Pausing Encounters with Autism and Its Unruly Representation: an Inquiry Into Method, Culture and Academia in the Making of Disability and Difference in Canada

Pausing Encounters with Autism and Its Unruly Representation: An inquiry into method, culture and academia in the making of disability and difference in Canada

A dissertation submitted to the Committee of Graduate Studies in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in the Faculty of Arts and Science.

TRENT UNIVERSITY

Peterborough, Ontario, Canada

 Copyright by John Edward Marris 2013

Canadian Studies Ph.D. Graduate Program

January 2014

ABSTRACT

Pausing Encounters with Autism and Its Unruly Representation: An inquiry into method, culture and academia in the making of disability and difference in Canada John Edward Marris

This dissertation seeks to explore and understand how autism, asperger and the autistic spectrum is represented in Canadian culture. Acknowledging the role of films, television, literature and print media in the construction of autism in the consciousness of the

Canadian public, this project seeks to critique representations of autism on the grounds that these representations have an ethical responsibility to autistic individuals and those who share their lives. This project raises questions about how autism is constructed in formal and popular texts; explores retrospective diagnosis and labelling in biography and fiction; questions the use of autism and Asperger’s as metaphor for contemporary technology culture; examines autistic characterization in fiction; and argues that representations of autism need to be hospitable to autistic culture and difference. In carrying out this critique this project proposes and enacts a new interdisciplinary methodology for academic disability study that brings the academic researcher in contact with the perspectives of non-academic audiences working in the same subject area, and practices this approach through an unconventional focus group collaboration.

Acknowledging the contribution of disability studies approaches to representation, this project will also challenge these methodologies on the grounds that the diverse voices of audiences are, at times, absent from discourse focused research. Chapter One offers an

explanation of disability studies scholarship and the history of autism as a category of disability and difference. Chapter Two looks at how disability and specifically autistic representations have been understood academically and introduces the rationale and experiences of the focus group project. Chapter Three explores retrospective, biographical diagnosis, the role of autism as technological metaphor, and contemporary biography.

Chapter Four looks at the construction of autistic characters in Canadian literature and film. Chapter Five interrogates documentary and news media responses to autism and the construction of autism as Canadian health crisis, and also explores how discourses that surround autism are implicated in interventions and therapeutic approaches to autistic individuals.

Key Terms

Autism; Autistic Spectrum; Asperger; Disability; Representation; Media;

Interdisciplinary Research; Focus Group; Retrospective Diagnosis; Biography; Academic

Method; Academic and Representational Responsibility; Literature; Film; Diagnosis;

Disability Studies; Therapy

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Does an oversimplified model of how a human being comes to be result in an oversimplified model of what a human being is? (Ian Brown, The Boy in the Moon 178)

Central to my sense of how we might understand autism is a desire to place the condition in cultural contexts. (Stuart Murray, Autism xiii)

Preface

It’s 7.30 in the morning, early March 2009. It’s cold outside, small wisps of snow are falling and the road is covered in those lovely swirls of drifting snow that are too light to settle. I am driving to Brian’s house to pick him up. We are heading out of town to spend two hours with Peter (name changed). Peter is five, he does not speak, he still wears diapers, he has autism (or is he autistic?). But I should start again, because these are not the most salient points about Peter, nor are the basic facts of his life: his older brother, his middle-class parents, the farm just outside of town. No, the reason that I am prefacing this dissertation with some thoughts about him are that he has taught me more than any other person how to be present and alive to another human and to myself, and you would not be reading this Ph.D. dissertation if I had not met him. For me and for what you are reading, these are the most salient points about Peter.

On this particular cold March morning I am in possession of a certain knowledge about how some people see autism. I have been through a particular experience that I wish not to share with either Brian or Peter, but I know as I drive it comes between me and my work, between me and the world this day. Two nights ago I was attending a seminar for my Ph.D. This was one of a few critical meetings in the academic year where

Ph.D. students are expected to present a synopsis of their research, and in preparation for this a paper outlining research and ideas is submitted to the department a few days before.

There is no knowing who is going to be present at these meetings. The expectation is at least all the Ph.D. students in the program. Since the program has only been running for

two years, this means fewer than ten students (half of my cohort had already dropped out at this point). These events follow a fairly typical format, the student gives their presentation and fellow students are given the first round of questions, then faculty get their turn. I witness my two other second year colleagues take a verbal beating. And then it is my turn.

One expects a mauling, some tough questions, but I do not expect the attack to come at such a personal or fundamental rights level. There is, then, a certain form of testing that I expect. Professor ‘P’ makes a comment about how well trodden the ground I am studying is and I should look elsewhere. There are other comments on poor reading of films, badly framed arguments, just how much work is needed to formulate a workable thesis. All predictable if frustrating and mostly unproductive stuff. Then Professor ‘R’ has her turn to speak: ‘John, why, why do you want to study these people, they are not even real people, they cannot even speak. You should study sex or something in French cinema.’ I get caught on the comment on French cinema, I think, ‘why would anyone want to study sex in French cinema, surely that has been done to death?’ Then I realize that (to his credit) Professor ‘B’ is angry, has shouted something about Stephen Hawking not being able to speak. I hear again in my head her words. I start to shake, I want to cry.

I say nothing and the next professor starts offering her comments. No more is said about

‘R’s’ comment. Ever.

Why didn’t I walk out? I am thinking this in the car two days later. I was leaving the program anyway. I had only attended the meeting because the chair of my future department had asked me to keep attending classes until my place in Canadian Studies was confirmed at the beginning of May. So there it is, it’s out. I did not start my Ph.D. in

Canadian studies, but found a home here for my cultural focus on autism. And so I should take this opportunity to thank my department for its hospitality, particularly my supervisor Sally Chivers who counselled me through the wider academy’s troubling approach to disability studies, and Julia Harrison, the incoming chair in 2009, who negotiated a place for me and my work in the Frost Centre. At no point has anyone in the

Canadian Studies Ph.D. program questioned the right of autistic people to exist.

As one member of a care and therapy team, I worked on and off with Peter from

January 2008 until the spring of 2012. For two years from 2008 to 2010 I picked up Brian every Friday morning and we would go together to Peter’s house and occupying him in many and varied ways for two hours before handing over to another member of the team.

Brian is probably the most qualified, and talented play therapist in Ontario, maybe

Canada. I learned almost as much from Brian as I did from Peter. What I learned from

Brian is easier to put down on paper, but Peter’s teaching goes deeper. Brian could teach me that we have to respect who Peter is, meet him where he is ready to be met, but Peter could show quite clearly when I knew what this meant by smiling and offering a rare moment of eye contact if I was being truly present with him. In our more recent time together Peter would also greet me with a laugh and jumping, a clear Peter sign that I had achieved a certain level of acceptance and I was in his circle of love.

In the last two years I have often picked Peter up from the special unit at his school

(the back entrance, where the parents do not make eye contact with each other), for

Monday afternoon play-dates. As I guide him towards the house, stand behind him on the porch steps to be sure he does not head to the road, he will try the handle of the screen door and maybe fifty-percent of the time he will manage to open it, the same cannot be

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said for the main door, which he opened once, turning the old metal round handle and pushing at the same time. The skill apparently found briefly, and then lost again. Peter enters the house slowly, with a sense of caution, a somewhat worried look on his face. It is hard not to see this as intense, but struggling autistic thinking. ‘Where am I?’, ‘is this familiar, safe, OK?’ Then the smile comes, accompanied by small jumps, and just before he rushes across the room I sit him down to remove his shoes. Once this is done, he runs to my book case and giggles and bounces as if a trampoline were permanently under his feet. He pulls a few books off the shelf, grabs one and as he moves it towards his mouth, I take my opportunity. I grab him, ‘hey Peter, don’t eat my books. How are you?’ He knows the game. I grab him by the waist and pull him towards me and in the same move I fall backwards with both of us onto the sofa. We land, me on my back, him lying on my front facing me. Face to face. He giggles and laughs and smooches my face with dribble, his chew toy drips spittle onto my shirt. I hold ridiculously tight, as if he had a body as strong as an adult, he laughs harder.

As I have spent time with Peter and reflected on how autism is constructed in popular consciousness I feel all the more strongly that autism is not in a closed off world, not hidden behind some wall, but powerfully present in front of me. This is Peter’s complex human presence. It is clearly a different one, a disabled one, in the sense that we typically expect kids of his age to talk and know when they need to use the bathroom, but it is far from being walled off and locked away as is often implied in popular images of autism. It comes powerfully through ticks and mannerism, stimming, the pushed out belly, the vocalizations, the clicking sounds, and the chewing of books. It comes at its best

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through his deep, deep belly laugh that he gives you when you pick him up and twirl him around, turn him upside-down and fall on top of him.

Sometimes on Monday afternoons he would be so tired that I would take him upstairs, read Sandra Boynton’s But Not the Hippopotamus, his favourite book, and curl up with him and we would both fall asleep. Often he would sleep on top of me. And in these moments I cannot escape some questioning fascination with this child, and by extension with autism. Asleep, his head using my chest as a pillow, in one of those awkward positions that only children can sleep in, his autistic expressions (I avoid the medical sense of the word symptoms, though this was what I originally wrote here), no longer present, I ask myself what is he thinking? At this moment of beautiful peace, that I suspect all parents know at some point, this moment of angelic stillness that all children have when they sleep, Peter’s complexity becomes wondrous and fabulously deep for me.

Critically, like all of us, an autistic child has good days, really good days, bad days, and days from hell. I also subscribe to the idea that when you meet one autistic person, you have met one autistic person, so when I say that Peter has been my biggest teacher over the last five years, I do not mean he has taught me what autism is, though he has done some of this. What I mean is he has shown me how to be present in the face of difference, be present in the face of the non-verbal, and be ready to question how autism, and difference in general, is represented in Canadian culture. This is to acknowledge the performative role that images of autism create in fiction and documentary films, television programs, newspapers and other media, and how these performances have consequences for the lives of those connected to autism. Knowing Peter obliges me to ask my questions about how autism is understood and made in modern Canada, how its

making via, at times, cliché and received opinion has consequences beyond the frame of any given representation, and to do this work in the context of love and care.

Our teachers, then, come in predictable guises, as professors, text books, literature, but they also come from the edges of our experience, from the unexpected, and Peter is one of these. In what follows, I hope I have kept this idea alive, both out of respect to

Peter and the belief that academia, at its best (like almost everything), is always done

‘differently.’

So to return to that March morning in 2009, as I enter the relative chaos of his family home, as his older brother is barely cooperating in getting ready for school, I pick

Peter up and take him to his room, Brian follows me. Peter laughs, and for me and for any true witness, the question of his right to be himself, however autistic that is, however different that is, and his right to never face the questions or comments I faced two days previously, is confirmed. His very humanity is not something to be debated and will not be debated here. That that is not a productive debate or ethical place to start is something we must know before I can do this work.

John Marris

July 2012

Acknowledgements

In addition to acknowledging the significance of Brian Nichols, Peter (name changed) and his family in the very existence of this work, there are a number of others I wish to thank for their support. Firstly, I want to offer my thanks to my supervisor Sally Chivers for her initial support and keeping faith throughout the work. I also want to thank Julia

Harrison for encouraging me to stick with the project, and Joan Sangster for her work in organizing a prompt defence. Michael Epp deserves acknowledgement for his timely and generous feedback that added subtlety to the final dissertation. I must, of course, also acknowledge the work and support of the focus group participants, Brian, Myria, Mel,

Janet, and Janice. Without your significant time commitment and powerful contributions, this project would be a shadow of what it is.

This project received generous financial support from the Frost Centre for Canadian and Indigenous Studies; the L and G Frost Fund; Ian and Margo Nelson Graduate

Scholarship; Quaker Oats Graduate Scholarship; and the Mary Northway Graduate

Award. Dedicated research funding came from The Symons Trust Fund, the Shelagh

Grant Endowment, and Frost Centre Research Awards. I should also note the financial assistance that has come from Graduate Studies in the form of regular bursaries from various sources, and thank Jane Rennie for her encouragement in applying for this support. Other financial support has come from the Canadian Union of Public Employees’

Professional Development Fund and I should also thank CUPE for their tireless work for graduate student workers at Trent. While noting Jane Rennie’s support, I should also thank the whole team at Graduate Studies who have always met me with a smile. I want to particularly acknowledge the work of the then Dean of Graduate Studies, Doug Evans,

in supporting me in my first two years at Trent. For their support in navigating the administrative side of study and hearing my occasional frustrations I want to thank the

Frost Centre administrators, Winnie Janzen and Cathy Schoel.

A Ph.D. is often a solitary task, but knowing that you are not the only one engaged in this endeavour offers solace. As such I want to thank my fellow Frost Centre students, particularly Meaghan Beaton for coffee time, and Amy Twomey and James Onusko for being sympathetic fellow travellers through our French exam. Brendan Main also deserves mention for accompanying me from the very start, even in that other, less happy place. Amongst student friends, I want to thank John Rose and Iftekhar Kabir for their ability to bring me down from the serious. Special mention should also go to Francis

(Olley) Pearson whose energy for life, cycling, and climbing made my undergraduate studies some of the best years of my life. Mark Dickinson deserves mention for allowing me the freedom to be an anarchic and playful seminar leader and thanks also go to the undergraduate students I have met as a seminar leader at Trent.

External academic support came from Stuart Murray who pointed out that the Ph.D. was an itch I had to scratch, and Robert McRuer who offered encouragement, and a funded conference opportunity just when the inspiration was needed. I should also take this opportunity to thank Jay Dolmage for agreeing to be the external examiner and

Suzanne Bailey for being the internal examiner.

Life cannot exclusively be study and useful distraction from work came from the

Peterborough cycling and climbing communities, notably Wayne and May at Rock and

Rope, and fellow Ph.D. climber Megan Hornseth. Sanity checks came regularly from friends and neighbours. There are too many of you to mention here, but you know who

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you are and thank you. Special thanks However are due to Gary Heuvel and Inge Lovell who fed me often. Karen Soltan also deserves special note for allowing me to build art on her land. I owe a debt to Jennifer Logan and those who have been involved in making the

‘Rink’ each winter. And on this subject I want to acknowledge Vaino and Elena, their son

Emile, and every kid I played hockey with over the last five years. Your distractions made the academic work easier. Cheers to the Saturday morning breakfast club that was genuinely about breakfast not detention. Paralleling my Ph.D. has been an exploration of photography and painting which has been supported in no small part by Brian Nichols,

Elizabeth Fennell, Esther Vincent, and the local arts and theatre community. This work has been important to me and points to future interests. I also want to thank the kids and staff at Camp Towhee for summer breaks from work, and Alex Thomson for introducing me to this community. Adults as well as kids grow in this special place.

Though located on the other side of the Atlantic, my family has been a strong supporter of this project. My mother, Jenny Marris and her partner David Lambourn have been constant encouragers of my academic pursuits, as have my father Edward Marris and his wife Gillian, and my brother Richard and his family. Living at this distance from family is at times a struggle, but their belief in my work makes it easier.

Five years ago I was introduced to a ten-year-old who has become a constant part of my life, and the greatest source of light and joy that I can imagine. His weekly presence in my life has become an essential part of who I am. To the now fifteen-year-old Josiah

Suarez I offer my greatest thanks for your trust and love. Josiah, keep on dancing! In concluding these acknowledgements, I dedicate this dissertation to Brian, Josiah, and a very special autistic boy.

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Contents Abstract ii Preface v Acknowledgements xi Contents xiv

Introduction - Autism and Culture 1

Chapter One - Autism, Disability, and Academia 26 The social/medical model of disability and its challenges 27 Social construction and ideas of normal 31 Statistics and where ‘normal’ comes from 32 Foucault, bio-power and disability 34 Further troubling identity formation 37 Disability as meta-identity and the ‘good-life’ 45 Performativity and felicity 48 The history of a label 49 The Diagnostic and Statistical Manual, the official place of autism 56 Autism from the view of Government 70 Mindblindness and Suffering 71 Autism, philosophy and Ian Hacking 76 Conclusion 88

Chapter Two - The Unruly Issue of Representations, Audiences and Methods 90 Disability film theory 91 Developing disability film theory 97 The unruly issue of audience research 105 The structure and experience of the focus group 108

Chapter Three - (Retro)diagnosis, Biography and Function 126 Glenn Gould: a Canadian retrospective case history 128 Douglas Coupland on McLuhan and the traps of biography 142 The focus group’s view of 32 Short Films About Glenn Gould 149 Retrospective diagnosis and fiction 156 The awkward and gifted: the conflation of autism with genius 160

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Autism as contemporary metaphor 168 Autism and function 173 Contemporary autistic biography 179 The focus group’s responses to Bridges-Over-Barriers 186 Conclusion 192

Chapter Four - The Making of Autism in Canadian Fiction 194 Autism at the end of the world: Douglas Coupland’s Player One 196 Autism at the end of the world (again): Margaret Atwood’s Oryx and Crake 207 Autism as troubling divine in Brad Kelln’s In Tongues of the Dead 214 Faith as the answer: Lori Kohlman’s Horses Hockey and Haloes 219 Snow Cake and the cinematic representation of autism 227 Autistic speculation in Jane Urquhart’s The Whirlpool 240 Conclusion 246

Chapter Five - Responses to Autism: Support, Healing and Journalism 250 The Horse Boy and the limits of response 252 From behaviourism to bacteria in The Nature of Things 1995 and 2011 262 The Toronto Star’s ‘The Autism Project’ 271 Responses to autism as intervention and Applied Behavioural Analysis 278 Responses to autism as intervention and Alderson’s The Myths of Autism 285 Concluding the focus group work with Loving Lampposts 289 Conclusion 296

Conclusion: Thinking About and Representing Difference Differently 299 Ethics and hospitality in the face of disability 300 Concluding thoughts on intervention 305 Concluding thoughts on representation 308 Concluding thoughts on an academic approach 312 Being present with autism 317

Works Cited 320

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Introduction – Autism and Culture

What does it mean to be autistic in Canada? What self-conceptions, public responses, social and cultural ideas circulate around an identification or diagnosis of autism, or a placement on the autistic spectrum? What feelings, ideas and representations become bound to the labels of autism and asperger in both personal and public spheres in Canada?

These very broad questions motivate this dissertation. The questions coalesce with an increasing fascination with autism and autistic spectrum disorders (ASD) in the Canadian media. In the first two months of 2012, CBC Radio One offered debates on the relationship between autism and savantism on Q (Andrew Silverman on Savantism in

Popular Culture), debates on the potential changing of diagnostic criteria for asperger, a high-functioning variant of autism on Day 6 (Jon Ronson on DSM-V), and Tapestry in a program titled ‘Through a Different Lens: Autism and the Divine’ asked the question: ‘Is this different lens necessarily a disability when it comes to considering the divine? What if the autistic mind offers advantages?’ Add to this a December 2011 episode of The

Nature of Things on ‘The Autism Enigma’ broadcast on CBC television and it appears that the CBC at least has developed something of a fascination with this particular disability or intellectual difference. To reinforce this sense of contemporary interest, In

November 2012 The Toronto Star published a multi-part series on autism called ‘The

Autism Project’ that appeared daily for almost two weeks. Place this media engagement alongside the continued rhetoric of epidemic that surrounds the instances of autism across the western world, with current diagnostic rates typically reported at about one in a

2 hundred, and there is unquestionably a cultural moment worthy of investigation that includes a specific Canadian manifestation.1

Drawing together the broad questions set out above with this current popular interest in autism, a more focused idea emerges, of asking how autism and the autistic spectrum including asperger is constructed, represented and circulated in Canadian cultural production, and cultural material to which Canadian audiences are exposed. This dissertation will take an interdisciplinary approach to analyzing a range of Canadian media materials, including television programs, fiction and documentary film, literature, biography and life writing, and what one could call guidance texts that offer support to those with an autistic spectrum diagnosis or their parents and carers. The aim of the project is to pause or slow down the reading or viewing of these texts, programs and films, and ask how they construct autism in a Canadian context. Additionally I wish to ask how these representations of autism might have consequences for those who live with a label of autism or asperger, and further affect the medical and educational structures that apply and work with the diagnostic labels in the first place. Following therapist Jonathan

Alderson’s idea that ‘how we talk about people with autism and how we characterize them impacts how we treat them,’ I want to explore both how ideas of autism are constructed in the Canadian cultural context, and also how these constructions inform personal, broad public, medical and educational understandings and approaches to autism

(Alderson 6).

1 Establishing exact statistical data on the instance of autism in Canada proves somewhat challenging. The Toronto based Geneva Centre for Autism suggests amongst their frequently asked questions section that ASD rates in Canada run at about 1 in 100, but they reference these figures to the American Centre for Disease control and prevention (Geneva Centre for Autism).

At the heart of this research, and my own personal path into disability and difference, is the disability studies argument that diagnostic categories such as autism are not exclusively the product of scientific and medical discovery, but these labels are always applied to individuals within complex social and cultural contexts. Critically these labels and categories of difference and disability emerge in education, work, and health care, but they are also experienced culturally via film, television and in the case of this research, a whole array of Canadian media and cultural products that are available in, or are broadcast into, the Canadian market.

The intellectual move here is to think of autism not as identifying an aspect of nature that has always been present, in effect laid dormant waiting to be discovered, but to think about these medical, educational, and potentially legal identifiers as interventions in the complex continuum of human diversity and experiences. Autism and its spectrum in this sense does not emerge clean and simple from medical discovery but is troubled and questioned by historical inquiry, cultural contexts, and the demands and expectations of different social settings. Once we engage with the idea that medical labelling is not the exclusive route to understanding and identifying difference, space is opened up for the constructive and constitutive role of other less formally diagnostic texts such as film, television and literature, and in consequence their critical analysis. As Beth Haller points out, ‘most non-disabled people still learn about disability issues through the media, rather than through interactions with people with disabilities’, and so through this simple idea, the rationale emerges for research that explores what autism is and does via a Canadian media landscape (iv).

A fuller exploration of the history and debates on disability as construction rather than discovery, and the role of representation in the social understanding of disability will be opened up in Chapter One. For now, in setting out the key themes and questions that will run through this dissertation, it is worth establishing how disability studies offers a critical background to the path of this research. Lennard Davis offers the following idea in relation to physical disability:

In the task of rethinking and theorizing disability, one of the first steps is to understand the relationship between physical impairment and the political, social, even spatial environment that places that impairment in a matrix of meanings and significations. (Enforcing Normalcy 3) How well does this idea work for intellectual disabilities such as autism? Within this thinking is the idea that disability does not simply exist as a fault line in the individual, but in the limitations in the social spaces and cultural frames around the individual. Put simply, this places the disability in the relationship between the individual and their world, at the meeting point of a person’s limitations and actions and a society’s response. In the context of autism this approach leads to the question: how much of the disability is found in the relationship between the individual and social assumptions about what constitutes normal behaviour? There are problems with this concept of seeing autism as social noticing, notably in relation to the reality of caring for people on the more disabling end of the autistic spectrum. Critically, however, in conceiving of autism as potentially formed in the spaces between the individual and the social we can consider how many behaviours that could be accepted as aspects of the normal spectrum of human variance and eccentricity, or could even be understood as advantageous, become pathologized as neurological disabilities through a formal diagnosis or label. Tanya

Titchkosky offers us the idea that ‘A ‘disability identity’ does not belong strictly and only to those of us who are identified as disabled…. It is impossible to experience disability outside our relations with others’ (Disability, Self, and Society 4-5). Here Titchkosky reinforces the idea that the study of disability and the inquiry into how disability is made pulls disability labels like autism out of a strictly medical space, but she also turns this questioning around and asks that if a sense of what it means to be disabled is not concise and fixed, then a sense of what is normal must also be drawn into question. This, then, is an example of the debate about what constitutes ‘normal’ or normalcy that occupies a central place in the field of critical disability studies, the field in which this work will make its central contribution. One of the questions to be asked here, then, is what is the role of cultural production in mapping out what Canadians perceive as normal and abnormal human function, and how are the limits of the normal or typical shifted by ASD diagnoses in both diagnostic and popular Canadian social spaces?

In the debate about what constitutes normality is the challenge of positive or negative responses to specific points of disability identity. In exploring representations of autism, one needs to ask: are labels such as autism examples of limited and limiting social vision, of the inappropriate categorizing of human diversity? Or are they examples of the progressive recognition of a specific disability and the needs of particular individuals?

Here we see the disability studies debate between disability as inappropriate social construction, as a negative categorizing of difference, and alternatively as a form of potentially proudly embraced identity politics. In his book Unstrange Minds Roy Richard

Grinker offers the idea that ‘under the rubric of autism we now find a multitude of emotional and cognitive problems, problems that used to be given other diagnostic labels

6 or that were even considered within the range of the normal’ (4). For Grinker this has relatively positive outcomes: ‘this book argues that the newer, higher, more accurate statistics on autism are a sign that we are finally seeing and appreciating a kind of human difference that we once turned away from’ (5). Contrasting this position is one offered by

Shelley Tremain that ‘the more individualizing the nature of the state’s identification of us, the further the reach of its normalizing disciplinary apparatus in the administration of our lives’ (Disability Studies Reader 192). Tremain, then, argues that the modern world is increasingly focused on categorizing otherness for reasons of control and management, and that the creation and application of diagnostic labels is indicative of the inappropriate medicalization of diversity.

For an example of how this debate over disability identity and regimes of labelling is captured in contemporary popular culture, and to offer an example of the potential methods of this dissertation, one can look at how the idea of the ‘mutant’ is handled in the latest incarnation of the X-Men film franchise, X-Men First Class. Some fifty minutes into the film Xavier (played by James McAvoy) and Eric Lehnsherr/Magneto (played by

Michael Fassbender) debate the relative merits of being known and identified to the world as ‘mutants’, or if their lives would be better and safer if they simply hid their differences and tried to pass as ‘normal’ human beings. Xavier suggests that ‘we can help them’ in relation to the impending cold war crisis to which Eric offers the caution: ‘Can we?

Identification that’s how it starts, and ends with being rounded up, experimented on, eliminated.’ Xavier replies, ‘not this time… they need us.’ This debate repeats as an undercurrent throughout the film and comes to a head in the closing scene where we see that Eric’s pessimism and fear is fully justified. After the mutants save the world from the

Cuban missile crisis, the combined Russian and American ships follow CIA instructions to destroy the remaining mutants; the ‘normal’ unite against the abnormal. This, then becomes powerfully allegorical for how differences such as autism are handled within disability debates and contemporary culture, of the debate illustrated by Grinker and

Tremain between an embracing of categories and labels of difference, and a position that says that labelling regimes that emerge from medical hegemony are typically manipulative and disabling.

While considering these academic debates and the exploration of related ideas in media products such as feature films, it is critical to remember that autism, its spectrum and diagnosis, affects real individuals, and that within the critique of the medicalization of intellectual difference, it is also easy to ignore the fact that even in the last forty years, many of those diagnosed with an intellectual disability, no matter what label was actually applied to them, were excluded or significantly marginalized within mainstream education and health care systems. The new cultures of labels such as autism and asperger have in many instances opened up space for the one time ‘written-off’ to gain access to education, to access alternative ways of learning, and for good or bad, has spawned an industry of child and adult support. Fundamentally, this is Grinker’s point when he talks of a ‘kind of human difference that we once turned away from’ emerging from hidden social places and institutions (5). There is also many an adult who has received a diagnosis later in life that has acted as a very powerful explanation for past challenges that creates a productive sense of self-understanding.2

2 The disability academic Judy Singer makes this point when she talks of finding an explanation for her childhood and adult challenges in a diagnosis of autism, that ‘whereas the traditional image of ‘diagnosis’ is of something reluctantly sought, dreaded, resisted and imposed from outside, people with ‘marginal’ neurological differences, clamour at the gates, self diagnosed, and

Countering this, there are also many individuals who have felt marginalized by their diagnosis, and who have been subject to at times inappropriate and demeaning educational and medical interventions as a consequence of their autism label. This is a position expressed by many in the advocacy community in relation to behavioural interventions such as Applied Behavioural Analysis (see Broderick, “Autism as

Rhetoric”), and connects to the history of autism being seen as a product of detached and cold parenting (For a Canadian example of this history, see Vasey, The Road Trip). The very idea that the diagnosis of autism can have its productive potential, can help access services and advocacy, and can be implicated in journeys of self-understanding, but can also be a diagnosis of deficit that can limit lives, provides a key motivation for this academic work. Here, then, is the justification for the interrogation of the Canadian cultural and representational aspects of a subject that is often understood within a limited medical frame.

Running parallel to this wish to be sensitive to the role that representations have in the lives of autistic individuals, I also want to act with caution in the application of academic ideas and theories when critiquing these autistic images. This is to recognize that the academic critic and his or her interpretations offers one productive understanding of a representation but this does not complete or finalize a reading or interpretation.

Working in the context of disability and diversity there is a need to be present to the

demanding to be let in’ (Singer 65). There is a need for some caution here: one should see this idea of self-understanding, this idea of making sense of what might be called an awkward life, as an aspect of social marginalization as much as it is an understanding of a sense of neurological exceptionality. In other words, this moment of self-understanding as different, as a label, explains a relationship, not to some natural idea of normal, but to a shifting, moveable ideological, social and cultural concept of normal. As is noted by Todd Drezner in his film Loving Lampposts a diagnosis of autism can also come with a powerful message of fear (See Chapter Five for a detailed discussion of Loving Lampposts).

9 diversity of voices that can reflect on a text and the diversity of interpretations that can follow. Disability scholar Jay T. Dolmage points out that ‘disability studies should teach us that no meaning-making is ever that able’, that we should be careful as academics of drawing a too singular path from authorial intent to a critic’s concise and accurate interpretation (8). Dolmage argues that an author can neither get a disability representation ‘straight’, nor can the critic ever capture a totality of its reception or social impact (8, 9).

In her seminal study of popular fiction, Reading The Romance, Janice Radway also makes the point that textual analysis can construct the idea of a singular passive audience that is subject to ideological meaning and is not an active participant in the meaning making process (6). In order to mitigate against this potential for overburdening representations and privileging textual methodologies that often work through an ableist idea of a singular academic viewer, I have included in the research for this dissertation the voices of five people who came together as a focus group to view and discuss representations of autism. This wish to bring in the voice of the audience to work alongside the ideas of the academic critic is not only a desire to acknowledge that this work is deeply connected with ideas of diversity, but is also a recognition that there is value in extending and combining existing methodologies and as I noted in the preface, academia is at its best when done ‘differently’.

Bearing in mind these guiding principles of moving carefully through the textured and media landscape of autism because I, and this project, believe that real human experience is affected by these representations and how they are understood, and bearing in mind the need to be aware of how critical academic tools are used in the context of

10 representational critique and the need to listen to a diversity of voices, I will now set out the issues, ideas and texts that will come under discussion in the following chapters.

In Chapter One: Autism, Disability, Academia, I will establish the theoretical parameters and framework of this project by tracing a history of critical disability studies in the humanities and the intersection of this academic history with the emergence of autism into diagnostic and popular consciousness. This will follow the history of disability studies from its beginnings in campaigning organizations, its engagement with medical and social understandings of disability, and its explorations of disability as identity. Chapter One, then, will lay out many of the tools and ideas with which I will subsequently address specific representations of autism and set out the history of autism as it emerges from what Stuart Murray acknowledges was a new world of child psychiatry in the middle of the twentieth century (Representing Autism 30). The history of autism has moved from Kanner and Asperger’s initial drawing together of a collection of symptoms, through Bettelheim’s obsessive psychoanalytic ideas, to the dramatic increase in diagnosis that has taken place in the last twenty years. This first chapter will lay out this history and debate the potential positives and negatives of autism being seen and being present in particular ways in contemporary Canada.

In acknowledging that how academia constructs and talks about autism is also part of the cultural making of autism, this first chapter will also address the one notable

Canadian academic who has written on the subject, the philosopher Ian Hacking. Hacking has written some half-dozen papers on autism over the last ten years that focus on how the language of classification constructs people, and how broad social and cultural discourses, including fiction and biography, have become implicated in contemporary

11 knowledge of autism. He offers the idea that diagnosis and labels like autism interact with labelled individuals and this in turn ‘helps to produce their behaviour, which in turn confirms the diagnosis’, thus ‘they act as the philosopher would say, under descriptions’

(Hacking “Inaugural Lecture” 10). Within the first chapter I will debate not only the useful and problematic aspects of Hacking’s engagement with autism, but how his ideas can work with disability studies approaches and the history of autism to explore the role of representation in the Canadian understanding of the autism spectrum.

If the role of Chapter One is to set out a history of critical engagement with disability in general, and autism in particular, then the role of Chapter Two: The Unruly

Issue of Representations, Audiences and Methods, is to look at how disability studies has addressed the problems of disability representation in the media and introduce the ideas behind the focus group that challenge some conventional academic approaches to media criticism.

Martin Norden in the introduction to The Cinema of Isolation makes the argument that cinematic representations both reflect and inform social attitudes to disability (x).

Norden’s work marks a first step in the history of disability studies’ critical engagement with cinematic representation and forms part of a broad critique of how disability is represented through literature, cinematic fiction and documentary. In Chapter Two I will explore this academic endeavour including David Mitchell and Sharon Snyder’s idea of narrative prosthesis that illustrates how disabled representations become character shortcuts and backdrops for the heroics of the non-disabled. In order to illustrate and explore these academic tools, I will look at how they can be applied to two cinematic representations of autism, Rain Man, a film that has become something of a meta-

12 representation of autism marked as disability and savant skill, and Black Balloon, a more recent Australian film that has been praised from within the disability studies community.

Chapter Two, then, will set out where academic thinking about disability representation has created productive tools of critique and how these tools will be put to use in this project, but I will also suggest where I believe academic approaches and intellectual practices can be extended. Chapter Two will therefore include a justification and explanation of how I intend this project to make an interdisciplinary shift into drawing together both humanities textual analysis approaches and an audience focused exercise that will bring multiple voices into this dissertation. Taking inspiration from

Radway and her own reflections on her work in the updated 1991 preface to Reading The

Romance that no method completes and finalizes a reading of a text, Chapter Two will set out the inspirations behind the inclusion of audience research in this project, and the specific methods and approaches used in this work (8). In addition to tracing the history of disability media scholarship, Chapter Two will also set out the methods and intellectual arguments behind the focus group project, including details of the choice of films and television programs, the structure of the conversations, and why I deliberately steered away from conventional interviews in a wish to create an open exchange of ideas.

Chapter Two, then, will tell the particular history of the focus group experience and prepare readers to meet the group’s responses to specific texts as they emerge and are debated within the chapters that follow.

In Chapter Three: (Retro)diagnosis, Biography and Function I come to the first application of the theories and ideas introduced in Chapters One and Two. In looking at the biographical construction of Glenn Gould as an example of the retrospective diagnosis

13 of the gifted with aspergers, I will explore the dangers of conflating an autism spectrum diagnosis with ideas of genius and special talent that often sensationalize the contrast between ability and disability. The very business of diagnosing historical figures also comments on the changing impressions and language of mental health and difference, as we see biographical constructions of Gould shift between ideas of mental illness and neurological exceptionality. In exploring both Gould and speculation about Marshall

McLuhan being aspergic, I will illustrate the dangers of a historical figure being captured and dominated by an autism spectrum label. In looking for a broader reaction to the diagnosing of Gould, Chapter Three will also offer the focus group’s thoughts on the biographical film 32 Short Films About Glenn Gould. By including the ideas of the focus group, I want to offer the group’s position on the validity of Gould as aspergic, and also explore how the group commented on the potential for retrospective diagnosis to create a sense of historical community for people labelled in the present.

If retrospective diagnosis illustrates the status of the autism spectrum as the current label of choice for awkward genius, then this links well to the idea raised by Ian Hacking and the journalist Benjamin Wallace that asperger and autism have become contemporary metaphors for concerns about technology and the technological competences of those who understand it. Chapter Three, then, will also explore how this new use of autism as metaphor for technological ascendancy also plays off the conflation of social awkwardness, intellectual gift, and certain processing competences associated with exploiting the Internet.

One of the dangers present in the idea of asperger as a conflation of awkwardness and genius and its exploitation as metaphor is not only the expectation of finding this

14 combination in every aspergic individual, but also the divide it sets up between autistic lives that are validated by their gifts and other locations on the spectrum that are cast as what Hacking refers to as ‘thin lives’ (“Autistic Autobiography” 1469). Using Stephen

Katz and Barbara S. Marshall’s idea of how contemporary humanity is cast not as normal or pathological, but as functional or dysfunctional, Chapter Three will also explore how the question of functionality and expectations of financial and market contribution intersect with the autism spectrum. This will be to offer critical reflections on how disability is judged and referenced against an individual’s ability to be an ‘independent’ contributor within a capitalist society and how the language and perceptions of the autism spectrum become bound to contemporary post-industrial ideas of functionality and contribution.

If the idea of autism as cultural metaphor and place of exceptional gift creates something of a fantastical and uncomfortable image of autism, then contemporary biographical accounts of real autistic lives should offer a more grounded contrast.

Biographical texts written by autistic people or their parents have the potential to engage with the lived experience of autism, of the pragmatics of intervention, therapy and support, and of negotiating with social, educational and work contexts. As Hacking argues in his paper ‘Autistic Autobiography’, it is via these first or second-hand accounts that much of the new language of autism is emerging. To offer a Canadian vision of this biographical making of autism Chapter Three will also look at the 2012 book Carly’s

Voice which documents Carly Fleischman’s emergence into written expression, and

Gloria Pearson-Vasey and Kevin Vasey’s The Road Trip: Life With Autism. Both these texts are fundamentally authored by parents and they focus on parental frustration in the

15 face of autism and its disabilities. The critical concern with such accounts, which is particularly present in Carly’s Voice, is the narrative arc of overcoming and recovery that casts the individual story as exceptional and therefore not representative of autistic experience as a whole. As I will discuss in this chapter, it is when the autistic voice itself is present in these books that insight and the new language of autism emerges, and this idea is also illustrated in the Bridges-Over-Barriers project that operates out of Guelph,

Ontario. The Bridges project has produced both a book and a DVD that introduces ideas of supported communication in relation to autism, and makes a campaigning stance for understanding much of autism as difference in communication rather than disability. The

Bridges DVD also provided another opportunity to work with the ideas of the focus group and their fundamentally positive responses to this, a rare instance of a representation produced directly by autistic individuals.

Chapter Three, then, traverses and acknowledges a range of ideas for understanding the autistic spectrum, starting with the wish to find autism present in historical individuals and seeing how this intersects with autism’s exploitation as metaphor. The chapter concludes with an attempt to get closer to direct autistic expression through biography and via the campaigning words of an autistic community.

The exploitation of autism as a metaphor and the speculation over the autistic status of the famous is one indicator of the presence and currency of autism in Canada. Another sign of autism’s status is the use of autistic characters in fiction. The question to be asked by Chapter Four: The Making of Autism in Canadian Fiction is: what ideas and impressions of autism are being made in Canadian novels and feature films, and how do these representations contribute to both the language of autism and the lived experiences

16 of people on the spectrum? This chapter will start with Douglas Coupland’s 2010 novel

Player One: What is to Become of Us. This book includes the autistic Rachel who finds herself confined to a hotel bar while a minor apocalypse rages outside. Through Rachel,

Coupland offers us a complex image of contemporary ideas of neurodiversity and diagnostic awareness, but it is one combined with some uncomfortable metaphysical ideas that imply the potential for a divine cure for autism.

There are, then, concerns that Coupland uses autism as a descriptive shortcut and creates an inappropriate connection to the divine in his work. Presenting an even more challenging image of asperger is Margaret Atwood’s Oryx and Crake. In making her near-future dystopia Atwood casts the image of asperger and aspergic individuals being responsible for cultural and social collapse. In Atwood’s text the aspergic Crake takes on the role of ‘mad-scientist’ as he creates a virus to kill off humanity. Atwood’s novel in itself creates a disturbing connection between asperger and dysfunction, but this chapter will also analyze how impressions of the spectrum can get further narrowed as critics simplistically understand the assigning of a disability label as full character explanation.

The disturbing presence of autism can also be found in the supernatural thriller In

Tongues of The Dead. Here the autistic Matthew, complete with savant skills, becomes the silent backdrop to a story of fighting angels and secret manuscripts. Tongues is a clear example of the misguided use or even abuse of an autism label, but it is also an example of the current cultural status that autism has achieved. Tongues and its author Brad Kelln creates something of an un-literary contrast to Atwood’s canonical status, as does Lori

Kohlman’s Horses, Hockey and Haloes, which is a self-published Christian motivational

17 story of prairie life and raising an autistic child. As with Tongues, though the autistic child is the central plot device, he has no interiority or agency in the text.

Disability Studies rightly warns us that much of the fictional representation of disability is exploitative and reductive and it will therefore be part of this chapter’s task to look for this tendency in literary and cinematic fiction. However, as was explored in

Chapter Two there is a certain danger in looking for, and therefore finding, these problems in all disability images. This, then, is the reason for drawing on the ideas and expressions of the focus group. In Chapter Four their work comes in with Snow Cake, a fiction film set in the northern Ontario town of Wawa. For the group this film raised the question of whether it was guilty of using the autistic Linda as passive backdrop as Stuart

Murray suggests, or if she was a full and complex character (Representing Autism 124).

In the focus group’s alternative reading of this film, that challenge received academic opinion, Chapter Four also illustrates the potential benefits of working with the unruly reality of real audiences and their varying opinions on a representation.

Chapter Four concludes with a return to the speculative and retrospective with a look at the idea that Maud’s child in Jane Urquhart’s historical novel The Whirlpool is autistic. Maud and her fellow characters in the book could have no idea of the child as autistic as autism was not a way to understand people in the time frame of the novel, but the child (who is never given a name) displays many of the habits of autism and has been critically received as such (see Turner 103). Though one should proceed with care in labelling fictional characters, as I discussed in Chapter Three, to have Maud’s child as autistic in The Whirlpool allows for disability to add to the critique of colonialism and its reductive habits of naming that is a central theme of the book.

Chapter Four, then, explores how autism is described and captured in Canadian fiction and debates how its critical reception has consequences for how autism is viewed beyond an academic setting. In looking at the focus group’s responses to Snow Cake, this chapter also raises questions about method and draws on the thoughts of more than one critic. At heart, this chapter looks to remind authors and critics of the responsibilities they have in creating disabled characters to the lived experience of any given disability.

In a sense, everything presented in the first four chapters of this dissertation is a response to autism, in that autism and the idea of an autistic spectrum is itself a response to certain observed phenomenon that have come to consciousness within certain social contexts. This is in addition to the simple idea that I am discussing representations of a disability that has achieved a certain cultural interest, but in Chapter Five Responses to

Autism: Support, Healing, Journalism, I will offer a series of more deliberate responses to autism. This is to look at texts that offer descriptions of what autism is; to look at how the news media has responded to the presence of autism in Canadian culture; and how a society and individuals might respond to and intervene with it.

Chapter Five starts with looking at a radical approach to intervening with an autistic child with the feature length documentary The Horse Boy which follows a family’s attempt to address their son’s autism by visiting shaman in Mongolia. Though this is not a

Canadian film it was shown at Toronto’s HotDocs film festival in 2009 and had a widespread DVD release in Canada. It is included in this study as an example of the sort of international material to which the Canadian market is subject and it was part of the focus group research as an example of an extreme response to a diagnosis of autism. This film also offers an image of autism as the backdrop for heroic and radical action on the

19 part of parents, and at times it explores complex debates between healing, cure and recovery. This chapter also follows the focus group in exploring two contrasting episodes of the long-running CBC documentary series The Nature of Things that describe both what autism is (or was thought to be at the time of original broadcast), and different forms of medical and educational response. These episodes bridge a gap of sixteen years from

1995 to 2011, and contrast something of a panic raising conception of autism in 1995 to an idea of autism as combination of genetics and bacterial toxins in 2011.

Autism as current health and social crisis is also the underlying theme of The

Toronto Star’s ‘The Autism Project’ which was published as a ten day, multi-part exploration of autism in November 2012. Despite its claims of originality and finding new material on autism, the Star’s series was something of a missed opportunity that repeated and confirmed many of the clichés of autism as damaging epidemic. In this approach, it is another example of autism being cast as social problem rather than example of social diversity.

These contributions from the CBC and The Toronto Star open up a debate that will run through this chapter about the relationship between how autism is perceived and described, and how it is responded to in medical, educational, social and representational contexts. This is to explore the contrast between autism as disease to be eradicated or recovered from, and autism as a form of human variability that either does or does not require support. Chapter Five, then, will also look at how the discourses around therapy engage with, and at times require, autism to be viewed under a medical model. The promoters of Applied Behavioural Analysis, the most common intervention with autism, make claims for recovery, and as Alicia Broderick explains, ideas of recovery inevitably

20 imply that autism is a negative condition or illness rather than an example of diversity or disability (3).

Entering the debate on response and how, or if, to respond to autism comes a range of texts that offer guidance, advice and suggested interventions for people who are autistic. In a Canadian context, Jonathan Alderson’s Challenging the Myths of Autism offers both a variety of ideas for therapy for autistic children, and also shows an awareness that how we talk about and describe autism affects how a society approaches it

(6). His work stands out from the representations found in the two Nature of Things episodes and in the Toronto Star series as he acknowledges the complexity of autism and he remains open to a wide variety of supports and interventions. In this, Alderson focuses on the person rather than their disability label. Though more instructive texts like

Alderson’s typically claim to be descriptive guidance, part of the argument of this dissertation will be that these support texts are also part of autism’s cultural performance.

The final representation explored in Chapter Five is Todd Drezner’s American documentary Loving Lampposts. This film was watched at the sixth and final meeting of the focus group and was added to our original schedule to provide a more positive telling of autism. The film includes a number of autistic voices, something members of the focus group had been asking for. It also engages in the debates between autism as disease in need of cure and the image of autism as disability and diversity that may benefit from specialist support. Drezner’s film gently questions the cure movement and draws the journey of representation exploration to an end with a more positive, complex engagement with what autism might mean.

In the Conclusion: Thinking About and Representing Difference Differently, I want to reflect on the impressions of autism that have emerged in the proceeding chapters and how these representations match up to ethical ideas about being hospitable to difference and disability. In this conclusion, then, I will use Emmanuel Lévinas’ ethics of knowledge and Jacques Derrida’s idea of unconditional hospitality to reflect on both the representations discussed in this project, and also on the methods of inquiry used here.

This will be to argue that the alternative, interdisciplinary move made in this project is one that puts the mutual and shared acquisition of knowledge ahead of theory and in the process takes an ethical and hospitable stance towards autism, autistic people and the critique of autism’s representation.

