteria that ANY human could display (think of fanatical interest and engagement with football in the UK for example). These ideas are encompassed within the term ‘neurodiverse’ and constitute a way to show how the characteristics of autism, which are both genetic and cultural, are social constructions that change over time. I return later in this section to expand upon neurodiversity as a concept. Such value judgements can also be found within the sociology of disability.

From a broad or macro perspective, sociology has considered the disabled body and by association the complementary sensory experiences of those individuals as one embodying lack (Hughes, 2009). This is accomplished by constructing disability as the humanist, modern subject’s other via several ‘disabling’ metaphorical concepts. Firstly, by constructing those with disabilities as part of a universal, ‘wounded’ humanity (Shakespeare and Watson, 2002), where we are all vulnerable and subject to disability at any time, reduces the political and embodied differences of disability to a unified humanity that subdues our unease at the disabled other. Discrimination, exclusion and suffering are shuffled off to the side for a universal appeal to a common humanity (Hughes, 2009: 401–402). This disavowal of the disabled other has led some theorists to describe disabled people as ‘monstrous’. Disability is at once all too human and not human as the non-disabled other reveals the vulnerability of the unified, modern subject who strives for perfection, self-control and autonomy that can never be attained and whose subsequent failure is placed on those who bring this failure to attention directly (Shildrick, 2002: 51). However, this approach, which draws upon Derridean deconstruction, does not account for the biological or material reality of disability, or non-disability as the concept monstrous is not a corporeal one. Rather, it is an abstraction that is difficult to relate to any specific concrete situation due to the high level of linguistic theorisation undertaken (Hughes, 2009: 403–404). Further and more importantly, monstrosity has a focus on the extreme and exotic that has a voyeuristic element which discounts disabled people with minor or hard to notice impairments or those trying to pass as ‘normal’ (ibid.: 404–405). While I agree with these critiques, I believe it is important to address the degrees to which we are all universally at risk of becoming disabled at any time and both human and non-human. We need to explore the ways in which social categories like class, ethnicity and gender intersect with disability and how they reveal how we are simultaneously abled and disabled (Goodley, 2014). In this spirit, I focus on one ‘disability’ in this book, autism. And because of this, no argument made here can be applied to other disabilities and their relations to neurotypical social structures and relations. To suggest as such would embrace another problematic aspect of sociological theorising of disability that tries to create all-encompassing concepts that cover all kinds of disabilities without attending to any empirical specificity.

As I will go on to argue, sensory and habitual events can provide the empirical specificity we need to provide tailored theoretical and empirical insights into autism as experienced by those living with the condition. Because of this, we can examine the segmented and specific modes of relation that give rise to sensory experience of those with autism. As such, a central aim of this book is to expand what our conception of autism can be when we examine habitual, sensory favourites. As I will go on to argue, habitual action and sensory experience should be considered as distributed and post-human processes. That is, our habits and sensory experiences are dispersed across subjects, objects and the environments in which habitual favourite sensory events occur. Such an understanding of how autism comes to be known stands in contrast to a traditional understanding of what medical or psychology understands autism as a disability construct. This understanding serves to demarcate ‘autistic characteristics’ which separate autism from the wider social, material and environmental processes that constitute the relational and emergent expression of autistic being. This alternative, social model in thinking about autism is important not just for a more nuanced theoretical understanding of autistic experience, there is an equally pressing need to counter the problematic assumptions that come from medical models of disability. By essentialising the varied traits of autistic being into standardised characteristics, symptoms and/or traits, located within a unitary subject, the autistic person becomes solely responsible for their social and sensory differences and are seen as less than human. (Yergeau, 2013; Goodley et al., 2014). This has deleterious consequences for those autistic individuals who wish to express themselves and draw attention to their right for expression and documenting their ideas and experiences. Part of the original argument of this book is that a distributed and post-human understanding of sensory and habitual interactions calls into question non-embodied understandings of autism such as theory of mind (ToM) perspectives. Autistic experience, as I will show in Chapters 3, 4 and 4.5, is post-human because of the ways in which supposedly uniquely ‘human’ traits, concepts and experiences emerge among non-human as well as human interactions. Further, these post-human experiences are then translated into human discursive and affective spheres to both at once ‘fit in’ with normalised social expectations, while simultaneously forcing us to question what it means to be human, what dis/ability¹ means (Goodley, 2014) and thus reduce the stigma and pathological understandings of autism whether in a medical or social framing. This friction between integration and disruption serves as the catalyst from which to rethink our relationship to dis/ability and explore the means through which to best reframe and restructure our social relations.

However, my framing of the stakes of the book has emerged from many steps of theoretical, empirical and data analysis that has informed this complex position. In this vein, the rest of this introductory chapter will introduce the core theoretical and conceptual frameworks from which I draw upon to make my arguments. Each section that is introduced will be explored further in subsequent chapters. I hope this endeavour highlights, in an introductory fashion, the diverse frameworks and concepts in which I have drawn upon and how they might link together. I will begin by examining the concept of the ‘sociological imagination’ to explore how my interest in habits and favourites emerged sociologically. This will then be related to a classical pragmatist notion of habit through Dewey and the connections between subject, object and habits. Before considering Michel Serres notion of the quasi-object to provide a more nuanced exploration of the connections between subjects, objects and favourites.

Sociological imaginations and forming habits

The theoretical frameworks this book utilise complex terminology and frames of reference to abstract from empirical details to challenge dominant conceptions of the social world. While this complexity is useful to break away from lay or common-sense notions of the structures and experiences of social life, this does not mean that we can, or should, eschew grounded empirical detail. Indeed, because this book is determined to use an explicitly sociological approach to theorising and understanding autism, incorporating the specificities of a ‘sociological imagination’ (Mills, 2000) into such an account are necessary to distinguish it from psychological or medicalised schools of thought. To summarise the ethos of the sociological imagination, Mills argued that the distinction between personal ‘troubles’ and public ‘issues’ was central to sociological analysis (Mills, 1959: 8). Troubles for Mills ‘occur within the character of the individual and within the range of his or her immediate relations with others’ (ibid.). Issues ‘transcend these local environments of the individual’ (ibid.). To resolve troubles, sociologists need to attend to the specificities of individuals’ biographies and their ‘milieu’. Because troubles are specific to an individual’s biography of personal experience, they are highly valued and thus disrupting such values causes intense disruption. Issues are values prized by various publics, which comprise the integration of many milieux such as economic systems that order and regulate bartering activity, which if disrupted, cause institutional crises. Mills was concerned that much of the sociological and social intervention activity of his day was based on individual adjustment without adequately addressing the structural factors that shaped and bounded how individuals could act. Thus, individuals were unfairly blamed or shamed for being unable to secure a job for example, when structural facts such as a lack of poverty relief programs may be a more pressing explanation for high rates of unemployment. I return in Chapters 5 and 7 to the notion of the sociological imagination and contemporary critiques which consider how categories of race, class and disability require a rethinking of this concept.

Mills’s concern with integrating structural, abstract issues and personal, empirical troubles within sociological thinking was inspired by the influence of pragmatist philosophies of thinkers such as George Herbert Mead and John Dewey (Smith, 2009). In the same vein, I draw upon these two thinkers specifically (most predominantly Dewey), as they have equally influenced my own account of habitual favourites. For classical pragmatists such as Dewey, any intervention, in this case, theoretical abstractions, need to be tailored to the specific needs of the population in question. Thus, merely being concerned with developing theory for the sake of intellectual pursuit or internal intellectual debate is not enough. The researcher must be attuned to the specific characteristics of the phenomenon and or social groups in question and this requires knowledge of specific em...