Robert McRuer offers a caution in this task of media analysis, that academia, and disability studies as no exception to this, all too easily isolates the text from its context and reifies its moment of criticism (34). McRuer expresses the wish to be ‘cautiously critical of a disability studies tendency to focus on the image apart from the space where the image and the (disability) identities associated with it are produced’ (34). In taking on this caution in everything that is done in this dissertation, I hope that this project will produce new and valuable knowledge for academic consideration, and for the autistic community and its supporters. In this conclusion, I will look to the knowledge gained in the preceding chapters and offer thoughts on how to respond to the difference that is autism in new and more productive ways.

Before concluding this introduction, I want to offer a brief discussion on the language used to describe autism, the autistic spectrum and asperger. Firstly there is the challenging issue of whether we talk about persons with autism or autistic people.

Emerging from campaigning and disability rights discourses is the idea of ‘persons first’ language. This is an argument for talking of a person with a disability, rather than talking of a disabled person. The idea here is that ‘persons first’ language puts the individual and their humanity ahead of their disability or impairment, and the individual is seen prior to any disability they may have. The problem with ‘persons first’ language is it perceives disability as an adjunct to a ‘normal’ person and does not allow space for a disability label to be embraced as an aspect of identity, and it thus fails to see the possibility of a positive disability subjecthood and a positive acknowledgement of difference.

This debate is illustrated in two contrasting Canadian approaches to disablement.

Gwyneth Ferguson Matthews in her collections on disabled women’s experience offers the idea that ‘I am a human being who just happens to be on wheels’, so placing the individual prior to the disability that is an adjunct to their fundamental humanity (133). In contrast Rod Michalko steps into an alternative disabled space when he states, ‘I began to see both blindness and sightedness as “cultures” possessing different customs, norms and belief systems’, and he confirms his critique of the person first approach with the argument that ‘suggesting that disability is merely a secondary feature of one’s identity and that we are persons first and persons with disabilities disavows both deviance and disability’ (The Two-in-One 4, 11).

In the context of talking about autism the challenge with a person’s first approach is that it leaves space for autism to be seen as disease and medical deficit that attaches to the person labelled. This also plays into the idea that within someone with autism, a

‘normal’ person is hidden, waiting to be revealed by medical intervention. The challenge in the language of ‘a person with autism’ is that autism is then open to being understood

23 as a disease to be cured or recovered from. Conversely, the ‘autistic person’ approach allows for autism to be a central part of an individual’s subjecthood and way of being in the world, and supports the idea of a human variance model. The problem with ‘autistic person’ is that it can imply that autism is the only or dominant aspect of a person. Despite this last concern my general preference is with the ‘autistic person’ approach. This is also the fundamental approach taken by many advocacy groups when they use terminology such as neurodiversity, neuroatypical and neurotypical (See Murray, Autism 63-65). The idea of autism as neurodiversity implies again that autism and other intellectual disabilities are legitimate examples of human diversity. The terms neurotypical and neuroatypical are used within an advocacy discourse to identify the fundamental difference between autistic (neuroatypical) and ‘normal’ (neurotypical) people. These terms are often used within the autistic community to point to atypicality as privilege and uniqueness and neurotypicality as dull normality. These terms are also implicated in the issue of communication and understanding between autistics and the rest of the world, of the idea that the major problem faced by autistic people is not their autism, but

‘normality’s’ failure to understand other ways of being.

The language of neurotypicality and neurodiversity is not without its challenges for anyone writing about autism. A recent debate on the DS-HUM listserv, noted that the idea of opposing neurotypical to autism presents the danger of closing off space for those who are not autistic to also be non-typical (Brown; Striding). James Striding asked when one should use the term ‘non-autistic’ as opposed to ‘neurotypical’, raising the issue of neurotypical being a place of assumed normality and potentially associated with negative connotations from the perspective of an autistic advocacy position (Striding). Lydia

Brown offered the idea that Jim Sinclair’s original intent in coining the term neurotypical was to simply mean neurologically typical, and that neurominority or neuroatypical referred to those who were not (Brown). The challenging in using ‘neurotypical’ and

‘neuroatypical’ is to recognize how an opposition between neurotypical and autism closes off space for the non-autistic to be neurologically diverse and therefore these terms should be used with caution.

Within the context of this dissertation I intend to remain cognizant of these terminological sensitivities. I will use neurotypical to refer to both those people and the identity position that stands free of either an imposed or self-chosen identity that could come under the heading of neurodiversity. In turn, I will use neurodiversity where appropriate to refer to the diversity debate within the autism community, but also in reference to both individuals and an identity position that are associated with any label or diagnosis of intellectual difference or disability. The term non-autistic will refer to anyone who is not autistic, but this does not imply that they are necessarily neurologically typical.

One further terminological issue arises in this work and that is the contentious apostrophe ‘s’ on the end of Asperger’s. A fuller explanation of the negative perception of the apostrophe ‘s’ can be found in Chapter One, but it is worth noting here that though the Diagnostic and Statistical Manual (DSM) talks of ‘Asperger’s Disorder’ I will typically refer to ‘asperger’ without the ‘s’ unless specifically referencing a case where the fuller name is used. I do this because of a wish to avoid implying a possessive relationship between those with this diagnosis and a particular clinician.

Conclusion

In my claim that a certain Canadian content or Canadian debate is missing, there is one clear justification for this project. Canadian culture is engaged with a whole range of new and shifting experiences of autism and asperger; Canada is not exempt from these globalizing forces, yet to date, there has not been a clear academic debate on how these labels operate in Canadian culture and what new cultural experiences they perform. More broadly, I aim to bring together aspects of traditional textual analysis with forms of qualitative and narrative assessment of those who have worked with these labels and do this work not from the position of a medical or educational expert, but from the position of the cultural experience itself. As I have already suggested above, I also anticipate breaking new ground in this drawing together of these at times contrasting methodologies.

Critically, I hope the originality in this work will emerge from a contextual sensitivity to marginalized experiences and the often unrecognized flows of influences that move back and forth between processes of definition of difference, and how both expert and broad public alike treat autistic people and make sense of autism’s representation. The challenge of the work will be to draw a path through a range of different types of representation and explore how the current issues that trouble, challenge, and fundamentally construct autism in Canada are at play in these texts. This work is important because real Canadians are categorized, buffeted and shaped by their autistic diagnoses, and by popular perceptions and media constructions of this intellectual disability. The idealistic desire, then, is to create knowledges that are useful for real human encounters that have an effect on how autism is conceived and received in Canada.

Chapter One - Autism, Disability, and Academia

The categories by which social life are ordered produce a certain incoherence or entire realm of unspeakability. And it is from this condition, the tear in the fabric of our epistemological web, that the practice of critique emerges, with the awareness that no discourse is adequate here or that our reigning discourses have produced an impasse. (Judith Butler, “What is Critique?” The Judith Butler Reader 308)

In this ‘tear in the fabric of our epistemological web,’ Judith Butler offers the idea that the processes of critique emerge from pausing or slowing down the discourses of a culture and identifying the places where ideas, words and concepts do not line up cleanly with experience, of exploring the places where certain discomforts emerge. In being prepared to be in this place the humanities scholar both explores the ideologies, assumptions and ideas of a culture, but also develops the tools and critical approaches that extend this process of exploration. In relation to disability in general, and autism in this particular study, this ‘tear’ is the realization that disability labels and concepts are more than simple, clean, description of symptoms, but are a web of ideas created in social and cultural contexts. The diagnosis of autism and the knowledge of what this diagnosis means are not neatly encapsulated in terms of medical discovery, but circulate in complex ways within epistemological webs and social realms. The ability to see this particular tear, or rupture of epistemological comfort owes its source to the field of critical disability studies, which itself is lodged in a history of cultural and language debate, and campaigns for the rights

27 of the disabled. This first chapter, then, will trace a path through the history of critical disability studies; its emergence from campaigning organizations; its engagement with medical and social understandings of disability; and its explorations of disability as identity. It is here that I want to trace the debates and history that have formed and affected disability studies as it emerges from the humanities and social sciences as a field, and its relation to the study and history of autism.

The social/medical model of disability and its challenges

Academic discussions of disability have their origins, like much academic debate on rights and identity, in a history of rights campaigning. In the case of disability studies this has its first moments of academic impact with the idea of medical and social models of disability. The social model emerges out of the British disability rights movement of the

1970s. The Union of Physically Impaired Against Segregation (UPIAS) campaigned for greater access to social space and the deinstitutionalization of the physically disabled.

They argued the simple and effective idea that there are people who suffer impairments in this world, but their impairments only become disabling as a consequence of the social, physical and cultural structures around them: ‘In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments’

(UPIAS qtd. Shakespeare, Disability Studies Reader 198).

Explaining the social model, Carol Thomas and Mairian Corker offer the following:

‘disability is a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional well-being (20). This conception of disability as a social/environmental

28 issue has also been acknowledged by international bodies such as the United Nations and

World Health Organization, but these bodies effectively understand the social and environmental component under the idea of ‘handicap’; that is, they perceive that impairments are physiological, disabilities are the individual limitations that result from the impairments, and handicaps are the social and environmental limitations around the impaired/disabled person (see Wendell, The Rejected Body 13; Prince 5).

Critiques of the medical approach or model of disability align to, and become part of, the social model, as they argue that society in general, and the medical profession in particular, places the problem of disability/impairment in the hands of the medical profession. From a medical perspective, disability is positioned as a problem or disease to be cured or resolved. The impaired individual is both expected to subject themselves to all and any attempts to have their disability ‘cured’ by the medical, and society as a whole is allowed to perceive disability as a medically measured departure from normality. It is also from within a medical framework that the language and definitions, the labels and diagnosis of disability, emerge. One of disability studies’ key points is that it is the medical that possesses the social power in relation to disability and difference, and not the disabled themselves. This misplacement of power comes into particular focus with autism as autism is debated between a deficit (in need of medical intervention) model, and a difference (in need of accommodation) model.

Tom Shakespeare makes the point that ‘the social model is simple, memorable, and effective, each of which is a key requirement of a political slogan or ideology’ (The

Disability Studies Reader 199). The social model, then, has proved an effective concept that points out the inequities impaired people face in a culture set up for the able-bodied.

Collections of writings on the Canadian disability movement, such as In Pursuit of Equal

Participation and Making Equality, outline a history of campaigning and engagement with the political that assumes agreement on the social model from the outset: ‘disability now is widely understood to be the consequences of how social, physical and political environments disadvantage a person with an impairment’ (Neufeldt 23). Documenting the campaigns of the 1970s, 1980s and 1990s, these histories and advocacy narratives focus on the inclusion of disability in the Charter of Rights and Freedoms (1982) and the various battles for access that have fundamentally followed a rights and citizenship approach to disability equality.

This rights and citizenship approach leads to academic discourses on disabled persons’ lack of full citizenship. James Overboe invokes Giorgio Agamben’s idea of

‘states of exception’ and ‘bare-life’ to illustrate how disabled citizens are marginalized from full political inclusion via formal barriers to employment and political engagement, but are also marginalized by social assumptions about the validity of disabled people (See

Overboe 4). Michael J. Prince titles his book Absent Citizens, and aligns this idea of absence with the social model when he suggests that, ‘whatever else, the absent citizen is socially constructed, created and reproduced through cultural beliefs, material relations, political rules and everyday social practices’ (42). Prince calls for a focus on the disabled person’s primary humanity when he argues for a ‘decline in the tragedy/charity model, a careful definition of the role of the medical model, and a vigorous expansion of the citizenship model’ (27).

Tom Shakespeare offers the criticism that the social model defines disability as oppression (Disability Studies Reader 201). In the social model, if we eliminate

30 oppression of people with impairments, there is no more disability and what is more an impaired person who does not feel oppressed cannot be disabled (201). Once the societal problems or issues that create disability are mitigated, the identity category of disability potentially disappears. As Theresa Man Ling Lee points out, ‘this objective, if and when realized, has a paradoxical outcome, for to recognize that disability is a social-political construct is precisely to destabilize disability as the essential basis for identity’ (102). Lee, in exploring the relationship between multiculturalism and disability identity highlights this weakness of the social model. If we follow Charles Taylor’s thoughts on multiculturalism, that ‘if we’re concerned with identity, then what is more legitimate than one’s aspiration that it never be lost?,’ we can see that the social model of disability looks towards equality through assimilation and not minority identity recognition (44). This is clearly problematic for disability scholars, specifically for those who support disability subjectivities and the embracing of disability identities.

Despite its critique of the control that the medical profession takes in the lives of disabled persons (institutionalization, drug therapy, rehabilitation), the social model does not at a fundamental level critique the medical profession’s definitions of what constitutes a disability or impairment. The social model takes established ideas of what an impairment is, and proposes the solution to be access and rights. It fails to recognize that disability and impairment are not fixed categories, one assigned to the social and the other to the medical, but that understandings of disability exist in social discourses that do not have a metaphysical stability; they are at least socially mediated, if not socially constructed.

Social construction and ideas of normal

Tanya Titchkosky works with this idea of the social construction of disability when she suggests that ‘it is impossible to experience disability outside of our relations with others’ (Disability, Self and Society 4-5). In this sense an understanding of disability or impairment, be it neurological, developmental or physical, emerges not simply in issues of access and attitudes, but in the complex relationship between what is broadly understood as ‘normal’ and non-normal human functioning. One’s sense of being disabled, impaired, different or normal is filtered through cultural conceptions of what disability means, and of what counts as disabled or not. Here is the engagement with questions of what we see collectively as disability in relation to ‘norms.’ In the context of autism and asperger, this raises the question of what forms of behaviour, social interaction, and responses to systems of control such as education are seen as socially acceptable and ‘normal,’ and so not disabling, and what forms of response or behaviour are seen as unproductive, atypical and unacceptable and consequently identified as disabilities/impairments. What a social construction approach offers over and above the social model is a questioning of the assumptions that lie behind both concepts of impairment and disability. This approach of noticing how the construction of disability interacts with the social also allows the disability scholar to point to the assumptions about what constitutes normal and how one should ‘normally carry on.’ Titchkosky offers the following:

While it is undoubtedly true that disabled people do not do some things in the ways that non-disabled people do, or may not do some things at all, it is equally true that disability highlights how things are ‘normally’ done, that

is, highlights the background expectancies that order this doing in a culture.’ (15) Susan Wendell approaches disability from a feminist perspective and points towards the ableist assumptions that falsely construct marginalized places for disability. Wendell challenges how accepted social discourses around ideas of independence and dependence, sameness and difference, and integration and separatism create a privileged value structure around the physically fit young independent individual that denies much of the biological reality of being human (Disability Studies Reader 243-245). Wendell offers a language focus that points to the prejudices that emerge in everyday discourse, not just in discussing disability, but about what constitutes the virtues of normality. She titles one section of her article: ‘The Oppression of Disabled People is the Oppression of

Everyone’s Real Body,’ and notes that, ‘idealizing the body prevents everyone, able- bodied and disabled, from identifying with and loving his/her real body’ (248). Wendell, in pointing towards the assumptions about the normality of certain abilities in society, illustrates how the borders of disability and ability are socially made.

Statistics and where ‘normal’ comes from

One question that comes out of Wendell and Titchkosky's work is how, and from where, do our ideas of normal emerge? As Davis points out in his book Enforcing

Normalcy, concepts of the norm have a relatively recent history. Prior to the nineteenth- century, pre-industrial society focused its understanding of humanity on the idea of an ideal and the inevitable reality of deficit and failure to reach that ideal (25). With the birth of the science of statistics in the nineteenth-century a process of assessing and quantifying humanity in its average, its normal, and its marginal abnormal conditions, starts to emerge.

This idea of the ‘average man’ was taken up by men like Sir Francis Galton who were engaged in developing the science of statistical method (Davis, Enforcing Normalcy 30).

Galton identified a problem with the ‘bell curve’ of normalcy, that particular desired traits like ‘high-intelligence’ and tall stature have the same non-normal status as their apparent opposites. They fall away from the normal or average in the same way that undesired traits do. They just happen to do it on the other side of the curve. Galton, in his wish to establish places on the curve that were more desirable than others re-plotted the ‘bell curve’ into quartiles so that it no longer showed both the desirable and undesirable deviations dropping away from the normal, but showed the desired characteristics moving up and beyond the average into a place of rare, ideal desirability (34). Through this quartile modelling not only is an average defined, but a desirable improvement on average is also created and inevitably its abnormal, undesirable, disabled counterpart.

What Galton and his colleagues would never accept, and what disability studies points to, is how these desired, preferred traits are socially constructed, contingent and dependent on the needs and expectations of a particular society. A connection, then, exists between the development of the statistically normal and the belief in the desirable superiority of certain types of humanity, and of a particular type of social reform that, at times, looked to eugenics to solve social problems. New professions that emerge in the twentieth century such as psychoanalysis and child psychiatry also create new tools, new measures, and new areas of scrutiny for the assessment of norms and their marginal opposites (see Murray, Representing Autism 30). One of criticisms levelled at the mental heath profession and its central text The Diagnostic and Statistical Manual of Mental

Disorders is that as we identify and label more and more marginal behaviours, as we

34 identify a greater range of human action as abnormal, the narrower our idea of the normal becomes. This position is illustrated by debates around the prevalence of anxiety, depression and shyness as medical problems in contemporary western society and the argument that these conditions have gained diagnostic status for the benefit of the pharmaceutical industry (see Healy Let them eat Prozac, and Lewis, Moving Beyond

Prozac, DSM, and the New Psychiatry). Grinker takes the contrasting position that I noted in the Introduction, of labels, particularly of autism, allowing for specialist support and better general understanding of difference. The question that sits between these two positions is: do the new labels of intellectual disability increasingly pathologize and police the margins of human behaviour, or do they make space for supportive interventions and journeys of self-understanding?

In light of this history of the norm, one can argue that the original social model failed to see the normalizing forces behind ideas of both impairment and disability, and how concepts of normal and its undesirable opposite are adopted as if they are a reflection of natural human priority rather than social construction. In this sense impairment becomes an aspect of nature, as though it is pre-discursive and beyond criticism. A social construction model offers the knowledge that disability, impairment and difference emerge in the combined spaces of the individual and the social/cultural, and in this sense the discourses of disability come more clearly and critically into view.

Foucault, bio-power and disability

A further engagement with social constructionism and disability comes via a more deliberate use of poststructuralism and the work of Michel Foucault. Shelley Tremain in

35 her edited anthology Foucault and The Government of Disability offers us the idea that through an understanding of Foucault’s conception of bio-power and the development of the liberal individual subject, we can see how the divide between able and disabled is constructed as metanarrative. Tremain points to the ‘regimes of truth’ produced via medical, educational and legal discourses of ability and disability, and to how these regimes establish the limits and margins of normal and abnormal (see “Introduction”,

Foucault and the Government of Disability). As Allen points out, impairment ‘is an artifact implanted in the body by the discipline that measures deviation’ (Allen, B. 96). To offer a direct reflection from Foucault, the bio-power established in the repetitive, discursive practices of medicine establishes its own truths, ‘in other words the gaze that traverses a sick body attains the truth that it seeks only by passing through the dogmatic stage of the name.... It is not the gaze itself that has the power of analysis and synthesis, but the synthetic truth of the language’ (The Birth of the Clinic 60).

Tremain further offers the idea that within our modern cultures ‘the belief took hold that the descriptions that were elaborated in the course of these examinations truly grasped and reflected ‘reality,’ and that further, ‘as John Rajchman puts it, the “great complex idea of normality” has become the means through which to identify subjects and make them identify themselves in ways that make them governable’ (qtd. Tremain,

Disability Studies Reader 186). In these ‘regimes of truth’ that are made in medical and educational discourses and institutional practice, ideas of disability, but also impairment and normality, are made via repeatable signs whose repetition naturalizes and makes commonsense these ‘truths.’ Here, then, disability labelling and medical diagnosis is constituted as discovery while disguising its own processes of construction through its

36 dominant discourses. This repetitive discursive bio-power both conceals its own practice and naturalizes its power relations.

A discourse approach also challenges forms of identity politics that break down the human experience into a series of identity categories such as gay, black, disabled, etc., and asks how these categories are discursively constructed and critically for what purpose and by whom? This act of critique not only challenges the boundaries of these intersections, but also points to their subordinated relationship to the un-stated position of normality. Tremain also argues that the modern politic in its identifying and categorizing process deliberately creates more and more detailed categories of difference in order to minimize outsider space, in order to exercise greater detailed control over our lives. She offers the idea that ‘the more individualizing the nature of the state’s identification of us, the further the reach of its normalizing disciplinary apparatus in the administration of our lives’ (Disability Studies Reader 192). In looking at the explosion of labels of neurological difference such as autism, this may prove to be a very useful concept, and it also points to a problem for identity politics. The challenge here is of the same category of identity being both a negative and positive ontology for different individuals and in different contexts, and the problem of embracing and owning categories of otherness that come directly from a medical, institutional context.

Criticisms of social construction and Foucauldian concepts such as bio-power come as a consequence of their complicating approach. Constructionist ideas are criticized for troubling the campaigning simplicity and validity of the social model (see Thomas and

Corker), but the more fundamental disability problem with a too narrowly applied idea of social construction is the loss of embodiment in its poststructural thinking. Tobin Siebers

37 points to this when he argues, ‘the disabled body seems difficult for the theory of social construction to absorb’ (Disability Theory 57). For Siebers the problem with a social construction approach to disability and with poststructuralism in general is that the phenomenon of the body and its physical experiences is lost behind its discursive construction, and so contact is lost with concepts of pain and physical struggle (57).

While acknowledging Siebers’ critique of various forms of social construction, it should also be recognized that concepts like bio-power and other constructionist/poststructural ideas have had significant critical, academic and campaigning value in pointing to the assumptions and hegemony of where disability discourses come from and within what contexts they get formed. Poststructural theorizing has exposed how many of the assumptions about difference have become naturalized by social discourse, policy and politics, and that to borrow from Roland Barthes, many of these assumptions about what constitutes a normal life are aspects of cultural myth; the transformation of history into nature (Barthes 129). In the context of the autistic spectrum this is to recognize that places on the spectrum move in and out of the pathological in different social and cultural spaces, and historical contexts.

Further troubling identity formation

Here I want to return to the issue of identity formation and in consequence the relationship between identity politics and the potential for disability studies to make a critical intervention. Identity politics has long struggled with its liminal relation to both oppression and embracing of the relationship between ideas of imposition of otherness and prideful identification. To start navigating the disability studies engagement with

38 identity and its issues for constructions of autism, I want to start by raising some fundamental disability problems with established academic ideas of identity formation.

Much work on subject formation, and on the construction of identity, derives its understanding from psychoanalysis. These originally Freudian ideas have been effectively criticized in numerous places, notably by feminist critiques of the formation of the female subject being inherently in a place of deficit in relation to the male. Siebers makes the disability link here, when he points out that ‘the castrated body, though imaginary, is read as a disabled body, with the result that all women are figured by psychoanalysis as disabled (Disability Theory 103). Rod Michalko points to the pervasiveness of this relation when he reports his own school-yard experiences of blindness: ‘What better way to exclude me from the “guys” than to castrate me - “cunt eyes”’ (The Difference That

Disability Makes 20-21).

Poststructural ideas of subject formation also often work through Lacan’s mirror phase, and through the idea that we pass from the real to the symbolic, from the imaginary into language, via recognizing ourselves in a theoretical mirror. Critically for poststructural thinking, this is also the demonstration of the non-metaphysical nature of language. Siebers again makes a valid disability studies point here, that the Other that we misrecognize in the mirror is the myth of the able body, that what we project onto the

Other is both a deception and expectation of normalized health and wholeness: ‘we learn early on, as Lacan explains, to see the clumsiness and ineptitude of the body in the mirror as a picture of health’ (60).

I would go further to suggest there are some fundamental disability questions about whether we all pass through this metaphysical step in the same way, if we all pass

39 through it at all. From a disability perspective it is worth asking whether someone with an intellectual disability such as classic autism, who may not join the social language community in a conventional sense, who does not necessarily move into a normative discursive realm, actually passes through the mirror phase in the sense that it is understood by Lacanians? And this raises awkward questions about who is and is not a legitimate subject. So here is the disability studies problem: the theorizing of language and a singular point of entry into a world that is only discursive pushes the body back behind the Lacanian mirror, back into the un-worded, pre-symbolic. In this apparently

Cartesian move that lies at the heart of much poststructural thinking, disability concepts of pain and struggle, of differentiation of physical embodiment and alternative neurological outlooks, are pushed into a uniform, un-theorizable silence. The very idea of a different form of body, of bodily outlook affecting identity, becomes impossible to address if that body has no presence prior to a universal and singular entry into language.

One of the contributions of a disability studies perspective, then, is the idea that the disabled and sick body pushes back from the Real (pre-symbolic) into the discursive and affects the subject and identity formation.

This conception of the body overflowing the discursive forms much of the phenomenological disability criticism of poststructuralism. In this sense we return to

Siebers’ criticism of constructionist thinking and Foucault’s idea of bio-power. For

Siebers, ‘bio-power determines for Foucault the way that human subjects experience the materiality of their bodies. The human subject has no body, nor does the subject exist, prior to its subjection as representation’ (The Disability Studies Reader 174). Here the only physicality left behind the ideology of language is an un-signified body that cannot

40 be differentiated from any other body in its physical and experiential sense. Much as the nature of impairment is left unquestioned in the original social model, for Siebers the phenomenon of the body prior to its construction in language is left unquestioned by social constructionism. Further, it could also be argued that the view from a neurological difference such as autism that does not necessarily pass through normalizing identity formation processes is in danger of being left unacknowledged in a pre-discursive space.

Clearly a complex relationship between disability and identity emerges in these debates and an inquiry into disability identity formation points to the challenges of understanding and working with all forms of identity politics. Stuart Hall in his paper

“Who Needs ‘Identity’?” suggests that our identities are never a perfect fit, and that there is no exact correspondence between a person and their subject position (3). For Hall our identity is a ‘meeting point, the point of suture, between on the one hand the discourses and practices which attempt to “interpellate,” speak to us or hail us,’ and the ‘processes which produce subjectivities’ (the theories of subject/identity formation) (5-6). Though not making a direct disability point here, Hall’s ideas highlight how much more true this idea is for people who find themselves with a disability diagnosis. The labelled individual is subject to the documented and potentially pathologizing ‘hailing’ of a socially marginal identity that ‘sutures’ medical and cultural components into their own subject formation.

And it is a key part of what follows in this dissertation to look at the representational frames that influence both public perception and individual subject formation around autism.

If disability studies’ essential need to acknowledge the bodily has consequences for wider academic debates of identity formation, it also raises questions about how

41 categories of otherness and intersectionality are handled in identity politics. Both

Titchkosky, Michalko and Wendell argue for positive ontologies of disability, of viewing the world from the perspective that the living disabled body provides. They acknowledge that the disabled body allows for a disabled subjectivity to reflect on the structures of able-bodiedness as constructed in the social space. Critically for Titchkosky this is not a denial of poststructural thinking; she argues that ‘our embodiment is text mediated,’ but she advocates for a nuancing of this discursive approach to reflect the effect of the body on discourse and experience (Reading and Writing Disability Differently 7). In this sense the social discursive construction of otherness is not totalizing, but is the key point of access to knowledge of otherness. This not only supports a social construction critique of concepts of normalcy, but it also allows for a radical embracing of difference and a rejection of the social model’s preference for ‘persons with language.’

This acknowledgement of a disability subjecthood provides a way around the social model problem of an identity category that erases itself once the social limitations that create disability disappear. An embraced disabled identity allows for a concept of pride and comfort in both otherness and deviance, but it also exposes disability studies to many of the vexed questions of identity politics. In Disability, Self and Society, Titchkosky acknowledges and embraces a dyslexic subjecthood or identity (3, 30, 35). One of the problems with this approach is that it requires an embracing of the very language, categories, and labels that emerge from the medicalized model of disability. This is specifically a problem for Titchkosky’s embracing of dyslexia which she herself recognizes emerges as a disability as a consequence of a society that privileges certain literate forms of understanding and expression (“Disability Images” 76). Titchkosky in

42 this sense confronts many of her own thoughts on disability and social construction.

Particularly in the realm of learning disabilities such as dyslexia and ADHD (Attention

Deficit Hyperactivity Disorder), as well as elements of the autistic spectrum, much disability campaigning and study argues that these labels are examples of straightforward social construction created by a restricted view of education and achievement. Education campaigner Jonathan Mooney makes this point in Short Bus: A Journey Beyond Normal, when he suggests that ‘blaming the kids for their academic failures leaves our culture’s definition of intelligence and learning unquestioned’ (47). Titchkosky does attempt to negotiate this problem by suggesting that her dyslexia emerges in spaces between personal embodiment and cultural experience, but I would suggest that she is still vulnerable to criticism from a social construction angle of adopting a medical label, and is also open to accusations of narcissism from a more conservative embracing of stigma position.

Siebers draws on Freud to suggest that narcissism is fundamental to traditional conceptions of disability identity, and that for Freud disability is the primary ground of narcissism in that disability is aligned to suffering that inherently leads to a turning towards the ego and self love (Disability Theory 38-39). For Siebers this is ‘an equation that represents people with physical disabilities as the model for the narcissistic, selfish, and self-centered personality’ (38). Here then is a catch-22 for all marginalized identity positions, and for disability in particular: that to intentionally identify with an apparently liminal social position is to deliberately stigmatize the self and therefore be narcissistic.

This process of adoption and rejection of labels illustrates how disability identity categories and medicalized diagnoses flow between negative and positive ontologies.

Disability is fundamentally understood via the medical and in popular conceptions as a state of deficit or negative ontology. As Campbell points out, ‘disability is assumed to be ontologically intolerable, that is inherently negative’ (Campbell 109). Titchkosky suggests this negative ontology is formed in part by a media understanding of disability as something missing (Reading and Writing Disability Differently 124). The question, then, is, does a radical disability subjectivity that embraces disability create disability as a positive ontology? And vitally as more than a critical place to view the world from (a standpoint epistemology)3, but as potentially also the ‘good life?’ Here there is a need to demonstrate the legitimacy and potential for joy in a disabled existence, of finding the equally valuable but alternative life experience of disability that escapes the trap of narcissism. This is claiming a disability identity, not out of a wish for sympathy but the true value of difference. From an identity politics view point, this is the disability equivalent of radical queer studies, of the radical embracing of the marginalized identity and in disability this has become known as Crip Theory with Robert McRuer’s book Crip

Theory: Cultural Signs of Queerness and Disability being a key text on the subject.

McRuer argues that from a Crip/Queer perspective the most ‘severely disabled’ are ‘best positioned to refuse “mere toleration” and to call out the inadequacies of compulsory able-bodiedness’ (31).

However, for those who wish to challenge the medicalization of difference, both

McRuer’s radical embracing of disability and Titchkosky’s self identification of dyslexia are problematic because the voluntary embracing of labels that come from diagnostic texts is inevitably an embracing of a place of deficit and an adoption of the language of

3 It should be noted here that Rosemarie Garland-Thomson refers to standpoint epistemology as a sitpoint epistemology in an acknowledgement of the ableist assumption present in the idea of standing being the only place to view from (Disability Studies Reader 268).

44 control. What might allow an escape from this position is to look at how Judith Butler addresses the idea of the iterability of language in Excitable Speech. Butler offers the following:

But the name holds out another possibility as well: by being called a name, one is also, paradoxically, given a certain possibility for social existence, initiated into a temporal life of language that exceeds the prior purposes that animated that call. Thus the injurious address may appear to fix or paralyze the one it hails, but it may also produce an unexpected and enabling response. (2) Here we have the idea of the iterable and performative nature of language, of the ability of labels to be reinterpreted and to speak back in radical ways to their originators. Labels and diagnoses, the ‘injurious speech,’ escapes its original meaning and creates an enabling response that can push back against original formal meanings. This is Butler’s tear in the epistemic web that allows the named to speak back from their marginalized position and make their own sense of their labelled position.

This may go some way to help Titchkosky escape the negative ontology of dyslexia, and it is also a theoretical way to understand how autism advocacy organizations and campaigns work to promote a rights agenda for autism. Another way to conceive of this debate over labels, which is also indicated in the work of advocacy groups, is the simple, pragmatic acknowledgment that one is working in the reality of the present cultural and social moment, one is working with the language and definitions at hand. And at this moment, that is the language of autism and its spectrum. No matter what principled position one wants to take on how conditions and behaviours are defined, the critic, the

45 academic, and the advocate/campaigner have to enter the conversation somewhere and that somewhere has to include the language that already exists.4

Disability as meta-identity and the ‘good life’

In his exploration of dismodernism Lennard Davis enters the debate on the social construction of disability and identity, and attempts to extend and politicize the idea of disability scholarship to both challenge conventional ideas of identity politics and extend the scope of what constitutes a disability (Disability Studies Reader 231). Again he offers a critique of essentialism in traditional identity politics, while recognizing that disability is one of the more recent categories to enter the academic realms of oppressed minority identities. He consequently acknowledges the nervousness about swapping clear identities for a social constructionist model, and the potential danger that ideas of oppression and suffering can be dismissed as simply discursive. Garland-Thomson captures this dilemma with the argument: ‘thus, the poststructuralist logic that destabilizes identity can free marginalized people from the narrative of essential inadequacy, but at the same time it risks denying the particularity of their experiences’ (Extraordinary Bodies 22-23). Davis offers the solution that the postmodern identity is a disabled one, hence the idea of dismodernism, which signifies that disability scholarship points to the meta-value of disability to express the experiences of all those identified as othered by the hidden position of normalcy (Disability Studies Reader 233). To be black in a racist world is to

4 In his paper “Autism: The Very Idea,” Simon Cushing argues that what we now call autism is a relatively random collection of different symptoms that at some point in the future may be understood as a series of different, independently existing, conditions. He argues that we should take seriously the idea that autism is social construction and look to separate out its various aspects into distinct areas of human difference that have currently been inappropriately brought together under one label (see Cushing 17-45).

46 be disabled, to be gay in a homophobic world is to be in some form disabled by the consequential erasure of cultural power, and more broadly post-industrial monopoly capitalism disables all of us in some form or other.

He concludes that the social constructionist model has had its academic day: ‘once shocking and daring, now it has simply become a way of saying that objects in the world have a history of shifting feelings, concepts and durations’ (235). The discursive turn may have allowed a great deal of myth to be drawn to the surface but it also risked dismissing experience, the body, and individual paths through suffering as also myth. There may be no essential natural reality to the ableist conception of normal, but while it has a cultural presence, it will also have its effects. The task of disability studies in this model is to challenge the idea of a norm, but to do so, not via a theoretical abstraction, but by interrogating the negative consequences of its exclusionary and categorizing tactics. This is to amplify the instability of disability (and impairment) in order to remove the ‘veil of ideology from the concept of normal,’ to show that ‘impairment is the rule, and normalcy is the fantasy. Dependence is the reality, and independence grandiose thinking’ (241).

These ideas of recognizing the construction of concepts of normal and then looking at what they are doing; of noticing the increasingly detailed categorization that is an aspect of the post-industrial world; and of exploring ideas of productive and unproductive difference draw us again toward Robert McRuer’s ideas of crip theory. McRuer like

Davis makes the point that to be gay or a visible minority in a homophobic or racist world is to be disabled or crippled in some way, thereby destabilizing and broadening the categories of disability, but he also points more directly to the political and social consequences of this thinking. McRuer acknowledges that modern, Western neo-liberal

47 societies appear to offer tolerance to various identity categories of otherness, such as visible minorities, homosexuals, and the disabled, but he argues that this tolerance comes with an expectation of market or capitalist conformity and contribution.

McRuer is both rejecting the idea that a place of normalcy actually exists and rejecting the hegemonic process of drawing the disabled and the queer into this aberrant space (183). In this way, crip theory takes on aspects of traditional disability theory by borrowing from a radical queer agenda. Crip theory is not about arguing for space within the frames of normalcy, but is arguing for outsider spaces to exist and be legitimate. It argues for the potential for a radical challenge to the normative and for alternative visions of ‘surviving well,’ of living, to be an aspect of the disability studies agenda (182). In looking at the discourses about autism that emerge from some campaigning groups, crip ideas prove useful challenges to the idea that having an autistic child is the end to any sense of a worthwhile life, and that neurological diversity is simply a tragedy with autistic people always being in a place of deficit if they do not achieve heteronormative, ableist and neo-liberal visions of success. A crip approach that looks for alternative images of the ‘good life’ can challenge the tragedy image of autism and disability. The crip idea of a good and valid life, one that is ontologically tolerable can be looked at in the radical embracing of disability, but it can also be present in representations that gently refuse to see, or never address the very idea of disability as tragedy. In reviewing representations of autism, it is also important to acknowledge the power and potential understated

48 radicalism of representations that show autism as ‘just is,’ as everyday comfortable experience.5

Performativity and felicity

One critical issue that emerges in all these debates over identity and the application and adoption of labels of disability is who is doing the naming. A biographer has a certain agency, a certain performative power to construct; an individual takes a certain control or agency in attaching themselves to an identity, but the committees responsible for creating texts like the DSM clearly wield the power to bring whole conditions, labels and diagnosis in and out of existence; relate them to varying diagnostic criteria; and define treatments and concepts of recovery, healing and cure. In looking at where naming comes from and how it is taken up in various representations, the performative power, the power to affect must also be explored. Within any cultural or social space certain texts and certain parties have greater and lesser performative capital. The philosopher J. L. Austin in his original work on speech acts, on the performative, acknowledges this point with the idea of felicity and infelicity. He makes the point that if he randomly smashes a bottle against the side of a ship and calls out a name for it, unless he is the person authorized or expected to name that ship, his performative speech act is infelicitous (Austin 23). In the same sense, a teacher has a certain felicity to identify a child as autistic, a parent,

5 One of the dangers of both Davis’ idea of dismodernism and McRuer’s crip ideas is that in extending the category of disability to include other marginalized identity positions, the identity position of disability loses its critical power and becomes a broad metaphor for any form of otherness. In the case of autism, this creates the need to be wary of the use of autism and asperger to illustrate broader concepts of marginality and cultural critique, for autism and its terminology to become a contemporary metaphor for social discomfort, and therefore potentially lose a connection to the specific lived experience of autistic individuals. See debates of Wallace, “Are You On It?” in Chapter Three.

49 typically somewhat less, and a psychiatrist, to use Austin as a metaphor, can launch the child definitively into a named disabled future. Without wishing to construct a simple hierarchy of representational texts in this project, it is still important to acknowledge which individual representations and types of representation might have the greater social/cultural capital and ask questions about the power of representations to define and name.

The history of a label

How much of autism, then, is captured by the social model of disability? How much can we critique the representation and making of autism in Canada as a general noticing of, and discomfort at, difference? What apparently disabling aspects of autism emerge or are made problematic by social expectations? In this sense what aspects of autism are simply socially made? How might autism be social construction in a weaker sense, of being a new form of noticing, or new lens upon something that has always been present?

And what of autism can be seen as worthy of celebrating and embracing as identity position, and can this be done without unrealistically denying its impairments, complexities and struggles? In all of the above, there is a need to identify the disability scholarship that is theoretically useful for the interrogation of representations of autism and that which produces good theoretical evidence and critical tools. There is also the need to explore those ideas that reach beyond specific academic endeavour and offer critical agency to those negotiating with autistic identity and life. Thus, this chapter now turns to the history of how autism has moved through various identity states from

50 psychoanalytic illness; to post-vaccine sickness; to neurological exceptionality, and look at how our critical tools can illuminate this history.

Contemporary understandings of the term autism start with two different clinicians working on two different continents, remarkably both creating their categories at approximately the same time. Leo Kanner working at John Hopkins University described what he called autism in his 1943 paper “Autistic disturbances of affective contact.”

Kanner’s understanding of autism or more accurately his understanding of what linked his eleven young subjects was ‘the children’s inability to relate themselves in the ordinary way to people and situations from the beginning of life’ (Kanner 41 qtd. Biklen 30). He also noted high levels of anxiety, need for routine, and poor or no language skills. His concept of ‘affective contact’ comes to define the idea of autism being a condition that prevents or is typified by problems of social connecting and self-isolation.

Stuart Murray makes the point that Kanner’s context is critical, as he was a product of the new world of child psychiatry and the emergence of new institutional spaces within which a collection of symptoms can come together to be observed (Murray Autism 46,

Representing Autism 30). As Murray points out, ‘As with many other disabilities, the clinical observation of autism was brought into being by the process of looking for it, one of voyeuristic authority and then generalizing from the results subsequently found’

(Representing Autism 49). In this sense, we can see the clinical process of bringing together a set of subjects and finding the commonalities among them, and subsequently defining their clinical and diagnostic coherence into a singular diagnostic label. What also emerges in reading Kanner and is explored by Murray is how the metaphoric language of aloneness, isolation and withdrawal gain literal status in the hands of the expert and their

51 clinical report (49). For Murray, this reinforces Douglas Biklen’s idea that autism is often seen as a malignant presence within a person, as barrier or disease to be cured (Biklen 34,

Representing Autism 49-50). But the idea of metaphoric language, of the moving from descriptive idea to clinical certainty also points to how the very process of definition of autism works. Kanner observed certain behaviours and evaluated these observations within his particular cultural and social frame; yet overtime as these descriptions become sediment in clinical documents and manuals, their history in a singular observational context is lost in their generalized, but professional application. In this sense the subjectivity and context sensitivity of autism’s original creation, its relation to history, drops away. The metaphorical decays into an authoritative clinical literal, implying natural distinctions and a precision that may not be present.

Working at almost exactly the same time in Vienna, Hans Asperger also came up with a definition of autism: ‘The autist is only himself…. and is not an active member of a greater organism which he is influenced by and which he influences constantly’ (44). In his paper “Autistic Psychopathy in Childhood” published in 1944, Asperger describes and constructs many of the same symptoms among his four young male subjects as Kanner does. It is not definitively known whether there was any contact between Kanner and

Asperger. Bearing in mind that Asperger was working in occupied Austria under a Nazi regime that had a particularly disturbing interest in difference, and Kanner was working in the United States, it is possible that they were not aware of each others work.6 However,

Kanner was also originally Austrian, and this opens the possibility that there was some

6 It is important to note that Asperger himself appears to criticize Nazi ideas of eugenics in his original paper when he makes the following statement: ‘We are convinced, then, that autistic people have their place in the organism of the social community. They fulfill their role well, perhaps better than anyone else could, and we are talking of people who as children had the greatest difficulties and caused untold worries to their care-givers’ (89).

52 channel of communication between them (see Murray, Autism 50 for further debate on this possible connection).

Critically for the history of autism and particularly the idea of a spectrum,

Asperger’s observations appear to have been of slightly different children, or his personal

‘lens’ was offering him a different perspective. Though Asperger captures many of the same observations as Kanner, he also describes his subjects as ‘little professors’ and does not identify such significant language problems.

In terms of popularity, Kanner was the initial winner with his work being taken up as the first defining text on autism in the English-speaking world. Asperger’s work remained somewhat lost until the British psychiatrist Lorna Wing published a series of case studies that identified a distinct ‘Asperger’s Syndrome’ in 1981. Asperger’s work received its first English translation in 1991 in Uta Frith’s book Autism and Asperger

Syndrome. Frith makes the point that ‘while Kanner’s original paper on autism published in 1943 has become extremely well known, Asperger’s has been strangely ignored’ (1).

Douglas Biklen reports that Kanner was fascinated by the contradictions presented by his patients, of their contrasting abilities and disabilities (Biklen 31). In discussing

Kanner’s responses to his first case study ‘Donald T,’ Biklen offers: ‘it was hard for

Kanner to reason how it was that Donald seemingly could not master the use of ‘yes’ and

‘no’ but could answer a math problem metaphorically. It was an odd juxtaposition of seeming at once obtuse and brilliantly inventive’ (32). This apparent contrast in functioning and ability combined with the gap opened up between the slightly different ideas of Kanner and Asperger makes the space for autism to become seen as a complex spectrum ‘disorder,’ but also present in this moment of contrast is the subsequent history

53 of public fascination with the idea that within the autist is hidden some miraculous compensatory gift as explosively popularized in the film Rain Man.

The next character to enter our story is another American with an Austrian past,

Bruno Bettelheim. Bettelheim, a Viennese Jew had survived both Dachau and

Buchenwald and only escaped death because of a ‘bizarre gesture’ by Hitler, who released some prisoners to mark his fiftieth birthday (Murray, Autism 55-56). Bettelheim was to take autism in the direction of parental blame and psychoanalysis, and create a dark chapter in its history. In his original research Kanner had suggested that autism was biological and talked of ‘inborn autistic disturbances of affective contact’ (50), but he also asked what role parents played in their child’s behaviour. Noting that many of the parents of his original case studies were ‘limited in genuine interest in people,’ Kanner speculated as to how significant this was in the ‘condition of the children’ (qtd. Murray, Autism 50).

Stuart Murray makes the point that ‘indeed, it was Kanner who coined the phrase

‘refrigerator mother,’ the most notorious comment attached to the idea of parental causation of autism’ (Autism 54).

Following contemporary interest in psychoanalysis in the 1950s and 1960s

Bettelheim promoted the idea that the cause of autism was cold and detached parenting, particularly focusing the blame on mothers. His 1967 book The Empty Fortress damned a generation of parents who were impossibly held responsible for their children’s condition.

Bettelheim’s approach was to remove children from their parents and subject them to psychoanalytic therapy within an institutional context. After his suicide in 1990 it emerged that a number of his clinical subjects probably never had autism, and his methods had included the very un-therapeutic approach of beating his charges. Murray

54 who has an autistic child, makes two clear points on Bettelheim, firstly that he ‘came to view autism through the lens of his camp experiences’ and ‘the damage done to those with autism, and to the very idea of how the condition functions in the world, that was perpetuated by Bettelheim and his thinking, cannot be overestimated’ (Autism 56, 58). In discussing Bettelheim, as one needs to with Kanner and Asperger, context is critical. In a moment of psychoanalytic ascendancy not only did it make sense for Bettelheim to look down this path, but also to do so with a certain dogmatic zeal. As Biklen reminds us, ‘thus, in addition to biology, context also mattered’ (35).

With the discrediting of Bettelheim’s methods and a more general questioning of the singularity of psychoanalysis to both explain and resolve mental illness in the 1970s, the refrigerator mother explanation of autism loosens its hold. Interestingly in France autism remained classed as a psychosis until 2004 (Grinker 98). Though France was late in the adoption of psychoanalysis as a therapeutic practice, it has retained an attachment to therapeutic approaches to many conditions longer than the English-speaking world.

This move from a ‘life experience’ to a neurological and biological understanding of autism, and different behaviour in general, will be explored in more detail when we look at the shifting understandings of Glenn Gould in Chapter Three, but it is worth recognizing that part of the damage done by Bettelheim and his abusive take on psychoanalysis has been the subsequent complete rejection of psychoanalytic and general analytical therapies in relation to autism. Grinker in recounting the continued prevalence of psychoanalysis in France contrasts this to the rejection of therapy in the United States in favour of more rigorous scientific method (98). He contrasts ‘evidence-based medicine that relies on neuroscience, clinical trials, and scientific investigation of falsifiable

55 hypotheses,’ to ‘abstract, unfalsifiable theories like those that fill psychoanalytic literature’

(99). The key point here is that in the powerful linking of Bettelheim with all forms of analysis, various approaches to autism and to people who are autistic become bound up with a negative history and are vulnerable to rejection on the point of principle rather than a genuine interest in the needs of the individual.

The rejection of analytic methods in general, removes various supportive approaches to autism, and also limits responses to autism to addressing the specifics of autism as condition, and so fails to place autism in the context of a complex person whose needs, emotional and potentially therapeutic, might extend beyond their diagnosis. There is in this rejection of the therapeutic a rejection of the idea that the autistic can have a complexity or even a presence beyond their label, and it is an example of the wish to narrowly define both a condition and critically, responses to it. Howard Buten, an

American therapist who worked in France, offers throughout his awkwardly titled book

Through The Glass Wall, the productive idea that no one approach, no one therapy, should be pre-judged as the answer to autism, as this is to focus on the disability or diagnosis and not the whole, complex individual before one. Buten calls for a receptive presence to a person, rather than a pre-judged approach to aberrance. ‘It is this “way of being” – our therapeutic character, born of empathy and played for real – that will supply, in part, the necessary and specific human environment within which these incredible people will be able to recreate themselves’ (169).7

7 A similar sentiment and approach to autistic intervention is being explored by Stuart G. Shanker at York University in Toronto with a research project that looks to develop collaborative interactions with autistic children which focus on the child’s needs rather than the wish to impose normalizing limits on their behaviour (see Shanker, ‘Learning Through Interaction’). I will discuss in detail the contrasts between currently dominant behavioural therapeutic approaches and more person-centered, collaborative therapies in Chapter Five.

In this history of autism being adopted by psychoanalysis and Bettelheim we can also see that, even in its short seventy-year life, autism has traversed a complex history that challenges any sense that what we know now as autism is a form of clean clinical unearthing of neurological disability. What is also clear, and will emerge again and again in this dissertation, is that how we treat or intervene with autism tells us about how we see it, and how we see autism has consequences for how, or if, we intervene. Further, these patterns of seeing and intervening are bound to the parallel and overlapping paths of clinical diagnosis and cultural contexts as is demonstrated through the paths from Kanner and Asperger into Bettelheim and our next point of exploration, the contemporary medical defining of autism in the Diagnostic and Statistical Manual of Mental Disorders

(DSM), published by the American Psychological Association, and the World Health

Organization’s International Statistical Classification of Diseases and Related Health

Problems 10th Revision (ICD-10).

The Diagnostic and Statistical Manual, the ‘official’ place of autism

The fourth edition of the DSM, which was updated with a text revision in 2000

(DSM IVTR), places autism and Asperger’s under the category of ‘Disorders Usually First

Diagnosed in Infancy, Childhood, or Adolescence’ (39-134), and the sub-heading

‘Pervasive Developmental Disorders’ (69).8 The DSM does not explicitly state that autism is neurological in origin, but does remind its readers that autism is no longer considered a

8 See bellow for a discussion of the fifth edition of the DSM that was released in the Spring of 2013. As a consequence of the very recent release of the DSM-5, debates around the DSM and its role in diagnosis typically relate to the fourth edition and as such DSM IVTR is the central focus of critique in this chapter. It is also worth noting that the fourth edition of the DSM contains some 886 pages of clinical data and that the first edition (DSM-I) contained 130 pages (‘Diagnostic and Statistical Manual of Mental Disorders,’ Wikipedia).

‘psychosis’ or a form of ‘childhood schizophrenia’ (70). The introduction to Pervasive

Developmental Disorders tells us that they are ‘characterized by severe and pervasive impairment in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behaviour, interests, and activities’

(69). Under the specific heading of Autism, we learn ‘the essential features of Autistic

Disorder are the presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interests’ (70). It goes on to say: ‘Language comprehension is often very delayed and the individual may be unable to understand simple questions or directions’ (70-71). In the

DSM, each ‘disorder’ has its own code, autism is ‘299.00’ and each category starts with broad descriptions of the condition under ‘Diagnostic Features.’ This is followed by details of parameters such as age, familial association, and other potential associated disorders. These generalizations are followed by a specific ‘Diagnostic Criteria’ that lists the type of ‘qualitative impairments’ associated with autism and sets out a structure for the number of these impairments that need to be present to meet a diagnosis.

The term ‘qualitative impairments’ is found throughout the autism specification, as it is for Asperger’s Disorder. There is, then, an acknowledgement (though not one discussed in any great detail) in the DSM that what achieves a diagnosis is not an absolute measureable standard or deviance from a norm, but a subjective set of apparently observable behaviours that can add up to an autism label. Within each heading in the list the descriptions are also subjective. Under the first category of ‘qualitative impairment in social interaction, as manifested by at least two of the following:,’ we get ‘marked impairment in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial

58 expression, body postures, and gestures to regulate social interaction,’ and ‘failure to develop peer relationships appropriate to developmental level’ (75). Here, I would suggest that we see the cultural specificity or context sensitivity of the diagnostic criteria, as one can imagine that different clinicians working in different cultural contexts will have different senses of what constitutes ‘normal’ regulation of social interaction and development of peer relationships.

The criteria for ‘299.80,’ ‘Asperger’s Disorder,’ are similar, but generally less severe, with the critical difference outlined in the ‘Diagnostic Features’: that ‘in contrast to Autistic Disorder, there are no clinically significant delays or deviance in language acquisition’ (80). In this sense the ‘Aspi’ child learns to speak at a typical age and therefore Asperger’s is often diagnosed later in life, potentially when structured social interactions start to happen in a child’s life, like attending school. Asperger’s Disorder only appeared in the DSM in 1994 with the publication of the fourth edition. In the diagnostic criteria of neither condition is there any specific scale of severity associated with each defining trait or deviation from the normal. In its introductory guidance notes the DSM offers the idea that the severity of any ‘mental disorder’ can be classified as

‘Mild, Moderate or Severe,’ and it offers some explanation as to how to apply these

‘grades’ but in general the assessment of severity is left to clinical experience (2).

The DSM is the standard text for the clinical assessment of mental health and disability conditions in most of the English speaking world, but an alternative location for defining autism can be found in the World Health Organizations ICD-10 (International

Statistical Classification of Diseases and Related Health Problems 10th Revision). In the

ICD-10, autism can be found under the broad heading of ‘mental and behavioural

59 disorders,’ and the sub-heading of ‘pervasive developmental disorders F84.’ The ICD offers descriptive definitions of Autism and of Atypical Autism (Atypical Autism is known as Pervasive Development Disorder: Not Otherwise Specified in the DSM and can be applied to autistic symptoms that do not emerge in a typical time frame, or don’t match a straightforward list of characteristics). The DSM’s ‘Asperger’s Disorder’ becomes

‘Asperger Syndrome’ in the ICD-10, and again the definition notes normal language acquisition. It is worth acknowledging that the DSM in its use of the apostrophe ‘s’ continues to associate this diagnosis with a singular clinician and the ICD does not. As mentioned in the introduction, for those in the advocacy movement the apostrophe ‘s’ implies that both the condition, and by implication those with this diagnosis, are in someway in the possession of a singular clinician and therefore the use of Asperger’s is often considered offensive.9

Both diagnostic texts also still use the term ‘mental retardation’ as part of their descriptions of autism and other disabilities, despite much discomfort with this term from within the advocacy community and something of a general cultural sense that it is not appropriate. From a personal perspective, the problem with the term ‘retardation’ is the implication that there is a smooth and consistent path from some form of advanced functioning through normal or typical, down to a retarded functioning that looks uncomfortably like Galton’s eugenic manipulation of the bell curve. In the idea of retardation, little room is left for talent, ability or competence to emerge through anything

9 As I noted in the Introduction, in a recognition of the advocacy position, I will drop the apostrophe ‘s’ unless specifically referencing a use that includes it.

60 other than a normalized sense of behaviour, or for the recognition that we do not all need to perform in standard ways.

Neither text offers a specific definition of high-functioning autism, yet this term is used in numerous texts that discuss autism and asperger. With this lack of official definition, the difference between high-functioning autism and asperger is not easy to establish, but colloquially one could imply that a high-functioning autist is someone who struggled with initial language acquisition, but goes on to ‘function relatively successfully’ and with normal language use later in life. The idea of high-functioning, then, comes to be a point of longing and desire for parents; a further subjective sense of what autism is; and I suspect a definition of the autistic person who can at times ‘pass’ in ‘normal society.’

Critically this idea of high-functioning is all too easily conflated with the idea of some form of special gift, of the high-functioning not being relative to a person’s autistic presentation, but to broader cultural senses of exceptional talent. Within the more clinical uses of the term, this last meaning is not seen as correct, but the idea of high-functioning indicates both the wish to further classify, and just how context-sensitive the lens through which we view autism is constructed.

In looking at diagnostic criteria, Stuart Murray notes that the descriptions paint a certain type of picture of the autistic individual: ‘First, it is evident that the ways in which autism is considered a differentiation from the medical norm are all associated with the negative,’ and he also notes that as with any category of difference, ‘you tend to see what you look for’ (Autism 19, 20). Majia Holmer Nadesan argues that classic autism was ‘a product of the observing types of the early twentieth-century, of the concerns and interests of child psychology, and that Aspergers and high-functioning autism are

61 products of late the twentieth-century and twenty-first-century’ (84). Nadesan also makes the point that in the case of defining intellectual disability the ‘biological and cultural are mutually constitutive’ and she states, ‘I believe we need to explore how various institutional relationships, expert authorities, and bodies of knowledge have sought to represent, divide, understand, and act on biologically based, but socially shaped and expressed behavioural and cognitive differences such as autism’ (81, 79).

The very language used by the medical community to define autism provides an interesting window into how, as Murray points out, the differences that come to be classified as autism are marked as deficits, and that within the criteria of autism and asperger, there are numerous points of assumption about what constitutes normal development, or a normal path through life (Autism 19). What is also of interest here is what these definitions and assemblages of behaviours create, or perform in our culture.

The British journalist, Jon Ronson, interviewed on the CBC radio program Day 6, reports that in his conversations with Dr. Allan Frances the editor of the DSM-IV, Frances acknowledges that the publication of the DSM-IV produced three epidemics of diagnosis:

Childhood Bipolar, ADHD (Attention Deficit Hyperactivity Disorder) and via the creation of Asperger’s, autism. The performative power of the DSM in this sense works in two distinct ways: not only does it create cultural shifts in the sense of what constitutes the normal and the abnormal via its classificatory processes and definitions, but in establishing the space for these new observations, it can also create epidemics. These two forms of noticing, then, come together in the image of new ways of thinking about human

62 difference, of perceiving people in new ways and then something of an explosive sense of this perception and consequent labelling appearing in significant numbers in our society.10

In an article in New York Magazine, Benjamin Wallace also notes that imprecision in editing had its role in the creation of the autism epidemic. In reference to the criteria of

PDD-NOS, he notes that a copy editor replaced an ‘and’ with an ‘or,’ so dramatically opening up the category (Wallace, “Are you On It?” 2). In reading this, one has to wonder where else this may have happened in the DSM, and what other descriptions of behaviour became diagnosable or pathological at the singular, rather than the plural level?

Statistics around autism, as with all statistical data, need to be handled with care, and when reading statistics for the instance of autism one should typically interpret them as relating to the whole spectrum including asperger. As I suggested on the first page of this document, looking for specific Canadian statistics proves to be hard work. Most

Canadian organizations reference the American Centre for Disease Control (CDC) figures and talk in terms of about one in one-hundred children being placed somewhere on the spectrum. In fact the current statistics from the CDC put the instance at one in eighty- eight and one in fifty-four if one looks just at boys. Benjamin Wallace points out that prior to 1980 the instance was below one in 2,000 and that levels of diagnosis have ramped up markedly since then. He also offers some apparently recent figures from South

Korea of one in thirty-eight, and ‘in New Jersey, according to the latest numbers, an improbably one in twenty-nine boys is on the spectrum.’ (“Are You On It?” 2). For

Wallace these statistical changes are clear examples of new ways of seeing people, of a contemporary wish to diagnose and explain difference. He makes the point that ‘every

10 In this sense, the DSM highlights the socially constructed nature of aspects of disability, and points to the social locations in which ideas of the normal and disabled emerge (see the discussion of social construction on page 31).

63 generation has its defining psychiatric malady’ and quotes Nora Ephron: ‘it’s an epidemic.

Or else a wildly over-diagnosed thing that there used to be other words for’ (“Are You On

It?” 1). There is for Wallace a sense that I also share that some clear part of this epidemic, as with the diagnosis of ADHD, is a pathologizing or marking off of normal ‘boyhood’ behaviour that no longer fits neatly into modern pacified lives.11 However, in making this point it is also critical to not forget what is typically referred to as the classic end of the autistic spectrum that is often non-verbal, and also often not toilet-trained into adulthood, and that this condition cannot be assigned to the contemporary narrowing of normal childhood behaviour, but is more clearly disabling, even if it is only a relatively recent habit to refer to it as autism.

From the clinical view-point the consensus on these statistical changes is the result of an increase in awareness of autism and sensitivity to specialist needs within education and health environments (as well as some sense of statistical aberrance). From a more critical disability perspective the statistics hint towards the social construction of what was once seen as simple eccentricity or diversity of human behaviour into a specified medical disorder, or even the pathology of normal childhood, as I have suggested above.

However, for some, neither of these answers is acceptable and in exploring the cultural representation of autism one needs to acknowledge those voices that argue that something more dramatically physiological is happening to cause this increase in autism. This is to look at the arguments that autism is caused by damaging childhood vaccines or by environmental pollution. The vaccine story emerges from the work of Dr. Andrew

Wakefield who published a report in the Lancet in 1988 that suggested that the combined

11 See page 73 for a brief discussion of the gendered nature of autism and Jordynn Jack’s critical reflection on Baron-Cohen’s conception of autism as extreme male brain.

Measles, Mumps and Rubella (MMR) vaccine could cause autism in some children

(Murray, Autism 81). Despite the complete discrediting of Wakefield’s work; his being found guilty of serious medical misconduct; and the removal of all evidence of the article from the Lancet archives, there are still those who argue for the role of vaccines and potentially other external factors in the causes of autism (87). We will explore this in more detail when looking at the Nature of Things episode from 2011 that looked at potential new thinking on the environmental causes of autism and how the focus group responded to various ideas of autism causation. However, what is worth acknowledging here is that the idea of something external to the individual causing autism plays into cultural senses of blame; the potential for cure if the external factor can be addressed; and a problematic issue for an advocacy movement that argues for autism to be an example of human variance. The whole idea of epidemic and unknown cause also connects to

Murray’s suggestion that ‘at the heart of the environment/contagion argument is a worry that the way we lead our modern lives might be poisoning our children,’ and he reports

Grinker’s reflections on epidemics: ‘“Epidemic” is a powerful concept. It implies danger and incites fear, calling up associations with plagues that can sweep through the streets….

With autism, the label of “epidemic” sounds both frightening and tragic’ (Murray, Autism

79; Grinker 5 qtd. Autism 78). If however, we place the term ‘epidemic’ not in the context of biological/environmental fear, but in terms of an epidemic of noticing, then we shift the ground of the debate from the improbable biological to more critical social/cultural questions about how ideas and social structures identify difference, and the aspects of our modern lives that we explore to understand autism moves from biological attack to the

65 nature of modern mental health and education systems and our ways of explaining difference.

A new version of the DSM, DSM-5 was released in the spring of 2013 at the

American Psychological Association’s annual conference (White L1). Of critical interest in this new revision of the DSM is the disappearance of ‘Asperger’s Disorder’ from the manual, with the symptoms of Asperger and Pervasive Development Disorder: Not

Otherwise Specified (PDD-NOS), being subsumed under the heading of Autism

Spectrum Disorder (American Psychiatric Association, DSM-5 Development). Prior to the release of the DSM-5 the DSM-5 Development web site offered the following explanation for this planned change:

Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual’s clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to ‘cleave meatloaf at the joints.’ (para. 2) Not only is this description a fascinating combination of precise clinical language mixed with colloquial metaphor, but it remains clearly lodged in the idea of deficit and pathology. In contrast to the emergence of the DSM-IV in 1994, the announcement of this new version of the DSM received significant media attention. Using the Canadian

Newsstand website that allows for the interrogation of twenty-one leading daily newspapers in Canada, I searched for references to ‘Diagnostic and Statistical Manual of

Mental Disorders’ over the years 1993 to 1995. It produced only five results. Using the same search term to cover 2010 to November 2012, fifty-seven results are returned.

In relation to the disappearance of Asperger’s Disorder, much of the media debate centres on what will happen to those who have a diagnosis of Asperger’s or who would have met the diagnosis. In February 2012 the Globe and Mail offered the headline:

‘Parents of autistic kids fear diagnostic changes will mean reduced services’ and debated parental concern that if their children could not meet the category of autism, would they lose the specialist support that the diagnosis of asperger had achieved for them (Barton).

CBC Radio 1’s The Current and Day 6, have also debated this loss of Asperger’s

Disorder from the DSM in the last twelve months (Frances; Ronson).12

In addition to this general media presence, the mental health profession also engaged in debates over the merits of the new incarnation of the DSM, notably whether it is ready for publication and if it has changed too radically, or not radically enough. The chair of the DSM-IV task force Allan Frances hosts a blog on the Psychology Today website called ‘DSM5 in Distress,’ in which he offers numerous criticisms of both the nature of new definitions and their clinical assessment prior to publication. His entry from

12 The disappearance of Asperger’s also points to the diagnostic catch-22 that faces parents looking for support for their children. The more severe the diagnosis the greater the chance of funding and support for the child, but also the greater potential stigma that will follow that individual throughout their life. The economics of autism emerge in this moment as special education funding and specialist support follow the individual and relate to the severity of their diagnosis. The Ontario Ministry of Children and Youth Services offers specialist intervention (see Chapter Five for a critique of the specific interventions offered) for children that are diagnosed ‘toward the severe end of the autism spectrum.’ This funding can go to a service provider or can be paid directly to parents to source their own intervention plan (Ontario Ministry of Children). School funding typically follows a similar model of following the pupil. The Ontario Ministry of Education provides ‘Special Education Grants’ for students identified with special education needs (Ontario Ministry of Education). An accusation that can emerge in this model is that schools and parents put pressure on professionals to over-diagnose in order to access financial support, and the industry that surrounds autism becomes implicated in promoting diagnosis and the concept of an epidemic.

November 11th 2012 is called ‘You Can't Turn A Sow’s Ear Into A Silk Purse.’ In one of his first posts he admits that ‘as chairman of the task force that created the current

Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), which came out in

1994, I learned from painful experience how small changes in the definition of mental disorders can create huge, unintended consequences’ (“DSM Goes Too Far”). He goes on to argue in this entry that DSM-IV brought many people under the lens of the mental health profession who would have been better off without a diagnosis and he talks of the

‘wholesale medical imperialization of normality’ (“DSM Goes Too Far”). Though

Frances has a valid point, which follows Tremain’s argument about a social capturing and classifying of normality in order to exercise social control, there is a sense in which he is still viewing difference from outside. It is clear that psychiatry is a questionable lens through which to view intellectual differences and life challenges, but the removal of labels, the de-diagnosing of individuals also leaves people in an assumed place of comfort and normality. Here is the assumption that outside of a clinical diagnosis an individual neatly fits within our current social order. In this sense the individual and individuality is again lost, no longer in accusations of disability, but now in assumptions of unidentified normality. Not only does this continue to leave our structures of education un-critiqued, but still does not make space for alternative paths through life to be accepted. Once we mark difference with pathologizing labels it is difficult to escape this modality.13

Media response following the actual release of DSM-5 and the removal of

Asperger’s and PDD-NOS has been relatively low key. The same Canadian Newsstand

13 Despite the disappearance of Asperger’s from the DSM, in this document I will continue to refer to asperger as a current category of diagnosis and way to describe people as its cultural currency is still very much intact. In this sense, Asperger’s and asperger illustrate well that once a label of difference is released into the world it takes on a life of its own beyond its medical documentation.

68 search that I used to find references to the DSM in the lead up to the new release only produces two results that mention the DSM-5 in the months of May and June 2013. These two articles were syndicated across more than one newspaper and the DSM-5 also appeared in a syndicated bestsellers list. Allan Frances’ blog ‘DSM-5 in Distress’ has not been updated since March and Heath Canada continues to reference DSM-IV in its descriptions of autism (Frances; Health Canada). The majority of media comment on the new DSM has focused on concerns that the new version medicalizes and pathologizes large aspects of relatively normal human behaviour, rather than on the loss of Asperger’s.

The Toronto Star is the one major Canadian daily to give space to the new release.

Nancy J. White breaks down some of the new diagnostic categories and focuses on the criticisms that have been made of the new document. Noting the concern that the new

DSM is ‘pathologizing normal behaviour,’ the article quotes Frances: ‘The DSM-5 does just the wrong thing at this historical moment, focusing more attention on people who have, at best, questionable disorders’ (Frances qtd. White L1). Sitting alongside this article is a one-page discussion of the loss of Asperger’s. Though it notes that those who already have a diagnosis will not be retroactively re-diagnosed, the article expresses the same concerns over support and identity that were raised in the earlier media debates on the removal of Asperger’s in the Globe & Mail and on CBC Radio. In commenting on the potential negative consequences of removing Asperger’s the article quotes Kevin

Stoddart, a researcher on asperger: ‘People’s identities are built around labels and cultures and I think the DSM-5 is dismissive of that’ (Stoddart qtd. Gordon “Asperger’s becomes autism” L7). Stoddart’s comment points to who has the performative power to name and

69 set out what represents a condition or set of behaviours worthy of a label and who does not.

This ability for the medical hegemony to bring a condition in and out of existence has consequences for our understanding of identity politics in relation to disability. What does the loss of Asperger’s do for a wish to radically embrace a disability category if its official existence can be lost in an update of the DSM? Recalling his conversations with an asperger support group, Wallace recounts their debating what should be done in light of this impending loss of identity and he reports one member arguing: ‘Let’s keep calling ourselves Aspies’ (“Are You On It?” 7). The tenability of this idea is open to debate.

Attaching to a lost category of identity would appear to be one clear way of exposing oneself to the sort of accusations of narcissism that marginalized identity groups endlessly struggle with.

The changes found in the new DSM illustrates the felicity or force of its naming power, and illustrates the consequences of the medicalization and medical controlling of human difference. One response to concerns that the new DSM includes many mistakes is the suggestion that professionals look elsewhere for their clinical information. Sharon

Kirkey in the Vancouver Sun reports that psychiatrists are looking for alternative approaches that do not diagnose with the DSM (B2). In this challenging of the accuracy and rationality of the DSM, there is a sense that space can be opened up for more subject focused approaches to labelling and diagnosis, but there is also the potential for the DSM to be challenged by equally medicalized approaches to disability and difference that offer no more space to the input of the labelled than the DSM does.

Autism from the view of Government

The medical profession, then, defines autism through diagnostic texts such as the

DSM, and this acts as a conduit for public perception of autism via medical diagnosis and the media discussion of diagnostic criteria, but autism also emerges in another formal or official sense via federal and provincial government documents. In a Canadian government context the autism spectrum is captured under a medical/disease model, both autism and asperger are listed on the Federal Government’s Healthy Canadians website as part of the autism spectrum which comes under the broader category of ‘Diseases and

Conditions’ (Government of Canada). Most discussion of ASD at a government level in

Canada focuses on autism and says relatively little about asperger. The Healthy

Canadians site lists ‘Asperger Syndrome’ as one entry under the autism spectrum but does not mention it again (Government of Canada). The 2007 report by The Standing

Senate Committee on Social Affairs, Science and Technology, ‘Pay Now or Pay Later:

Autism Families in Crisis’ notes that Asperger Syndrome is one of the sub-categories of the autism spectrum, but does not reference it again in its report (Eglington). Introducing

‘Autism Awareness Month’ in October 2011 the Minister of Health, Leona Aglukkaq pronounced that ‘Autistic disorders are heart-breaking conditions’ and noted that autism is a spectrum of disorders, but did not mention asperger or any variation of this term in her brief speech (para. 1). This may appear to be the Federal Government successfully preparing itself for the loss of Asperger’s Disorder from the DSM, but in practice most of the documents discussed above pre-date any hint of this category change. In this sense, the image created by Federal discourses on ASD are of all locations on the spectrum as medical conditions in need of similar responses, but in practice the Federal discourse

71 focuses on autism and the sense of classic autism as significant disease and pays little attention to the inherent diversity found in autism. As Dana Lee Baker and Trudy

Steuernagel note in their paper ‘Comparative Canadian and United States Autism: a

Narrative Analysis,’ in Canada the autism story is one of ‘a treatable disease affecting a growing number of Canadian children’ and they note that the ‘Pay Now or Pay Later’ report acknowledged the idea of an epidemic (7). In the official sense, then, autism and asperger operate discursively as potentially ‘heart-breaking’ medical conditions and in looking at federal documentation, there is no clear distinction drawn between them. There is also no sense of autism as diversity and possible place of positive exceptionality.

Mindblindness and suffering

The DSM and the ICD offer diagnostic criteria for autism, and governments respond to ideas of health crisis and social need with politically framed policy documents, but there are other texts that have attempted to explore and explain the details of autism’s differences and impairments. Simon Baron-Cohen’s Mindblindness proposes the idea that the fundamental deficit in autism is a lack of theory of mind mechanism (ToMM). The basic principle of ToMM is that it is a human trait to speculate about what others are thinking. That is we have a sense or theory that others, like ourselves, have thoughts or positions on things. For Baron-Cohen, this is the idea that ‘we have the capacity to imagine or represent states of mind that we or others might hold’ (2). Testing for ToMM involves asking people to speculate as to what someone else might be thinking in a scenario where that other person is subject to a deception that we are not subject to.

Baron-Cohen offers a number of examples of theory of mind tests that the neurotypical passes and the autistic typically do not:

The test involves seeing that Sally puts a marble in one place, and then later, while Sally is away, Anne puts the marble somewhere else. The child needs to appreciate that, since Sally was absent when her marble was moved from its original location, she won’t know it was moved, and therefore must still believe it is in its original location.’ (70-71) The test then is that a child is asked to speculate where Sally will look for her marble. A working ToMM would allow the test subject to understand that Sally is going to think the marble has not moved and that she will look in the first place she put it.

ToMM allows for an understanding of a falsely held belief. In Baron-Cohen’s experiments, the autistic children typically assume Sally will first look in the place where the marble actually is (70-71). For Baron-Cohen, this indicates the autistic is ‘mindblind,’ that he or she cannot imagine another holding a false belief, and for Baron-Cohen this is the core deficit in autism that leads to the issues of communication and social isolation.

For Biklen this is metaphor operating as reality, in that the ToMM has not been biologically identified and yet from the idea of ToMM comes ideas of fundamental neurological deficit (37). The argument being that a theory of mind is a normal part of human intellectual inheritance. ToMM fails to take into account that challenges of communication and disinterest in expressing false belief states might relate more to autistic experience than to some apparently fundamental missing cognitive function. Nick

Pentzell, a writer and autism advocate who self identifies as autistic suggests that theory of mind tests fail to take into account the experiences of over-stimulation that many autistic adults report as part of their childhood. He offers: ‘at age four I was too lost in sensation to respond to, let alone pass or fail, such a test’ (Pentzell 105). There is also

73 little or no room within ToMM for any degrees of empathy or degrees of functioning of theory of mind. Either this mechanism is present, or it is not; either we are empathetic and therefore proper humans or we fail this test and are fundamentally impaired.

In The Essential Difference: The Truth about the Male and Female Brain Baron-

Cohen also argues that autism is a form of extreme male brain. Both Jordynn Jack, and

John Duffy and Rebecca Dorner argue in separate articles that Baron-Cohen’s rhetorical construction of autism as ‘mindblind’ and a form of extreme maleness misses how these ideas play against an unacknowledged and assumed sense of the normal, and in the process limit our understanding and prognosis for autistic people (see Jack “The Extreme

Male Brain?”; Duffy, Dorner “The Pathos of Mindblindness”). Duffy and Dorner make the point that ‘the absence of empirical data means that the degree to which ToMM is accepted by researchers and the general public ultimately comes back to the rhetorical power of a story that asks us to accede to its rational, emotional and moral view of the world’ (205). They go on to argue that the conception of autism that emerges in accounts of mindblindness is one of tragedy and a sense of suffering distance from normal human experience: ‘The effect of this, once again, is to posit a vast and unbridgeable gulf between the “normal” whom “we” can understand and with whom “we” easily connect and empathize, and the autistic, whom “we” must “stretch our imaginations” to fathom’

(209).

Baron-Cohen and his research team at the University of Cambridge were also responsible for the development of the Autism Spectrum Quotient test (Autism Research

Centre). This was a series of fifty questions that aided a diagnosis of autism for both adults and children. The test is available on various web sites and was also at one point

74 posted to Facebook. The test asks respondents to rate their agreement and disagreement to various statements that lead towards a social or asocial personality, and between a liking of spontaneity or routine. Wired magazine published the test in 2001 and Wallace suggests that this maybe the reason for rumours of a spike in Autism diagnosis within

Silicon Valley (“Are You On It?” 5). Clearly unsupervised tests of this sort are likely to create a sense of autistic presence in individuals that score highly, a score of over twenty- five being an indication of some autistic traits, but Baron-Cohen makes the point that unless an individual is ‘suffering,’ there is no need for a formal diagnosis (Murray,

Autism 20). In this, one presumes Baron-Cohen is creating an ‘out’ for accusations of over-diagnosis in that if one’s sense in answering these questions is not an experience of suffering, or if one enters the test with no sense of suffering, no real autistic diagnosis is achieved or required, even if one scores highly. For Murray this links autism inherently to suffering since it implies that to be formally diagnosed is to be put in a place of, or an indication of suffering: ‘The fact that for Baron-Cohen the presupposition of suffering is a structural part of the evaluative process of autism produces a working version of the condition that has an assumed negativity’ (21). In a sense this works well with the social model of disability that eliminates the idea of disablement where an individual’s impairments are not disabling in their social context. In the social model, if there are no symptoms of suffering in the autistic person, they are not disabled, and in consequence for Baron-Cohen, they have no need of the diagnosis.

The problems here are many. Firstly, there is no option for someone to embrace happily, without suffering, their autistic subjecthood, nor is there space for pleasure within states and experiences brought on by autism. Secondly, the potential supports that

75 an autistic person might need or want from those around them are in danger of disappearing within a disability as suffering model. If the individual finds contentment in their current position why do they need support? Thirdly, the very performative power of the test is not recognized in this secondary sense of suffering. If taking the test creates a sense of self-pathology or pathology of one’s children, then the test itself can be the cause of suffering and alienation; this is the negative realization of one’s otherness. Inevitably, setting out a threshold for autism also sets a threshold for normal and so places the individual in states of exception. If certain sets of behaviour come under the purview of normal, or are not noticed at all, then one does not necessarily suffer from them (though one might), but when a culture starts to talk about certain behaviours in pathologizing ways and uses tests like the AQ to set out otherness, those who start to see themselves under these descriptions start to potentially suffer forms of alienation. What Baron-Cohen fails to realize is that though suffering may be a part of some autistic experience, suffering can also be very external to the autistic individual and as tests set the limits and criteria for a condition, they perform them, and potential suffering, into being.

This dwelling on suffering also constructs autism and disability under the model of pity, so criticized by Prince in Absent Citizens when he argues that there should be a decline in the tragedy/charity model of disability (27). The broad impact of ToMM and the AQ on autistic individuals is open to some speculation; as Murray points out there are no references to suffering in the DSM and ICD definitions of autism, nor is there any mention of mindblindness (Autism 21). However, the common rhetoric of autistic people being asocial and shut away in their own world would certainly appear to be reinforced by the idea of the autist’s lack of empathy and knowledge of other’s thinking. There is

76 also the sense that I will explore in Chapter Five when we look at interventions with autism, that if we can dismiss autism and autistic people as an evolutionary backwater populated by people who clearly don’t have empathy for ‘us,’ then we can legitimize treatments that do not need to fundamentally respect their human rights or show empathy to ‘them.’

Autism, philosophy and Ian Hacking

Baron-Cohen’s work and its critique by disability studies and the advocacy movement is a further example of autism as a point of current cultural and academic focus. In looking for these academic and cultural debates on autism in a specifically

Canadian context one meets the work of the Canadian philosopher Ian Hacking. In a series of articles that cover approximately a ten year period, and in his book The Social

Construction of What?, Hacking has explored autism as cultural phenomenon, language game and as philosophical conundrum. He has commented on how categories of difference like autism get created; to what a label of difference actually refers; what autism might be; and how the language of autism is being made and remade via biography and fiction. In The Social Construction of What? he offers the idea that autism may be an example of a phenomenon that is both indifferent and interactive (108-109). In this thinking, autism is indifferent in the sense that its biological and neurological foundations (if it actually has one) have always existed and were, and are, completely indifferent to any particular label or scientific understanding that was placed upon them.

In his ‘Inaugural Lecture as Chair of Philosophy and History of Scientific Concepts at the

Collège de France,’ he offers the idea that sub-atomic particles are a prime example of

77 indifference (11). That is, if we believe the physicists, they have always existed even before we named them. ‘The classification ‘quark’ is indifferent in the sense that calling a quark a quark makes no difference to the quark’ (11). This looks much like the idea that I expressed above that there have always been people who we now understand through the label of autism, but they were not previously seen through this particular lens.

How, then, is autism also an example of an interactive classification? In its simplest sense, autism is interactive because the application of a diagnosis of autism affects a person’s life, the term interacts with the individual and those who know that individual in that diagnosis can potentially bring new understanding and a new sense of place for a person, and also place that person within specific cultural and social structures.

Diagnostic labels such as autism are also interactive in the sense that their understanding shifts over time as is seen with revisions of the DSM, and these descriptions and understandings shift between contexts that express them in different ways. In his

‘Inaugural Lecture’ Hacking makes the point that ‘names do not work alone, as mere sounds and signifiers. They work in an immense world of practices, institutions, authorities, connotations, stories, analogies, memories, fantasies,’ and he further notes:

‘this very construction interacts with troubled people and helps to produce their behaviour, which in turn confirms the diagnosis’ (9, 10). Although Hacking’s implication that anyone with a diagnostic label is in some way ‘troubled’ somewhat uncomfortably mirrors Baron-Cohen’s idea that autism is ‘suffering,’ his philosophic exploration of the emergence of autism as diagnosis and cultural event points to the interactive and contingent nature of diagnostic labels; of their ability to shift in changing contexts, and change individuals’ self-perception and perception of others. Hacking also acknowledges

78 that popular and non-expert discourses are also implicated in this interaction as well as the responses of labelled individuals themselves (Social Construction 115).

This interactive nature leads Hacking to describe a ‘looping effect’ between a classification and the people classified, and the idea of ‘moving targets’ within the study of people (“Kinds of People” 293): ‘they are moving targets because our investigations interact with the targets themselves’ (293). In this theory, if we ever find the biological entity that is autism, it will be indifferent to anything we have to say about it, but our interaction with what autism means and what it means to be autistic will always interact and shift in complex ways. Further, the forces that change this understanding work within cycles of description and diagnosis that interact with people, institutions and representations, and therefore work into further shifting descriptions and diagnosis.

In debating the interactive and changing history of autism Hacking also suggests that it is one example of ‘making up people,’ which refers to ‘the ways in which a new scientific classification may bring into being a new kind of person, conceived of and experienced as a way to be a person’ (285). Hacking focuses on what he calls ‘high- functioning autism’ by which he appears to mean a person whose infancy is classically autistic, but develops the language skills to at least in some sense ‘pass’ in a neurotypical world; he cites Temple Grandin as his prime example (302). He makes the point that only thirty years ago this form of description did not really exist and that if autism referred to anything, it referred to a significant disability focused fundamentally on children. He offers two competing explanations for this:

(A) There were no high-functioning autists in 1950; there were many in 2000.

(B) In 1950 this [the idea of high-functioning autism] was not a way to be a person, people did not experience themselves in this way, they did not interact with their friends, their families, their employers, their counsellors, in this way; but in 2000 this was a way to be a person, to experience oneself, to live in society. (303) Hacking buys into the second explanation, that high-functioning autism was not a way to perceive a person in the past and it is now, and once we develop a particular lens for seeing people, we start to notice them and people start to notice themselves in this new way (304).

Working from another academic perspective one could suggest that Hacking is identifying the performative nature of disability labelling, of the ability of a diagnosis to be at play in a society and be a new way of seeing difference in people. Hacking’s interest here appears to be a philosophical one; he makes a point about how categories are constructed in a society via language and description, and how some of these categories are more useful, enduring and productive than others. Implied in the work discussed above is the idea that some forms of social making or social construction have a greater and more permanent connection to some underlying and indifferent actuality (such as the idea of a biological basis for autism) than others. Hacking appears to be looking for a trace of the interactive into something indifferent and in the process he assigns more value to the indifferent (“Inaugural Lecture” 7). Is this thinking useful for the study of the representation of autism in contemporary Canada? What is the indifferent aspect of autism and can we get anywhere near it when documents like the DSM change the clinical understanding and description of autism and even remove a whole category of the spectrum in the deletion of Asperger’s from DSM-5?

One problem with Hacking’s thinking here is where do we start with knowledge? If we start with a social, cultural and historically framed idea like autism that emerges as a way of describing people in a particular place and time, what are the chances of this neatly matching something specifically biologically indifferent? It would appear that if we ever wish to identify the true indifferent origins of something, then the indifferent has to be our starting place; otherwise we are searching for an indifference that is derived from a shifting, interactive version of something that is made within a social, and not an indifferent context. Ultimately, I take a more performative approach and would argue that the indifferent is of little interest, that it is the very nature of a description of difference and identity, bound up in a label that clinically implies deficit, to be interactive with people, representations and institutions. Further, if we do find some biological kernel that can also be labelled autism, it too will interact with the whole process of diagnosis and classification, and the whole debate among difference, disability and sickness. Will this biological kernel be counted as diversity or abnormality, for example? The very biological entity may in some theoretical sense be indifferent to this debate, but if this kernel is found, no one interested in autism will be indifferent to it.

Is confidence in the existence of an indifferent underpinning necessary for autism to have credibility? Is social noticing and a set of diagnostic criteria not enough to make a subject worthy of inquiry? The key point from a disability studies perspective is that however socially constructed any particular aspect of the autism spectrum is, the experience of being labelled or not being labelled has a very concrete sense of reality about it.

There is, I think, a great deal missing from Hacking’s first pitch at autism. He perceives high-functioning autism as a form of recovery from classic autism rather than seeing the variety of abilities and challenges that come from the idea of a spectrum of differences. He also does not see the different paths that any one autistic person might take from infancy to adulthood and how these experiences might affect their ability to function within neurotypical contexts; in this sense, personal development of the sort we assume to be present in non-autistic people is uncomfortably missing from his understanding of an autism life journey. In his own explanation of what autism is (in its classic sense), he creates a rather limited picture of isolated and obsessive behaviour accompanied by ‘terrible tantrums’ that only captures some people’s experience with autism (“Kinds of People” 301).

In his more recent articles, he does more clearly develop and extend his own understanding of what autism is, and moves on from a specific focus on using autism to make arguments about indifferent and interactive classifications. In ‘Autistic

Autobiography’ he explores the idea that autobiographical accounts of autism are a fundamental part of the making of the language of autism, and he also proposes rethinking Baron-Cohen’s ToMM as a more fundamental difference of mind, rather than a specific deficit within an otherwise ‘normal’ or ‘typical’ mind (1471). In the abstract to this paper he suggests that ‘autism narratives are not just stories or histories, describing a given reality. They are creating the language in which to describe the experience of autism, and hence helping to forge the concepts in which to think autism’ (1467). He goes on to ask ‘Are the autobiographies and other stories less telling what it is like to be autistic than constituting it, both for those who inhabit the autism spectrum, and for those

82 who do not?’ (1467). From a deconstructionist view, of course, the idea that there is any difference between texts that describe a given reality and texts that constitute that reality makes little sense. In a poststructural sense all language is performative and constitutive of the object of its focus, but what Hacking is pointing towards is moments when certain writings and certain forms of writing create dramatic new shifts in understanding. In this case, the very idea that someone with autism can write an autobiography, for Hacking, implies a level of self consciousness and self awareness that was not traditionally thought to be part of autism (1469). Hacking quotes Oliver Sacks’ forward to Temple Grandin’s book Emergence: ‘Unprecedented because there had never before been an “inside narrative” of autism; unthinkable because it had been medical dogma for forty years or more that there was no “inside,” no inner life, in the autistic’ (1469).

There is, however, a problem in this challenge to the idea that autistic people do not have a complex inner life, in that the autobiographies that Hacking references all come from individuals who are referred to as ‘high-functioning,’ and are even at times talked of as having Asperger’s Disorder or Syndrome rather than autism (1468). Hacking raises the question, ‘do the autobiographies provide prototypes for describing and thinking of all autistic people?’ (1467). In debating this potential divide between high-functioning and classic or low-functioning autism, a whole set of terminology that becomes increasingly uncomfortable, Hacking offers the idea that autistic autobiography demonstrates, against prevailing medical expectations, that those who write them have a ‘thick inner life’

(1468). Via autobiographical output we gain access to complex and engaging human subjects. This he contrasts to Charlotte Moore’s descriptions of her two sons in her book

George and Sam, who do not author their own text, and are described by Hacking as

‘severely autistic’ (which is a description that could be challenged as both children are in some form verbal and both are toilet trained). Hacking goes on to make the contrast that

‘in my loaded terminology, these words imply that George and Sam were thin boys, destined to grow up into thin men’ (1469). I will return later to the potential cultural determinism that might be present in the contrast between thick and thin autistic lives and how this might be yet another way to set the line between high-functioning and classic autism; however, in trying to find the connection between these potentially thick and thin lives, Hacking uses the making of autism that comes out of autobiographies to challenge aspects of ToMM and in the process make his own link between the ‘thick and the thin.’

Hacking considers ToMM to be the idea that we know what another is thinking by reference to our own minds, that we ‘postulate a mind similar to ours as the best possible explanation of the actions of another person’ (1470). This is the idea that we infer what someone else is thinking from their behaviour. For Hacking this is ‘nonsense’ (1470). He denies we need to infer, that in contrast to the complex idea of inference that is at the heart of ToMM, in practice we often know well what others are thinking directly via their behaviour. His criticism is that ‘Theory of Mind approaches to autism, driven by false belief tests, focus on complex situations that are parasitic on the bedrock cases of simply knowing what someone else is doing’ (1470). Referencing the Gestalt psychologist

Kohler, he implies that there is much about the behaviour of others that we simply know and understand without any complex reference to debates over the presence of minds of others (1471). Hacking’s point then becomes one of asserting that a whole range of phenomena that make perfect sense to the neurotypical, that come through direct knowing not inference, ‘are not familiar, ‘automatic,’ ‘immediate,’ or ‘instinctive’ for most autistic

84 people’ (1471). Though he does not put it in quite these terms, what Hacking appears to be implying is that the autistic mind is not lacking a certain mechanism, but is actually more radically other; it is not a mind that is missing some specific function, but is operating in a generally different way or different realm: ‘Since Kohler’s phenomena do not take place, when most people are in the company of a severely autistic person, we have to compensate for their absence. This is what autism narrative helps to do’ (1471).14

For Hacking, autobiography and autism narrative in general give the non-autistic access to the inner-life and to the alternative functioning of autistic consciousness. Citing the example of hand flapping, Hacking tells us that the autobiographies indicate how calming this can feel to an autistic person (1472). This argument has remarkable similarities to those made by Amanda Baggs in her YouTube video, ‘In My Own Language’ where she films her hand flapping and repetitive behaviour and via typed comments explains this is an expression of her own language and self.

Here, then, is a difference model of autism emerging from a philosophical challenge to ToMM and a positive argument for seeing autistic autobiography as constitutive of both a new language of autism and a bridging between autistic and neurotypical consciousness and understanding. Through autobiography, we gain access to autistic subjecthood and how autistic people see the rest of us, and in this sense we have a view of an autistic theory of mind and an autistic view of the minds of the non-autistic.

What emerges from these ideas is that the high-functioning autobiographies also provide a way to describe the experiences of the George and Sam’s of this world. If this radically

14 Nick Pentzell and others would probably challenge Hacking’s conception of radical otherness here and make the argument that the filtering and over-stimulation challenges of autism are the fundamental impediments to communication, not some more dramatic difference of neurology (see Pentzell 105).

85 othered cognition is the common factor in autism, the difference between high and low- functioning becomes one of ability to make the connections to the neurotypical rather than a scale of fundamental deficit from neurotypical. In this sense, the autobiographies also allow us a deeper understanding of the classic end of the autism spectrum, and acknowledge that ‘we might come to judge that less gifted autistic children and adults, who communicate very little, also understand, in a quite specific way, far more than is evident to the outsider’ (1473) To use Hacking’s term, these may be thicker lives than we originally thought. Hacking taps into the argument that the limitations in an autistic person’s conventional spoken communication skills and potentially unusual gestures have led to autistic people being thought of as less intelligent and less capable than they really are. Academic and biographer Ralph Savarese makes this very point in relation to his adopted son whose ability to express himself and relate to the world emerged once he had found a communication method that worked for him, in his case, the use of facilitated typing (See Reasonable People xi-xxxi). Pentzell makes the same case when he suggests that ‘before I began communicating with language, my mode of thinking was drastically different’ and that ‘the structure of my language has structured how I think’ (104, 105).

Hacking’s more recent work, published in 2009 and 2010, sticks with the phenomenon of the making of the language of autism via both biography and fiction, and he repeats his argument that ‘the autobiographies, novels and blogs are entrenching a language in a domain where there was no language at all fifty years ago, and not much twenty-five years ago’ (“How We Have Been Learning” 506). His positive reflection, that

I share, is that these new discourses of autism can be part of making autism ‘part of the

86 larger tapestry of human life’ (514).15 His caution is that much of the writing on autism has an over-focus on savant gifts and a search for the ‘high-functioning.’ He makes the point: ‘And if all the techs in the world go around thinking they are mildly autistic, the richness, the depth, and the difficulty of the phenomenon of autism will be grossly misunderstood’ (514). Inevitably among the range of texts that Hacking explores and among the range of texts that I will look at in this dissertation, there are those that broaden understanding, add to the language tools of autism, and those that limit, reduce and narrow our understanding, or send it in a particular direction that misses much of what autism is.

What then are we to make of Hacking’s interest in autism, and what are we to make of this, the only major Canadian thinker to have spent time discussing what he himself implies is the pathology of the current decade (“Autism Fiction” 632-633)? Though via his critique of ToMM Hacking appears to make a strong case for autism to be seen under a difference model, he also regularly conceives autism as negative disability, particularly in his comments about ‘troubled people’ in relation to the interaction between a diagnostic category and those diagnosed.

Hacking is also rather attached to a binary idea of autism as other. In his connecting of different places on the spectrum by the idea that all autistic people have a radically othered form of thinking, he makes autism a thing apart and allows no room for aspects of autism to be a modern process of noticing forms of general human variance. It may be that one day we find that autism has an indifferent biological entity behind it, but it is also possible that it does not, and is, rather, a complex category of seeing certain aspects of

15 The philosopher Anna Stubblefield makes a similar point when she argues that autistic autobiography is often a specific attempt to educate the non-autistic, but it is also ‘expresses a basic human desire to be known’ (Stubblefield 153).

87 human behaviour as other. If it is the latter, then we need to challenge the ideas that autism and autistic people simply have othered neurology and so challenge Hacking’s idea of radically othered thinking. In this sense, though his ToMM challenge removes the stigma of autism as normal minus key mechanism and evolutionary backwater, it still leaves autism vulnerable to a clear deficit model of different and deficient neurology. For all that this radically othered thinking may suit some in the advocacy movement, it also suits those who pursue genetic testing and eugenics arguments.

Fundamentally if Hacking wants to have autism as interactive idea but with an indifferent, clear, biological basis to it, he will need it to be separated from normal or typical by binary opposition. If parts of autism are to be seen as aspects of human variance, then its kernel of biological truth does not stand neatly apart. In a sense,

Hacking misses, and maybe deliberately so, the whole disability studies argument about the problematic place of ‘normal’ and the constructionist challenge to the idea that there is a simple agreeable idea of normal from which to establish autism as other.

I would also argue that he has missed a key point in his exploration of the language of autism, of who is generating this new language. As I have already suggested, the biographer and the autobiographer have a certain power to name. They can describe the experiences of autism and challenge its conventional wisdom, but the medical documents, texts like the DSM, have significantly more power and authority to define what autism

‘actually’ is. This point returns us to Austin’s concept of felicity, to the idea that the power to create diagnostic objects is not equally distributed. We can all set out to define new medical conditions, but unless we hold the appropriate positions and qualifications, then these new conditions gain no medical credibility. A certain credibility may come

88 from those who work with autistic individuals and from autists themselves, but does this out-weigh the defining power of the official medical texts? In returning to autism’s history, Bettelheim, then, was exploiting his power to name, to impose discursively, and ultimately abusively, his definition of autism as parenting problem and psychoanalytic solution, because he was in the felicitous position to define the condition and responses to it.

This takes us back to Savarese’s biography of his son and his referencing of Kuhn’s idea that scientific revolutions are difficult because of entrenched power structures within professional communities that have an interest in defending the status quo (Kuhn 77 qtd.

Savarese xii). For this reason, it is important in any exploration of a disability label to look at the power and forces that get to name, and understand who possesses the power to segment and define what is and is not a disability condition. I would suggest that Hacking pays too little attention to this. Ultimately Hacking questions current clinical understandings of autism and suggests a new language of autism is emerging in fiction and biography, but does not, in the first instance, question autism’s conception as a medically understood disability.

Conclusion

Hacking’s work makes clear that he is part of the phenomena of autism as pathology of the decade or pathology of the internet generation that he himself acknowledges in his most recent papers (see “Autism Fiction” 633). Stuart Murray recognizes this same cultural event when he refers in both his books to the idea of autistic presence, to the idea that autism has arrived at a certain status or come to a certain

89 popular consciousness in Western cultures in general and most specifically in the English speaking world (See Representing Autism 27-64; Autism 39-74). This idea of presence, of the noticing of autism, is also reflected in the depth and range of material that includes autistic characters, representation and description that lies at the heart of this study.

This chapter, then, has traced a history of autism and how it has been constructed and reconstructed in its diagnostic and medical sense, and how this making of autism is exposed to critical reflection via the tools of disability studies. This chapter has also looked at particular concepts of autism such as mindblindness and the cultural and philosophical critique of these potentially limiting concepts. Moving this project forward, in the next chapter I will explore disability studies approaches to disability representation, but also establish why this project makes the interdisciplinary move of combining techniques of textual analysis with a qualitative audience study. Working within the context of valuing all potential critical approaches, I will set out the history of disability studies critiques of representation, and establish the rationale for developing and combining different approaches to the analysis of autism’s presence in film and television.

In acknowledging potential challenges and criticism of textual approaches and detailing the specific experiences of the focus group, Chapter Two points towards this project’s interdisciplinary intent and where it will make its methodological contribution. Chapter

Two, then will complete the preparatory work for the detailed analysis that will be presented in Chapters Three to Five.

Chapter Two - The Unruly Issue of Representations, Audiences and Methods

…the broad sense in engaging oneself with the unruly and heterogeneous practices and accounts of real historical viewers or readers – helps to keep our critical discourses from becoming closed texts of Truth, because it forces the researcher to come to terms with perspectives that may not be easily integrated in a smooth, finished coherent Theory. (Ien Ang, “Living Room Wars” The Audience Studies Reader 227)

What is missing so far from this study of the intersections of theory, academia and autism is the specifically cultural, of how academia has engaged with film, broadcast and broader media representations of disability. In this chapter I am going to look specifically at how disability studies approaches and critiques cinematic representations of disability, but here I also raise some concerns about how scholars engage with disability representations as a lead into discussing the rationale for engaging with the ‘unruly and heterogeneous practices and accounts of real historical viewers.’ This chapter, then, explores the history of critical engagement with representations of disability and then sets out the argument for, and practical experiences of, making the interdisciplinary move of putting together a focus group to look at representations of autism in order to mitigate against what I argue is a potentially narrowing analytic approach.

Disability film theory

Martin Norden’s 1994 book The Cinema of Isolation: A History of Physical

Disability in the Movies is something of a first text in the critique of disability in film. It explores a history of disability as archetypes and tropes of otherness and negativity in cinema. Norden makes the point that ‘movies demonstrate aspects of the society that produced them, but just as importantly society mirrors the values of its movies’ (x). I would additionally argue that movies are also part of the constructing of the popular understanding of specific disability experiences. In following a history of cinema from its silent era to his time of writing in the 1990s, Norden traces how cinema has used disabled characters to symbolic effect; he notes, ‘a physical defect symbolizes an aspect of character’ (5). He offers examples of characters whose disfigurement is representative of their status as ‘baddy,’ demonstrating the idea that disability is both a marker of villainy and a cause to drive someone to bad actions; the most famous example of this phenomenon being Shakespeare’s Richard III (51, 106). He contrasts this villainous stereotype with the image of the miracle worker and miracle cure that can envelop a more benign disabled character and in this offers an example of the problem of the disabled as backdrop for the adventures of the able bodied that I will explore in more detail below

(107).

David Mitchell and Sharon Snyder’s more recent work Narrative Prosthesis:

Disability and the Dependencies of Discourse offers a more theoretical intervention that explores how disability as a trait in a broad range of texts from literature to film acts as a narrative device. Disability becomes a prosthesis when it props up and acts as a contrast to the normalcy of other characters, or is seen as symbolic of some broader sense of

92 aberrance; again this is the 'baddy' with the facial tick or bitter character in the wheelchair as noted by Norden (Mitchell and Snyder 47). Disability can also be prosthetic in another form, as the sentimental ground upon which the story of the non-disabled characters is played out. The disabled in this sense act as the life challenge to the able-bodied to find their better selves. Critically, narrative prosthesis conveys the idea that disability representation does not typically involve the creation of fully rounded characters, but is used more as a plot device as disability becomes a well understood symbol of negativity and otherness.16

Garland-Thomson’s essay ‘The Politics of Staring: Visual Rhetorics of Disability in

Popular Photography,’ though focused on still images, also proves to be a useful tool for interrogating the visions of disability that emerge in the cinema. She offers four representational rhetorics for the interrogation of photographs of physical disability: the wondrous, the sentimental, the exotic, and the realistic. For Garland-Thomson, these rhetorics sit on a time line with the realistic being the most contemporary and for her the more desirable (“The Politics of Staring” 57-75). The realistic captures the everyday of a disabled person while neither denying nor highlighting the disability or difference. This is the photographic sense of ‘just is’ surrounding and forming the disabled subject, and not the manipulation of disability images towards ideas of otherness and tragedy.

To explore an example of the cinematic construction of autism and the critical application of the idea of prosthesis and Garland-Thomson’s visual rhetorics, I want to offer a critical review of the most famous cinematic representation of autism, Barry

Levinson’s 1988 film Rain Man. Stuart Murray suggests that ‘Rain Man is the

16 See also Ato Quayson’s concept of the ‘short circuit’ in disability representation discussed on page 200-01.

93 foundational text for all the various contemporary representations of autism, the breakthrough story that gave the condition a public profile’ (Representing Autism 84). In this sense, Levinson’s film has become a meta-representation of autism, and of the critical engagement with autism representations.17

Rain Man portrays the autistic subject as a definable disabled ‘other,’ distant and awkward, but also a figure imagined to possess the compensation of some remarkable

‘gift’ or savant skill. As the autistic Raymond (Dustin Hoffman) and his brother Charlie

(Tom Cruise) reach Las Vegas and we get the famous moment of card counting in the casino, autism is captured as both wondrous, exotic and othered. This is the moment in the film when Raymond moves beyond a simple burden to his younger brother and demonstrates the usefulness of his special gift, but arguably does so in a way that pushes him further away from ‘normal.’ As we watch Raymond demonstrate his gift of counting cards and winning at black jack, his otherness is confirmed, but he is also gifted with redemption for his autism. This typifying of autism as a combination of capacities and incapacities casts autism in a very particular othered light, and in this Rain Man has been responsible for encapsulating autism within a frame of disability and super-ability that has lasted over twenty years. Alongside apparent social awkwardness, the savant skill signifies a fundamental gap or barrier from the neurotypical world while providing that world with a reason to value the autistic person. It also puts the autistic savant in the place of the freak, as the extraordinary individual exposed to public amazement, and a place of vulnerability via his talent that leads initially to the best room in the hotel (success in

17 Mark Haddon’s 2003 novel The Curious Incident of the Dog in the Night-Time can also be seen as a critical meta-representation of autism that initiated the idea of a first-person voice for an autistic character in fiction. Haddon’s work is also something of a re-finding of popular interest in fictional autistic characters fifteen years after Rain Man was released.

94 normative terms) and finally to being asked to leave the hotel (the place of outside for those who cannot play by, or do not know the rules).18

One could argue that Raymond’s savantism is a narrative prosthesis, that aspect that makes the autistic person whole or useful for the narrative. It is Raymond’s extraordinary calculating and memory skills and their contrast to his disabilities that defines the plot of the film. This idea of savantism takes centre stage in other representations of autism. In the 1998 Bruce Willis action film Mercury Rising, the seven-year-old Simon is portrayed as the sentimental helpless autistic child whose life is threatened when he demonstrates remarkable code breaking skills that make him a target for the security forces. The autistic child is seen to be controlled by a combination of a secret code and his savant need to break it. He remains helpless and sentimentalized even at his most skilful moments in the film. Mercury Rising, then, illustrates how pervasive stereotypes of autism can be passed from one narrative to another and in the process ideas of autism as savantism combined with incapacity become reinforced.

Prosthesis can also be seen as a narrative strategy in other ways in Rain Man.

Charlie, despite being the representative neurotypical, is a marginalized individual, obsessed with money and his work, but in learning to adapt to his autistic brother, Charlie loses his 80s yuppie excess. In this critique the disabled Raymond becomes the relatively passive, unchanging facilitator for the emotional development of the neurotypical. In creating this journey of knowledge and healing for the non-autistic character, Charlie’s flexibility and ability to change is apparently contrasted to the relative fixedness of

Raymond. The critical implication is that Raymond is trapped or imprisoned in this

18 For a detailed discussion of the history of freak shows and how the image of the freak has connected to disability representation, see Garland-Thomson, Extraordinary Bodies 17.

‘world of his own’ that is autistic subjecthood and cannot survive outside of the institution that he ultimately returns to at the end of the film. Mitchell and Snyder note this fixity in Raymond when they suggest that ‘the film’s story argues that Raymond cannot return to the community because his disability prevents him from successful integration’ (“How Do We Get” 17).

An even greater sense of circularity of plot exists in Mercury Rising as Bruce

Willis’s renegade FBI officer comes to a more peaceful place at the end of the film when he witnesses the autistic Simon apparently unchanged and back in his ‘special-ed’ classroom, apparently oblivious to the murder of his parents. Robert McRuer in Crip

Theory suggests that disabled representations are also often flexible, but it is not the active adaptability of the non-disabled; the disabled character is flexible as a responsive surface upon which the central character can enact their own development (16). The disabled do not enact their own fate, but remain the reference point for the progress of normality.

In his performance in the casino and in his earlier demonstrations of remarkable counting ability in both the diner and the doctor’s office Raymond confirms his otherness and allows us to see this disability representation through Garland-Thomson’s rhetorics of the wondrous and exotic. For Garland-Thomson the wondrous casts the disabled as mythic, as in possession of, or possessed by, special skills, or wondrous in the sense of overcoming obstacles (see “Politics of Staring” 60). The exotic marks the disabled as othered, as distant from the norm of conventional ability. In this, then, Raymond’s ‘gift’ is the wondrous ability that casts him as distant and exotic in relation to the changeable,

96 relative normality represented by his brother and the other characters, and critically marks his character as outside Garland-Thomson’s sense of the realistic.

In exploring Garland-Thomson’s ideas, McRuer raises some questions about the privileging of the realistic in her work, suggesting that a more embodied and celebratory approach to the representation of disability might be to embrace the exotic and wondrous

(Crip Theory 181-185). McRuer, in noting Bob Flanagan’s radical embracing of cystic fibrosis via masochistic practices makes the point that the attempt to capture disability as everyday realism is also to normalize and potentially hide it; as such a more radical, embracing perspective is also lost (184). This debate between the celebration of disability as other and a wish for disability to be seen as normalized begins to illustrate why a variety of voices might be beneficial in the study of disability representation.

Rain Man and Mercury Rising also make use of medical professionals to legitimate their use of autism as plot and character device. Both films contain scenes in which a doctor or nurse outlines for the benefit of a non-autistic character (and for us the audience), what autism is. These scenes, that in effect pause the plot to describe autism, simultaneously reify and define the characteristics of a cinematic diagnosis of autism, and act to legitimize the film’s realistic integrity and affirm that the filmmakers have done their research. In these two films and in many other cinematic representations of autism we see an example of Hacking’s biography and fiction arguments about the making of the language of autism, but in its most deliberate form. Here is autism being defined, as it were, from the authoritative medical perspective through the lens of a fictional representation.

Anthony D. Baker offers the idea that ‘when the public has no direct experience with a disability, narrative representations of that disability provide powerful, memorable definitions. In films, novels, plays, biographies, and autobiographies that depict a character with a disability, the character comes to exemplify people with that particular disability,’ and he goes on to propose that ‘Rain Man (1988) serves as the public’s primary definitional text for autistic spectrum disorders’ (229). In the use of medical characters, complete with white lab coats, we get this defining experience in its most overt, reified form. I would also go further and suggest that even for those who are in direct contact with autism as self-experience or third-party experience, media representation such as the films discussed above still form part of their understanding of the disability. Even for those most intimately connected to a particular disability these fictional representations still form part of the frame through which that disability is seen.

Developing disability film theory

There is also a danger however in reading disability representations exclusively through theories like narrative prosthesis, of assuming that these theories can create definitive readings of disability representations. This is the danger of potentially missing the diversity of voices and interpretations that can be brought to bear on any given representation with an over-focus on particular critical approaches. This is not to say that an academic critique of the representation of disability in cinema is not a worthy and essential project, but I do want to raise some questions about how we go about this task.

This is to raise the issue that there may be other distracting gifts we need to be aware of, distractions that are present in some of our disability studies theories and how we take

98 particular critical approaches to film. This in part is the problem raised by Tom

Shakespeare when he suggests the possibility that ‘a new disability correctness is undermining the possibility of filmmakers dealing with impairment at all’ (“Art and

Lies?” 165). While critical writing on the representation of autism in film has become a part of the disability studies landscape, I want to raise the possibility that via the interdisciplinary introduction of new combinations of critical approaches, a more complex and nuanced picture of what disability representation is doing can emerge.

To explore this problem I want to look at one more international example, the

Australian film Black Balloon.19 I would suggest that this film is also vulnerable to a type of prosthetic criticism. Thomas, the sixteen-year-old, younger brother to the autistic

Charlie, comes to terms with his brother’s autism, through a coming of age narrative in which Thomas finds an un-judging girlfriend. The new girlfriend challenges Thomas’s reluctance to publicly acknowledge his autistic brother, and critically in this sense, we can see the autistic Charlie as prosthetic to Thomas’s coming of age story. In this way, the autistic Charlie is still an example of the flexible but relatively non-responsive surface upon which a teenage love story plays out. The film is also vulnerable to a form of sentimentality in its conclusion. After we see Thomas join his brother banging a stick in the back yard, after Thomas has symbolically come to terms with his autistic brother,

Thomas makes his normative maturing steps. He earns his bronze lifesavers medal and has his first driving lesson. There is also something in the self-sufficient zeal of the family and the father’s comment: ‘you’re as weak as piss if you don’t look after your own’ that

19 Black Balloon and all the films discussed here have had either cinema or DVD releases in Canada. All these films were available at my local DVD rental shop until it closed in the Winter of 2011. At present only Mercury Rising is available from the Canadian version of NetFlix (searched November 2012).

99 essentializes a particular form of strength and overcoming in those that surround disability.

Here then, we appear to have yet another example of autism, of intellectual disability, being used as a site of healing and demonstration of the adaptability of the non- disabled. As with Rain Man and Mercury Rising, the plot uses an autistic character as narrative device to allow for the development of the non-disabled. Yet to look beyond the issues of prosthesis and sentimentality, The Black Balloon makes a clear effort to avoid wondrous and exotic representations of disability and the reality of a twenty-one year old, non-verbal, not entirely toilet trained autistic man is captured in at times humorous, but un-softened, detail. In The Black Balloon, Charlie is also not compensated with a savant contrast to his disabilities.

This film has been praised from within the disability studies community for the honesty of its representation and it has been specifically complimented for not using the disabled character as a site of development for the neurotypical, of not indulging in this form of prosthesis. Katie Ellis in DSQ praises Black Balloon as a representation of autism that is: “neither exploiting it for the purposes of the main character’s development nor turning it into a spectacle of compensatory super ability” (1). And yet the non-disabled

Thomas clearly goes on a healing journey in his coming to terms with an autistic brother, and is rewarded for his normative progress. So one of the questions we need to come to is: what might be happening with this ability or desire to spot this form of prosthesis in some films and not others? To read some representations as positive and not others?

To explore these apparent contradictions, I want to take another approach to Rain

Man. I would never want to argue that Rain Man is not in places a problematic film that

100 uncomfortably reifies the connection between autism and some form of savant gift.

However, if we approach films that contain disabled characters with the expectation of finding prosthesis, particularly of looking for the disabled as unchanging backdrops for the emotional development of the ‘normal,’ then I think we are in danger of missing the positive critical potential in numerous disability representations. Another reading of Rain

Man that challenges the disability studies argument made above gives us a film that offers a criticism of Raymond’s institutionalization and through his journey with his brother does give our disabled character opportunities to develop. At a case conference that takes place towards the end of the film, both Raymond and the audience are made to feel deeply uncomfortable as the medical professionals express their disapproval of

Raymond’s experiences with his brother. In this scene we witness the limited vision and narrowed expectations of the institutionalizing ‘experts’ in relation to Raymond’s life as his adventures with his brother meet with disapproval. In this scene, I would suggest, our discomfort at the treatment of Raymond and Charlie turns to productive anger at the institutional forces that deny the benefits of Raymond’s journey with his brother and his slowly emerging interest in the opposite sex, dancing, and a world beyond ritualized TV watching and K-Mart underwear. By the end of the film, Raymond has lost some of his institutionalized rituals and gained a greater interest and comfort in the world beyond the walls. Despite the somewhat sentimental sense of closure created by his return to

‘Wallbrook’ in the final scene of the film, Raymond has changed. Yet by focusing on the negative idea of prosthesis and of the healing of his brother we are in danger of losing this more positive reading, or critical aspect of the film.

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The question is, does the academic critic approach certain genres and types of films with certain expectations? Does an independent Australian film such as The Black

Balloon escape certain preconceptions that are typically levelled at mainstream

Hollywood cinema? Are we as disability scholars buying into a certain form of cinematic elitism that I would suggest does not fit well with disability studies? And I would further ask, are there times when prosthesis can be a positive aspect of illustrating both disability, and positive and negative responses to it? Maybe I want to argue that prosthesis is not always the negative backdrop to the normative journey of the non-disabled as seen in the genuinely uncomfortable Mercury Rising. After all, at some level, the process of healing or changing the attitude of the non-disabled character is precisely what disability studies calls for from the wider public. We are looking for the non-labelled world to come to a new and more appropriate understanding of difference in the broad social context, and yet when a character does this it is often criticized.

I would suggest, then, that while these critical disability interventions and theories are powerful tools for working with film, we need to be careful not to over-determine certain academic methodologies, not to search for our own critical expectations, and in the process fail to see the ideological aspect of our own academic work. As David

Bordwell notes the skills developed and deployed by the film critic come from their own institutional context:

though acquired by each individual, these skills and knowledge structures are institutionally defined and transmitted. And though it is possible to abstract a critical ‘theory’ or ‘method’ from individual ‘readings,’ and thus to reify that theory or method as a self-sufficient procedure of discovery or validation, employing such an apparatus will not carry any critic all the way through an interpretation. (202)

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Bordwell points to wider problems of where and how we place and find meaning in the cinematic text, and how we speculate over its performative effects on the audience, and critically in this context, the audience’s subsequent effects on people labelled as disabled. To draw on Stuart Hall’s essay ‘Encoding, Decoding’ for a moment, if the basic plot and narrative of a film is its denotational, deliberate meaning, then it also contains a connotational meaning, that is a second order of signification that contains the ideology of the film which is not deliberately foregrounded as an aspect of the film’s plot: an ideology, for example, that disabled people cannot change and are asexual (483). The theory of narrative prosthesis directs the disability studies scholar to look towards this ideological form of connotation, to the ableist ideology, the hidden politics of assumption of what a disabled person can and cannot do, and in this, it is a powerful tool. However, I want to suggest that an audience is not always that passive, that the divide between the denotational and the connotational, between the obvious plot and the performative ideology in a film, but may vary within audiences and specific viewing experiences.

In theories of film spectatorship there emerges the distinction between the theoretical viewer or audience position, and actual historical audiences of film. Miriam

Hansen asks the question: ‘when, how, and to what effect does the cinema conceive of the spectator as a textual term, as the hypothetical point of address of the filmic discourse?

And once such strategies have been codified, what happens to the viewer as a member of a plural, social audience?’ (2). The challenge as noted by Judith Mayne is taking into account the diversity of audience experiences in the critical academic process, and the danger in codifying the audience as subject is that the diversity of audience experience is potentially lost (157-172). And of all academic subjects, critical disability studies should

103 be the most uncomfortable with the idea of a singular academically constructed version of the viewer/reader/decoder.

If the academic, does hold on too cleanly to a singular theoretical viewer and assumes an understanding of that viewer’s subject position or universalizes it, a form of critical decoding, or searching for ‘problems’ like narrative prosthesis can be privileged within the critical disability studies frame, and as Shakespeare notes a certain expectation emerges that all disability representations will perform an idealized vision of disability as seen from the epistemological standpoint of the disability studies scholar: an expectation that all cinematic texts will inevitably fail to meet. In The Problem Body, Chivers and

Markotic ask the question: ‘what happens when a disabled body metaphorically becomes the site of projected identity?’ (2). I would say that we also additionally need to ask who is doing the projecting and what identity is the disability studies community projecting onto both the film’s characters and the audience that may limit the readings of the film?

While joining in the call against negative stereotyping, I want to suggest there is some representational space between the simply negative and the actively and deliberately positive, and that many representations of disability can be of characters that could be good, bad, happy, sad, productive, unproductive, subject to change or not, gay or straight, neo-liberal, hegemonic, progressive or conservative. Additionally we need to be open to the idea that audiences are capable of reading against the hegemonic and that all cinematic texts have a degree of iterability.

In the critique of disability representations, there is a certain vulnerability to using films and other representations as tools for confirming existing ideas about how representations work and what they are doing at both an overt and covert level, and in

104 consequence using films to confirm negative social attitudes to disability. I would suggest therefore that within a diversity focused discourse such as disability studies, with its focus on literary critical and theoretical approaches, a certain voice is potentially missing, that is the voice of real, historical audiences.

Much has been written in the humanities on what Ien Ang referred to as the

‘dangers and pitfalls of empiricism, ’ that is, of the too precise quantifying and measuring of quantitative data, but there is also a need to acknowledge how academic practices of applying theory can lead to habits of assumption about how texts should be, and are, understood (227). Seminal theory texts such as Hall’s ‘Encoding, Decoding’ offer the idea that we can agree and disagree with messages in media texts, but he allows little space for different initial interpretations prior to opinion forming (477-487). Christian

Metz constructed both a semiotic taxonomy of film and a theory of psychoanalytic transference of cinema, but these theories emerge from a rather singular idea of identity construction and the implication that we are all the passive subjects of filmic ideology

(see Cook and Bernink 324-328).

As I noted in the introduction, Dolmage suggests that ‘disability studies should teach us that no meaning-making is ever that able,’ that we should be careful of the academic drawing a too singular path from authorial intent to a critic’s concise and accurate interpretation (8). Dolmage argues that an author can neither get a disability representation ‘straight,’ nor can the critic ever capture a totality of its reception or social impact (8, 9). Janice Radway also makes this point in relation to cultural study in general when she argues that the humanities academic assumes their ‘specialist training’ always gets to a more concise interpretation of a text, that includes identifying its true ideological

105 intent (5). For Radway the convention of academic textual analysis assumes a passive audience that is subject to ideological meaning and is not involved in diverse meaning making (6). In the context of disability representation this is the danger of a critical assumption about negative stereotypical ideologies of disability being imposed on a passive audience, with the academic being the only agent able to identify this stereotyping at work.

The unruly issue of audience research

The first step in mitigating against the tendency to privilege the idea of a singular theoretical audience is, of course, to recognize this potential problem in my own work.

This is to have an awareness of my own role and history of experience in the critical process, but this inquiry into representations of autism also makes moves towards the ethnographic and qualitative in the use of a viewing group to reflect upon my critical positions and arguments. The inspiration for this cross-disciplinary move comes from the debate that emerged between Radway and Ang over Radway’s ethnographic study of the reading of romance fiction.20 Although Ang fundamentally criticizes Radway for bringing her feminist cultural assumptions into her ethnography, she does offer this powerful argument for the addition of the ethnographic to purely theoretical approaches:

I do not believe that the project of ethnography is necessarily at odds with a critical stance, both in relation to consumer society, and with respect to the process of doing research itself. On the contrary, ethnographic fieldwork among audiences – in the broad sense of engaging oneself with the unruly and heterogeneous practices and accounts of real historical viewers or readers - helps to keep our critical discourses from becoming

20 See, Radway 219-225 & Ang 226-234, in Audience Studies Reader for summary of this debate.

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closed texts of Truth, because it forces the researcher to come to terms with perspectives that may not be easily integrated in a smooth, finished and coherent Theory (my emphasis, Ang 227). Critically, the difference between my work and Ang’s is that Ang offered a cultural studies critique of what she saw as Radway’s reductive empiricism, and I intend to use audience research to nuance, frame and extend my own textual analysis. In this sense, inspiration for asking an engaged and involved audience to offer their input to this research is inspired both by Radway’s original research and by Ang’s critical reflections on it.

Before describing in detail the experiences of the focus group project, I want to offer a few reflections on research methods in general, ideas of constructionist research in particular, and why I chose my particular approach to gathering the thoughts of an audience. The caution in the move towards audience interrogation, in bringing in the voice of the viewer, is to avoid a form of ethnography that via the structure of interviews and questions might end up confirming the researcher’s vision of the material. Critically, having decided that I do not want to replace the abstraction that happens in the medical ideology of discovery with a cultural studies abstraction of a theoretical understanding of representation, I also want to avoid a qualitative method that simply reinforces my own analytical conclusions. In this sense I want this work to create ideas that are respectful of diverse ways of understanding difference and the interpretation of its representations.

In the context of constructionist research, Kathy Charmaz offers the idea that ‘as opposed to giving priority to the researcher’s views, constructionists see participants’ views and voices as integral to the analysis and its presentation (402). Mirka Koro-

Ljungberg also asks us to consider the idea that ‘interviews are deeply and unavoidably

107 implicated in creating meaning that is typically treated as residing within respondents’

(430). Constructionist research would appear to offer a progressive route into drawing out new voices and ideas; however there is a need for some caution. James Holstein and Jaber

Gubrium draw the distinction that ‘whereas the naturalistic impulse in fieldwork is typically to ask “what is going on?” with and within social reality, constructionist sensibilities provoke questions about how realities are produced’ (374). In one sense this sentence sums up the aims of this whole project, but for Holstein and Gubrium this means focusing on ‘the discursive resources with which reality is constructed’ with the aim of making ‘visible how language is used to construct the objects it is otherwise viewed as principally describing’ (378, 391). The problem in this focus on social construction via language is that we return to Radway’s concern that the academic privileges their own understanding of the performative function of a text, and in this approach to ethnography, looks for the participants to confirm this. If the researcher has pre-determined how a text constructs meaning, then there is the danger that this becomes an exclusive lens through which they view their participants’ responses. This contrasts to Charmaz’s approach to constructionism that places the participants’ voices on an equal footing with the researchers’ and acknowledges that the whole research process is in part social construction; research is a deliberate coming together that has its own language and structure (402, 403). The methodological inspiration for this work, then, comes in part from Charmaz and Koro-Ljungberg’s idea that ‘constructionist interviews are dialogical performances, social meaning making acts, and cofacilitated knowledge exchanges’ (430).

Though this research does not include interviews in the conventional sense this idea of

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‘cofacilitated knowledge exchanges’ would appear to be a positive aim for the focus group project.

There is, then, some potential in constructionist approaches to research to break down conventional hierarchies between academic researchers and participants, not only in the status given to knowledge, contribution and research conclusions, but also, where possible, in the structure of the research environment. While I have to acknowledge the place of the academic as facilitator as well as my point of privilege in choosing the majority of the material to be viewed in this project, there is a clear wish to attempt to open up the space to as broad a range of ideas as possible. This is to aim for what Broun and Heshusius call for in the context of Canadian disability research, for the ‘mutual construction of knowledge through shared perceptions, experiences and concerns’ (4).

The structure and experience of the focus group

Having set out the rationale for the inclusion of human subject research and offered some justification for the focus group approach, I now want to describe in detail the specific experiences of the focus group and our meetings. The group was made up of six members (including myself) of an existing care team that had all worked with one autistic boy. This team, of which I was a member, had been asking me to facilitate film screenings for some time. The intention was for the group to meet on five occasions in the

Spring of 2012, but in practice the group met six times because we collectively agreed upon an additional sixth meeting to watch a representation of autism that we all hoped would come closer to a positive representative image of ASD. The meetings took place at my house, and the conversations were recorded and transcribed with the gathered

109 information being interrogated as research for this dissertation. The project received initial approval from the Trent University Ethics Board in April 2011 and an amended version of the ethics application was approved in April 2012. The rationale behind these focus group meetings was to solicit the opinions of professionals and experienced volunteers who have worked with persons diagnosed as autistic, and in many cases worked more widely in care and therapy fields. Fundamentally, I wanted to ask what the group members did and did not recognize in these representations and what responses they had to various cultural constructions of autism and autistic spectrum disorders.

In having this connection with one autistic child, members of the group were all, at one level or another, friends, even though for some of us it was the first time we had met in two years. The timing of the meetings proved useful for the group, as the family of the child had just moved to Toronto, drawing an end to what was for some of us at least a four year relationship with this boy. In this, two members of the focus group felt that this viewing and talking experience provided some sense of closure on their work with this child, and I would offer that it also performed this role for myself.

One potential criticism of using a specific and known care team to act as a focus group is that this group does not represent a random sample of the Canadian public, nor does it contain members who had a declared diagnosis of autism or asperger. To address this issue that the group could be conceived of as offering narrow or unrepresentative opinions, it is worth relating some of the background and experience of group members.

Brian is a sixty-year-old with a Ph.D. in applied psychology working as a

110 psychotherapist, and play and art therapist.21 He has significant experience working with children and adults on the autism spectrum and was for a number of years the main practitioner working with the autistic boy. In this role, he also supervised the team of paid and volunteer workers. Mel worked as part of the team for four years until the boy’s family moved to Toronto. She provided one-to-one care and therapy to the child, and respite care for the family. Mel is in her mid-thirties, and has a practitioner’s certificate in expressive art therapy. Janice is a fifty-five year old mother of two young adults and recently retrained as a mortgage agent after ten years of being a homemaker. She had previously worked in social services and also worked as an employment counsellor. She volunteered as part of the care team for over two years, but had not been a regular member of the team in the two years prior to the focus group meetings. She had come to the team initially through her daughter who had also been part of the care team. Myria works as an art and play therapist while pursuing her Masters in Counselling Psychology.

Alongside Mel and myself, at the time of our meetings, she had just finished working on a weekly basis with the autistic boy. Janet, who only managed to attend one of our meetings due to illness and other commitments, is the grandmother of the boy and a business professional and consultant. Of the six people involved in the focus group three were paid for their work with the autistic boy and three, including myself, worked on a voluntary basis.

In the nearly five years that I have been connected with this particular child and his family a number of other people had been involved in his care and support. Some of these

21 I initially set out to follow the convention that research participants should be identified by pseudonyms in order to preserve their anonymity, but in conversation with the members of the group all participants agreed for their first names to be used in the final presentation of the project. On reflection this openness of identity matches well the focus group’s generosity of contribution to this project.

111 other people were asked if they wanted to join the group, but were either too busy or had moved away from the area. There were also a number of others who had worked more briefly with the child but had not made a long term connection to either the family or other members of the team.

One of the clear challenges of a project of this sort is finding dates when all members of the group could attend. With potentially six participants including myself this was not an easy task. I made the decision that, though ideally all members would attend all meetings, as long as we had a minimum of four people present at a meeting, including myself, it would be worth running it. In the end Janet could only attend the one meeting where we watched 32 Short Films About Glenn Gould.

In choosing to take this particular approach of working with a known team, I would argue that any disadvantage in not having a random sampling of participants was made up for by the comfort level that existed within a group whose members already knew each other. In this sense, my ethnography follows the path set by Radway in Reading the

Romance, as she makes clear to us in Chapter Two of her book, her subjects, the women of Smithton who she interviews, are all connected via Dot the owner of the book shop that supplies their romantic literature (46-47). I would further suggest that the depth of thinking and ideas expressed by my focus group benefited from their existing interest and engagement in the subject, and their familiarity and comfort with each other also led to strong debates and a confident communication of ideas and opinions. In the conversations that emerged, there was a sense of work already done on this subject and a prior knowledge that helped to level any potential hierarchy between academic facilitator and participants.

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Clearly there is an argument that my ethnographic focus should have been on soliciting the thoughts and opinions of people who identify themselves as autistic, asperger or somewhere on the autism spectrum. While this approach has potential value, it presents a number of practical questions, and I would argue that there are a number of theoretical reasons why it is also not an essential direction to move in. Practically, in my initial conversations about ethics approval, concerns were raised about the ability of anyone on the autism spectrum being able to give informed consent. This concern even extended to individuals with asperger who lived what could generally be described as

‘fully independent lives’ in the community (though one should of course note the assumptions that may exist in this idea of independence). These conversations raised interesting questions about how ideas of consent, and the ethical achievement of consent, become bound up with wider cultural ideas of functional and normal behaviour. There was the idea that if potential diagnosed participants were either university students or employed, then they were in a position to give informed consent. The implication of this is that to be either employed or studying and labelled is to qualify to give consent, but to be labelled and unemployed implies a level of social deficit that does not allow informed consent to be given. In this sense once the minimal marginalization of unemployment is appended to an autism identity, within the vision of ethics approval, an autism identity appears to become causal and therefore indicative of a more complete inability to understand what giving consent would mean. Ultimately, I would argue that through appropriate forms of communication and a broad approach to how the details of a project are communicated, and a willingness to accept consent in forms other than a signature at the bottom of a long sheet of paper, it would be possible to gain informed consent from

113 almost anyone who is or is not on the autism spectrum. In many ways, simply remaining part of a research process, and demonstrating comfort in this, could be seen as a process of giving on-going informed consent.22 Ideally as part of some future project, I would still like to create a focus group that contains participants who are both on the autism spectrum, involved with autism, and representatives of a wider, but interested public.

Some inspiration for this potential future work and for the focus group project as a whole comes from Phil Schwarz’s experience of running a film series for the Asperger’s

Association of New England in 2004 and 2005 (256-270). Schwarz’s project brought together members of the Association to watch a series of autism and asperger representations and then discuss their responses (258). In this sense, this project is the closest study that I can find to my own work, though in this case the group members all self-identified as asperger. Critically, Schwarz’s viewing group was not established as part of an academic project and the academic account of the experience comes as a secondary process. Schwarz appears to take an existing viewing group experience and then find the academic interest in recounting this experience in Osteen’s book. Schwarz does not discuss his process of obtaining ethics approval.

In thinking about the make-up of the group it is critical to recognize that just as the work of a singular academic critic cannot fully complete the meaning of a text as

22 From a theoretical position, it is important to note that after some discussion, the concerns of the Trent University Ethics Board in relation to an asperger viewing group were met. If this had ultimately been the direction in which I wanted this research to go, I would have been able to construct a focus group of asperger individuals as long as they met the social expectations noted above, but this would still not have been in any sense a representative sample either of autism or some concept of a wider public. If the argument is to represent autism, then the argument should be to represent autism in its broad and multifaceted sense, and not some specific version of high- functioning asperger that appears more able to sign-up to a conventional idea of informed consent. I would also argue that if participants were drawn from this particular population and mostly from a university context, they would be no more representative of the broader public experience of autism than the chosen group of care workers and volunteers.

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Dolmage suggests, nor can any ethnography come to the final reading of any cultural experience or phenomenon. As Radway notes in her revised 1991 introduction to Reading the Romance, ‘I also no longer would want to argue theoretically that ethnographies of reading should replace textual interpretation because of their greater adequacy to the task…. Rather, I would claim that they can be fruitfully employed as an essential component of a multifaceted approach’ (5-6). Radway captures the idea that neither the ethnographic, nor the literary critical approach, nor even their combination completes a reading, but that the two working together can offer more critical understanding than either alone. In this, then, I would argue that the make-up of the group, counter to the conventional wisdom of sociological research, is not that critical, as long as the group has some logic to its membership and most importantly is interested in exploring the material and ideas at hand. Critically, of course, this idea of drawing together different critical approaches and acknowledging the diversity of viewing experiences also needs to extend to the analysis of focus group’s work and its final presentation.

While I had some questions prepared for the viewing group, I anticipated following a relatively unstructured and narrative approach to this work that, in reference to the ideas expressed above about constructionist research, avoided overly guiding participants’ comments and reflections. The following represent the type of questions that I had available to me if the conversation needed it: ‘What do we make of the difference between healing, cure and recovery?’; ‘Has this experience of watching these representations of autism and asperger changed your sense of, or feelings about, autism and the autistic spectrum?’; and ‘What would you like to see in representations of ASD?’

A number of questions also focused on issues raised by specific films.

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In addition to what I hoped to be a productive conversation, participants were also encouraged to keep a journal for the weeks that the viewing group met and to make notes on particular films in their journals as we watched them. At the end of the project, participants were asked if they were comfortable that these journals be included in my research and all consented to this. I also planned to pause films and television programs at specific moments to ask participants to write down immediate responses on index cards.

In practice, this only happened once, as it felt inappropriate to interrupt people’s experience of the material.

Respecting the idea that in inquiring into autism one is at times entering a non- verbal realm and potentially alternative conceptions of experience, communication and language itself, and that knowledge often exists at the limits of traditional methods of inquiry, the focus group project also engaged in free-associative and arts based methodologies. In this particular case, this meant asking participants to produce ‘cluster poems’ and ‘body papers’ in response to some of the viewing experiences. Making a cluster poem is a free-association thinking and writing exercise that aims to solicit someone’s immediate response to an idea, experience or representation. To make a cluster poem, participants write the name of the subject (in this case the name of the film or television program, or character from a film or television program) in the centre of a large sheet of paper. Taking a felt pen participants then draw circles around the term in the centre of the paper until an idea or response occurs to them. This response is then written on the paper. This new idea is then circled with the pen until another idea stimulates another phrase or word. This process continues until the paper is full. The idea behind the circling is to get participants to move away from attempts to intellectualize a ‘correct’

116 answer or response, that in the physical act of circling the words or phrases a more immediate or unmediated response emerges. To make these phrases and words into a poem thirteen random selections are made from the paper and then written in the form of a poem. To make the selection random, participants place the paper to one side and turn it with their hand, stopping at random and placing their finger on the paper. The text nearest their finger becomes the first line of the poem. This process is repeated another twelve times.

Typically a body paper is an outline of a person that is drawn around them by a friend. One then takes the outline and writes life experience on the paper in appropriate locations on the body image. For the focus groups this process was adapted to explore our responses to the films and television programs we had been watching. A simple body outline was drawn on a large sheet of paper and identified as a character from a film. The group then collectively wrote responses on various parts of the paper to indicate responses and reactions to that particular character or viewing experience.

Both the body paper and the cluster poem methodologies came out of a four day workshop I attended in the summer of 2011with Fiona Griffiths. Griffiths is a trained, nurse, drama practitioner and has a Master’s of Fine Art in Performing Arts and Creative

Process. She runs workshops in Toronto and on Manitoulin Island in theatre clown and performance. The workshop titled ‘Body Wilderness’ was an exploration of movement and body awareness through techniques of theatre clown (“Creative Expression”). The cluster poems and body papers were introduced as techniques for exploring our free- associative relationship to the workshop and our own experiences of working with our own bodies. Since the workshop, I have adapted and used both these techniques in

117 teaching students at Trent University. The cluster poems have been particularly useful in helping undergraduates explore what they expect, and then experience, from a particular course.

In pushing these methodological boundaries, I wish to recognize that useful and original knowledge can come from a variety of different, and at times unconventional, approaches to criticism. Just as I have argued that subject formation does not always follow traditional identity theories, so I want this research to explore how ideas and knowledge formation do not always emerge from traditional dialogues and conversations, and that free-associative and art-based methodologies may also prove informative, as well as challenging to conventional research ideas.

Though I will describe the contents of our viewed material in more detail as it is debated in the next three chapters, here I want to quickly outline the details of our meetings and the representations we watched. At the first meeting, we watched Snow

Cake and Brian, Mel, Myria, Janice and I were present. Snow Cake is a Canadian/British co-production that follows Alex (Alan Rickman) as he gets to know the autistic Linda

(Sigourney Weaver) after an accident brings them together. This film allowed for the exploration of autism and ideas of Canadian identity in small town Ontario. At this first meeting we also discussed part one of the CBC radio documentary The Dark End of the

Spectrum that I had asked participants to listen to before the first meeting. This one-hour radio documentary first broadcast in 2008 traces the history of the emergence of autism as a diagnosis and discusses key characters such as Bettelheim and Kanner. In many ways this one-hour documentary usefully covered some of the material and history that Murray explores in his 2012 book Autism. The Dark End of the Spectrum is a two-part series, the

118 second one-hour broadcast followed the experiences of one asperger subject in an

American context and thus I chose not to include this in the work-load of the group.

The same group was also present for the second meeting two weeks later when we watched and discussed The Horse Boy. This film, which was one of two non-Canadian representations viewed by the group, follows a family’s attempt to address their child’s autism by visiting Sharman in Mongolia. It received its Canadian premier at the HotDocs documentary film festival in Toronto in 2009 (HotDocs).23

At the third meeting where we watched two episodes of The Nature of Things,

Brian, Mel, Myria and myself were present, but Janice had other commitments. I loaned

Janice copies of the programs and a week after the project was finished the two of us met for coffee and a conversation. I did not record this conversation, but made a few notes.

These two episodes of this well established CBC documentary series spanned a sixteen year gap between 1995 for the first episode and 2011 for the second. Both programs engage with the causes and experiences of autism and allowed the group to review how discussions of autism and its representation had shifted over this critical time frame via a mainstream Canadian television series.

At the fourth meeting where we watched 32 Short Films About Glenn Gould, all five participants including Janet were present. Though the film makes no mention of the possibility that Gould had asperger, this idea has been raised by subsequent biographers

(see Maloney 123), and the film does construct the sense of Gould as an unusual character.

This film allowed for the debating of the historical and retrospective diagnosis of ASD

23 At the HotDocs film festival the film was shown under its original title of Over the Hills and Far Away.

119 and exploring ideas of disability being constructed differently over time. It is worth noting that this film was also used by Schwarz’s viewing group in New England (259).

The following week Brian, Mel, Janice and I watched the short documentary

Bridges-Over-Barriers. This twenty-minute film follows a group of autistic adults who meet in Guelph, Ontario to make use of augmented communication techniques. This film illustrates the lives of this particular group and explores the case for the use of alternative communication techniques for non-verbal autistic adults. Unfortunately Myria was not able to attend this meeting. This was a particular frustration for her, as she had expressed a wish to hear more from the autistic community, to have more specific autistic voices in both the representations shown in the focus group meetings and in wider debates on what autism is and how we address it. This was a particular criticism she raised with regards to the two The Nature of Things documentaries. At the end of the project, Myria borrowed this short film and other participants borrowed both books and DVDs in order to continue their exploration of ASD and its representation.

The sixth meeting was not in the original plan, but as the project progressed there were requests that the group continue to meet after my Ph.D. research was completed. I asked if we could add one more film to the ‘official’ list and this was agreed to by all. At this final ‘formal’ gathering, Brian, Mel, Myria, Janice and I watched the 2011 American documentary, Loving Lampposts. Ted Drezner’s film directly addresses the complex relationship between seeing autism as a disease to be cured and as a difference to be supported and embraced. He does this through a series of interviews and his direct experiences of his son who greets the lampposts in Central Park, New York, when they go for walks.

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In reflecting on the experience of all the meetings, in practice the conversations were almost always engaged and animated and rarely required the stimulus of direct questions. In retrospect, I believe that the quality of the conversations and therefore of the data that is useful for the Ph.D. is in many parts a result of the comfort the group felt with each other, and participants’ ability to express challenging and complex ideas whose contemplation and expression was supported by the group as a whole. Part of this comfort came from meeting at my house which provided a warm and familiar environment, and providing food and refreshments for the evening both looked after the physical needs of the group, but also affirmed the convivial and supportive nature of the group’s work. This comfort reached the point where other members of the group would bring food and feel comfortable making tea and drinks for themselves during the evenings.

The level of commitment from participants should also be acknowledged at this point. On more than one occasion, we would watch a two hour feature length fiction film or documentary and then converse for up to an hour afterwards. Conversations ranged from seventy minutes at the end of Snow Cake (our first meeting) to an intentionally truncated twenty-five minutes after Loving Lampposts.24 For the purposes of transcription and record, these meetings were audio recorded. One challenge of the process was trying to, in effect, ignore the recording device. The sense that one is ‘performing’ because one is being recorded takes some getting used to and there was in this the danger of reintroducing a certain inhibition and formality. One response to this potential distraction was to make it clear that the recording would be stopped when we collectively felt we had

24 Because our viewing of Loving Lampposts constituted a sixth additional meeting, it was agreed that we would keep our formal, recorded discussion of the film brief. This allowed time for an informal conversation at the end of this last meeting to provide the group with a sense of closure through an exchange that participants knew would not form part of the research.

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‘had enough’ of the formal aspect of the evening. Conversation would typically continue for some time after the recording stopped, but this further conversation did not form part of the research. Ideas expressed after the recording stopped may well have been part of the ideas participants expressed in their journals, but there is no formal way of connecting this to specific conversations.

Though participants were given blank notebooks at the first meeting and encouraged to make notes during screenings and keep a journal to reflect on the experience of the films between meetings, in practice, most of us took very few notes during screenings. I suspect we wished not to be distracted from the immersive experience of film viewing. And as to be expected from people with busy lives, little additional material was written in these journals between meetings. Myria was something of an exception, writing about twice as much as anyone else. Brian’s journal also stood out for the scatological and poetic nature of his comments.

The body paper exercise was done only once after watching 32 Short Films About

Glenn Gould. Brian agreed to lie down on the paper and I drew around his shape. This simple outline was placed on the table and identified to the group to represent Glenn

Gould. We then all took different coloured pens and wrote comments, questions and thoughts onto the outline. Each person’s ideas could be connected by the colour of the writing. However, I did not note who was using what coloured pen, therefore, it is possible to see a connection between ideas of the same ‘colour,’ but not see these as the product of a particular individual and their other responses to the film, or any other focus group meeting.

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At the end of the project I found I had not used the more experimental methodologies of body papers and cluster poems as often as I had expected. There were a number of occasions when I was tempted to introduce the cluster poem or body paper approach, but felt that I did not want to interrupt the conversation. I was also aware that I did not want to position myself too definitively as the controller of the meetings in deciding when and how to use these tools. If I use these methods in future research, I would chose to explain and demonstrate the tools of cluster poems, body papers and potentially other modalities to the group at the start of the process, with the intent of empowering all group members to suggest where these tools should be used.

At the end of the six meetings we had one body paper on Glenn Gould; a cluster poem on The Horse Boy and one completed in the fifth meeting on the overall project; and one set of index cards that resulted from me stopping The Horse Boy at the point at which the father announces they are going to go to Mongolia. Reflecting on the project, I would have liked more of these alternative sources of data, but I am happy that for the majority of the time, the conversations were allowed to flow freely. Though I do not want to argue that these alternative experimental methodologies produce more useful or valid data than conversation, I do believe that a variety of paths into interrogating how we think about something is valuable. Part of the justification for the body papers and cluster poems is the argument that different people express their ideas effectively through different modalities, and accordingly, as I worked with the focus group’s responses, there were times when I wished for more of this alternative input. I am also clear that stopping a film in ‘mid-flow’ and asking people to write comments is rather a discordant move and one that I never felt that comfortable with. Though I wanted to do this in order to capture

123 thoughts at a particular moment that might otherwise be lost, in practice, I now believe it is best to trust participants to remember and offer the responses that are most valuable to them at the end of the film.

Despite knowing the whole group well and counting a number of its members amongst my closest friends, I approached the whole experience with a certain nervousness. The critical nature of this project for the success of my Ph.D. put pressure on me to make this ‘work,’ and I had no guarantees that participants would enjoy and stay with what could be a demanding experience. I was also aware that I was approaching this style of research from a humanities perspective and not with a particularly strong history in social science human subject-based study. In one sense this allowed me more space to make up my methodology as I went along, permitting me a more open method of inquiry rather than being bound by a particular qualitative approach or history, but it also meant that my results and my interpretation of my data are exposed to the criticism that their capture has not followed a critically understood, established academic path.25

Again, I feel the best defense against this criticism is in the quality of the conversations and in the ideas and engagement expressed by participants during the meetings. Were there subject areas that did not come up in conversation that I would have liked to have discussed? Yes. However, it was interesting to note that the group displayed both its knowledge and compassion in its interest in how a broader public might be

25 A point of criticism raised by a member of my Ph.D. committee was why this particular type of material? Why no reading, no books, novels etc? One simple answer to this question was my wish to place a realistic and modest burden on the focus group. In meeting to watch films, I was already asking for a commitment to five and then finally six whole evenings. In the sense that there is also no possibility of a fully comprehensive study, one that takes into account all possible material that the Canadian public could be exposed to, some form of sampling and framing was required. In this case I chose a frame that was both realistic in time commitment and that I suspect acknowledges the most typical point of exposure for a Canadian audience coming across autism.

124 brought to a place where autism is seen as a complex mixture of disability and difference to be respected; in the group’s compassion for parents, both those who desperately hunted for the most impossible of cures and those, whom the group respected greatly, who displayed a genuine comfort with the autism around them. There was also a strong interest in what interventions worked and could work with autism and how these interventions could only be successful, if it was first accepted that autistic individuals had the right to be autistic. And it is interesting to note that debates over interventions and mitigating some of the challenges that can come with autism often dominated the thinking of this group who had all worked with an autistic child on the more challenging and classic end of the spectrum.

The actual experience of running the focus group meetings, of attempting to put together a project of this sort, of course, never quite matches one’s prior images of it. Our dreaming and dwelling on what such an experience will be and where it will get to, and the lived experience of it are never going to be one and the same. There is clearly something to be said for not projecting too much in the lead-up to such a project, in part as protection against bringing in one’s own desires for specific answers to emerge, but also to remain ready for the group’s work to set its own directions and outcomes.

In coming to a place of vulnerability and openness, maybe even skepticism, in the application of existing disability theory and my own understanding of it, I wanted to ask what others thought, what other people had to say about images of autism that I considered useful and interesting in my arguments about autistic representation. The basic idea of the focus group being to take a series of representations or stories of autism from broadcast television, cinema, radio and privately published material, and show them to an

125 engaged group of people and discuss with them what they felt about, and understood from, these representations. What I hope to find as I explore this material and lay out the work of the focus group over the next three chapters is that it has made a significant and critical contribution to this exploration of how representations of autism work in Canada. The input of the focus group, then, sits alongside the framework of academic debates discussed in Chapter One, of the framing of Hacking’s ideas of the new language of autism; reflections upon a particular history of the emergence of a label; critiques by disability studies scholars of the social model of disability, social construction and radical ideas of identity; and an understanding that the medical construction of difference, illness and disability does not take place in a cultural vacuum. And so in this sense what we now head into is this specific cultural exploration.

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Chapter Three - (Retro)diagnosis, Biography and Function

The patient is the rediscovered portrait of the disease; he is the disease itself, with shadow and relief, modulations, nuances, depth; and when describing the disease the doctor must strive to restore this living destiny. (Michel Foucault, The Birth of The Clinic 15)

In Chapter One I outlined the tools and methods of disability studies and how they reflect on both contemporary understandings of autism and its diagnostic history. Chapter Two describes the practices of critique of disability representation and the specific analytical and audience-based approaches that this project undertakes. Here in Chapter Three I will begin the task of applying these methods to representations of autism.

One way to express the history of autism is through its formal, official medical understanding in texts like the DSM, and via clinicians like Kanner, Asperger and

Bettelheim. Another way to look for a history of autism, ASD and asperger is via contemporary speculations about the possibility that historical figures had some form of autism: to look for a way for autism to inhabit history as well as the present. This idea of retrospective labelling that is raised by Hacking, Murray, and Benjamin Wallace in both his New York Magazine article and an interview on CBC radio, offers another possible path for learning about the contemporary sense of what autism is and means, as various impressions of autism are laid over historical figures by contemporary thinkers influenced by their own historical/social contexts. This process not only provides us with some insight into how traits and behaviours become (or come to be) associated with autism, but it also raises questions about how contemporary society goes about the very process of

127 describing difference and otherness in those no longer with us, and helps to illustrate how explanations of human behaviour shift over time. Retrospective diagnosis, then, is part of the representational landscape of autism as historical exploration and part of the contemporary map of autism in the present.

To build on the quotation from Foucault above, we may not strictly be dealing with disease, patients or doctors here, but with disabilities, historical figures and authors; still, it is worth recognizing that an understanding of autism emerges via our understanding of people as autistic. In assigning a label of autism to historical figures, a particular portrait of autism overlays contemporary impressions of autism and has consequences for how it is perceived and experienced in the here and now. Therefore, it is worth looking at how autism is conceived and reconceived via biography and fiction, and how historical figures are rediscovered as examples of autism and asperger, as historical images of a contemporary diagnostic condition.

Chapter Three, then, will explore debates over Glenn Gould as a person with asperger, and how Gould becomes an example of the conflation of the autism spectrum with eccentric genius. This debate includes the responses of the focus group to the biographical film, 32 Short films about Glenn Gould. Chapter Three will also consider how speculation about autistic characters in fiction illustrates a contemporary interest, and how Canadian autism biography and autobiography are, as Hacking argues, making the language of autism. In looking at autobiographical accounts, the focus group will also offer their responses to Bridges-Over-Barriers, a self-published narrative of a group of autistic individuals who make use of facilitated communication techniques. In exploring this material, Chapter Three will illustrate how these representations of autism can lead to

128 habitual ways of understanding a difference that reinforce stereotypes of exceptional ability and disability that then create metaphors of technological fear, and play reductive games of finding autism in every moment of awkwardness. But this chapter will also illustrate how, when handled with care, retrospective diagnosis and biography can create a productive historical trace and can help to remake the language of autism outside of diagnostic texts.

Glenn Gould: a Canadian retrospective case history

Glenn Gould, one of Canada’s most famous musical exports and possibly the most famous and controversial pianist of the twentieth-century has been variously constructed via biographical writing as a person with aspergers; a victim of an overbearing mother; as someone suffering from psychosomatic illness; a genius; and someone whose private life is of little apparent interest. The goal here is not to establish which biography is most accurate, which version of Gould to believe, but in following something of a chronological path from Geoffrey Payzant’s 1978 Glenn Gould, Music and Mind to Mark

Kingwell’s 2009 biography for Penguin’s Extraordinary Canadians series, the task is to explore how biographical constructions comment on Gould as an example of retrospective diagnosis of an autism spectrum disorder. The key questions are: What does placing Gould on the autistic spectrum say about Gould himself, about the processes of writing biography, and about a contemporary culture of disability labelling?

Gould was born in Toronto in 1932 to, by all accounts, conventional protestant parents of English heritage. He lived most of his life in Toronto and died there aged fifty in 1982 (Bazzana 16, 26, 2). His career is generally accepted to have taken off in the mid-

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1950s with his first recording of Bach’s Goldberg Variations (156). Significantly he stopped performing concerts in 1964, apparently to concentrate on recording music and radio programming, but it is typically argued that he also felt uncomfortable about his public reception. This response included comments made about his eccentric behaviour on stage, specifically his habit of humming and using a special dilapidated chair (232).

Payzant’s 1978 book Glenn Gould, Music and Mind is the only text under consideration here that was written in Gould’s lifetime and is an exploration of Gould’s own writing and radio work inter-cut with commentary by Payzant. Payzant’s fundamental position is that Gould as a subject of mental health or disability is not particularly interesting or relevant; this is not the Gould he is creating. He states that:

‘unless I am much in error, his private life is in fact austere and unremarkable’ (xi). He does however report Gould’s own words that ‘I found going to school a most unhappy experience and got along miserably with most of my teachers and all of my fellow students’ (2). In John Robert’s 1999 collection of Gould’s writing a number of similar comments from Gould emerge including the rather telling comment that: ‘I suppose the fact that after school I didn’t go out to play hockey, but could only play piano, gave me a feeling that music was a thing apart’ (39). In this moment of ‘could only play the piano’ we meet one of the key questions that will emerge in the following debate over Gould’s diagnostic status. Is this ‘could only’ a product of Gould’s fundamental autistic otherness, a relatively easy to infer obsession as asperger trait, or is this ‘could only’ an indication of other forces, such as maternal imposition which is an idea that emerges in both Peter

Ostwald and Kevin Bazzana’s biographies? It is also worth noting, or speculating on, more contemporary responses to the idea of an ‘austere’ private life that Payzant suggests

130 for Gould. The very idea that austerity is something unremarkable in 1978 but may be both a specific point of interest and seen as an indicator of diagnosis thirty or so years later is potentially indicative of a general greater cultural interest in experiences of mental health, intellectual disability and in autism in particular. In the interest in retrospective diagnosis, alongside biography and fiction that contain neurologically diverse characters, there is the suggestion that particular forms of disability and otherness have emerged from the shadows or at least have become a source of speculative fascination since

Payzant was writing.

Payzant also references Anthony Storr’s The Dynamics of Creation: ‘since most creative activity is solitary, choosing such an occupation means that the schizoid person can avoid the problem of direct relationships with others’ (52, no citation for Storr). This use of the somewhat dated language of ‘schizoid type’ not only places Payzant’s book in its historical moment, but could also be seen as further evidence, alongside Gould’s own comments on his schooling, for a more contemporary diagnosis.26 What is key, then, in

Payzant’s work is not that he is entirely ignoring Gould’s potential otherness or mental health problems, but that in the context in which he is writing (which inevitably includes a respect for a then living artist), these factors do not constitute the point of interest in

Gould, and that this focus clearly stands in contrast to much that will follow. Payzant’s work also predates the common use of Asperger’s Syndrome, or any other version of this term, to describe a version of high-functioning autism or even any idea that there was a form of autism that was not significantly disabling.

26 In the focus group’s discussion of 32 Short Films About Glenn Gould, Brian noted that ‘schizoid type’ implies the symptoms of schizophrenia and he reminded us that autism was once referred to as childhood schizophrenia. As such the symptoms that we might now see as autistic were once formally seen as a form of schizophrenia.

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In a forward to Peter Ostwald’s 1997 biography on Gould, Glenn Gould: The

Ecstasy and Tragedy of Genius, Ostwald’s wife describes her husband’s work as a

‘psychobiography’ (11) and this text challenges Payzant’s assertion about the dullness of

Gould’s private life by making this its main focus. Ostwald, a psychiatrist who knew

Gould personally for twenty-five years, but knew him as a friend not as a client, is the first to raise the possibility that Gould had asperger. Taking reflections from Gould’s father that Glenn did not cry and was in the habit of flapping his arms and hands around as an infant, Ostwald suggests that Gould was showing some of the symptoms of infantile autism (40-41). But he goes on to state: ‘Glenn obviously did not suffer from this disease.... But some of the behaviour he manifested later in childhood.... does resemble a condition called Asperger disease’ (42).

These comments are fascinating not for what Ostwald has to say about Gould as someone who was potentially aspergic, but for what he does not say. The limit of his interest is less than a page and he makes no further significant reference to asperger or autism. Ostwald does not relate any of Gould’s subsequent mental health problems or eccentric behaviour to this diagnosis. Fundamentally Ostwald’s book focuses on Gould’s hypochondria, anxiety and psychosomatic illnesses as psychological experience and does not trace these behaviours back to a potentially biological start point.

Ostwald’s language now feels very dated, referring to autism as both a condition of infancy and as a disease. In something of a psychoanalytic cliché, Ostwald also talks at length about Gould’s relationship to his mother. He reports comments from a childhood friend, Robert Fulford, that ‘if hypochondria could be inherited, we know who the villain was,’ and Ostwald also offers: ‘that Glenn was allowed to sleep with his mother during

132 those formative years when sexual urges become intense and conscious raises serious questions’ (59, 60). For Ostwald, clearly asperger does not explain or fundamentally construct Gould. For Ostwald, Gould’s talent is not an aspect of his eccentricity or otherness, but in reality his ‘profound anxiety, schizoid insecurity and personal eccentricity hampered enormously what might have been a far more productive career as a pianist’ (23). In a sense what Ostwald has created is the classic biography that looks to find the ‘man in the boy,’ to see the progression of a life that constructs his version of

Gould from childhood onwards. Asperger may well be a part of this, but in Ostwald’s text, it is not the primary marker of Gould.

Kevin Bazzana in his 2004 biography addresses directly Ostwald’s suggestion that

Gould may have had asperger and also dismisses Timothy Maloney’s more detailed research on the subject: ‘So far I have not been persuaded that such a diagnosis really fits the biographical facts or is necessary for making sense of Gould’ (5, my emphasis).

Suggesting that Gould as autistic is a ‘colourful notion,’ Bazzana in effect prefaces his text with a clear rejection of Gould as autistic other (5). Rather, he follows Ostwald and a conventional biographical line that ‘his origins had a great deal to do with who and what he was’ (Bazzana 13).27 Here then is the traditional biographical justification of exploring the details of a person’s life and experiences in order to come to some conclusions as to who they were.

Timothy Maloney’s article, ‘Glenn Gould, Autistic Savant’ which was published in the 2006 collection Sounding Off: Theorizing Disability in Music offers a very different approach to Gould. Though Ostwald was the first to suggest that Gould could have been

27 Though it could be argued that in the idea of ‘his origins’ one could be talking about biology, in the hands of Bazzana, ‘origins’ creates the image of early life history and childhood experience.

133 on the spectrum, it is with Maloney’s work that asperger takes centre stage in the drama of Gould’s life. Here we have not only the case for Gould as asperger, but also for this diagnosis as the central explanation of who he was. Maloney lists off Gould’s differences and challenges as symptoms and aligns them with diagnostic criteria for Asperger’s

Syndrome: ‘I began to mine the ever expanding Gould literature.... to discover whether the anecdotal evidence about his unusual behaviour and lifestyle as an adult might support a posthumous determination of autism’ (123). Interestingly, Maloney wishes to label Gould aspergic in order to, as it were, save him from his own symptoms. Maloney indicates that Gould has been variously diagnosed as suffering a ‘mixed personality disorder’ and from simple stage fright and separation anxiety, but for Maloney a neurologically focused label of Asperger’s in effect allows Gould to escape what he appears to be suggesting are the more negative and self-indulgent psychological diagnoses of his behaviour. He suggests:

if his eccentric comportment, unusual lifestyle, and even aspects of his musical genius could be shown to originate in a single neurobiological condition, as opposed to being merely [my emphasis] disparate manifestations of a high-strung, self indulgent personality, would a reappraisal of his life and career not be in order?.... if Gould were autistic, there would likely be no volition involved. His “neurotic mannerisms” and “behavioural style” would be manifestations of his autism, possibly even despite any desire on his part to act otherwise. (125) Maloney justifies his argument by taking various criteria and diagnostic categories of asperger and mapping them onto reports of Gould’s mannerisms and behaviours (127).

The technical problem here is that Maloney borrows from different diagnostic sources to construct his map of asperger that best suits his knowledge of Gould: he takes from DSM-

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IV and from works by Lorna Wing, as well as the ICD-10. He acknowledges that from these sources: ‘I have compiled a composite list of criteria for considering anecdotal evidence about possible manifestations of autism in Glenn Gould’ (126). Though the use of multiple sources to make a diagnosis is not uncommon and should not always be considered incorrect, it does present the danger of selective noticing in retrospective diagnosis. The additional disability studies problem here is that he concludes that Gould’s talent also lies in his asperger:

Autism is the solution to the perplexing riddle of Gould’s existence, and is therefore arguably the fundamental story of his life.... Aspergers Syndrome gave him those gifts that in turn helped him forge a brilliant, multifaceted career. Without AS, he would not have been the distinctive musical genius we know as Glenn Gould. (134) The problem here is that Maloney overwhelms a construction of Gould with the label. Asperger, or in Maloney’s hands ‘Aspergers Syndrome’ as a biological otherness inherently connected to savantism and genius is given credit for all that Gould is; it becomes the only idea needed to explain his life.28 Maloney credits Asperger for Gould’s

‘brilliant, multifaceted career’ and his ‘distinctive musical genius’. This falls into the trap, that I have already discussed, of letting an autism diagnosis overwhelm any other details of a person’s life, of their social and cultural needs and experiences beyond their diagnosis. Eva Vakirtzi and Phil Bayliss argue that an ‘autism apparatus’ turns autistic

28 It is worth noting that Bazzana also suggests that we not too quickly conclude that Gould was a child prodigy and that we consider that he was not a born genius: ‘the private recordings reveal another surprising fact: Gould was never a pianistic prodigy of the highest order’ (103). There is no clear sense that he puts forward this idea to refute ideas of asperger, and the all too common connection made between asperger and some form of savant skill, but the idea that Gould learned, rather than was born with, his skills does in part help to undermine the sense that his talent was ‘owned’ by his neurology.

135 children into ‘passive bodies’ as their lives and behaviours are viewed through a lens of autism (2). They note that once an autistic label has been attached to a child his or her behaviour is seen as examples of symptoms, rather than an expression of their own personality (3-4). In the context of autism and children, this is typically a limited vision of a child’s potential, but in the case of asperger and biography the diagnosis becomes a neat explanation for eccentric genius and a potential capturing of the individual by their label.

In Maloney’s hands asperger is in danger of becoming overstated, of erasing other thoughts about Gould, and in this, one could argue that Maloney is engaged in a form of narrative prosthesis, a form of shortcutting, that looks to explain Gould in a singular move; to create what might be assumed to be a recognizable image of disability and otherness in the moment of ASD labelling. As mentioned in Chapter Two, Mitchell and

Snyder's idea of narrative prosthesis, where a disability trait in literature or film comes to be a shortcut to representing some flaw of character, or a disabled person becomes the fixed and unchanging surface upon which ‘non-disabled’ characters enacts their fate, could also been seen to be present in the debate over Gould as asperger. The complexity and depth of his character is lost to his diagnosis as the idea of asperger stands in the place of, or becomes a type for, explaining him (see Mitchell and Snyder, Narrative

Prosthesis 5, 50, 96 McRuer 16-18). In this sense Maloney reveals the problems of his own approach, when he removes Gould and his life journey from his piano playing and attributes everything, successes and failures, to his aspergic exceptionality. One of the dangers in Maloney is that he replaces a knowledge of a life with a knowledge of a biology and at this juncture, one could argue, that the role of biography changes from one of explaining a life to one of unearthing a diagnosis. A particular Gould emerges in

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Maloney, as read through a lens of asperger that overwhelms any other form of understanding, Gould is reified as asperger and asperger, in turn, is again captured as tragedy and genius and reified itself.

In this critical biography moment, we can see some significant problems with

Maloney’s own understanding of Aspergers Syndrome. He highlights much of this problem himself when he suggests that Gould probably suffered some form of ‘late-onset autism,’ a diagnostic category that is not part of any formal diagnostic text. Here then is the biographical failure to find or see the significance of the evidence in Gould’s childhood of aspergic traits (though Ostwald writing nearly ten years before appears to offer some of it). In allowing Gould to be possessed by his label, Maloney misses or ignores the possible other explanation of psychological damage brought on by an overbearing mother, and at the same time he misses much of the evidence that could be used to frame him as asperger, notably obsessive and asocial childhood habits are also missing from this application of a late-onset autism.29

Maloney also creates another problem of agency in his capturing of Gould as aspergic. In assigning an asperger diagnosis to Gould, Maloney is arguing for a relief from, or a positive explanation for his awkwardness and eccentricity, for his apparent self-indulgence. He makes the point that ‘if Gould were autistic, there would likely be no volition involved’ (my italics 125). Maloney attempts to remove stigma from Gould by offering him a disability identity in place of mental illness that he pushes towards ideas of self-indulgence and choice (‘volition’). In the admirable attempt to offer understanding of

Gould and his particular otherness via a disability lens, there is a danger that Maloney is

29 In discussing the idea that Gould can be explained by asperger or by a dominating other, the ironic connection to Bettelheim and his idea that autism was caused by maternal indifference should not be ignored.

137 further stigmatizing other forms of difference and experiences of mental illness.

Further arguments about Gould’s potential aspergic diagnosis come from Maloney in a CBC interview in February 2000 and according to his University of Minnesota online biography that was last updated in 2010, he is working on a book on Gould. Maloney is also not alone in making the case for placing Gould on the spectrum. In a 2004 article for

The National Post, Gould’s childhood friend Robert Fulford, who appears to have been a source for a number of biographers on Gould’s childhood eccentricities, suggests that reading Ostwald’s idea of ‘Asperger’s disease’ made sense to him; Fulford makes the point that ‘Glenn and I were close friends in childhood and youth, and today just hearing the word Asperger makes me remember how much trouble he had dealing with ordinary life’ (Fulford). Again we see Ostwald’s minimal reflections and speculation on Gould as aspergic being picked up by another writer, in this case another friend of Gould, and it is also Ostwald’s descriptions of Gould that lead Ioan James to include Gould as the last of his twenty examples of famous people who had ‘Asperger’s Syndrome.’ In Asperger’s

Syndrome and High Achievement: Some Very Remarkable People, James places Gould alongside Einstein, Newton, Wittgenstein, Alan Turing and Philip of Spain as historical examples of Asperger’s. The website Neurodiversity.com also offers a page on Gould with links to a series of articles that discuss the possibility of Gould having asperger

(Seidel).

In reflecting on the image of Gould as aspergic, it is worth noting that Maloney,

James and Fulford pickup on Ostwald’s minimal, less than one page, suggestion of asperger and in the case of James and Maloney, construct their own more expansive stories from this singular moment. The danger here is that it becomes Ostwald’s minimal

138 thought experiment of Gould as having asperger, and not the full breadth of the biographical writing, that is the source of the idea that Gould’s otherness was asperger.30

The most recent book length biography to be published on Gould is Mark

Kingwell’s 2009 work that appeared in Penguin’s Extraordinary Canadians series.

Kingwell’s book pivots around two ideas. Firstly an idea expressed by Giorgio Agamben about Gould and his decision to give up playing concerts, which Agamben relates to

Herman Melville’s short story ‘Bartleby the Scrivener,’ and Bartleby’s utterance ‘I would prefer not to’ (Melville para. 34; Kingwell 75; Agamben 36). Kingwell notes the illogic of both Gould and Bartleby’s positions that for a pianist to stop performing concerts matches the illogic of a Scrivener refusing to scribe. In this sense Gould’s withdrawal and wish not to continue performing concerts becomes an equivalent ‘prefer not to’ moment and something of an illogical position for a classical pianist but one always filled with a

‘suspended potentiality’ to play (Kingwell 76). Agamben makes the point that Gould is so defined by his position as piano player that even when he refuses to play, the potential to play, and the refusal, constitute a form of performance, a form of piano playing. For

Agamben, ‘he plays, so to speak, with his potential not to play,’ and is therefore still

30 I will come to a more detailed discussion of the focus group’s responses to watching 32 Short Films About Glenn Gould later in this Chapter, but it is worth noting that members of the focus group were aware of this idea of retrospective diagnosis of the famous with asperger and other intellectual or learning disabilities. Janet noted that recent biographical accounts of the Apple founder Steve Jobs had suggested that he was on the autism spectrum. Having recently read biographies on both Einstein and Jobs she offered the idea that like Gould, they also ‘had this genius way beyond but then they were so disconnected.’ Brian also noted the habit of connecting famous people and historical characters with the autism spectrum, but also dyslexia, ADHD and being gay. He offered the idea that one benefit of this biographical diagnosing is the support it offers those who receive a formal diagnosis; of the thought ‘so you are in good company,’ but he also noted that this was not a problem free idea. In the focus group’s discussion of other retrospective biographical accounts of asperger and in other forms of speculative labelling, the group’s conversation points to the idea that the retrospective labelling of Gould is not a single exceptional account, but is part of cultural pattern or habit of speculation over the underlying causes of exceptionality.

139 defined by his position as piano player, as Bartleby is by his status as a scrivener (36).

Kingwell suggests that this withdrawal is not related to a philosophical wish to focus on other projects, but that this amounts to an excuse for a pianist who could no longer face performing for psychological reasons (85). Here then we have the enigma of choice: that an apparent choice not to continue may in practice be an inability to continue.

The ‘prefer not to’ expressed by both Gould and Bartleby may in reality be the impossibility of imagining continuing this particular performance of self as scribe or pianist. Though Kingwell does not address this point specifically, one could look to this

‘prefer not’ to be an aspect of Gould’s increasing psychological trauma and a product of his own increasing awareness of his mannerisms and awkwardness in public. The question I would ask at this point is, how does a diagnosis of asperger insert into this moment? Is a label of asperger a more comfortable or currently useful explanation of

Gould, than one of psychological illness? Kingwell clearly dismisses the asperger diagnosis, making the point, ‘it is not possible now to confirm the suspicion that Gould had Aspergers syndrome’ (105). Kingwell also makes the point that this process of retrospective diagnosis of the famous is ‘a diverting sort of game to play with the idea of eccentric genius’ (106). Kingwell raises the idea of retrospective labelling and Gould’s potential to be on the spectrum in the readers mind only to dismiss it; however, it is also worth noting that Stuart Murray in his book Representing Autism suggests that ‘Bartleby the Scrivener’ is the first recognizable instance of literary autistic presence (51). And I would suggest that this idea of ‘prefer not’ mirrors Gould’s own comment on his childhood reported by Roberts that he ‘could only’ play the piano, as another potential asperger or psychological illness/overbearing mother diagnostic moment (39). Here we

140 can explain or understand both the childhood ‘could only’ play piano and the later refusal to perform as an aspect of asperger or as psychological condition, but it is also worth asking whether either of these captures all the possible reasons for Gould’s decision, and whether biology and life experience should necessarily sit in opposition to each other.

There is also the possible explanation that Gould’s underlying neurology placed in his own unique context led to psychological challenges that in turn led to his wish to stop performing in public.

Kingwell’s second pivot is something of a postmodern musing on the nature of biography and how it can capture and create the sense of any subject. He offers the idea that ‘the various Goulds began to proliferate and multiply even before the fact of death brought an end to his performance of self’ (175). What emerges here is something of a post-diagnosis problem for biography that points back to Maloney’s ‘aspi’ assertions. As

I noted above the Gould constructed by Maloney through the lens of asperger is a Gould made up too exclusively of biology: Kingwell’s proliferation of Gould’s is captured by one diagnostic explanation.

Despite all the potential problems of Maloney’s and others’ implementation of

Gould as aspergic, the very idea of his retrospective diagnosis in this current cultural moment of biological labelling and awareness is of interest from a disability studies perspective. Firstly the debate that forms among Kingwell and Bazzana, and Maloney, between the ideas of Gould as suffering mental illness or ‘enjoying’ biological diversity, points to the explosion of neurological diagnosis within mental health practice in the last thirty years, as neurological and biological explanations have come to replace more narrative, psychoanalytic, experience based explanations for behaviour. Shelley Reuter

141 suggests that the 1980 release of the Diagnostic and Statistical Manual of Mental

Disorders (DSM-III) ‘coincided with the marginalization of psychoanalysis from mainstream psychiatry,’ and in light of the neurological focus of the DSM-IV (1994), the idea of Gould as not ill but ‘suffering’ a neurological deficit mirrors Reuter’s argument that ‘this transformation to biological neo-positivism has had important sociological implications: first the exclusion of psychoanalysis has also meant the exclusion of overtly social explanations for mental disease’ (253). Here we see how the various biographies of

Gould map, and respond to, their contemporary understandings of mental health and disability.

In this sense the shifting of the biographical construction of Gould from sick to neurologically impaired matches a shift within the mental health profession and popular understandings of otherness. In this, Maloney’s thesis becomes an example of a general cultural trend and mapping of a history, particularly if we contrast Maloney to Ostwald who also notes the asperger potential, but does not see it as fundamental explanation. It also points to some of the potential dangers of this labelling process, to cite Richard

Ingram’s use of Deleuze and Guattari, of how the labelling acts as an ‘apparatus of capture’ that defines not only what is normal but also how we must act if we are to fit a label of otherness (240). Ingram goes on to suggest that the DSM ‘preaches a script into which we are invited to write ourselves, or those we know as actors’ (241). This in many ways sounds exactly like the process that Gould has undergone in the hands of Maloney.

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Douglas Coupland on McLuhan and the traps of biography

The Canadian author, Douglas Coupland enters this same debate in his biography of the Canadian academic Marshall McLuhan, but he neither resists the diagnostic trend in the way that Kingwell does, nor entirely follows Maloney’s neurological determinism. In a brief biography of McLuhan that is also part of Penguin’s Extraordinary Canadian’s series Coupland discusses the possibility of McLuhan’s neurological differences; he suggests: ‘This is not to say that Marshall was autistic, or even a high-functioning

Asperger… But if he had any specific psychopathology, that would be the direction in which to look’ (66). Coupland also enters the debate on the balance between biological and experiential explanations of behaviour and ability:

Why mention this medical information? To establish from the get-go that Marshall was not merely different but very different, and it wasn’t simply in the way he thought; rather it was because of the biological mechanisms that made and allowed him to think what he thought. When looking at the millions of factors that need to be in place to create an identity, one obviously can’t ignore nurture, but as time passes and our cultural perceptions of personality become more medicalized, it behooves us to study Marshall’s body as well as his family and origins. (35-36) While acknowledging a cultural shift, Coupland nonetheless appears to strongly buy into the idea that the medical, the biological and diagnostic are the key explanations of both

McLuhan’s ideas and his eccentricity. However, later in the biography he goes on to complicate this idea of biological ascendancy by potentially drawing all human experience onto the spectrum. In relating the details of some of McLuhan’s eccentricities, noting that ‘he was the epitome of the absent-minded professor’ and that he would often return to ‘Planet Marshall,’ Coupland suggests that ‘perhaps this disassociation, along

143 with others of Marshall’s traits, should be placed on an autistic spectrum’ (64). Note that

Coupland carefully places McLuhan’s traits, rather than his personage on the autistic spectrum, and Coupland goes on to offer us a somewhat emancipatory interpretation of autism as a whole: ‘This can actually be said of anyone on earth. Autism is no longer a binary diagnosis but is, rather, a spectral condition within which everyone exists, as they do within the depressive and schizophrenic spectrums’ (64). In this Coupland defines autism not as biological disability or deficit, but as a set of traits or behaviours that we are all vulnerable to, but emerge more strongly in certain sections of the population.

Coupland also suggests that the process of searching for the neurological/biological basis of both eccentricity and genius raises some interesting questions for the role of biography:

Perhaps this opens the door to what may be one future for the biography of those who create new ideas, a form in which the biographer mixes historical circumstances with forensic medical diagnosis to create what might be called a pathography – an attempt to map a subject’s brain functions and to chart the way they create what we call the self. (67) Though he offers some resistance to simplistic biological explanations of difference,

Coupland struggles to resist the biological trend fully. Coupland’s reflections on the nature of biography take us back to Ian Hacking’s arguments about the contemporary experience of biography being part of the making of the language of autism. However,

Hacking’s focus is on autobiographies written by autistic individuals and on parental accounts of autistic children as tools for the creation of the language of autism and an opening up of access to the consciousness of autistic experience. Hacking asks ‘are the autobiographies and other stories less telling what it is like to be autistic than constituting it, both for those who inhabit the autistic spectrum, and for those who do not?’ (“Autistic

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Autobiography” 1467). The question is, do retrospective biographical accounts of famous people as autistic or asperger, the process of creating autistic ‘pathography,’ add to the language set of autism? Does the level of remove from first-hand experience that is inevitably present in a text that reports on a life that is now over, still allow for these biographies to add to contemporary understandings of autism, or do they narrow ideas into an image of autism as flawed genius?

Clearly the flawed genius problem emerges as a trap in biography. No one is writing historical accounts of potentially aspergic individuals who made no noticeable historical contribution; they are simply unknown people, and so retrospective diagnosis is inevitably only being applied to those who stand out in some significant way. This inevitably takes us towards ideas of genius or notoriety and leaves the image of autism and aspergers uncomfortably linked to extraordinary gift and a combination of genius and tragedy. As Northrop Frye notes, “Genius’ is as much, and as essentially, a matter of social context as it is of individual character’ (215). However, as Brian noted in the focus group conversation, with his ‘so you’re in good company’ idea, there may be something in the idea of historical figures as role models that offers support to individuals facing formal diagnosis, though this idea comes with the caveat of unreasonable expectations that all those who get a diagnosis on the autism spectrum should display some form of genius, and the dangerous argument that for an autistic person to have a legitimate place in society their autism needs to be compensated by an exceptional gift.

There is also the potential of retrospective biography raising questions about the limits of both autism spectrum disorder and normal life experiences as Coupland does in his suggestion of McLuhan having autistic traits that we are all vulnerable to. In this

145 approach biography might help close the gap between autistic and non-autistic consciousness and experience. These ideas may be opened up further when we start to read biographies of historically significant figures who had received a formal diagnosis of autism or aspergers in their lifetimes. We will, however probably have to wait a number of years for these texts to emerge.31

From a disability studies perspective, specifically the idea of the social construction of disability, both the neurological and the psychoanalytic explanations of Gould are somewhat problematic, as they both make assumptions about what constitutes normal and deviant or abnormal behaviours. There is also the further theoretical question of whether

Gould can be labelled or diagnosed as aspergers since he died some twelve years before it became a diagnostic category. Although Hans Asperger produced his work in the 1940s, his findings did not gain the status of a formal diagnostic category of high functioning autism until the 1990s. In this theoretical sense, no one was looking for asperger as a specific collection of symptoms at any point in Gould’s life. Asperger or Asperger’s

Syndrome was not a diagnostic criteria against which he could be assessed or to which he could perform. In a Foucaudian sense, then, the bio-power to define Gould as aspergic did not exist; as Foucault tells us in Birth of the Clinic, ‘that which is not on the scale of the gaze falls outside the domain of possible knowledge’ (166).

These then are good academic reasons to reject the label of aspergers for Gould, but if we leave it in place for the moment, does Gould as aspergic help us understand the positives and negatives of biological labelling? Both Judy Singer and Tanya Titchkosky

31 We will also have to acknowledge that as asperger disappears from the next edition of the DSM, it may be seen in a historical sense as a very short lived diagnosis and may therefore create another set of speculations as to what other label would more accurately apply to those who were/are labelled asperger in their lifetime or historical context.

146 make similar disability embodiment claims when they positively inhabit their neurodiverse labels, in Titchkosky’s case it is dyslexia and in Singer’s, asperger. Singer makes the point that ‘I have been forced, willy-nilly to re-tell myself the story of my life through a new filter.... In doing so I have added neurological/biological perspectives to my former sociological/psychological/spiritual orientation’ (62). Titchkosky’s embracing of dyslexia comes from a rather more complex position; she suggests that ‘it is only from my present knowledge of dyslexia, as this interacts with cultural renderings and images of it, that I can speak of myself as dyslexic and in doing so, become such’ (Disability, Self and Society 35). For Titchkosky her entry into dyslexia is a complex mix of a socially constructed label and her own personal experience of that label’s relation to her embodiment. If we keep asperger alive in Gould for the moment, then we can see that playing with these biographical details allows us to explore the lived experiences of neurodiverse labelling. But we have to acknowledge two points, firstly Titchkosky has a luxury that Gould does not: she is still alive and is able to embrace or reject her categorizing. There is also the activist identity problem that Titchkosky struggles to escape, that the label/identity she is embracing is one constructed by a medical/educational system that much of disability studies is deeply uncomfortable with.

Barbara Schneider, writing in the context of schizophrenia, raises another potential problem with our culture of labels; she suggests that gaining a medical understanding of one’s otherness can lead to a negative re-understanding of experience, and she makes the point that ‘what was once a certain kind of experience and identity is now understood as another kind of experience and identity’ (132). Though diagnosis can be a successful self- realization, it can also be a self-pathologization. Clearly neither of these are now options

147 for Gould as he can no longer argue over the nature of his own experience, or act differently in light of an ASD diagnosis.

To raise the issue of Gould and asperger in the context of disability studies allows us to explore contemporary debates over neurodiversity and the debate between a medical metanarrative of biological difference, and a disability studies conception of social construction. However, the historical setting of the Gould story also allows us to ask questions about where these labels come from. To look at the biographical accounts of

Gould’s life also allows us to explore the idea that at some point in the relatively recent past there may have been the opportunity to accept various forms of difference without requiring a neurological label. Mitigating against this is the speculative question: if Gould had received a diagnosis of asperger in early life would this have led to a greater level of self comfort, for a wish to embrace an otherness that was not an aspect of personal failure? And would this have potentially prolonged his career or even life? Or inversely would he have been subject to forms of medical intervention that would have blunted his talent, or in a most extreme scenario, is there a point in the future when the Goulds of this world will not exist because the balance between their talent and their genetics slips in the direction of eugenics?

In these speculations over a historical subject, there is an acknowledgment of a debate that needs to take place in a contemporary context of diagnosis and labels and there is also a need to recognize the language shift. As autism and asperger become the language that speaks in the contemporary moment, this language gets remapped into historical contexts and captures historical subjects just as Vakirtzi and Bayliss warn us it captures the behaviour of labelled individuals in the present (2). The application of

148 autistic labels on historical figures may be an engaging speculation and be tactically useful for some aspects of the advocacy movement but I would suggest that its greatest interest lies in the ability of retrospective diagnosis to throw light onto contemporary habits of explaining different and potentially eccentric behaviours. This has its most notable value in looking at the history of Gould’s representation in biography as his image has shifted from psychologically disturbed to biologically different. In the hands of

Kingwell and Bazzana, the idea of autism or aspergers is cast as a rather un-tasteful image of disability and radical otherness, with Gould’s psychological challenges being a point of sympathetic fascination. In Maloney’s hands this position is reversed with the idea of psychological trauma being seen as a negative, narcissistic self-choice and asperger being the ‘get out of jail free card’ that explains all, and in the process takes Gould’s problems and talents out of his own hands.

A potentially more appropriate but complex argument could be made for breaking down the divide between the biological and experiential to acknowledge that, whatever

Gould or any one else’s biological start point is, they are also a product of disciplinary structures, education systems, and parental and social interventions. As philosopher and psychologist Stuart G. Shanker notes in ‘In Search of the Pathways that Lead to Mentally

Healthy Children,’ ‘children are not born with a developmental or psychological disorder: i.e. there is not an ‘ADHD’ or ‘autism gene’…. Rather, ADHD or autism are seen as complex down stream disorders, [that are] the result of initial neurogenetic and/or epigenetic factors that set the child on a developmental trajectory leading towards the disorder’ (23). Though many argue for a more straightforward genetic source for autism, even if we do ever identify it, the point we can take from Shanker is that the genetics will

149 not explain all a person is. Here is the coming together of biological start-point and life experience that looks something like Ostwald’s position on Gould, as Ostwald offers the possibility of an asperger biology for Gould, but does not frame his entire biographical reflection through this one neurogenetic moment. This might also work for Coupland’s idea that we are all on the spectrum, or all have the potential to be so.

The focus group’s viewing of 32 Short Films About Glenn Gould

A similar sense of biology and life experience emerges through the focus group’s watching of 32 Short Films About Glenn Gould. Though the film was made in 1993 just as Asperger’s Syndrome was becoming an official diagnostic category in the DSM, the film never mentions asperger or autism, but if we take the asperger suggestions from the biographies seriously, then this cinematic version of Gould becomes another location for debating the relationship between Gould and asperger, and the more general practice of retrospective diagnosis. I should also acknowledge that in the simple process of including the film in the focus group project, I imply a connection between Gould and some form of autism; I inevitably create an expectation, and a looking for, autistic traits. Schwarz also makes this connection when he includes 32 as the first film shown to his asperger viewing group in New England. Schwarz offers the following justification for starting his project with 32:

This film was the ideal starting point for the series, because it addresses the primary level of connection I was seeking to foster: identification of familiar experiences in a positive, holistic, non-devaluing light, in this case through the life story of a well-known fellow traveller. (260) Though we know Gould never received an official diagnosis and the film never

150 speculates about one, for Schwarz the possibility that Gould is not aspergic is never considered.

The film is structured as thirty-two vignettes that trace an approximate chronology of Gould’s life, mixing reconstructions of scenes of his life (with Colm Feore as Gould), and interviews with people who knew him, including Gould’s cousin Jessie Greig and the musician Yehudi Menuhin. Though the film includes scenes of Gould’s childhood, it opens with an adult Gould walking across a frozen Lake Simcoe and this moment became, for some members of the focus group, an initial indicator of Gould’s aloneness and isolation. This was particularly evident in participants’ journal entries on Gould: Brian offered the comment, ‘fragments (32) of a life feeling disconnected,’ Myria: ‘spoke to me about the aloneness that I imagine a person with autism may experience, and Mel wrote:

‘lived his art at the exclusion of the rest of the world.’ These journal comments create an image of focus group members reflecting on Gould’s life as one dedicated to his art and in many ways disconnected from other people. These comments reflect Payzant’s original thoughts on Gould as having an austere private life, but in the context of the autism viewing group they inevitably have diagnostic potential (Payzant xi). These images of

Gould walking on a frozen lake also point to repeating patterns in Canadian culture of northern and winter landscapes and a pioneering survivalism that Margaret Atwood captures in her text on Canadian literature, Survival: a Thematic Guide to Canadian

Literature. Atwood notes that literary images of Canada and the settler experience are tied up with ideas of surviving, not human encounters, but encounters with a harsh environment (30). Within the film, this image of survivalism and being in a wilderness environment is present but here wilderness is cast as an escape from urban and suburban

151 reality and contact with too many people.

In our actual discussion of the film, the idea of aloneness centred on a scene where

Gould proposes a ratio of time that one should spend alone, as opposed to in company of others. While standing on the frozen lake Simcoe, he offers an unseen journalist the following thoughts:

I don’t know what the effective ratio would be but I have always had the intuition that for every hour you spend with other human beings you need ‘X’ number alone. Now what that ‘X’ represents I don’t really know but whether it be two and seven-eighths or seven and two-eighths, but it’s a substantial ratio. In discussing this scene, I was prompted to raise the question: ‘so how much of a ratio of aloneness do we need before we get the label of asperger?,’ to which Janet responded with: ‘you could be labelled an introvert.’ Though Myria, in her journal offered the direct idea that Gould’s aloneness gives some insight into autistic experience, Janet also suggested the alternative non-diagnostic language of ‘introvert’ to describe the same sense of isolation. Here, then, the focus group is working within the same general debate, between un-diagnosed difference or eccentricity, and biological labelling that runs through the biographical constructions of Gould.

The group also identified other diagnostic moments both in our conversation and during the body paper exercise where we wrote responses to the film on an outline of a body shape before we sat down to our conversation. In this exercise where our work was anonymous, the idea of conducting as a form of stimming was written on his hands, and the question was asked, ‘what price no label?’ In our conversation the idea of Gould as asperger fundamentally centred around the idea of isolation, and there was some debate over the genuineness of the connections he made with people in this cinematic version of

152 his life. The film offers the idea that he made better connections with northern fishermen and technicians than with typical middle-class concert goers. In her journal entries Myria notes the conversation he has with a stage-hand just prior to his last concert performance, and wrote: ‘he absolutely had relationships’; Brian in contrast, in our conversation, suggests that this same back-stage moment is ‘gathering information for some thought he might be having himself,’ and Brian also made the following more general comments: ‘he wasn’t really interested in a dialogue with anyone and that would be a connection,’ and

‘my sense was Gould doesn’t really know how to play with people.’ This last comment prompted me to ask Brian directly if he thought Gould was aspergic, to which Brian answered in the affirmative. I further qualified this idea with the question, does the character we see in the film look aspergic, to which Brian again said yes. This is, of course, an important distinction as the film is a capturing of Gould’s life as seen by the filmmaker and not a direct experience of Gould himself.

One particular scene also emerged as a diagnostic marker for both the focus group and for Schwarz’s viewing group. In a scene in which Gould has a meal (‘the usual’ says the waitress), in a truck stop we have the sense of him picking up all the conversations around him that finally becomes an indistinguishable cacophony of noise. Schwarz notes:

Many viewers singled out “Truck Stop” the segment in which Gould (to the beautifully comic strains of Petula Clark singing “Downtown”) drives up-province to an Ontario truckers’ restaurant he regularly frequents, and sits at his table alone amid the crowd. Here the camera and microphone begin to meander, creating a fugue of faces and voices. The scene strongly resembles how many of us manage to stay afloat when awash in sensory input that exceeds our available bandwidth or capacity to process. (260-261)

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Janice, in our conversation, noted the idea of ‘no filters’ and Janet linked this to the experiences of her grandson (the child we had all worked with) who at times appears to get over-stimulated. This particular scene was also noted in Brian, Mel and Janice’s journals. The next scene in the film, ‘The Idea of North’ shows Gould putting together the radio program of the same name which is a deliberate overlapping of recorded voices in the contrapuntal style of Bach’s music, and the implication is taken that the truck stop experience is the inspiration for this creative project. Here the diagnostic moment becomes the image of creative brilliance that for Schwarz and the focus group is an expression of aspergic experience as the challenge of over-stimulation is reflected back to the world via creative expression. But this image of asperger as creative connecting could also be read as the artist simply taking inspiration from his environment.

In seeing the Gould in 32 Short Films About Glenn Gould as an image of asperger, the film becomes a lens through which to view the condition itself and in the focus group responses, asperger is expressed as experiences of isolation, over-stimulation, and notably in Gould a combination of creative brilliance and a challenging life. As I noted above it also led members of the group to speculate about the very idea of retrospective diagnosis of the brilliant and awkward, but members of the group also raised the question of what value a label has for our understanding of Gould and how might a label have had consequences for him during his lifetime? The group and the film significantly focused on the challenges faced by Gould, his mental health problems, his dependency on medication, and his increasing hypochondria. The group debated at length the different responses one could have to Gould as different (asperger) or sick (mentally ill) and whether a regime of biological diagnosis helps individuals negotiate their place in society

154 or not. Myria in her journal asked the question ‘does it matter if he had aspergers or not?’ and something of an answer comes in one of Brian’s comments in our conversation ‘well the one [mental illness] says to me fix it and the other one [asperger] says allow it to express itself. Fix the mental illness fix the schizophrenia.’ Here, then, we have a position of wanting to celebrate diversity and difference in human subjects, but not mistaking suffering and genuine mental illness as another form of diversity that leaves the sufferer isolated.

The film casts an image of Gould as progressively troubled by his anxiety and worries over his own health, and again we need to acknowledge that this is the film version of Gould, but the impression is of an individual struggling to make sense of his place in the world. One vignette simply lists all the medication he was taking and their potential side effects, illustrating both a sense of sad dependency and hypochondria. It is, then, tempting to ask, would a diagnosis of asperger or autism have helped Gould and others understand his path through the world? Would a diagnosis have usefully and compassionately intervened in his mental health issues? Janet in response to Brian’s comment that we offer space to difference and treatment for illness offered the thought that: ‘so then if that’s true we have moved forward if we are more accepting when we label somebody,’ to which I suggested that the asperger label was also in danger of pathologizing and marking out someone for simply being eccentric or different. Brian replied to this with the idea that ‘the label itself isn’t wrong, it’s the baggage we give to the label.’ The question I wish to ask at this point, but did not ask at the time, is: does this baggage include the basic diagnostic criteria set out in documents like the DSM? This returns to the concern about the very business of proliferating neurological diagnosis,

155 pathologizing and marking off smaller and smaller human differences. But if we hold onto the idea for the moment that Gould was at some level fundamentally different, then a diagnosis could have been a route to offering him understanding and compassion.

However, what the group acknowledged in this moment and is highlighted by Brian’s comment about baggage is that the label can be, but is not always, a source of compassion, a label can also be, as Barbara Schneider notes, a re-understanding of one’s own behaviour as medicalized, and the placing of a life in a diminished space (132).

Fundamentally, for the focus group, as Myria sensed in her journal, the label is not a complete explanation for the Gould represented in this film in the way that it is a complete explanation for Maloney as argued in his article. As the group acknowledged, a label on the spectrum is not a neat diagnosis that necessarily protects someone from mental health challenges, and in practice it can even allow for their mental health to be ignored in a focus on them as biological symptom. The critical issue is not the label, but how the labelled or non-labelled individual is responded to, and in this the label loses part of its significance. For the focus group the focus was ultimately not on diagnosing Gould, but on offering empathy to a far from easy life, and asking how individuals that face the same challenges as Gould can be supported in the present, and whether a label is a contribution to this support. In one sense this brings us back to the idea of ‘being in good company’ that Brian offered us. Clearly Gould’s life and the life of the Gould character in the film cannot now be changed, but while acknowledging the problems of expectations of genius, this process of retrospective diagnosis does allow those who have been labelled to make historical and productive identifications. As Schwarz suggests: ‘Yet recognizing kinship with historical figures is not just about finding role models; it also establishes a

156 history, a community-through-time, and permits the reclamation of a shared cultural heritage’ (261). In this thought, retrospective diagnosis appears to have the potential to support those diagnosed in the present.

Retrospective diagnosis and fiction

Having acknowledged the potential benefits, and also the challenges, of retrospective diagnosis for the asperger community, and illustrated the productive debates that can emerge in this speculation, there is, from an academic perspective, still much discomfort in the whole idea of retrospective diagnosis. This emerges both in the theoretical sense that Foucaudian ideas point to, of the imposition of a contemporary discursive context onto accounts of historical behaviour and of the imposition of contemporary language into a historical space. There is also the worrying sense of both simplifying the life of an individual and simplifying what autism is by assembling a disparate collection of traits and behaviours and matching them to a diagnosis. Strange and unusual lives get rather too neatly encapsulated in a simple term and ideas of what autism and asperger are, and are potentially narrowed by their filtering through biographical telling. Stuart Murray while making the point that ‘individuals with autism have always been part of the fabric of humanity’ (so challenging a purely discursive/constructionist view of autism), also suggests that:

the potential for fictionalization of the past is obvious here, and seems not to have any clear-cut boundaries. In fact, such speculation is probably best seen not as a desire to engage with autism in the historical record, but rather a peculiarly contemporary fascination with neurobehavioral differences in which we look for the condition everywhere. (Autism 39-40; 42-42)

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Benjamin Wallace also makes this point in his interview with Jian Ghomeshi on Q when he draws a distinction between asperger as medical condition and as cultural metaphor.

He suggests that creating retrospective diagnosis of the famous is an example of a ‘rose- coloured impulse’ that has created a ‘wave of revisionist psychopathology’ of the famous

(“Are You On It?” 6).

Wallace is fundamentally critical of this retrospective tactic and he includes in his criticism the application of autism diagnoses on fictional characters. What Wallace misses is the idea that the thought experiment of historical speculation is part of the mapping, making and debating of autism in the present. As Murray notes, ‘we are not wrong to want to find traces of such presence where we can because, in doing so, we might potentially fill in some of the gaps in our understanding’ (Autism 42). If nothing else, to find a trace of autism in the historical record calms the idea of autism as a new and emerging health crisis and speaks to Brian’s idea of creating fellow travellers.

One of the challenges is to draw the distinction between inappropriate and appropriate speculation and be aware of when historical context confuses the contemporary vision. Like Murray, Wallace notes that there has been speculation about

Melville’s Bartleby the Scrivener as autistic or asperger, but Bartleby is not the only fictional character to be diagnosed (Representing Autism 50 “Are You On It” 6). A

Vancouver based speech therapist, Phyllis Ferguson Bottomer, has written a book that suggests that Jane Austen’s Pride and Prejudice is the home to numerous autistic characters. She states, ‘in this beloved novel she created eight characters on the autistic spectrum while, in her five other major works, another dozen at least make their appearance’ (15). Bottomer acknowledges that Austen could have no knowledge of what

158 she was doing, but she claims that the majority of the central character from Mr and Mrs

Bennet to Fitzwilliam Darcy himself are autistic (15). While carefully defining the diagnostic criteria for autism at the start of the book, she offers little acknowledgement of the historical context and social structures within which Austen’s characters operate and fails to see the role of class and social expectation in the awkwardness of their behaviour

(23-31).

Why then does the idea of ‘Bartleby the Scrivener’ as autistic offer some point of critical interest and Bottomer’s sweeping autistic brush in Pride and Prejudice feel uncomfortably reductive? Beyond Bottomer’s scale of diagnosis that casts the sense of an autistic world or culture in Austen’s work, Austen’s characters, though strange and characterful, ultimately fit within their social frame. Austen’s characters, though comic and at times awkward, find their place within their context, and typically they come to some form of resolution of their personal characters with the needs and expectations of their society. What Bottomer sees as autistic also looks like a world that works. From a twenty-first century position, Austen’s characters fit and make sense in the social and cultural context of a rigid British class structure with its highly defined rules and etiquette.

In this Austen’s work is social engagement and criticism of a certain aspect of British society via a series of character types, rather than an exploration of human otherness.

Bartleby on the other hand, never finds his place. In contrast to the Bennets, their daughters and Darcy, Bartleby never finds a resolution, does not fit his context and remains an enigmatic contrast. He remains a scrivener who does not scribe, who has no role or location in relation to the people around him and he remains isolated until his death. And it is in this that he is of interest as an autistic thought experiment. He casts the

159 image of a true outsider not understood by others or understanding his surroundings and in this we get the powerful image of a condition that looks something like autism or asperger lodged in a fictional character that feels like a deliberate study of otherness by

Melville. Bartleby points to a time when we did not have the language of autism to describe a particular image of otherness and opens up questions about how a Bartleby would be received in the present. In this Bartleby is a more useful and thoughtful autism speculation.

Another potentially interesting case of retrospective diagnosis or misdiagnosis is the character of Joan Canary in Barbara Gowdy’s Mister Sandman: A Novel. Stuart Murray offers the following: ‘Joan Canary, an echolalic girl with autism, is a savant pianist whose differences allows her to explore tensions in her family’ (Representing Autism 97). But

Gowdy’s story makes clear that Joan was dropped on her head at birth and is also possibly the reincarnation of a recently deceased resident of a nursing home, and that for her family these are the causes of her differences and gifts (see Gowdy 1, 2, 24, 61). Here, then, Murray appears to be reading Joan’s character as autistic without addressing the potential narrative causes of her unusual behaviour. What then are we to make of the idea that Joan achieves a form of autistic diagnosis in critical reflection because she displays some popular autistic traits, notably in a Canadian context, prodigious piano playing skills

(at one point in the novel she even plays the Goldberg Variations and spends much of her time blending sound-scapes as Gould did in his later career)? It is possible to speculate that Gowdy based Joan’s character on some descriptions of autism and it is possible to

160 argue that Joan could be described as functionally autistic as a consequence of brain damage, but Murray does not offer this last point.32

Critically Gowdy creates in Joan a character that can be interpreted as autistic in this cultural moment where autism is used liberally to capture otherness, notably otherness associated with genius. Further, in contrast to much autistic representation in fiction we do, at times, view the world through Joan’s consciousness. Joan offers images of the world as vibrations and talks of sounds that soothe and sounds that hurt, and of the role of colour in her understanding of the world (178, 180). Though again there is the awkward conflation with genius that pursues autistic biography and fiction, there is much to admire in Gowdy’s un-judgmental capturing of intellectual disability and difference and the acceptance by Joan’s family of her disabilities. Whether Joan is intended to be seen as autistic or not, her representation and speculation about her autistic status is clearly more useful than Bottomer’s sweeping approach to Austen, as Gowdy’s novel, like the story of Bartleby is clearly engaged in raising questions about how difference is understood and how a culture responds to otherness.

The awkward and gifted: the conflation of autism with genius

The retrospective diagnosis of Gould, McLuhan and others indicates that the current language that is available to us to describe the awkward and gifted is that of asperger or high functioning autism, and the language for the greater sense of alienation that is illustrated by Bartleby is probably that of autism. This matches the idea put forward by

32 Murray is not alone in describing Joan as autistic. The Wikipedia page for Barbara Gowdy offers: ‘Mister Sandman revolves around the family of Joan, a young autistic girl,’ and in a review of another Gowdy book in the Lawrence Journal-World newspaper David Crary notes that Joan is an ‘autistic dwarf’ (“Barbara Gowdy”; Crary).

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Hacking, of the difference between thick and thin lives, between lives that bridge the gap to the neurotypical and those that do not (see “Autistic Autobiography” 1469). In this respect the business of retrospective diagnosis may do no great service to the historical figure, but it does say something interesting about the here and now. It points to how new ways of thinking have produced new labels and intersections that enter the broad cultural space as ways of explaining people. The question to be asked about the retrospective process is: just how is it capturing these people and how does this reflect or impact on present populations living with a diagnosis? Beyond the positive image of ‘fellow traveller’ the worry in the image of asperger created via Gould, McLuhan and the broad association with genius is the very expectation that this sets up. Asperger is cast as a successful but flawed or even tragically interesting life, but only if it has the ‘thank god’ discovery of brilliance that saves the image from tragedy. Autism, in its classic sense, by contrast, is left as tragedy and contemporary fear. As the idea of asperger potentially disappears from the official diagnostic documents and likely diminishes in its public profile, one can speculate that this same distinction will emerge between classic autism and high-functioning autism (an autism that can conform sufficiently to neurotypical expectations). And in the conflation of high-functioning with a sense of special gift, rather than acquisition of normative skills such as typical language use that is already part of the popular culture of autism, a potential new place for the expectation of brilliance emerges.

This conflation of ASD with genius and the contrasting of disability with exceptional ability goes all the way back to Kanner’s original observations and there is no question that some autistic people have some remarkable skills. But the idea of genius as

162 compensation for, and contrast to, disability sets up a number of problems (see Biklen 31,

32). Firstly, as I have already noted, it sets up potentially unreasonable expectations that oppress both autistic individuals and their parents and carers. Secondly, it promotes the uncomfortable idea that a disabled or impaired life, or a life of intellectual and cognitive otherness is only legitimate if accompanied by compensatory gift. In an interview with

Andrew Solomon for his book Far From the Tree, Ari Ne’eman notes: ‘but it would be a deep mistake to say that people should have their differences respected only if they can deliver some special talent’ (qtd. in Solomon 278). The idea of autism as always bound to pockets of genius keeps in place the image of autism as something thoroughly alien, but also possessing some special use value for the non-autistic culture. The savant image also keeps the idea of disability, of the disabled aspect of the autistic individual, fixed in a place of deficit and tragedy.

This image of disability contrasted with talent also creates the image of autism as some form of contemporary freak show. Rosemarie Garland-Thomson introduces the image of the freak show as the place where otherness and disability was exhibited for public wonder in her book Extraordinary Bodies. She makes the point that the nineteenth and early twentieth-century freak shows that typically travelled with the circus were a display of otherness that fundamentally ‘assured the onlookers that they indeed were normal’ (17). In applying this image of observing radical otherness as reassurance, we return to the cinematic version of autism as aberrance and gift I discussed in Chapter Two with Rain Man and Mercury Rising. These fictional images of savantism cast the savant gift as extraordinary contrast to the disabled body that contains them and the exceptionality of the gift becomes the point of focus beyond the person. This would also

163 appear to be a risk with McLuhan and Gould as we focus on their talent and challenges.

This problematic is also present in contemporary images of autistic and aspergic subjects. In 2009 Television Ontario (TVO) broadcast a series called ‘Mysteries of the

Mind’ that included a documentary on the British artist Stephen Wiltshire called The

Human Camera and a film about the math genius Daniel Tammet called Brainman (Nye).

Both these one-hour documentaries focused on the relationship between autism and isolated pockets of genius or savantism. The series was repeated in July 2010. Wiltshire and his remarkable drawing ability is also a subject in Oliver Sacks’ An Anthropologist on

Mars, and Wiltshire was first featured in a television documentary as a child in 1987

(Sacks 203). Sacks reports that Wiltshire ‘showed some delay in the motor landmarks of infant life’ and that ‘he was virtually mute,’ but that one of his teachers Chris Marris (no relative) took an interest in the quality of Wiltshire’s drawing and believed that Wiltshire had ‘an innate grasp of, drawing techniques and perspective’ (Sacks 196-197, 199). Here, then, is the image of a child whose disability symptoms match well a diagnosis of classic autism, but who can also draw at a level of accuracy and detail not common in any population.

In Sacks’s hands this is the story of a child who finds expression and personal growth through drawing, and the dedicated, supportive work of an observant teacher. In the hands of the documentary makers this image shifts to a focus on the exceptional talent, and the individual and their journey starts to get lost. The Human Camera opens with the following: Stephen was ‘locked in an autistic world unable to speak, but his whole life changed when he discovered drawing. Stephen is a savant one of only one-hundred individuals in the world recognized for having extraordinary talent that emerges from

164 autism.’ In this moment that reminds us of Maloney (though a deal more sensationalist), autism and strangeness of the gift not only comes front and centre, but autism not

Wiltshire is given credit for his abilities. Though it is reasonable to rationalize that some aspect of Wiltshire’s autism is also part of his talent, and Sacks acknowledges this, in the

Human Camera it is the contrast between ability and disability, attributed to autism that comes front and centre. In this sensationalist moment Wiltshire is put forward as exceptionality to be amazed and wondered at; in this the documentary becomes a modern form of the freak show (Sacks 225). The representation of Tammet follows similar lines with a voice at the start of the documentary pronouncing that ‘I’ve never encountered anyone like this’ (Brainman). As Garland-Thomson points out in relation to the freak shows of the past, ‘scrupulously described, interpreted, and displayed, the bodies of the severely congenitally disabled have always functioned as icons upon which people discharge their anxieties, convictions and fantasies’ (Extraordinary Bodies 56). In these documentaries both the anxiety of difference and the contemporary awareness of autism, and the fantasy of extraordinary talent appear to merge. Not only is autism reified as contrast between talent and dependency, but, in a pattern that links back to Adorno and

Horkheimer’s early reflections on mass media in ‘The Culture Industry: Enlightenment as

Mass Deception,’ otherness only becomes of interest in its most extreme form. As they noted, ‘the most intimate reactions of human beings have become so entirely reified, even to themselves, that the idea of anything peculiar to them survives only in extreme abstraction’ (136). Here a mass media image of autism is one that dwells on apparently impossible genius contrasted to helpless disability and on a story that is capable of

165 sensationalism and shock, with other more subtle images of autism remaining of little interest.

A similar tendency can be seen in the media coverage of the recently published biography Carly’s Voice. This book documents the emergence into written expression of a Toronto teenager who was diagnosed with autism aged two (Fleischmann 22). Carly does not use spoken language, but communicates by typing instructions, responses and ideas into a computer.33 The book is fundamentally authored by Carly’s father Arthur

Fleischmann, and is often a reflection on his frustrations and sadness at his daughter’s disability. When we do get access to Carly’s own ideas, however, the book becomes a description of her finding a voice and productive outlet via typed communication.

Through Carly’s own thoughts, there emerges a narrative that illustrates the falseness of the assumption that a lack of verbal communication skills indicates a lack of intellectual ability. This follows the advocacy argument that just because someone doesn’t speak doesn’t mean they have nothing to say. However, in media coverage of the publishing of the book this subtlety is lost as autism is cast as intellectual disability and Carly’s achievements are represented as an overcoming of autism rather than a challenge to received opinions on what autism is, and what it means not to speak. Peter Mansbridge on

CBC television’s The National introduces a segment on the book with: ‘being the co- author of a book aged seventeen is remarkable for anyone, for a girl with severe autism it is downright extraordinary’ (Carly’s Voice). Though Mansbridge’s comment has some truth value, it creates an impression of autism as significant intellectual disability in a

33 Here I acknowledge the temptation to write this sentence differently to offer the following more typical, but more sensationalist language that inappropriately, but more typically starts by drawing attention to the perceived disability: Though unable to speak, Carly can still communicate by typing on a computer keyboard…

166 general sense, rather than acknowledging the main premise of Carly’s ideas in the book, that autism is at heart a challenge of communication method and at times awkward behaviours, not a lack of intellectual ability. Mansbridge points to the achievement, but in focusing on the moment of exceptional overcoming, misses the political point about challenging conventional images of autism and non-verbal communicators. Here is the danger noted by Savarese in the story of his son, that in focusing on Carly’s skills as exceptional, a more fundamental challenge to what non-verbal autism can be is missed. If

Carly and others who manage to communicate via writing technologies are seen as exceptions to autistic norms, then fundamental diagnostic categories that focus on deficit remain unchallenged (see Savarese xi-xii).

These media images of disability need to be critiqued with care; as I suggested in

Chapter Two when introducing the idea of the focus group, it is all too easy, from a disability studies perspective, to be critical of all popular representations of otherness and to point to the inevitable limitations and reductions in any given representation. As I write this, I wish for the input of the focus group on the Wilshire and Tammet documentaries to explore more explicitly their awkward focus on genius and how these two particular documentaries may draw public attention to autism, but at the price of sensationalizing it.

Critically, I don’t want to deny the value of telling stories of difference and human exceptionality. In the hands of Sacks, Wilshire’s story reads as a valuable study of the benefits of wise and aware support around those who are autistic and of Wiltshire’s emergence into his own creative expression. However, I think there is value in being critical of the sensationalizing tendency that can be seen in the Wiltshire and Tammet documentaries and is also present in media coverage of Carly’s Voice. The problem with

167 these versions of autism is that in their focus on difference, on the contrast of ability and disability, the idea of complex humanity is all too easily lost and a contemporary version of the freak show returns.

For Garland-Thomson, the image of the nineteenth-century freak show also points to another vision of disability that connects to the current place of autism and asperger.

Garland-Thomson makes the point that, ‘in the freak show the exhibited body became a text written in boldface to be deciphered according to the needs and desires of onlookers’

(Extraordinary Bodies 60). Here disability is put on display to explore visions of exceptionality, aberrance and contemporary concerns about difference and corruption. In the images of the autistic savant, we have the freak show-like picture of abilities that appear beyond human in combination with individuals who we are told do not connect to

‘our’ world. In this we get both a point of desire for the brilliance and fear of otherness.

For Garland-Thomson, ‘One explanation for the nineteenth-century freak show’s immense popularity could be that it provided a safe, ritualized opportunity for banal democrats to voyeuristically identify with nonconformity’ (Extraordinary Bodies 68).

Here is an image that translates into the present with the curiosity at the image of autism and aspergers as gift and deficit, and the cultural question of what would it be like to inhabit this otherness? In this moment, autism and its spectrum of differences becomes contemporary cultural fascination and metaphorical tool for exploring skills and technologies that are hard to understand. In this idea of ‘super-ability’ that is often connected to the technical and technological, autism becomes a tool for talking about broad social and cultural shifts in behaviour and life-style associated with technology. In the retrospective diagnosis of the brilliant (like Gould and McLuhan), in the

168 sensationalizing of ability and disability in contemporary documentary, and in the speculation as to the aspergic tendencies of people like Steve Jobs, we have images and metaphors for contemporary worries surrounding technological ascendancy and where control lies in modern societies.

Autism as contemporary metaphor

In acknowledging that retrospective diagnosis, if handled with care, as thought experiment, can be useful for developing the language of autism and creating places of acceptance for those currently diagnosed, what role does autism, aspergers and the spectrum have as cultural metaphor? In introducing Benjamin Wallace on Q, Jian

Ghomeshi suggests that autism and asperger has become ‘more than a medical condition, it has increasingly taken on a cultural resonance,’ and Wallace offers the idea that he

‘think[s] that people are confusing a metaphor with science’ (Ghomeshi). Wallace makes the point that the trend of applying a diagnosis of aspergers to personalities in the technology business like Steve Jobs and Mark Zuckerberg of Facebook fame, or even politicians we do not like, is a metaphor game (“Are You On It?” 1). He draws the distinction between genuine diagnosis that he associates with ‘untold hardship’34 and suffering and ‘a story about “Asperger’s,” “autism,” and “the spectrum” – our one-stop- shopping shorthand for the jerky husband, the socially inept plutocrat, the tactless boss, the child prodigy with no friends, the remorseless criminal. It’s about the words we deploy to describe some murky hybrid of egghead and aloof’ (1).

34 Here we see again the idea that a true diagnosis, as also implied by Baron-Cohen, must include suffering and in this Wallace is falling for a conventional disability trap that disability must always be a limited, and in Hacking’s terms, a thin life. The point to be made here is that a disabled life can be a happy and productive one, and that this is one of the roles that retrospective diagnosis can potentially perform; of the positive image of the fellow traveller.

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In both his New York Magazine article and in his interview with Ghomeshi,

Wallace focuses on the scatological application of labels to capture changes in social and cultural outlook. He offers: ‘the spectrum is our way of making sense of an upended social topography, a buckled landscape where nerd titans hold the high ground once occupied by square-jawed captains of industry’ and ‘it’s an Other-deriding tool to soothe our cultural anxiety about the ongoing power shift from humanists to technologists’ (2).

This matches Murray’s assertion that the application of autistic labels is part of a

‘contemporary fascination,’ and that autism as general metaphor or descriptor is particularly well suited to contemporary debates about technology and what technology is doing to society (Murray Autism 42). He suggests, ‘as a specific case in point, autism seems especially suited to this line of thinking because of its own associations with technology, particularly systems of computing or processing, and with objects’ (103).

Hacking explores these ideas further when he suggests that contemporary technology with its possibility of communication while in physical isolation hints towards an autistic social outlook. The abstract to his paper, ‘Autism Fiction: A Mirror of an

Internet Decade,’ ‘proposes that the public fascination with autistic texts mirrors the dominance of the Internet in daily life. Both such texts and the Internet itself represent radical changes in the horizon of communication’ (632). His arguments for this autistic outlook and its inherent connection to Internet technology reach their metaphorical height in his conclusion when he states ‘the Internet makes neurotypicals behave much more like autistic people than could have been imagined even a decade ago’ (653). Here Hacking connects to Wallace’s idea that texting is an autistic way of communicating (Ghomeshi).

If we hold these ideas together for a moment and return to the other example of

170 retrospective diagnosis, in Marshall McLuhan, the great twentieth-century predictor of communication technology, we have a prime early example of aspergic intellectual ascendancy. If we simplify Coupland’s complex debating of McLuhan and autism, into a straightforward retrospective diagnosis, we have in McLuhan the aspergic ‘father figure’ for Jobs and Zuckerberg; we have the foundational image of geek as other, as ‘on the spectrum’; and we have an aspergic McLuhan as the image of the first predictor of technocratic ascendancy. Coupland is, of course, not quite so crass with his discussion of

McLuhan. In his suggestion that the autism spectrum is the human spectrum Coupland makes space both for human variance, but also for the idea that contemporary culture is making us all look a little more like a definition of autism, or more likely asperger, than we might want to acknowledge. As I noted above, he points out that autism is ‘a spectral condition within which everyone exists’ (64).

Through Coupland’s image of the human spectrum being the autism spectrum, this contemporary Canadian writer offers images of autism pushing out from technological worlds into everyday experience, and these images are also reflected in his fiction.

Hacking reminds us that in Coupland’s 1995 novel Microserfs, the hero raises the theme that all techs are mildly autistic), and for Hacking, Jpod is the most autistic of novels at its very structure, dominated by self-absorbed characters: ‘The autism theme plays well in the middle two hundred pages of the novel, but fades away. The interest of the book is not the (by 2006) rather familiar thought that techs are autistic, but the fact that the book itself is a profoundly, and I am sure deliberately, autistic work’ (Autism Fiction 649-650). For

Hacking this is exploring contemporary fears of isolation and self-absorption which are familiar themes from most of Coupland’s novels, and reminds us of his 1998 novel

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Girlfriend in a Coma in which earth, dominated by a generation of aimless and self- centered individuals, faces Armageddon if a group of young friends cannot challenge this existing order. Coupland, then, emerges as both a debater of contemporary social issues and, via his biography of McLuhan, of autism as a tool of description for a technology impacted postmodern condition.35

Within Coupland’s work and its discussion by Hacking there emerges an ironic contrast between autism as metaphor, bound up with contemporary cultural fears of self- absorption and isolation, and the role that Hacking recognizes for technology in the lives of autistic and aspergic individuals. The very technology that creates the general pervasive worry of isolation is also the technology that allows many autistic people to communicate for the first time, and via the distancing effect of technology, form relationships without face-to-face contact (Autism Fiction 650). This autistic use of technology extends to the discovery of an autistic voice for those who cannot speak like

Carly Fleischmann and the members of the Bridges-Over-Barriers group.

From the point of view of metaphor, the image of all of us communicating in isolated forms, and therefore apparently looking more autistic, also indicates fears regarding shifting points of power in communication technologies and general social challenges in understanding how communication technologies work.36 As we become

35 The image of Coupland as a definer of the present in Canada, and contemporary fears about technologies, the environment and otherness, including autism will be looked at again in Chapter Four with his novel and Massey Lecture, Player One which contains a deliberate aspergic character Rachel, who notes: ‘she knows that she has always been a barely tolerated sore point among her neurotypical classmates’ (Player One 35). 36 It is worth noting at this juncture that concerns over the isolating nature of Internet technology could also be expressed about the world of biography and literature. The act of reading, typically seen as the mark of civilized cultural engagement, can also be perceived as an act of isolation and seen as the loss of the shared nature of orality and story telling. If a label of autism had emerged at the end of the 18th Century, as the novel form was establishing itself, one could speculate as to

172 aware of our dependence on these systems, there is a sense of alien and alternative forces being in control of social interaction and connection. In these metaphors and images of autism and technology, autism becomes the current focus for historical fears of technology with images of autistic technologists manipulating the neurotypical population to become more like them, and that a new isolated technological society will be re-made in their image.37 Northrop Frye writing in the 1970s notes that ‘Canadians seem well adjusted to the new world of technology and very efficient at handling it. Yet in the

Canadian imagination there are deep reservations to this world as an end of life itself’

(248). Here, then, in a specifically Canadian context, advances in technology contain within them a challenge to both established social practices and a national identity connected to agrarian pioneering.

McLuhan’s colleague at the University of Toronto, Harold Innis, engages with these ideas of technological influence in his seminal work the Bias of Communication. In this text, he sets out to illustrate that biases between the ease of distribution and integrity over time of different communication technologies influenced the nature of empires and societies. Inherent within his ideas is the image that new forms of communication technology have the ability to shift how a culture works, in effect, beyond the control of its members. He proposes that ‘the advantage of a new medium will become such as to lead to the emergence of a new civilization’ (34). In this idea of technological determinism, of a communication medium establishing a new order for society, the fears and metaphorical images of Wallace’s aspergic ‘techno-heroes’ finds its academic trace. the likely social concern about the autistic nature of reading, and in a sense this concern exists with the connotation of asperger with a certain professorial bookishness.

37 For further exploration of autism and aspergers being used as contemporary technology fear, see the discussion of Oryx and Crake in Chapter Four.

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Though Innis would have likely had no hint of the connection between his ideas and autism acting as something of a dystopian metaphor, drawing his ideas directly into this debate sets up a wonder at his possible responses to McLuhan’s potential diagnosis, and of an intellectual disability becoming a guiding image for a rapidly evolving cultural revolution.

The danger in all this metaphor building and academic speculation is one of reciprocity. Hacking may note that the debating of autism in the context of biography, fiction and the internet is the making of the language of autism and the application of

Innis’s ideas to autism as metaphor may be useful speculation, but how well does this language suit autistic people? Just as there is a danger that the retrospective diagnosis of the gifted and famous creates impossible expectations of autistic and aspergic individuals, so there is a danger that an association of ASD with technological brilliance also loads unwelcome expectations on the labelled. Further there is the danger of autism as understood in the public consciousness being intimately linked to technical competence that may not suit the experience of all autistic people. And not all those on the spectrum may wish to resolve their relationship to the world via technology. The question emerges, how are these technological linkages changing, not just how autistic images are affecting our picture of the world, but what we understand by autism, and what we expect from autistic people?

Autism and function

The title of this chapter is ‘(retro)diagnosis, biography and function’. I hope that the first two words make sense in terms of our consideration of the retrospective biographical

174 constructions of Gould, McLuhan and others as having autism or asperger, and the exploration of Canadian autism biographies. The idea of function however, may need a little explanation. The focus on genius in retrospective diagnosis connects to the idea of autism as technological metaphor and fear, but this searching for the productive genius in autism also raises questions about contemporary culture’s need to establish productive and functional roles for disabled subjects and how contemporary culture understands functionality. The idea of function, then, acts as an underlying theme in this chapter in the question: what function do these images and representations of autism have in contemporary Canada? This is to look at how these representations function in the making, remaking and capturing of what autism means, and of their role in the performance of autism in a Canadian cultural context. Having considered these questions and ideas, a further issue for autism as function, or the function of autism, emerges in the debate between functional and dysfunctional images of disabled subjects and how the functional and dysfunctional gets bound up with intellectual disability labelling. This is to note the connection between the apparent cultural need to keep searching for the

‘productive genius’ in autism and autism as a form of special skill, and broader ideas of identifying the functional and productive within all human subjects. Here I want to introduce the connection between the study of disability, and autism in particular, and the world of work and markets. This is to look at how expectations of work-life and financial contribution, of the whole world of liberal markets and capitalism, affect the language used to describe people as able or disabled.

Stephen Katz and Barbara L. Marshall argue that ideas of ‘functional’ and

‘dysfunctional’ are replacing the ‘normal’ and ‘pathological’ in contemporary Western

175 societies (54). They argue that the image of a normal, natural human subject is being augmented by cultural images and technologies, that

due in large part to the expanding political realm of genetic, reproductive, neurochemical, dietary, vascular and cognitive crisis, and the technological responses to them fostered by pharmacological, marketing and life-style interventions, this new relationship centres on biological life itself altering its terms of reference. (54) Here is the image of the human or posthuman subjects open to fundamental adaptation, and a moving beyond the idea of a desired natural ideal or normal, to a re-engineered adapted functionality. Katz and Marshall note this shift in relation to aging and the shift in focus from issues of normal aging and the consequences this has on the body and intellect, to expectations of maintaining functionality and of escaping or ‘overcoming chronology’

(62). In the context of mental health they note that ‘Miriam Fraser asks of Prozac, do such medications return the brain to ‘normal,’ or do they create another state of mutable

‘normal’ where the biological and the natural do not necessarily represent each other

(Fraser 68 qtd. Katz and Marshall 55). Here is the image of pharmacology, not as corrective to a damaged or impaired subject, but of pharmacology as a way of adapting a subject to a specific level of functionality, a functionality linked to contemporary culture and the needs of neo-liberal markets (68).

Emily Martin’s monograph on bipolar also makes this point with the commonly held idea that a certain level of mania, or manic energy, is seen as advantageous, if not essential within corporate life. Martin points to how concepts of normal have lost their essential link to some form of natural, as normal has become a set of elevated assets needed to succeed (41, 53). This is not only the rhetoric of needing one’s coffee to perform in work life, but it is also the raising of questions about pharmaceutical culture

176 being linked to enhancement and adaptation of human experience, rather than corrections of apparent deficits. These ideas appear to be of interest in the study of disability, in that the model of functional/dysfunctional potentially allows space for certain disability traits to be captured as advantages. Katz and Marshall’s work presents an image of the human subject being open to alteration to maintain or enhance function, but via Martin we see a picture of certain behaviours or traits being advantages in certain contemporary environments. This idea looks much like the picture of high-functioning autism and aspergers as ‘naturally’ adapted to contemporary technology focused cultures, much as the image of managed mania is seen as useful in the world of business that emerges in

Martin’s work. Here is the distinction between functional/dysfunctional as a tool to see the rhetoric of the ‘aspi tech’ as hyper-human functionality adapted to the postmodern

‘techno-world’; here too is the thick life of the magical maker and understander of the system. The dangerous bargain made in this moment is what happens when symptoms move from the desirable to the undesirable? At this point do we see the limits or end of social tolerance? Asperger and some versions of high-functioning autism operate as successful and tolerable lives via images of brilliance and metaphors of technological competence, but classic autism is set apart as suffering, captured exclusively via a medical deficit model.

Lennard Davis raises this point in Obsession when he notes that certain obsessions are productive and useful within a capitalist society and others are not, and that it is this divide between the useful and not useful that sets out the acceptable and unacceptable images of disability (See Introduction, but specifically 5-6). Here is the image of obsession that is useful remaining un-named or noted as a positive, contrasted to ideas of

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Obsessive Compulsive Disorder (OCD), where the nature of the obsession no longer looks productive. Robert McRuer makes this point in a more general sense when he suggests that contemporary neo-liberal capitalist societies pride themselves on their flexibility and tolerance towards others, that they make space for homosexuals, visible minorities, and the disabled in a way that past societies apparently have not, but for

McRuer this tolerance is offered on the terms of the neo-liberal market (13, 14, 194). This is limited space opened up for disabled and other marginalized people to contribute towards a capitalist hegemony and the evidence for this ‘mere toleration’ is that these marginal positions still remain as identity categories, while the able-bodied, heterosexual norm remains culturally neutral and un-stated as an identity (17, 31). All other subject positions are forced into a justification against an able-bodied utility that is bound up with normative processes of economic value and reproduction. The disabled and the crip in the widest sense of the word are tolerated as long as they are capable of producing or consuming surplus values, as long as they can be contributors to the market as producers or consumers.38

Debates about the functional/dysfunctional illustrates how the divide between able and disabled, normal and unwanted breaks around ideas of usefulness and productivity within the needs of a contemporary society. These needs are contingent and shifting, and they promote certain forms of difference or disability if they become functionally useful.

This idea of functional also extends to the discursive use of certain disability terms if they become useful for expressing fears, expectations and understandings of wider social shifts and phenomenon, as we see with autism as technological metaphor.

38 As I noted in Chapter One, one way for autistic children to become part of the economy is to be sources of funding for schools and therapy organizations.

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What, of course, is left out, is left on the wrong side of ‘mere toleration’ is, in the case of this work, the autistic subject that cannot ‘play along,’ or pass. The subject that is left in the place of ‘heart-break’ as Minister Aglukkaq put it, or suffering as autism is understood by Baron-Cohen, Fulford and others, is the autistic individual who does not display useful brilliance or technological competence. Non-capitalist functionality, or a lack of apparent market focused productivity, is cast as suffering and tragedy because its normative contribution cannot be determined, but in another sense the tragedy and suffering is reversed. As McRuer argues, the more clearly and obviously disabled (the most autistic in this case) are best positioned to challenge ‘mere toleration’ and point to the limited hospitality of contemporary societies that measure individuals in terms of their market contribution (see McRuer 31). From this disability studies and crip perspective, the ‘suffering’ is placed in the hands of the hegemony as the system cannot find a way to make use of, make sense of, or exploit the disabled subject; nor can it enmesh them as creator of surplus value. Here the classically autistic shows the limits of neo-liberal systems, of the apparent emancipation of disability and rights agendas, as the image of the apparent non-contributor is still cast as tragedy. In this moment, the more disabled the subject, the greater their critical power to point to these functional intolerances and lack of hospitality. As the Canadian journalist and author Ian Brown notes about his son

Walker, who does not have autism but has a rare genetic disorder that leaves him in need of full-time care, ‘the purpose of intellectual disabled people like Walker might be to free us from the stark emptiness of the survival of the fittest’ (234). Here the image of survival of the fittest is not so much that of biological survival (though it is this as well), but the survival of a place of non-productivity and non-conformity as legitimate subjects in a

179 post-industrial neo-liberal Canada. Clearly the ideas expressed here are something of a theoretical exploration and the challenge is that in thinking of autism in terms of a critique of contemporary capitalism, there is the danger of autistic people and the real experiences of autism being lost in the process of making an academic argument, much as something of autism is lost as it gets made into cultural, technological metaphor.

Contemporary autistic biography

So far in this chapter I have looked at autism through retrospective diagnosis and acknowledged its place as a metaphor for contemporary concerns about technology, but this is not the language of autism and conceptions of autism as they actually emerge from an autistic population. To find what Hacking sees as the new language of autism, then, I need to look for Canadian examples of the biographical making of autism that come directly from the autism community. The one example that I have acknowledged so far is

Carly’s Voice, which, with its 2012 publication date, is the latest Canadian incarnation of a genre that describes the emergence into language via typing of an autistic individual.

This book, published by Simon & Schuster, and receiving coverage by national broadcasters in Canada and the United States indicates something of the contemporary cultural status of autism. The book is clearly aimed at an international and notably an

American market with its American spelling, and its need to explain that Canada has a socialized healthcare system (137).

An earlier and lower-key book that traces a similar story is Gloria Pearson-Vasey and J. Kevin Vasey’s jointly authored book The Road Trip: Life With Autism. Born in

1969 Kevin Vasey is an autistic adult who makes a link to an earlier culture of autism.

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Gloria describes Kevin’s infancy in the first part of the book and recounts the experience of being accused of emotionally abusing her child, of, in effect, being drawn into a

Bettelheim vision of autism caused by detached parenting (20). The book also recounts a moment in 1985 when the ‘Ministry of Community and Social Services ‘stat[ed] that there was no identified population diagnosed by the classification “autistic adult”’ (80).

This last report illustrates the validity of the social construction argument that Hacking puts forward, that at times, even in the relatively recent past, various forms of autism as they are understood now, simply were not ways of describing people (“Kinds of People”

303). In 1985 autism was seen as a condition of childhood and one suspects that for those who could not pass as neurotypical in adulthood, it simply meant a life of un-labelled, or alternatively labelled, institutionalization.

The Road Trip traces Kevin’s and the family’s experience of trying various therapies and treatments to alleviate the symptoms of his autism and his eventual use of facilitated communication as a method for self-expression and relief from frustration and anger. Gloria notes that, ‘through the process of communicating, Kevin has grown calm.

Not only has he been able to express his fears and concerns, but he has come to believe in his own power to be a voice for others in society’ (40). Both Carly’s Voice and The Road

Trip follow a narrative of discovering intellectual expression and an inner voice via forms of specialist communication technology. These autistic experiences that looked, for much of their early lives, like the dismissed, dysfunctional ‘thin lives’ that Hacking describes as beyond autistic self expression, emerge as voices for the lived experience of being autistic in contemporary culture (see “Autistic Autobiography” 1469). Here, then, are clearly non-

181 metaphorical uses of technology to express something useful about, and from, the world of autism.

The books document the dedicated work of speech therapists and occupational and physical therapists in exploring methods and technologies that allowed both Carly and

Kevin to establish this connection between their autistic experience and a neurotypical world that expects primary communication in a spoken form. The teenaged Carly

Fleischmann’s first typed words were the highly pragmatic ‘Help Teeth Hurt,’ but she goes on to offer more reflective comments on the experience of being autistic (112). In explaining her habit of banging her head on the floor and walls she explains she does this to alleviate the pain she feels in her body; she notes, ‘most of the time I am having a power struggle with myself,’ and that ‘I act up because I feel so trapped inside myself. I don’t spell not because I don’t want to. I just can’t get myself to and I act out because I can’t explain or communicate what I need’ (302).39 In her own epilogue to the book she describes the over-stimulation of autism in much the same terms as the truck-stop scene from 32 Short Films About Glenn Gould, as experiencing an overwhelming cacophony of voices which she cannot easily filter (Fleischmann 362). Kevin Vasey also offers his own insights, notably on how a general public responds to differences in behaviour associated with autism: ‘when this book comes out it will surprise lots of people who are unaware of the prisons we are in, and think we are as we seem physically’ (98).

These narratives create an image of autism as a struggle to find the most appropriate support and therapy that leads to self-expression, and as a contrast between an active intellect and an unruly body that often does not want to cooperate. In these autistic

39 Here, for Carly ‘to spell’ does not imply correct spelling, but Carly refers to her process of writing on the computer as spelling.

182 biographical accounts, it is the unruly, at times uncooperative, body that is the source of disability at a very real physical level, but it is also this body that becomes disabling through neurotypical perceptions of this disorganized body and non-standard communication as being symptomatic of a diminished intellect and life.

Both the stories of Carly and Kevin recount the challenges of their unconventional and at times self-destructive behaviours, of the connection between discovering oneself to be othered and unable to express oneself in a way that makes sense to the world around.

For Kevin Vasey, this manifested itself as addiction to gas fumes, lighter fluid and eating cigarette butts. Gloria Vasey notes that Kevin ‘rummaged endlessly through drawers and cupboards for things to sniff…. At twelve, he had become hopelessly addicted to solvent sniffing’ (71). For Carly the symptoms were those of head banging and sleeplessness.

There is in both these narratives a sense that these behaviours are a response to the trauma of autistic self-awareness, of the realization that comes with the first moves of self- expression that one is different, and in the eyes of the wider world diminished. This is the image of the limiting possibilities not contained within the individual, but mapped out via experiences of educational and institutional structures that in both books appear to fail the autistic individual. Both the Fleischman and Vasey families struggled in very different autistic generations to find appropriate support and care for their children.

In these stories technology offers the ‘miracle’ of autistic expression where it was once thought not to exist, but it also opens a door partially to self-understanding and to a world that is still not fully accessible for the autistic person. Ralph Savarese notes this contradiction and struggle in relation to his son when he suggests that in finding expression through facilitated communication, his son also re-found the experience of his

183 own traumatic and abusive early childhood, and the continuing gulf between his autistic consciousness and the neurotypical world that surrounded him. Savarese notes that his son’s ‘own narration of trauma propelled him into selfhood, such that the articulation of injury and the birth of the self into language were essentially one and the same’ (254).

Here then, is an image of the autistic individual showing an awareness not experienced by the neurotypical of the Lacanian move from the real to the symbolic, into a place of understanding one’s autistic difference from the majority world, via the discovery of language and the stimulus this provides to the intellect.40

Neither Carly’s Voice nor The Road Trip are without their problems. The parental voices in the books still dominate and both at times express uncomfortable desires for their children to be cured, or not to be who they are. Arthur Fleischmann describes autism as a thief and suggests that ‘the opportunities it stole from Carly were obvious’ (83). Here is the image of the expectation of normality pursuing the parent and their struggle to imagine a valid life for their own autistic child. As this narrative progresses, Arthur does start to celebrate Carly’s achievements and acknowledges that ‘not all that is broken needs to be fixed,’ but here we are still stuck with a disease rather than difference model of autism as he sees autism as something broken within his daughter (221). Similar comments emerge in The Road Trip, with Gloria at one point telling Kevin: ‘quit all that flicking and try to look normal’ (132).

There is, of course, a need for some realism in critiquing these parental stories, as

Stuart Murray points out, the advocacy position that states there is nothing disabling in autism ignores the challenges that families face in securing support for their children, and

40 Nick Pentzell makes a similar point to Savarese when he notes that the finding of language was also structuring of the intellect (104, 105). See also Chapter One.

184 finding ways of relating their parenting experiences to general social expectations of having ‘normal’ children (see Representing Autism 35). However, there is a sense that emerges from both these texts that the parental position struggles with acceptance, an acceptance that the autistic activist Jim Sinclair tells us is critical for both autistic parents and children. In a speech to a conference on autism in Toronto in 1993, Sinclair outlined how parents should move on from mourning the normal child they did not have (though he acknowledges this is a legitimate thing to mourn), to celebrating the difference that comes with autism. He makes the point that ‘there is no normal child hidden behind the autism. Autism is a way of being’; therefore he argues ‘you didn’t lose a child to autism.

You lost a child because the child you waited for never came into existence’ (2, 4).

These parental narratives of emergence are guides to other families on how they might address autism, but they are also clearly acts of catharsis for the parents in succeeding or failing to come to terms with their own autistic children. In this they form a particular aspect of the language of autism, of the journey from autism as parental tragedy to healing via the discovery of a voice in their child. Along the way they promote or dismiss various forms of therapy or intervention. Carly’s Voice becomes a strong advocate for ABA (Applied Behavioural Analysis), a particularly intense form of behavioural therapy for autism that the father sees as instrumental in his child’s progress.

Yet in the middle of the text he acknowledges that he was incapable of performing this therapy himself with his own child because the activities ‘are so fricken dull’ (84).41 One wonders if these activities were so dull for the father, how much stimulus they provided for Carly whose intellect allows her to guide her own therapists in understanding her own

41 See Chapter Five for a detailed discussion of ABA and other forms of intervention with autism.

185 and other’s autistic behaviours. At one point Carly explains to her speech therapist that

‘stims are when we focus on a sensory output to block out sensory input’ and that this can be distinguished from actions that look similar but are a form of ‘audio filtering’ which are deliberate attempts to filter out extraneous sounds (183, 184). Here, then, is a truer language of autism emerging in Carly’s explanations of her own actions, rather than the parental descriptions of heroic efforts to heal their children.

Andrew Solomon notes that ‘the story of middle-class and affluent parenting of autistic children is an interminable saga of tilting at windmills,’ and both these texts are to some extent examples of this (258). Though clearly in these cases some of the ‘tilting’ worked as Carly and Kevin’s narratives are ones of autistic expression and document what appears to be successful autistic emergence. Both these texts make clear, however, that middle-class agency plays a key role in the construction of engaging and success narratives of autism. In The Road Trip, we learn of Gloria’s plans to establish a residential and educational centre for autistic adults called ‘St. Francis Advocates’ (76).

This would not only be a safe location for her own son, but also an expression of her

Franciscan faith that pervades the book.42 In Carly’s Voice, Arthur Fleischman pursues his own connections in the advertising industry to gain wide media coverage for his daughter’s newfound voice. Not only is Carly’s bat mitzvah speech read out by Ellen

DeGeneris, but Carly is also interviewed on CNN and The Larry King Show (213, 320).

This media coverage gives the impression that an essential aspect of the book’s journey to

42 This faith narrative increasingly dominates the progression of The Road Trip and reaches its peak with the somewhat medieval idea that the disabled suffer on earth, but once they reach heaven they are cured: ‘And after handicapped people die, they go to God and then they’re not handicapped anymore’ (109). The book also takes a traditional Catholic line on sex that comes close to denying the disabled their sexuality. Gloria Pearson-Vasey notes that they decided not to address issues of contraception and sexuality in the therapy programs they developed for St. Francis Advocates (109).

186 expression, and the validity of that expression, required the public acknowledgment of

Carly’s words being read by a media personality. Here the father’s coming to terms with autism works out through celebrity and media interest in his child.

The challenge in these empowered middle class narratives, particularly Carly’s

Voice, is that their exceptionality draws them away from the typical experience of autism.

If we see these texts as the making of the language of autism, it is one that is taking place in a very driven and enriched context. As I noted in discussing the CBC news item on

Carly’s Voice, the more exceptional the descriptions of the individual autistic journey, the less that particular journey constructs the useful and widely applicable language of autism.

These stories become ones of exception rather than broad representations of autistic experience. The performative power of these books is to draw their own specific experiences away from wider understanding of what autism is, and in this they limit how much they contribute to expanding broad social understandings of ASD. Ironically within

Arthur Fleischman’s ‘tragedy to (partial) acceptance’ narrative of his daughter, it is her own expressions of what autism is and how it challenges her, that is of real interest. Yet

Carly’s true autistic narrative within a narrative is in danger of being lost in the context of celebrity and paternal heroics.

The focus group’s responses to Bridges-Over-Barriers

I would argue that a more complete expression of autism, one not troubled and framed by parental influence can be found in the Bridges-Over-Barriers project that includes a short documentary film and a book, In Our Own Words. The film and book document the experiences of a group of autistic adults who meet regularly in Guelph,

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Ontario to communicate by typing, and other forms of personal and technological support.

The group includes Kevin Vasey. Andrew Bloomfield who edited In Our Own Words explains that guests and observers are welcome at meetings but that they must take a backseat to the conversation taking place between the group members. He reports that the

Bridges protocols ask that observers, ‘please be aware that, during our sessions, we the communicators lead the conversation and our parents and friends support, observe and record what we say’ (Bloomfield 11). Here, then, the autistic voice is dominant, not that of a care person or parent. The twenty minute documentary that accompanies the book was watched by the focus group as the last of our original five planned meetings, therefore most of my reflections here follow the responses and interests of the focus group.

The first challenge for the focus group, particularly for Janice was the very idea of facilitated communication or ‘supported typing’ as it is defined in the book and film (20).

Janice noted: ‘but some of the people did not appear to be really engaged in what they were typing… it makes we wonder if it really is their words because they didn’t seem to be connected.’ In the film we see each member of the group sitting around a large table accompanied by their support person who offers various forms of physical support to help the autistic participant press keys on a keyboard. Through an extensive discussion of this issue that included talking about the common practice of touch-typing we came to some consensus that what we witnessed in the film, though often a collection of unexpected and strange movements, was genuine communication by the group members. Brian offered the thought that ‘the charlatan aspect of it to me is less of an issue in this kind of very public forum and group that meets regularly.’

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Bloomfield addresses directly the issues of facilitated communication (FC) in the book. He notes that FC has had a controversial history associated with the suspicion that the support person is the one actually typing, actually communicating: “FC’ has been sadly misunderstood and even condemned by various kinds of people in authority. People who do not understand how we express ourselves may also dismiss it’ (20). Critically, here the very idea that within a non-verbal autistic body there may be a desire and ability to communicate in written language challenges some conventional diagnostic positions on autistic individuals. This idea also raises an uncomfortable image of the non-verbal being historically institutionalized and written-off as lacking any ability to communicate. In the light of the Vasey, Fleischman, Savarese and Pentzell stories this thought comes with a worrying sense that the sorts of behavioural problems associated with non-verbal autism that have led to institutionalization may have been the result not of some inherent dysfunction in autism, but of a desperate frustration at a failure to have acknowledged attempts by autistic individuals to find a form of communication with the non-autistic world. Part of the controversy of FC, then, sits in a place of challenge to scientific, medical hegemony of the potential of disabled individuals, and how medical culture has historically responded to them.

The second issue for the focus group, also raised by Janice, was of the traditional conception of autistic people as non-social and how this gathering challenged this. Again,

Brian offered some valuable insight with the comment: ‘it’s pretty hard for most of us to see social interaction as non-verbal,’ and Mel added: ‘there seemed to be a theme of almost like, and this is probably isn’t the right terminology, but the body like almost working against them. So like that also could be where we misinterpret their desire to be

189 social. Things like lack of eye contact and also body movement could… we might think it indicates one thing when it’s involuntary.’ The idea of the sociality of the group is also highlighted in the book as Bloomfield sets out the sorts of subjects they discuss and

Kevin Vasey challenges the conception that autistic people are indifferent to others when he notes that he is ‘affected by other people’s moods’ (Bloomfield 10-11, 41).

Here in the Bridges project, the language and ideas of autism are challenged and stretched by the witnessing of the simple un-sensational experiences of autistic life, but the conventions of autism, such as lack of social awareness, were also challenged in the focus group’s viewing and discussing of this material. As our own understandings of autism were tested and developed, Janice noted that ‘It does kind of make you think about how you perceive things right, doesn’t it and how the way our own views of the world; how we use that to decipher what’s going on in somebody else right, which may not be correct.’ This comment led Brian to the idea that: ‘we need to be instructed on how to communicate when the model of communication is different.’

In this idea of having to be ‘taught’ to communicate in non-normative ways, there is also the idea of learning to read the signs of autistic expression differently. In this idea of the non-autistic or neurotypical being in the place of learning, there is an image of a productive learning to be with autism, and there is also an argument to be hospitable and present with difference in general. Emerging, then, from the focus group’s viewing of the film is a wish to acknowledge the potential for a communication with autistic subjects and how this communication leads to a better understanding of how to be present with disability and unconventional communication methods in general.

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Overall the Bridges-Over-Barriers film was the most positively received representation of autism shown to the viewing group within the original five planned meetings. Though there were some very positive comments made about Loving

Lampposts in our sixth meeting, that I will come to in Chapter Five, the general sense of

Bridges, was that it, more than the other representations, allowed autistic people an unsensationalized voice. And in witnessing this coming together of an autistic community, there was much to celebrate. Brian noted that: ‘there’s something to me about the sheer volume of people in the group that feels lovely,’ and he went on to suggest that ‘I think that will enrich our field immensely to have that voice more loudly spoken.’ Brian also noted in his journal entry on this film that ‘the more I communicate the more I think.’ Not only do Brian’s comments illustrate how this film opened up channels for autistic communication and understanding, but his journal comment provides a link back to

Savarese and Pentzell’s ideas about how the finding of voice is also the finding of an intellect and greater opportunities to develop this intellect.

At the end of this film and our discussion of it, there remained a sense of a genuinely more productive image of autism, and in the Bridges project the achievements of the group members are presented in a less heroic and sensationalist way than they are in books like Carly’s Voice. Notably in Bridges there is a focus on the voice of the autistic participants rather than their parents, and a projection of a sense of the everyday normality of autistic communication rather than a miraculous emergence from silence.

There is of course some frustration in this thought, as the work of the Bridges project is self-published and will inevitably only reach a limited and likely already engaged

191 audience. This stands in contrast to Carly’s journey reflected predominantly through her father’s voice, which has been supported by the efforts of a major international publisher.

In reflecting on the Bridges project, but also on Carly’s Voice and The Road Trip, a particular autistic theme emerges, that of a group of people who move towards communication and expression via forms of computer technology, and in the process demonstrate that some of the conventional images of non-verbal autism are limited and incorrect. However, in reflecting on these narratives it should be noted that this is one image or capture of autism. These texts emerge from a particular aspect of the autism spectrum that communicates via typing, and it should therefore be no great surprise that this particular group is well represented in books about autistic experience. Those who are in a position to write are, in effect, naturally in a position to contribute to the written record of what autism is. This stands in contrast to those who communicate via sign language or even speak. For Kevin Vasey and Carly Fleischman, there is a stored record of their contribution, waiting for its release in book form. Here again there is a sense of

Harold Innis and his bias of communication, and of a bias within published representations of autism towards those who type, and of the over-determining of autism as a disability mitigated by forms of typed expression because of the written bias of contemporary society and digital records of their words. The danger, then, of these texts is that, much like the sensationalizing of savant skills and misunderstanding of high- functioning, these writing stories capture the complexity of the autistic spectrum into one location; their performative potential communicates a limited image of both what autism is and how its challenges should be addressed. Mitigating this, notably in the Bridges

192 project, is the rare presence of actual autistic individuals giving voice to their own sense of their lives and autism.

Conclusion

At the end of this chapter, an image emerges of autism, asperger and the language of the spectrum at play in debates over the history of difference and disability, the possibility and usefulness of its historical identification and the consequences of this retrospective process on those currently labelled. Retrospective diagnosis and the shifting discourses on Glenn Gould between mental illness and aspergic neurological exceptionality illustrates wider cultural changes in the perception of difference and disability. These biographical representations in their focus on the awkward and brilliant inevitably over-determine the connection between autism and genius, a connection that is further sedimented and sensationalized in contemporary documentaries on exceptional autistic individuals. Contrasting this at times frustrating image is the idea that retrospective diagnosis creates a historical thread that legitimizes the place of autism in the present and creates the sense of fellow travellers that was critically important to Brian in the focus group and was part of Schwartz’s justification for including 32 Short Films

About Glenn Gould in his viewing group.

I would also suggest that there is a logical path from the image of autistic or aspergic brilliance to the idea of autism as a contemporary metaphor for technological isolation and fears of a new Internet derived, socially isolated hegemony that is dependent on the metaphors of ‘geek’ ascendancy that Wallace discuses. Here autism is all too easily stretched to be a metaphor for both admiring and fearing the technology focus of

193 modern life, and the ability for remote communication to both reflect images of the autistic and hint at the spectrum nature of all of us, or at least our vulnerability to appearing anti-social as a consequence of Internet and cellular technologies. The need, then, to look for the place of genius in autism connects with the wish to save the image of autism from tragedy and ontological intolerability, and find its place of functionality, to find where it is useful, in a post-industrial, technology focused culture. But this functionality, though promoted as relief from perceived tragedy and useful as a place of market contribution, never quite escapes its status as fearful other.

In these metaphors and thought experiments autism becomes loaded with an excess of meaning that is in danger of overwhelming any sense that a clear voice of autism can emerge, and when we finally find the personal autobiographical reflections of autistic experience it is often, as seen in Carly’s Voice, captured as a form of exceptional overcoming of autism that diminishes its ability to represent autism in a more general sense. Much as the retrospective diagnosis of the famous is fascinated with the contrast between ability and disability, so contemporary biography and autobiography, though making some of the language of autism, also casts the individual story as the exception to the typical tragedy of the condition. Standing apart from this idea of exception is the

Bridges project that gently voices the ideas and experiences of a group of autistic individuals whose lives have been enhanced by the chance to express themselves with various forms of augmented communication technology and personal support. The

Bridges project, then, gives voice to the need to start with an engagement with autistic individuals and their own stories and in this engagement start to make better images of autism that emerge directly from the autistic community.

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Chapter Four - The Making of Autism in Canadian Fiction

The truth about stories is that that’s all we are. (Thomas King, The Truth About Stories 2)

The biographical accounts of autism discussed in Chapter Three are one form of ‘making’ autism. Both biography and debates over using an autism label to say something about culture are part of the representational framework of autism and asperger in Canada, and therefore they help to form public perceptions of ASD. Fiction offers another view, or another route into autism; fiction may not always claim the ‘truth values’ of biography, but in its cultural uptake it still forms part of the map of understanding autism. Hacking notes that alongside biography, novels like Mark Haddon’s The Curious Incident of the

Dog in the Nighttime have created, via fictional accounts, much of the public’s understanding of what autism is (Hacking “Autism Fiction” 645). Fictional representations may appear less bound to the details of diagnosis than biography, but in the construction of character and social response, and in the very presence of labelled characters, they provide part of the route to understanding autism in Canada. In this chapter, I will explore how Canadian fiction, ranging from the novels of established authors and a major feature film to minor self-published work, has created representations of autism and in the process formed part of the discourse and public understanding of the spectrum.

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As I discussed in Chapter Two, critical disability studies has always shown a particular interest in fictional images of disability, interpreting the fictional use of disabled characters as an indicator of wider societal attitudes towards disability and difference. As Norden claims, ‘movies demonstrate aspects of the society that produced them, but just as importantly society mirrors the values of its movies’ (x). I would also suggest, as Hacking notes, that in the case of autism, fiction as well as biography and news media go beyond reflecting social values and are a central part of making the public image of what autism is (see “Autistic autobiography” and “Autism Fiction”). If as

Thomas King suggests, ‘the truth about stories is that that’s all we are,’ then it behooves us to explore them in all their forms, fictional or not, and it behooves us to be open to the thoughts of others on both our own stories and the stories of others (2).

In the analysis of disabled representations, disability studies often looks to identify the negative portrayal of the disabled as Other and in place of deficit, or even as a short cut to simple negativity in a character (see Chapter Two), but as Titchkosky notes,

‘stories nonetheless have a very real power to transform the matter of normalcy into a place of wonder’ (“Disability Images” 80). As with the biographical constructions seen in

Chapter Three, in looking at fictional representations I hope to explore how these representations move between adding to the language of autism or reinforcing stereotypes, and where autism fiction may be challenging concepts of normalcy and disability. In this chapter this is a task that I, at times, take on with the contributions of the focus group, but

I should acknowledge here that the pragmatics of the focus group did not allow time for members to read novels. As such much of the critique that follows works from my own academic perspective, though this is a perspective guided in part by my work with the

196 group. Though the words and expressions of the focus group will only come in directly when I discuss the Canadian film Snow Cake, their ideas and debates inevitably influence my reflections on the novels and other texts discussed here.

Autism at the end of the world: Douglas Coupland’s Player One

I introduced Coupland as a biographer who engaged with autism and more specifically asperger in Chapter Three with his work on McLuhan. Here I want to look in more detail at his use of the spectrum in fiction. Hacking uses Coupland as his one significant Canadian example of a writer who constructs an autistic world in his work. In two separate journal articles, Hacking notes that Coupland himself claims a mild autistic diagnosis in interviews and has placed references to autism in a number of his novels

(“How We Have Been Learning” 511; “Autistic Fiction” 649). In his 1995 novel

Microserfs, Coupland’s central character suggests that all ‘techs’ are mildly autistic and similar speculation can be found amongst the technology workers in his 2006 novel jPod

(qtd. “Autism Fiction” 649). Hacking goes on to suggest that jPod is also an autistic text at a more fundamental level, that it is ‘a profoundly, and I am sure deliberately, autistic work’ (650). For Hacking this is autistic in the sense that the work is peopled by the self- absorbed and self-focused and he notes that this is very much a dictionary understanding of autism as isolation, rather than the more complex, expansive understanding that

Hacking himself believes is emerging through fiction and biography (650).

If we are to see this image of introspection and self-absorption as an autistic trait in

Coupland’s work, then it could be argued that it is present in almost all his fiction. As I noted in Chapter Three, his 1998 novel Girlfriend in a Coma could be seen as a call to

197 shake off this autistic tendency to self-focus. In the key plot move of the novel a representative of God gives the central characters a second chance to live their lives over if only they will chose to live more engaged and connected lives that question the self- absorption around them. Here we see a form of self-focus that Coupland appears to be critiquing as an aspect of contemporary culture, interpreted as an image of autism by

Hacking. The danger in this approach to Coupland is that his work becomes autistic in a singular sense of negative self-focus. This not only casts autism as a negative way to be, but misses much, if not most, of what autism is, and potentially offers a limited lens through which to view Coupland’s work.

To move beyond this reduction, I want to explore Player One: What is to Become of

Us, his 2010 novel that was also delivered as the 2010 Massey Lecture series. In this novel, that documents in five hours, a minor apocalypse that starts with a spike in the price of oil, one of the characters who ends up trapped in a Toronto airport hotel bar is

Rachel. Rachel describes herself as follows: ‘I have autistic spectrum disorder. I have problems with inhibition and disinhibition, as well as mild OCD. My sequencing abilities are in the top half percentile. I know pi to just over one thousand digits’ (97). As will become clear in this chapter Player One is the first of three examples of Canadian fictional autistic representation that play with ideas of either the supernatural or images of near-future dystopia.

The plot of the novel sees a group of typical Coupland misfits finding themselves trapped in an anonymous airport hotel bar with drinks being served by Rick who laments the theft of his truck while listening to the tales of his customers who typically pass through the bar and never return (11-13). As characters gather in the bar for various

198 twenty-first century reasons (Karen and Warren are there for an Internet date), the dramatic rise in the price of oil coincides with a series of explosions, poisonous dust clouds, and via snippets of television news coverage and through fleeting moments of

Internet connection, we learn, a general social collapse. To complicate their predicaments,

Warren is shot by Bertis who had come to the hotel in order to kill Leslie Freemont, an infomercial promoter (62). The action of the book is told via the interior monologues of the various characters who offer reflections on the state of their own lives and of those they are trapped with. In addition to the human characters, we also have the voice of

Player One, an authorial omniscient voice, who not only tells us what will be happening in future chapters, but in something of a postmodern complication, is also the name of the autistic Rachel’s avatar character with whom she merges at the end of the book (35).

Rachel as an image of autism is released to us slowly in the novel. Rachel tells us the story of overhearing her parents argue about her lack of marriage prospects and having children, and she notes of herself that, ‘she knows that she has always been a barely tolerated sore point among her neurotypical classmates’ (33, 35). The image, then, of her not being neurotypical and not clearly understanding how neurotypical people behave comes before her deliberate description of herself as autistic. Here, Coupland is playing with his reader’s knowledge, he appears to be giving a gift of inside information to those readers who have some awareness of the contemporary language of neurotypical and neuroatypical as part of the terminology of the autistic spectrum and autistic advocacy, and he does this some sixty pages before Rachel ‘comes out’ to her bar-mates as diagnosed. We also receive descriptions of her otherness via the various characters in the bar: Rick offers the image of ‘something missing,’ Karen suggests ‘too pure for this

199 world,’ and Luke, who is on the run having stolen his congregation’s charity money, offers the picture of a ‘strangely mechanical gate’ and ‘someone not even human’ (19, 28,

30). These pictures of otherworldly alienness, all come before Rachel’s declaration of her autism and appear to point to Coupland’s assumptions about autism’s cultural currency.

The teenage Rachel has come to the bar to find a man to have sex with, to create the child that her father thinks she will never have. Through her own interior voice we get a picture of the deliberateness of her assessment of both Luke and Rick and how she needs to construct responses in her head: ‘Rachel then remembered from her normalcy training that people prefer it when you ask them a question after they’ve asked one of you’ (38-29,

41). In all this description, autism becomes something of a short cut to creating character.

Rachel takes her place in the bar, in this five hours of crisis and dystopia, alongside other somewhat dysfunctional contemporary characters, but Rachel gets neatly encapsulated by her label. Though we get some description of what makes Rachel autistic, I would suggest that the depth of her character is in part made in Coupland’s assumption that his readers have some prior knowledge of what autism is, this idea being illustrated by the clues to autism in the references to her contrast to neurotypical, in the first part of the book.

Coupland is well known for his pop-culture references, for his use of contemporary media imagery as metaphorical and descriptive short-cutting. In his first novel Generation

X, he famously used the makes and models of cars and the names of fashion designers as metaphors for his postmodern landscape and assumed his readers would ‘get’ these references (155, 177). In Player One we are expected to know what a ‘Loblaws’ is and what an ‘Ontario Hydro truck with cherry picker’ looks like, and we are also expected to comprehend and picture Rick’s image of ‘eating spaghetti at the restaurant with Lady and

200 the Tramp’ (158, 159, 161). In Player One, these shortcut descriptions include extended metaphors that launch from DSM like language: ‘Personality is a slot machine, and the cherries, lemons and bells are your SSRI system, your schizophrenic tendency, your left/right brain lobalization, your anxiety proclivity, your wiring glitches, your place on the autistic and OCD spectrums’ (209). To follow Susan Sontag and the idea that every era has its own pathology, in Coupland’s work, there is an expectation that his readers have some awareness of current mental health interests and discourses (see Sontag Illness as Metaphor and Aids and its Metaphors). For those in the know, a secondary insider knowledge, is revealed in this language that gives many of Coupland’s novels a very contemporary and potentially short-term feel as they traverse highly contemporary and often transient referential frames.

From a disability studies perspective this shortcutting has its dangers. As I noted in

Chapter Two and briefly above, many disability scholars associate the use of disability and disability labels in fiction with a wish to create a short-cut description of a more general aberrance, of using disability to capture the negative traits in a character or to create a simplistic character or device that is the site of development of the non-disabled.

Ato Quayson in Aesthetic Nervousness explores this idea of disability as short cut via a history of literary texts. Quayson’s concept of aesthetic nervousness addresses the idea that in the context of disability a certain ‘short circuit’ takes place that bypasses the establishment of full character as a disability stands in for all that that person is. He notes that ‘aesthetic nervousness is seen when the dominant protocols of representation within the literary text are short circuited in relation to disability,’ that ‘for the reader, aesthetic nervousness overlaps social attitudes to disability that themselves often remain

201 unexamined in their prejudices and biases’ (15). Disability stands in for the pre- understood social attitude to otherness and as such disability becomes a short circuit to a particular narrative or plot position. Quayson’s short circuit parallels Mitchell and

Snyder’s idea of narrative prosthesis, of the idea that disability in some way supports or stands in for, a character trait (see Narrative Prosthesis 96).

For both Quayson, and Mitchell and Snyder, disability, handled in this sense, is inappropriately used to create character or move plot forward, while reinforcing wider, typically negative social attitudes towards disability; disability is trapped at the level of narrative device. With Rachel in Player One, I suspect something rather different and potentially simpler is happening. Rachel does not represent a particular image of social decay, and though it is clear that her motivations to get pregnant are to some extent derived from her own sense of otherness, her role in the text is a positive one; she is not a negative character who represents a challenge or quest to those around her. She is also not, via her disability, in any obvious way, the site of healing of others, or place of sentimental engagement for those trapped in the bar, as for example, Raymond the autistic character in Rain Man is. For Coupland the use of autism in a character appears to be a simple descriptive short cut as part of his making of a diverse map of characters that demonstrates his contemporary interests and savvy in a novel of less than 250 pages.

Rachel’s autism is more an abbreviated form of character construction rather than device.

In this sense, I would argue that for the vast majority of the novel Rachel is not overwhelmed by a secondary, ideological meaning that casts her and her disability in a negative light.

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The second question that disability studies asks of all disability representations, is just how accurate they are, and how much does a disability representation indulge in clichés or archetypal understandings of a particular condition; how much is a representation reductive? Here fictional disability representation and its role in making the language of any given disability comes up against the very limits of any representational process. While I wish to acknowledge there is some frustration with

Coupland in this text for his attribution of computer like processing skills to Rachel, notably in her ability to remember pi to over one-thousand digits, it should also be acknowledged that these sorts of processing skills are present in some on the autistic spectrum (97). The challenge in both the representation process and its criticism is to find a balance between a form of informing and repetition that constructs accurate and progressive images of disability conditions, and representations that reduce disabilities to neatly understood, reductive types. The key challenge for the critic, as I noted in Chapter

Two, is of course working out what role the text is performing and how this may vary for different readers. In the focus group’s discussion of Snow Cake that I will come to later in this chapter, group members discussed the problems of creating characters that are representative of broad ideas of autism, therefore recognizable as autistic, but without overloading them and creating stereotypes that simply reproduce limited ideas of an autistic life.

In the case of Rachel, Coupland’s Player One appears to navigate a narrow path between the potential to expand and reduce the language of autism, but makes its most useful critical point in challenging how Rachel’s life has been dominated by reflections on normalcy or her lack of it. The first positive challenge to normalcy comes in a

203 conversation among Karen, Rick and Rachel, where Karen tells us ‘but I like crazy people

– okay, not crazy, but people at the extremes of normal behaviour – are more interesting than so-called normal people’ (101). The social pressures of normalcy are also more clearly illustrated by Rachel herself when she dwells on her diagnosed position: ‘I personally worry that maybe I’m nothing more than my medical condition. If I didn’t have my brain anomalies, which others seem to perceive as damage, maybe I’d be a normal person instead’ (123). Here Rachel is not only hinting at an autism advocacy position of difference versus deficit, but she also makes the social model of disability point that as an individual is captured by their label, it is society’s response to that label that disables them as much as any underlying difference or impairment.

However, I would argue that Coupland loses much of his disability credibility with the metaphysical turn that takes place at the end of the novel. As Rachel and Rick consummate their relationship, and as she achieves the pregnancy she desires, love and love making bring Rachel to a place of faith and we learn that ‘And God gave Rachel what she wanted,’ that ‘Rachel had come too far in the past few hours – she had earned her right to be a part of the world. And besides God had given her what she wanted.

Perhaps God was the Happy Place and she’d been mislabelling Him all her life’ (162,

163). Though I don’t want to deny an autistic character’s right to a metaphysical experience, to a transformation via the act of love, the problematic here is as Rachel moves beyond this moment of growth and enlightenment to being shot and killed by

Bertis, her reemergence as spirit guide conjures the image of the autistic as divinely chosen and potentially cured in the twin acts of love and death. As Rachel speaks to us as herself and Player One, from a place of ‘Eternity,’ she acknowledges that ‘I now

204 understand metaphors,’ and by implication has lost the autistic side of herself (204). Here we have the image of the divine curing of disability in death that uncomfortably emerges in the Vasey biography twined with the image of the disabled as ‘God’s children’ with a message for the rest of us.

In something of a repetition of Coupland’s earlier novel Girlfriend in a Coma,

Rachel closes Player One with a miraculous return to the physical realm and recovery from being shot, minus her ability to understand metaphor (which she thinks she may miss), to have a child with Rick and live at peace in the new post-oil world that will emerge outside the confines of the hotel bar. As the novel closes, Rachel tells us that,

‘best of all, my father will think of me as a real human being, which is all this trip was ever really about, and so I get my happy ending too’ (213). In this moment of closure,

Rachel achieves her normative goal but in aligning her pregnancy with satisfying her father’s demands for ‘a real human being’ Rachel appears to resign herself to at least try and pass as normal. Her critical edge that earlier in the novel appeared to question assumptions about difference is lost in this appeal to paternal validation; her metaphysical experiences have not led to a call for acceptance, but a resigning to normalcy.

The challenge in Player One, as is often the case with Coupland’s work, is to speculate with any confidence about his place of critical comment, to make sense of his collection of contemporary references and succinct observations in his broader context of what could be called metaphysical longing. In discussing Coupland’s first ten years of writing, Mark Forshaw raised what he called an ‘uncomfortable problem,’ that amongst what he saw as a powerful critique of postmodernist contemporary culture, Coupland displays a certain theological conservatism (56). Forshaw observed that ‘hierarchical,

205 hegemonic notions of Truth, of the logos, were not interrogated and deconstructed without good reason: they are deeply conservative and deeply oppressive’ but he goes on to suggest that Coupland ‘perhaps regressively overcompensates, for years of willful uncertainty in all manner of discourses, but his critique of consumerism, cynicism and complicit postmodern irony seems to me to be an utterly vital one’ (Forshaw 56, 57). In the context of disability studies a contrast stands between autism as a form of divine connection, and Coupland’s progressive, but subtle critique of normalcy, but his theological turn at the end of the text creates a sense of awkwardness around the role of autism as a metaphor for an asocial society. In Player One, autism can be read as a symptom of metaphysical lack realized as social isolation, and Rachel’s metaphysical return to life at the close can be seen as a first move in curing this wider social problem, even if the bargain requires her to return to her autistic state. In this, autism acts as symbol and individual burden, and does in these last moments of the book start to fill the role of plot device or trope that awkwardly starts to challenge the initial thoughts that

Rachel as autistic is not ideological overload or substitute.

Though Coupland’s status as postmodern writer is not a central focus in this work, it is worth dwelling on briefly to see what debates about postmodernism have to offer to a critique of Coupland’s representation of autism. Hacking offers Susan Sontag’s idea that decades or epochs have their own pathologies and that these pathologies reflect some aspect of their times (“Autism Fiction” 632). If we accept Hacking (and others) suggestion that the current choice is ASD, then there is an argument for seeing autism as part of the condition of postmodernity. To follow Fredrick Jameson’s idea of postmodernism as the condition of late-capitalist culture, then, autism and its

206 metaphorical associations with technology and isolation becomes the mental health expression of the postmodern condition (see 45-46).

In an academic sense this may all feel a little dated. The idea of the ontological uncertainty of postmodernism as a dominant motif of the late twentieth-century appears thoroughly lost in a post-9/11 neo-liberal confidence that politically sees little to self- question in its globalized capitalist project, and this might be why disability studies does not talk of the postmodern at great length. If however we follow Brian McHale’s seminal capturing of postmodern literature as a literature of ontological rather than epistemological focus then there maybe space for bringing disability critique and postmodernism together in Coupland’s work (McHale 9,10). For McHale the shift between modern and postmodern literature is a shift of questioning from ‘problems of knowing to problems of modes of being – from an epistemological dominant to an ontological one’ (10). In having autistic characters present in his text, Coupland addresses this question of ontology, as the othered outlook of autism constructs a radical consciousness (ontology) that creates a separation from the neurotypical. McHale notes that ontologies and epistemologies, when pushed, collapse into each other, and one could argue that Rachel’s struggles with her neurotypical classmates and with conversations in the hotel bar illustrate how her very ontology leads to a different approach to the epistemology of her position (11). In other words the epistemological challenges of a particular narrative event are approached by autistic and neurotypical characters from alternate ontologies. This process is paralleled in the biographical account of Gould and

McLuhan, in the contrast between finding answers in their neurology (ontological dominant), as opposed to finding answers in their life experiences (epistemological

207 dominant). This ontology/epistemology contrast is in a very concrete sense the illustration of Hacking’s idea of fiction and biography creating the language of autism, as both the autistic and neurotypical struggle with the tasks of finding the language for a different worldview. This is the epistemological task of knowing another ontology through the practices of fiction and biography, and in this thinking, the responsibilities of writing about and through autism are emphasized, as is the role for critical works such as the one you are now reading. In Coupland’s case, the clarity of Rachel’s ontological insight is rather lost in her metaphysical transformation at the end of the novel that leads her briefly to lose her unique (in the context of the novel), perspective when she temporarily understands ‘metaphor’ (Player One 204).

Autism at the end of the world (again): Margaret Atwood’s Oryx and Crake

Coupland’s postmodernist present is at play in Player One in the de-cultured space of the airport hotel bar, in his habit of contemporary pop-culture references, and potentially in the ontological challenge of the autistic outlook, but in his narrative he also engages with an imminent-future dystopia that links his work with the next text I want to consider, Margaret Atwood’s Oryx and Crake. For Coupland, autism is present as witness and diviner at the moment of partial social collapse, for Atwood, asperger is not only present in the moment of decay as symbol, but is also implicated in the near-future’s most disastrous events.

In Oryx and Crake, Atwood creates a nightmarish world dominated by genetic modification, social divisions, and absolute corporate power. Amid environmental decay and an over-heated world, humanity has become divided between those who have made a

208 success of their lives and live in company-run ‘Modules’ and those who reside on the outside, in the dangerous and degraded ‘Pleeblands’ (27). J. Brooks Bouson reports that

Atwood describes the book as ‘speculative fiction,’ and goes on to suggest that ‘Atwood is intent on showing the calamitous impact that scientific knowledge, if misused, can have on the human realm, focusing on the horrors of daily life in the twenty-first century world of her survivor, Jimmy-Snowman’ (140).

Our narrator Jimmy/Snowman, who at the start of the novel appears to be the last original human left alive, recounts Atwood’s dystopian vision of the imminent future and how it collapses into a deliberate apocalypse via his childhood friend, Crake/Glenn’s, engineered virus. Accompanying Snowman at the end of the world are Crake’s genetically formed children, the ‘Crakers.’ Through Snowman’s memories we learn of his childhood, education and work-life before the devastating virus, and of a world dominated by technological corporations that rigidly control dissent and use genetics to engineer vain human desires and solutions. Atwood’s text is clearly a critique of, and something of an allegory for, contemporary neo-liberal capitalism and its focus on consumerism, and fears of social division and environmental decay, but in Crake and his deliberate life-ending virus, it is also the story of ‘the mad scientist,’ of the megalomaniac figure who believes he can engineer a better species to replace humanity.

Oryx and Crake becomes of interest to this dissertation because of the implication that Crake is aspergic. Jimmy/Snowman and Crake/Glenn spend their adolescence together as friends in the ‘HealthWyzer Company Module’ where their parents work, but after high school, they attend different universities. Critically, the chapter in which Jimmy visits Crake at ‘Watson-Crick Institute’ is titled ‘Asperger’s U.’ (192). We learn that

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Watson-Crick was known to the students there as Asperger’s U. because of the high percentage of brilliant weirdos that strolled and hopped and lurched through its corridors. Demi-autistic, genetically speaking; single-track tunnel-vision minds, a marked degree of social ineptitude – these were not your sharp dressers.’ (194-94) In a conversation about the impending visit Crake informs Jimmy that in contrast to

Watson-Crick, the ‘HealthWyzer’ module they grew up in was ‘wall-to-wall NTs,’ which

Crake explains stands for ‘Neurotypicals… Minus the genius gene’ (194). Here then is the conventional Rain Man image of autism or asperger associated with awkward genius and advanced processing skills, and the implication that Crake and his fellow students at

Watson-Crick fit into this category.

We learn that this approaching future that Atwood has created, values ‘numbers people’ over the artistic or word focused (188). As Chung-Hao Ku notes, ‘the technocratic system figures prominently in sanctioning Crake’s power to manipulate others for his and/or the system’s own ends (121). By contrast Jimmy’s failure to be one of the ‘numbers people’ has put him into the seedy Martha Graham Academy, a school forced to bend its knee to utilitarianism.’ Martha Graham Academy is cast as an underfunded, marginal institution named after a twentieth-century choreographer who no one can now remember, and its role in the new economy is not to explore the arts but to produce the designers and copywriters who promote the causes of the corporations (Oryx and Crake 188).

The devaluing of the arts and promotion of technology and science and the contrasting journeys of Snowman and Crake form part of Atwood’s allegorical critique of the times she is writing in, but in the linking of scientific ascendancy with asperger and genetic irresponsibility, we run into some awkward conceptions of aspergic people. Here,

210 again we see asperger as a metaphor for cultural change, for expressing fears about what

Wallace calls ‘an upended social topography, a buckled landscape where nerd titans hold the high ground once occupied by square-jawed captains of industry’ (“Are You On It?”

2). As I noted in Chapter Three, Wallace sees asperger being used as ‘an Other-deriding tool to soothe our cultural anxiety about ongoing power shifts from humanist to technologists’ (2). The challenge with Atwood is that asperger becomes more than a metaphor of cultural anxiety. Instead via the conception of Asperger U. and its science- focused students who are the leaders of this near-future world, asperger and asperger traits become intimately associated with a fearful, destructive dystopian future. Atwood’s allegorical stance casts the impression of a world in crisis because asocial technologists, who are by implication on the spectrum, have taken over, and the critical inference in her idea of speculative fiction, is that we are already, in part at least, living in this world.

Hacking notes, in relating autism to technology skills, that ‘I think this play is rather dangerous loose talk. It melds two false stereotypes and encourages misleading or just plain false ways of thinking about computer skills and about autistic people’ (“Autism

Fiction” 652). Atwood’s use of asperger becomes uncomfortable because of the reductive image of asperger as inherent technological genius, but also the potentially more unpleasant implication that our imminent social decay is the responsibility of aspergic people and our apparent tendency to privilege their skill sets. Irene Stevens in her paper

‘Mythologizing Asperger Syndrome: Exploring Impacts on Social Justice for Children in

Out-of-Home Care’ makes the point that ‘The co-location of “Asperger” with “U” in

[Oryx and Crake] creates a value assumption about both the word “Asperger” and

“university’…. This value is transferred by co-location to the word “Asperger”’ (482).

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Stevens is concerned for aspergic children in care who face false expectations of savant genius as a consequence of texts like Oryx and Crake, but there is the further issue of aspergic individuals also being seen as responsible for, and in charge of, cultural and social phenomenon over which, in practice, they have no control. Here is the image of aspergic people being expected to be geniuses, but also to use this intellectual power for negative ends.

Crake refuses to answer Jimmy’s question on his aspergic status: ‘so are you neurotypical,’ and we are never actually presented with a definitive description of Crake as aspergic. However, descriptions of Crake pick up on many of the more common stereotypes of asperger. Jimmy notes that Crake showed little interest in love and sex and saw sex as ‘a deeply imperfect solution to the problem of intergenerational genetics transfer,’ and on first meeting Crake we learn that ‘Crake was different,’ that in an image of the little professor, Jimmy’s mum suggests that Crake is ‘more like an adult, she’d said; in fact, more adult than a lot of adults’ (193, 69). The diagnostic potential continues as we learn at this first meeting with Crake, that his real given first name is Glenn, and the second ‘n’ is explained: ‘he named me after some dead pianist, some boy genius with two n’s’ (70). The insider knowledge or implication here would appear to be the speculative connection to Glenn Gould as aspergic.

Though Crake never answers Jimmy’s question and Atwood never definitively labels Crake, he does appear to inhabit an asperger label more clearly than the general world of asperger as metaphor that pervades the novel. Crake comes across as the book’s most extreme example of a ‘numbers person.’ However, I do need to acknowledge the game that I am also in danger of playing here, of looking for clues to Crake’s diagnosis,

212 that leaves me vulnerable to simply finding the clichés of asperger present in the descriptions of a fictional character. There is a need to acknowledge the potential for the critic to also be indulging in the reductive stereotypes of a disability in order to make a critical case for, or against, a fictional text and a particular characterization. The challenge in this moment of critically finding asperger as problem in Oryx and Crake is that the very inclusion of the text in this dissertation promotes its aspergic engagement, much as the inclusion of 32 Short Films About Glenn Gould in the focus group implies that Gould must be on the spectrum. In the focus group’s discussion of Gould, this concern was raised with the idea of what level of desired isolation is required to trigger a diagnosis and how Gould could be captured as either aspergic or eccentric. In these comments, then, there is the question of finding what one is looking for that is always present in retrospective diagnosis. In exploring fictional representation there is the challenge of constructing one’s own underlying or connotational meaning, but I would argue that

Atwood has left a clear trail of evidence in the case of Crake for him to be seen as aspergic with references to ‘Asperger U.’ and to Crake’s own references to not being neurotypical.

In a critical academic context, Crake’s aspergic status is also received without question. For Katarina LaBuDova, Crake’s ‘lack of feeling can be explained by Crake’s suffering from Asperger’s syndrome’ (139). LaBuDova, Shuli Barzilai and Chung-Hao

Ku, all cite Bouson’s comments on Crake as aspergic. Bouson captures Crake as follows:

Crake, the logical, egotistical Frankenstein figure, is enormously successful in the upper strata of his pre-apocalypse society. Like those suffering from Asperger’s syndrome, Crake has an above average

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intelligence, and intense or obsessive focus on a particular area, low social skills, and a lack of empathy. (148-49) Barzilai offers the idea from Bouson that ‘His indifference is not feigned. Rather, as J.

Brooks Bouson argues, in his “utterly affectless” approach to human life, he manifests a symptom of the high-functioning form of autism known as Asperger’s syndrome’

(Barzilai 193). Here the critical interpretation of Atwood’s making of Crake as an image of asperger further reduces or simplifies asperger into negative clichés, and in the process illustrates the problems of Atwood’s use of a diagnostic label to capture that which she finds worrisome in contemporary life. The critical responses to the book further illustrate the performative reduction that Oryx and Crake is vulnerable to. Ku makes the argument that ‘he [Crake] is less ‘mad scientist’ than a product of the capitalist machinery. After all,

Crake cannot destroy the world without the conspiracy between technocracy and capitalism,’ but as either mad scientist or extreme representative of the new, dangerous, capitalist normal, Crake, and this new normal are bound up with the image of a disability diagnosis and with asperger (31-32). Inevitably in both these images of asperger, it becomes both a dangerous and negative way to be in the world.

The fundamental problematic in Oryx and Crake is an image of Atwood’s new normal that reject the arts in favour of science and plays dangerous games with corporate power and genetics, being awkwardly conflated with asperger. Quayson’s idea of aesthetic nervousness comes into stark relief here, as asperger comes to stand, in

Atwood’s text, for much that is wrong and fearful in her speculative near-future (see

Quayson 15, 34). This is not so much an aesthetic nervousness that asperger is a simple character or narrative shortcut, but a nervousness that Oryx and Crake exploits a disability diagnosis to critique contemporary culture and in the process creates a damning

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‘short circuit’ of what asperger is, stands for, and means for culture in general. In this sense, asperger as metaphor for techno-science and as the source of Crake’s ‘mad vision’ implies that asperger is an exclusively negative form of contemporary and future humanity. The message here is that we have already given the keys to the world to the aspergic, and this is what they intend to do with it. I would suggest that Atwood is vulnerable to the criticism that she takes on the autism spectrum as more than metaphor for the negatives of modern technology, but places responsibility for the fundamental and final collapse of civilization as currently understood on aspergic mania working within an asperger privileging ‘numbers’ culture.

Autism as troubling divine in Brad Kelln’s In Tongues of the Dead

Coupland and Atwood place asperger and autism in their future dystopic moments, playing with the spectrum as both insight and source of crisis. The next text for consideration takes autism and the reader further into the realms of the strange and supernatural with an autistic boy cast as fallen angel. As with Player One, Tongues connects autism to the fantastical and divine, and alongside Oryx and Crake, the three novels suggest that autism has become a rich source of inspiration for creating fictional otherness.

Set in a fantastic present, Brad Kelln’s In Tongues of the Dead is a religious thriller in the mould of Dan Brown’s The DaVinci Code. The basic plot of the book is that Yale

University’s Beinecke library contains an ancient Christian text, the Voynich manuscript, that has remained an unreadable, undecipherable code for over five-hundred years until the autistic child, Matthew, starts reading it while on a school trip. We are told that

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Matthew is non-verbal and that these are the first words he has spoken. The Vatican, responds to this news, reported by their agent Father McCallum, by sending various good and evil representatives to both protect and kill the child, and destroy the manuscript.

Father Benicio Valori, the hero of our tale, defies his Vatican master, Cardinal

Esponosa, who wants Matthew killed, and abducts the child from his abusive foster parents. Matthew and Father Benicio make a run for the Canadian border and ultimately

Halifax in an attempt to escape Esponosa’s henchmen. To complicate matters, they are also pursued by two Nephilim who are also intent on killing Matthew; these two characters have also stolen the manuscript. The Nephilim, we are told, are the offspring of angels and women, damned by god as a mistake, and the subjects of the unreadable book.

We follow Benicio and Matthew as they make their way to Halifax and Benicio’s psychotherapist friend, Jake, who gets sucked into the action of the book despite having his own son on death’s door with a brain tumour.

The problems of this book are many and as Hacking notes of this particular example of autistic fiction, ‘no genre can avoid dismal failures’ (“Autism Fiction” 643).

Beyond the conception of Matthew as the predictable autistic savant, as the disabled body containing hidden pockets of brilliance that are only revealed in the presence of a divine text, disability in various forms in this book become symbols of aberrance, divine sympathy, and markers of God’s displeasure. The two Vatican agents who are sent to kill

Matthew, Jeremy and Maury, have been brought up to believe they are Nephilim and that their debilitating skin condition derives from this status of being half human and half angel; however, we and they ultimately learn that they are lepers who have been deceived by the Church so that they will carry out assassination missions for their Vatican master

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(Kelln 48-49). Throughout the text, they offend the ‘normal’ people they come across, both with their appearance and their smell, and their physical disability is linked to their moral fallibility. Jeremy and Maury, then, are classic examples of narrative prosthesis or aesthetic nervousness, as a disability represents an inner weakness or negativity.

Matthew himself is captured as autistic with archetypes of ability and disability. His educational assistant offers the following: ‘he doesn’t speak, doesn’t like to be touched and is very likely mentally handicapped’ (32). This causes Father McCallum to offer:

‘and don’t these children sometimes have special talents such as math or music?’ which, of course, Matthew turns out to have (32). Beyond the trope of autism and gift, we are also told that Matthew is Nephilim himself, he is also a child of a woman and an angel, and for the mysterious Cardinal Esponosa, this means he is forsaken and hated by God; hence the need for him to be killed (79). The implication here is that Nephilim is autism and autism is Nephilim, and that for the Church and many of the characters in the book this is a forsaken condition, the Nephilim/autistic are ‘the dead ones’ (79). This position is challenged by Benicio and by a homeless man we meet at the end of the novel, Harold, who tells us that ‘the Nephilim were innocent. They were innocent’ (235). Autism as

Nephilim in this text is captured as either the extremes of evil or innocence and as something of a possession of an innocent body. Kelln tells us that Benicio, ‘imagined a vibrant young child deep inside wanting to get out. Autism was cruel’ (126). This image of possession is also reinforced with the body-snatching habits of our other two Nephilim who, in their pursuit of Matthew, kill and then occupy the bodies of their various victims.

At the close of the book we all end up in hospital, in Halifax at the bedside of Jake’s dying son, Wyatt, whose tumour has proved to be fatal; the bad Nephilim (the real

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Nephilim, not the fake Nephilim who turn out to be lepers), burst upon the scene and succeed in killing Matthew, and in a moment of predictable miracle, Matthew’s dying act is to revive Wyatt (239). The final page has the revived Wyatt finding the Voynich

Manuscript that has been hidden in his bedroom, and he starts to read it. Here at the close of this troubling narrative, autism as Nephilim occupies an awkward place as innocent sacrifice to save another child, or negative possession of another’s body to continue an autistic/Nephilim line. Critically, in this closing, no one misses or mourns the autistic

Matthew.

What are we to make of this troubling image of autism as fallen angel and forsaken, as bodysnatcher and cause for God’s anger, as a death not to be mourned, but also as innocent child who gives his life to save another? This is clearly, as Hacking notes, not a good book. The copy I own was bought for a dollar having been withdrawn from the

Delaware County Library System, and I wonder how quickly this will be the fate of copies of In Tongues of the Dead? There is clearly discomfort at yet another construction of autism as a child with a hidden gift, and the awkward association of disability with possession and divine displeasure. Again this book reinforces the position of Rain Man as the meta-representation of autism as again autism is seen to include mysterious gifts. This book clearly triggers the sorts of criticism of disabled characterization made by Mitchell and Snyder, Norden and Quayson.43 Matthew and his autism are clearly plot devices that lie at the heart of the narrative, but Matthew remains a blank surface upon which the plot rests. He is, as it were, at the heart of the text, but with no real representation or voice.

43 Despite the concern I noted in Chapter Two in relation to the over-determining of ideas of prosthesis, of the over-finding of disability as backdrop and trope, Tongues would appear to be a clear case where this form of criticism is legitimate and obvious. Matthew and his autism are used as a plot device and Matthew does not develop as a character with any voice in the text.

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Matthew is also drawn into older visions of disability bound up with images of ‘divine displeasure’ that Mitchell and Snyder note were common prior to the Enlightenment

(Narrative Prosthesis 66).

There is, of course, an argument for ignoring such poor examples of autistic fiction, and there is a genuine wish that books like In Tongues of the Dead remain relatively unread. As Hacking notes, ‘it may be comforting to think of all autistic people as having their own unique endowments, and perhaps even being secret savants, but that is an illusion that does no one any good. Unfortunately a lot of autism fiction fosters that illusion’ (“Autism Fiction” 642). However, there is also a need to acknowledge that they form part of the Canadian map of autism representation; Kelln is a Canadian author and the title pages tell us that ‘The publication of In Tongues of the Dead has been generously supported by the Canada Council for the Arts’ (title pages). Amid the relatively small number of fictional works that address autism to emerge from a Canadian context, it is important to acknowledge even the most uncomfortable of representations, and I would argue for all the discomfort of In Tongues of the Dead, its significance as a negative portrayal of autism is going to be less than Atwood’s impact with her mad aspergic scientist Crake. Kelln’s work for all its unpleasantness is unlikely to reach the audience or critical significance of Atwood’s writing and for all its reductive image of autism, its disability transgressions are not likely to be further amplified by the sort of critical responses Oryx and Crake has received in academic writing.44

44 With the exception of Hacking’s comments, I found no academic references or critiques of In Tongues of the Dead.

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Faith as the answer: Lori Kohlman’s Horses Hockey and Haloes

In contrast to Player One and Oryx and Crake, Lori Kohlman’s Horses Hockey and

Haloes is not set in a near future dystopia and though steeped in Christian dogma, unlike

Tongues it does not represent autism as the supernatural. It also does not offer a savant gift as compensation for autism’s disabilities. Horses Hockey and Haloes, does however, emerge from a particular place on the publishing spectrum. If the concern about Atwood’s representation of autism is bound up with Atwood’s status as a canonical Canadian author,

Kohlman’s text comes from the opposite end of the publishing world. Written in 2008, the book was privately published, my copy being sent directly from the author’s own mail order operation. Searching for the book on Amazon’s Canadian website produces no results. Emerging as it does from this limited context, Horses Hockey and Haloes is unlikely to have the same cultural and social impact as many of the other texts discussed here, but it is an example of an autistic representation that clearly attempts to connect with, and exploit, ideas of Canadian identity, and via an autism narrative promote specific social values. The book declares on its back cover its connections to a strong Christian faith, much in the same way that the Vasey biography The Road Trip does. Kohlman subtitles her book ‘a story of faith, courage and second chances,’ and in the author blurb we learn that ‘her stories reflect life on the prairies and the faith that has inspired within her a strong appreciation for her roots and the heritage that surrounds her’ (back cover).

Like Tongues, the church and Christianity plays a central role in this book, but here

Christian faith is a source of healing and comfort, rather than corruption and intrigue.

At the start of the story, Sam a single father is raising his two children including the autistic J.J. while running the family farm. His wife abandoned him before the narrative

220 starts because of her inability to cope with J.J. Eve arrives in their small prairie town as the special education teacher who falls for J.J., and via her near-miraculous work with this child, captures the heart of Sam. The plot is offered the twist of Eve having an autistic brother who is confined to a distant and cold-hearted institution for most of the novel. In the contrasting journeys of J.J. and Eve’s brother, the idea of familial self- reliance, a strong Christian faith, and a rural life on the farm is promoted over a form of urban institutional care. Consistently the urban is cast as un-Godly and corrupt and the rural and agrarian is portrayed as a place of Christian innocence and healing. J.J. and

Eve’s brother both ultimately find their peaceful relationship with the world via the experiences of riding horses and engaging in making a future for the farm.

J.J.’s autism is captured in the not untypical terms of burden and challenge for both

J.J. and his father; Kohlman tells us that J.J. ‘carried the weight of an unknown world’ and that his father would ‘shoulder J.J.’s burdens and burdens of every other child who’d been given the same sentence, if it were possible’ (8). This image of autism as a sentence, as incarceration, emerges elsewhere in the book; for example Eve talks of her brother,

Thomas, and his living in an institution as ‘like a death sentence’ and she muses that ‘like her brother, he’d [J.J.] been given a difficult sentence’ (33). Sam also expresses the concern that ‘J.J. might never grow up to get married, to have a regular job, to have children of his own’ (110). The fictional Sam expresses many of the same concerns offered to us by Arthur Fleischman about his daughter Carly and Horses traverses the same narrative path as Carly’s Voice; J.J., like Carly, develops within the book and eventually starts to find a few words and J.J. achieves the normative Canadian goals of playing hockey and riding horses (Fleischman 83, 221; Kohlman 259). Eve even reports

221 to us that ‘J.J. is showing signs of a child with high-functioning autism’ (169). However, unlike Carly Fleischman, J.J. does not get the opportunity to express his position and thoughts on his own life and autism; the author does not give the central autistic character an inner voice that could speak directly to the reader, or any significant dialogue in the book. J.J., despite emerging from a relatively intolerable image of autism presented at the start of the book as a ‘life sentence,’ remains under-represented in a text in which he is the critical plot device.

The escape to a place of ‘high-functioning,’ the normative expectations of the father, and the image of autism as burden, are all ripe for a disability critique. J.J.’s life needed to achieve certain ableist goals in this book to be saved from tragedy, and a form of normative ideology is clearly present in this text as J.J. progresses and Sam and Eve come together as a traditional couple, ready to take on autism and running the farm. Much as

Matthew does in Tongues, J.J. here conforms to the critics’ expectation of being a relatively unresponsive character with little voice, who is a form of reflective surface upon which the narrative of the book is carried out. As I noted in Chapter Two, McRuer makes the argument that disabled characters are often flexible, adaptable backdrops to the journey of the non-disabled characters in a narrative (16). Here J.J. is a prosthesis to the coming together of Sam and Eve.

There is a wish, here, that Kohlman had found the courage to not provide J.J. with his high-functioning escape, but to have made a legitimate claim for his autism to be part of a valid life story in a realm that is non-verbal and does not show a path towards normative development. Few fictional portrayals of autism appear comfortable with the

222 idea of autistic characters who do not make steps towards the neurotypical.45 In the fear of non-verbal autism being seen as tragedy, fictional representations do not model the possibility that Sinclair is calling for, of the embracing of what is. One of the challenges of narratives that consistently illustrate moves towards normative ‘progress’ is that, in the absence of examples of stories that show comfort with more significant disability, they reinforce Fiona Campbell’s idea of disability and classic autism as ‘ontologically intolerable’ (109). The majority of emergence stories, including biographical accounts of finding expression like Carly’s Voice, by their success narratives, in part reinforce this view. It is, I would suggest, this combination of normative development, contrasted with a lack of character complexity and expression from the autistic character, that leaves stories like Horses with unsatisfactory images of disability and autism. The reader is given relief from tragedy, but without gaining any productive interiority of autistic experience.

In Horses, we meet a notably Canadian response to, and construction of, autism. If we follow Frye’s image of Canadian writing ‘marked by the imminence of the natural world,’ and if we can see the prairie farm as symbol of this natural world, then Horses becomes archetypal in its Canadianness, and a placing of this rural vision at the heart of a response to autism (Frye 247). Not only do we find this in the regular contrast between

J.J.’s opportunities for healing on the farm and Eve’s negative conceptions of her brother’s urban institutional care, but we are reminded of Sam’s settler destiny in his own reflections about the farm: ‘but it had come from so much more than just his own personal toil; it was a shared venture between his grandfather, his father and now himself’

45 The one obvious exception is the Australian feature film Black Balloon that I discussed in Chapter Two, where the image of a young autistic adult is not accompanied by moments of development and emergence.

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(Kohlman 178). Kohlman surrounds her characters and infuses her novel with a Canadian, prairie agrarian dream that at times sounds more like an American manifest destiny. Eve extols Sam’s farming vocation with the following: ‘a job? You’re joking right? How can this be a job, Sam? When you step down off your horse, you own the ground you walk on’

(86).

Running parallel to this Prairie hegemony is the idea of a strong Christian faith that reminds us of the Vasey biography and provides an awkward link to Tongues. At the start of the novel Sam lacks or questions his faith, but through his non-autistic daughter and

Eve he comes to a place of strong faith that is again implicated in his son’s progress (5,

182). Autism through these expressions of faith is seen as both an image of innocence, but also a gift or challenge from God. Here, much as it does in Tongues, disability gets bound up with the divine and acts as moral test for the non-disabled. In the middle of the book, Sam identifies that ‘God gave him to me for a reason, but I still haven’t figured out just what this is’ (110). Sam’s journey to acceptance through faith is awkwardly contrasted to his ex-wife, Kara, who ran off to the corruption of the city, and is described as ‘wrinkled and fat and being punished for her badness’ (169). Here, then, disability is offered as a form of innocence that is moral trial for the good, and is contrasted to Kara’s implied physical disabilities that are set out as a punishment for those who fail the moral test of a disabled child. For Susan Wendell ‘when you listen to this culture in a disabled body, you hear how often health and physical vigour are talked about as if they were moral virtues’ (Disability Studies Reader 249). In Horses, not only is Sam’s vigour contrasted to his ex-wife’s ‘badness’ in order to find her morally wanting, but her

224 apparently diminished physical condition is cast as a deserved consequence of her abandoning of her familial duties.

Horses, like Tongues, is clearly a problematic book. The plot telegraphs itself from the first few pages, the dialogue is often awkward, the anti-urban, anti-institution message dismisses the reality of autism for many, and the divine punishment of the ex-wife illustrates the books ableist judgment and narrowed cultural view. But if we set these problems aside for a moment, this book does allows us to explore the relationship between autism as burden or gift to parents, and how these challenges are expressed in fiction. The language of disability as gift to the non-disabled is rightly questioned as a form of prosthesis or narrative device, notably when this gift comes in the form of a moral test. The idea of disability as the burden of the wicked and of being simply ontologically intolerable is also rightly critiqued as both a denial of rights, and the legitimacy, of the disabled as full human subjects. There is, then, good cause for challenging representations of autism, both biographical and fictional that dwell on these ideas, but the reality of autism that emerges through biography and colloquial experience is that, for parents and carers, it often occupies a complex place between these two positions. The lived experience of an autistic son or daughter is one that includes the contradictions of love of who they are with fears of the future and wishes for something different. These are the very ideas and concerns that Jim Sinclair addresses in his speech when he acknowledges the legitimate morning of parents for the child that never was, but then goes on to ask parents to embrace the child they have (6). Parents and carers and by implication biographers typically live in this conflicted space, with little time to dwell on theories of disability construction or how they might be discursively capturing their own

225 children. Both Myria and Janice in more than one of our focus group meetings expressed the challenge of wanting to embrace ideas of diversity, but also wishing to express empathy for parents struggling to come to terms with a disabled child.

To be a parent of any child, to care for any other person, is to experience the emotions of love and frustration. This gives some license to biographers to write in terms of burdens and gifts and to use this, at times problematic, language, but I would argue this places a more complex demand on fiction writers who should have greater space for reflection. Within a fictional vision of an autistic childhood and the care and support of the autistic in general, there is a need for reference points that take readers beyond these images of autism as either a challenging gift to the neurotypical that shows their moral worth, or as a state of being so diminished that if they die at the end of a novel, as

Matthew does at the end of Tongues, they are not mourned. This is something of a call to fiction writers to imagine autism and disability differently and be aware of the discursive traps that are so well described in the disability studies work on disabled characterization.

In Coupland’s Player One the autistic character is both central and gifted with her own inner voice. She occupies a place alongside the other characters in the bar and even enjoys an elevated status in her return to life at the end, but she is still captured via processing competences, and her metaphysical position at the close of the story is not free from awkwardness. In Atwood’s work Crake is a central and voiced character, but he fills the role of extreme version of a cultural metaphor and as a form of madness. In Tongues of the Dead, Matthew is central to the plot, but effectively unrepresented, lacking a voice.

He is simply device around which the narrative unfolds. In Horses Hockey and Haloes,

J.J. is again central to the plot, but again J.J. as a person lacks representation and voice.

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Though he acts as moral test for others, he is not given his own place of expression; he remains separate from the social life of the narrative. These fictional accounts of autism point to a distinct lack of an autistic voice at the heart of Canadian fiction that includes autistic characters and the perspective this might bring. As Myria noted in relation to the focus group, there remains a distinct lack of both documentary, biographical and fictional accounts of autism that allow the inner, self-experience of autism to be heard. Autistic voice may be present in some of the biographical accounts of autism that have come from a Canadian context, but in fiction this voice is only present when autism is bound up with dystopian futures, and autism also as metaphor.

While noting this challenge of a lack of centrality to autistic characterization in fiction, Stuart Murray offers a more supportive critique of Mark Haddon’s The Curious

Incident of the Dog in the Night-Time, which is narrated by the autistic Christopher. For

Murray, ‘Christopher’s world is complex and his autism, which he takes for granted because it is the basis of his life, is folded into his character as a natural element that resists the kinds of external interpretations that reduce the condition to status of metaphor’

(Representing Autism 48). In looking at the Canadian literary context, though Coupland approaches this centrality with Rachel, she is one of a collection of consciousnesses that relate the narrative, and in her story being related exclusively through the novel’s dystopian context we never get a sense of Rachel’s typicality or everyday experience of her autism. To date, deliberate Canadian literary fictionalizations of autism have not moved far beyond the idea that the disabled can be appropriated as narrative device and need to be spoken for, or that they occupy the role of deliberate otherness.

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Snow Cake and the cinematic representation of autism

If Canadian literature is apparently still stuck with a particular form of disability reductionism in its use of autism, the question emerges: can fictional cinematic representation create a more complex and diverse image of autism that allows more space for autistic subjectivity to emerge? In looking at Snow Cake, not only am I in a position to look at autistic fiction through a different medium, but in the containment of a two hour film, as I noted at the start of this chapter, I can also bring in the thoughts and ideas of the focus group. Here, then, is the placing of a feature film alongside literary versions of autism to see how the broad map of fictional autistic representation is laid out in Canada and explore the potential contrasts between cinematic and literary approaches to disability.

Snow Cake is a 2006 Canadian/British co-production, directed by the Welsh director Marc Evans and staring Sigourney Weaver and Alan Rickman. The film is set in the Northern Ontario town of Wawa. Alex (played by Rickman) picks up the young

Vivienne as he is driving across Canada. They have a car crash and Vivienne is killed.

Vivienne turns out to be the central carer for her autistic mother Linda (played by

Weaver). In his wish to offer his condolences to Linda, Alex is drawn into Linda’s autistic world and into the community of Wawa. The film is peopled by outsiders, Alex is embarking on his trip across Canada having just been released from jail after killing the man who coincidentally killed his son in a car crash. Linda’s neighbour Maggie with whom Alex has a brief affair is thought to be a prostitute because she has occasional male callers. These outsider people inhabit an outsider landscape, and the whole film plays with the idea of small town otherness, insularity and cultural marginality.

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As Alex spends time with the autistic Linda, he starts to learn about her condition and in consequence key facts of autism are revealed to both Alex and the audience. In conversations over the garden fence with Maggie, she explains, ‘its autism, but she is very verbal.’ There are further comments about high functioning: ‘Vivienne explained it to me, she is high functioning, can talk a glass eye to sleep, but can’t tie her own shoe laces.’ We join Alex as witness to Linda’s desire for routine; her fear of touch; her apparent lack of emotion at the death of her daughter; and her obsessions with ‘sparkly things,’ snow and her trampoline. We are also witness to something of a cinematic, autistic cliché, as Linda demonstrates a certain obsession with neatness and a remarkable competence at her own version of Scrabble. To the credit of Snow Cake, in this case the compensation is not some earth-shattering savant skill upon which the plot of the film hangs; Linda’s skills and talents are not that useful beyond her own enjoyment. The film clearly presents aspects of Linda’s otherness at its centre, but there is no apparent need to balance this otherness with a unique gift that defines her and the plot of the film.

In an interview at the Berlinale Film Festival, Weaver was asked if the film is about autism, or just a movie with an autistic character in it? Her response is clear, that the film just happens to have an autistic character in it (Berlinale Press Conference). For Weaver, though Linda is central to the narrative, her autism and her status as autistic is not all that the film is about. In the same press-conference, she goes on to say ‘I would not want to be in a position to generalize about this condition.’ Despite this clearly expressed wish not to define autism the film does contain the scenes of over-the-garden-fence explanations to

Alex (and the audience) as to what autism is. In numerous films that include autistic characters, the narrative is, in effect, paused for some medical character (typically in a

229 white lab coat) to explain and define what autism is for a key non-autistic character. This can be found clearly in Rain Man and Mercury Rising. In the over-the-garden-fence conversations about autism between Alex and Maggie, there is this sense of pause as the filmmakers apparently affirm to us that they have done their research. However, in Snow

Cake, this defining and explaining is gently teased. The explanations of autism do not happen in the clean, clinical world of medical authority, but are expressed by one of

Wawa’s other marginal characters, Maggie. Another neighbour also tells Alex, ‘don’t worry, I know all about autism, I’ve seen that film.’ Presumably, she means Rain Man, and so implied in this moment is a criticism of ‘that film’s’ narrow defining of what autism is. For Douwe Draaisma, these less rigid moments of defining autism are so minimal in Snow Cake as to not constitute pauses in the narrative at all; she makes the following comment: ‘up until six or seven years ago, many movies featuring autistic characters had a scene in it in which an expert, usually a psychiatrist, explained about autism and savant skills. We all remember the white-coat scene in Rain Man. There is not such a scene in the movie Snow Cake, released in 2006’ (1476). In criticizing the stereotyping of autism in Snow Cake and other films, Draaisma suggests that by 2006 the viewing public had enough knowledge of autism to read the stereotypes as autistic and there was no longer a need for detailed narrative explanations.

Alex, who is seen to be generally supportive of Linda in the film and accepts

Linda’s request to stay in the house for a few days, also retains his critical edge with regards to what autism is, and he remains in a place of general ignorance about the condition. Not only does he fail to follow Linda’s rules about neatness and where he is allowed to go in the house, at the end of the film he tells Linda that she is unreasonable,

230 to which she replies ‘I am autistic.’ His response is: ‘well, I think it is the same thing.’

The Wikipedia page on the film reports that Rickman chose to do no research on autism before making the film, so that he could come to Linda from a genuine place of ignorance

(“Production Notes” Wikipedia). In this way the reification of autism that is typical of the cinematic combination of disability and savantism is gently undermined, and autism gains some status, not as simple object, but as a more fluid discourse. To challenge Draaisma’s conclusions of stereotyping, Richman’s character Alex represents a typified audience position of coming across autism for the first time in unexpected and novel circumstances, and in the film’s choice not to over-define the disability, there is the possibility of the autism constructed in Snow Cake being more open and loose than that found in many fictional representations.

The character of Alex and his gentle cynicism towards Linda and contradictory cynicism towards how others treat her in the film also shows autism as something that is not precious. While mostly respecting her otherness, Alex still addresses Linda as a person and not as a fragile embodiment of an alien condition that forces the focus onto her disability rather than her personhood. This supports Weaver’s assertion that ‘every person with autism is so unique’ that she made in the Berlinale interview. In reflecting on the relationship between Linda and Alex and her somewhat surprising acceptance of him into her house (we are told she does not like people in her home); it is Alex’s lack of knowledge of autism that appears to make him acceptable to Linda. Alex is allowed in by

Linda because he does not pre-judge, he does not come with prior knowledge, he has not seen ‘that film’ and so Linda is a somewhat confusing person, not a label.

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It is possible that my engagement in exploring autism leads me to a particularly open decoding of the film, resulting in these ideas that Snow Cake undermines the typical definition tropes and reification of autism found in fiction film, but these ideas are much easier to see in Snow Cake than in many other fictional cinematic versions of autism. The focus group felt that Linda represented a check list of typical autistic traits that left her somewhat over determined, but the group also explored the idea that her character, including her autism, was complex and not simply a stereotype. Myria noted that she felt

‘there was some smooshing of more than one person into her character’ and Brian returned to this question a few minutes later in the discussion with the question ‘did they overload it?’ to which there was some consensus that they did. But these thoughts sit next to the idea that she was both an adult and a woman, which is not typical of cinematic representations of autism, and that she had an emotional complexity to her that despite the over-determining of autistic traits, for the focus group, did take her beyond a prosthetic backdrop.

In what I would suggest is a very Canadian sense, the suburban and the Other meet at their physical and neurological edges in this film. Wawa can be seen as a marginal community on the edge of Canada’s civilizing mission, placed on the TransCanada

Highway as another repeater station of the East/West pulse, and autism as manifest in

Linda sits at the limits of this liminal community, as a set of behaviours tolerated and partially understood, but ultimately always of another order and outside the mainstream.

The town is the isolated location in which Linda is its most obvious and metaphorical resident. Linda also expresses her Canadian identity by insisting on eating cakes of snow

(hence the title of the film), and Alex becomes the eponymous survivalist and adventurer

232 as he finally, at the close of the film, continues his journey west having been touched by and left his touch on this marginal town.46 There is, at the close of the film the image of

Alex, ready to move on with his journey West, and by implication move on with his life.

Rickman says of Alex, that he ‘finds himself at the end of the story’ (Berlinale Press

Conference).

This coming together of Wawa, the liminal town, with Linda, its liminal resident, and the gently teased definitions of autism give the film enough of an ethereal quality to challenge any sense that normalcy can be understood or achieved. Alex even offers the idea to Vivienne at the start of the film: ‘look out for the ordinary ones.’ The closest to normal that we get in Snow Cake is probably Linda’s rather gentle but backgrounded parents, and the nosy neighbour who has seen ‘that film’; beyond these few characters the sense of the normal floats away from possibility, and Linda could be viewed not as the token other, but the most obvious image or version of everyone. For the focus group, this image of oddness was central to the discussion with the idea being raised that Alex was in many ways more ‘odd’ than Linda.

Mel compared the film to the Cohen Brother’s film Fargo, that is also located in an isolated small town peopled with otherness and snowy landscapes, and Brian had noted that ‘I loved the fact that the other characters were as odd or more odd than Linda.’ This sense of an othered world in the film came back again and again for the group, notably after discussing why Linda had taken Alex in. Brian also acknowledged that this otherness started with the meeting between Alex and Vivienne, noting that someone called Vivienne a ‘one-off’ at the funeral. He offered the following: ‘that Vivienne takes

46 The screenwriter of the film, Angela Pell, has an autistic son who likes to eat snow, and this was the inspiration behind Linda’s snow eating habit (Berlinale Press Conference).

233 up as much space in our hearts and differences are as great, yet there’s no label for her. I mean being a one-off is a great label.’ Here Brian placed a certain fluidity in his reading of the film’s approach to labelling, that the eccentric Vivienne and odd Alex do not get labels but Linda does, and Brian read this as Linda choosing to describe herself in terms of autism.

The challenge in Alex’s experience of healing is that Linda and her autism becomes the disability backdrop to his narrative journey. As we have encountered in Tongues and partly in Horses Hockey and Haloes, as well as numerous cinematic versions of autism such as Mercury Rising, disabled characters provide the site of, or stimulus for, change in the non-disabled while remaining relatively unchanging themselves. Stuart Murray offers the following criticism of the film: ‘Linda is seen to be sufficiently inflexible (ultimately her concerns are who will take out her garbage on Tuesdays) to be contained within a conventional narrative of personal development’ (Representing Autism 126). Critically the personal development that Murray refers to here is Alex’s not Linda’s. He further notes that Snow Cake is an example of autism fitted into existing, generic narrative concerns, that autism in this case is ‘narratively enabling’ (122, 123). Although it could be argued that Linda does develop as a character in the film, as she makes space for Alex and allows guests back to the house after the funeral, her personal journey lacks the significance of Alex’s coming-to-terms narrative that mostly takes place in his confessional relationship with Maggie.

Here, then, Snow Cake is exposed to the same criticisms of prosthesis or aesthetic nervousness that can be made of Tongues and Horses, to the idea expressed by Mitchell and Snyder that narrative often relies on disability and its transgressive and

234 transformative potential, but leaves the disabled subject excluded from narrative development (Narrative Prosthesis 8). In part, this criticism is a calling for the disabled subject to be placed at the heart of the narrative, not as is so often the case, just as partially represented device or backdrop.

However, the challenge in this question of centrality is what happens to our concerns about stereotyping when an autistic character is the central consciousness of a narrative? Linda is not the central character in Snow Cake; this is a role clearly filled by

Alex, but if she was in this place, could her character avoid the problematic of standing in place of autism; of being seen as a reductive and complete definition of the disability? In giving a disabled character this narrative significance and centrality, the problems of prosthesis may be addressed but the other key disability concern comes front and centre, of the specific, singular representation being perceived as all that that disability is, of this one image being the stereotype of a particular diagnosis.

As I noted above, the focus group did feel that Linda represented a check list of typified autistic traits and that she contained a few too many of these. Between the group members we listed off a number of these diagnostic moments that included a desire for deep pressure, problems with a gluten free diet, hand flapping and stimming. For Myria, there was even some confusion over her basic diagnosis as Myria talked of Linda as aspergic because of her verbal skills (17). This led to a discussion on the formal difference between autism and asperger and how Linda was actually defined in the conversation between Maggie (in place of expert) and Alex (as person new to autism), as autistic and high-functioning. In acknowledging that the focus group all had some prior experience of autism and that Myria herself has a therapeutic background, this debating

235 and confusion over Linda’s label challenges Draaisma’s sense that by 2006 to say nothing of 2012, the general public has a clear sense of an autism diagnosis.

Having noted these critical observations by the group that the film overlaid too many autistic traits in one person, I should also acknowledge that both Brian and Janice felt that the representation of autism was believable and other members of the group did not challenge this. Brian noted that ‘I don’t think it misrepresents disability,’ and Janice felt that the film had got autism about right.

In a challenge to the idea that Linda was just the disabled surface for Alex’s healing, the group also discussed in some depth the nature of Linda’s character beyond her autistic traits and specifically her emotional responses to her daughter’s death. As part of her case for Linda as reductive stereotype, Draaisma offers the following: ‘there is a scene in which one of the neighbours offers her condolences, saying ‘I’m sorry you lost your daughter.’ Linda answers: ‘She’s not lost, she’s dead’— autistic people are terribly literal’

(1477). Draaisma in this isolated quotation casts the impression of a film that captures autism through Linda as literal and lacking emotion, yet for the focus group Linda’s expressions of emotion and responses to her daughter’s death were a key part of her character and were responses that came through, and illustrated, her autism, but were not limited by it. I initially made the point that one should not confuse an alternative way of expressing emotion with a lack of emotion. For Mel, the moment of identifying her daughter’s body stood out as an example of this. She noted that ‘the body language was so striking to me in that moment and it really resonated, kind of like without any thought of social intervention and how we’re expected to behave, how would you really want to

236 behave in that moment.’47 This led Brian to note that Linda asked Alex if it was necessary to cry at a funeral. From this the group discussed how Linda via her autism was in a position to respond in her own way to both the death and the funeral. These complex images of Linda’s responses to Vivienne’s death point to an alternative reading of the film that did not look for a reductive autistic stereotype in its central disabled character. In these thoughts, the focus group points to the danger of the critic finding what they are looking for in a disability representation and the danger of pathologizing Linda’s actions in the film as ‘autistic’ and not expressions of her unique character that includes her autism.

Following the discussion of her emotional responses to her daughter’s death, Brian raised the question of why Linda had accepted Alex when it was clear that most of her neighbours were not acceptable to her: ‘I was curious as to why Linda responded so positively to Alex. What was it about his behaviour that made it okay for her to have him live in her house and hang out with him?’ As I noted above, the group sensed that it was his lack of judgment that made him acceptable. Janice offered the idea that ‘he viewed her no different than all the other quirky people that he came into contact with,’ and Brian noted that Linda taking in Alex ‘may be a plot device, but I think there was something in who he was, something important to see about how Alex was with Linda.’ He went on to suggest, ‘The brokenness of Alex allowed Linda to be able to relate to him. Because his brokenness meant that, his brokenness from Vivienne’s death, along with other things allowed him not to be typical.’ Brian also noted in his journal, ‘who needs whom?’ This sense of Alex as a troubled, needy character arrived early in the film for Brian. He

47 In her journal Mel further notes that ‘when she sees her daughter’s body you can see distress only through her body language’ and she also quotes from the film: ‘nobody knows how I’m feeling because half the time I don’t have a clue myself.’

237 described the first meeting in the diner between Alex and Vivienne as the first identifying of Alex’s needs:

What I noted for me was that Vivienne’s behaviour seemed to me, if I become academic, was to knock Alex off balance and, in doing that, totally attuned to him. Totally created this relationship with him that was totally in sync, but not respecting in some ways his needs for silence and his need to be left alone, but to actually give him what he was asking for.48 The experienced therapist, then, read this scene as therapeutic moment, which led me to ask: ‘And what does Alex do to Linda?,’ to which Brian replied ‘Oh, same thing.’ Here, via the lens of the therapist, is the image of a film that takes the viewer on a journey of mutual healing and change, but in the picture of Alex’s more significant journey, this leaves the film vulnerable to the criticism that Linda is still fundamentally the passive backdrop to the healing experiences of Alex that start when he meets the eccentric

Vivienne and continues with Linda and Maggie.

For Murray this makes Snow Cake an example of a ‘dysfunctional character requiring interaction with an autistic presence in order to change,’ and therefore a classic example of disability as prosthesis (Representing Autism 124). But, in the mutuality of change, of development, that Brian sees in the twined experiences of Alex and Linda, something more complex than prosthesis may be happening. Later in our discussion, I described the concept of prosthesis and Brian offered the following response: ‘I would change the language. I think if it is always about healing the other [non disabled] then there’s something wrong with it. If it’s about it being a reciprocal relationship and that both benefit from, then to me it’s a universal story of connectedness.’

48 Here I read Brian’s comment on being ‘academic,’ not as him attempting to enter the role of academic film critic, but of acknowledging his own psychoanalytic training and practice, and viewing the character of Alex as therapeutic client.

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This was fundamentally a conversation between myself and Brian and it should therefore not be viewed necessarily as the consensus view of the focus group as a whole.

Brian’s position could also be read as an indicator of just how sedimented the idea of disability as backdrop is in disability representations. The argument being that the image of disability as unchanging, and disability as site of healing and moral test for the

‘normal,’ is so well established and works at such a level of cultural normalcy in film, that its effects are not obvious to even the most careful or engaged viewer. In this sense, disability as prosthesis, as that which completes the narrative of the non-disabled, appears as an example of the deepest level of hidden meaning and ideology in the cinematic text.

Prosthesis (or aesthetic nervousness) becomes an example of how dominant ideologies become subsumed in cinema, of the hidden connotational messages that I noted in discussing Stuart Hall’s theories of encoding/decoding (see chapter 2 and

“Encoding/Decoding” 133-134).

To accept this image of the sedimented nature of prosthesis, of it being the hidden ideology of ableism, carefully disguised within a healing narrative, points to a particular critical approach to the cinematic text. It creates a picture of the viewer as passive victim to cinematic ideology. Challenging this passivity is the collective discussion of the engaged viewing group that not only questioned the idea of Linda as only passive backdrop, but also expressed original ideas about Linda’s role in the film. Though Snow

Cake can be very successfully viewed through the lens of stereotype and disability as backdrop, it can also come to life as a critical engagement between autism and normalcy.

The focus group’s discussions, if nothing else, point to how Snow Cake as a film and story is open to a more complex debate than the most obvious forms of disability as

239 prosthesis seen in narratives like In Tongues of the Dead and Mercury Rising, and is also present in documentary representations such as the two episodes of The Nature of Things that are discussed in the next chapter, that capture autism as an object to be encapsulated and feared.

Snow Cake also helps to illustrate the critical challenge that exists in attempting to explore what a disability representation is ‘doing.’ As I noted in Chapter Two Dolmage asks us to think on how ‘disability studies should teach us that no meaning-making is ever that able’ and as I had hoped, in the discussion of Snow Cake, a critical picture emerges that is not more complete or final than an academic disability studies critique, but remains more discursive, fluid and not closed to other and varied interpretations and responses (8).

The engagement with Linda and her emotions; the image of Alex as otherness; the general oddness of Wawa and its people; and the need for mutual healing that emerge from the focus group conversation all question the picture of Linda as dull surface for someone else’s journey, and that she is a stereotype and simplistic representative of autism. In introducing the aims of his New England viewing group Phil Schwarz notes his wish to avoid representations that ‘display a character’s autism as a novelty’ (258). He cites both Rain Man and Mercury Rising as examples of this. Through the interpretation of the focus group’s reflections, Linda as autistic, and autism in general is rendered not as novelty or representative example, but as an aspect of a complex character.

In closing this discussion of Snow Cake, the critical analysis of Canadian fictional representations of autism is in one sense complete. As I have already noted, there was/is a limited pool of Canadian representations to chose from. There has yet to be a Canadian equivalent to Curious Incident that has a singular autistic or aspergic character at its heart.

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One temptation therefore is to look for representations that come from beyond Canadian borders, but to which the Canadian market is clearly exposed. In the case of the next chapter, I have clearly made this choice with the inclusion of the American/British documentary The Horse Boy, but in trying to find a manageable framing for this project, in the context of working with fiction, I made the intentional decision to stay within the limits of Canadian authored texts and a film made and set in Canada.

Autistic speculation in Jane Urquhart’s The Whirlpool

A potential way to expand the category of Canadian autistic fiction would be to follow Bottomer in her retrospective finding of autistic characters in historical novels and contemporary fiction that does not deliberately use the language of the spectrum. I do not wish to do this exhaustively, and I wish to recognize the pitfalls illustrated by Bottomer’s simplistic diagnoses in Austen’s work, and the complications of seeing Joan in Gowdy’s

Sandman as autistic, but in exploring the relationship between autism and Canadian identity, there is some value in looking at, at least one example of speculative labelling.

Approaching autism from a very different place than any of the above texts, Jane

Urquhart’s 1986 novel The Whirlpool does not deliberately acknowledge the autistic nature of any of its characters and as such, the discussion of this novel comes from a greater place of speculation than the other texts being considered here. Though Atwood, nor Crake himself, admit to a diagnosis of asperger in Oryx and Crake, the terminology is present in the book. The Whirlpool, however, is not an example of deliberate autistic construction and awareness raising that can be argued for Snow Cake and appears a clear, if misguided, intent in Horses Hockey & Haloes. Urquhart’s novel illustrates how autism

241 can work again as metaphor, can be used as character, plot device and symbol, but in this case, not in connection with contemporary technological fears.

Set in 1889, Urquhart’s novel pre-dates the modern definitions of autism by some fifty years and its arrival in popular consciousness by approximately one hundred years.

To start, then, with a defense against the criticisms that Hacking and I levelled at

Bottomer, I need to acknowledge that Urquhart’s characters would have had no knowledge of the labels autism or asperger, but in contrast to Bottomer’s labelling of

Austen’s characters, it is possible to speculate that Urquhart herself had a sense of what she was doing in the construction of Maud’s distant and initially non-verbal child, that she as author writing in 1986 knew well that she was making an autistic character.

Critical reception of the novel also implies that Maud’s child, who never gains a name in the text, is autistic. Margaret E. Turner in Imagining Culture: New World Narrative and the Writing of Canada suggests that ‘Maud displaces her personal and intellectual conflict over containment from the floaters to her autistic son’ (103). For Turner the status of the child as autistic is not up for debate; she identifies the child as autistic in this statement, but does not play any speculative or justifying games with this idea. John Moss, Marlene

Goldman and Laura Hancu also label the child autistic in their essays on the book and

Maud’s child is not the only autistic character created by Urquhart. Sylvia Bradley in A

Map of Glass is also thought to be autistic (Moss 79; Goldman 105; Hancu 5; Lorre 185).

Critically, much like Bartleby in Melville’s short story, Maud’s child also remains distanced and othered in his description throughout the narrative; he is not, unlike

Austen’s character, typical of his time or community.

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Set in and around Niagara Falls, the novel explores issues of history, colonialism and the role of language to name and contain the sublime and wilderness. History exists below the surface of the novel as symbol in the battle ground from the war of 1812 that lives under Maud’s funeral home, and the reader is regularly reminded of the anti- wilderness rational that exists in the form of the factories on the American side of the falls

(Urquhart 83, 100). The whirlpool itself, which consumes and spits out bodies (the floaters) to be buried by the widowed Maud, is a metaphor for the limits of language, and is a vortex that illustrates the limits of the civilizing, naming mission of colonialism to contain the sublime and the Other. Turner notes that ‘the novel’s characters are all engaged in recording new world experience and discover that their borrowed discursive forms are dysfunctional in this place’ (94). For Marlene Goldman, ‘taken together, the novel’s central section and the frame story concerning the last days of Robert Browning, effectively portray the difficulties attending the translation from the old world to the new’

(83). In Patrick, the disgruntled civil servant and want-to-be poet, we have the poetic character who is struggling with this relationship between the unnamable wilds and its negative taming, and in Maud’s child we have the one who appears, initially at least, comfortable to remain in the pre-symbolic real, in a present separated from concerns of history and naming.

On first meeting, we learn that the child is ‘stiff-legged, unco-operative, responding neither to coaxing nor command’ (Urquhart 47). We learn of Maud’s frustrations, that

‘regardless of her actions, of the brightly coloured objects that she dangled before him, he remained bent over a small toy rabbit, now almost lacking in woollen fur, stroking it rhythmically,’ and she reflects on his ‘untouchable mind’ (62, 65). This initially silent and

243 uncooperative child is seen to be drawn into the world of language through the course of the novel. Maud attempts to enunciate words in the hope of communication:

She noticed he was beginning to rock slightly as he caressed his toy. “Gar- den,” she said to him slowly, moving her hand at the end of her arm with the palm turned upwards, back and forth across the lot behind the house. “Ga-a-a-r-den.” The Child gave no indication that he was aware she was speaking to him. (64) We move from this moment of failure to her more dramatic attempts at communication. As Maud forces his eyes to face the sun, he says his first word ‘sun’ but we are also told it could be heard as ‘saawn’ (67). Reading this moment through a

Lacanian psychoanalytic lens, as I suspect Urquhart does, the idea of ‘saawn’ implies a cut or separation from some concept of the real, as the child starts to join the symbolic order represented by the other characters in the novel. However, the child’s comprehension of language comes into question as we are told his speech is repetitive.

When Patrick, the character most clearly struggling with the divide between the rational historic and the wilderness, first meets Maud’s child, the child is repeating the word

‘nothing,’ ironically hinting at autistic echolalia (the repetition of words without apparent reason or intended meaning), using the very word that captures echolalia’s meaning.

Towards the end of the novel Patrick draws the distinction between ‘I’ and ‘you’ for the child, finalizing the child’s move into the symbolic and his separation from his imaginary unity. After this moment, Patrick tells the child that: ‘now I am going,’ to which the child replies ‘now you are going,’ confirming that the child has understood this critical civilizing linguistic distinction that marks the Western concept of the autonomous subject, and therefore has become a symbolic consciousness and joined the full language community of the novel. This moment also has its diagnostic, autistic sense, in that prior

244 to this moment, the child’s autistic self could be seen to be struggling with a ‘Theory of

Mind’ problem, of not having a sense of another’s conscious processes.

Urquhart shows, however, that this move into effective language initiated by Patrick left Patrick with sense of discomfort. Goldman offers the following reflection on Patrick’s discomfort:

Although the boy successfully makes the distinction, an aura of disappointment hovers over this achievement. Afterwards, Patrick muses to himself: ‘Self and other. That’s the way it always was. To merge was impossible except for short periods of time. Impossible and undesirable’ (188). His remarks seem sensible, the product of a rational mind, but the narrator clarifies that he has failed because, despite any assertions to the contrary, he longed for closeness but he was never able to break down the wall that separated him from others. (105) Patrick’s need to impose the symbolic on the child illustrates his own poetic limits, his inability to comfortably witness the sublime pre-discursive wilderness moment that was the child’s consciousness. This failure to integrate with the landscape around him, to be in the poetic and not the historic, ultimately leads to his own death in the whirlpool, in his wish for the ultimate return to the real (Urquhart 223).

Having discovered language, Maud’s child discovers order and starts ordering and re-arranging the objects of Maud’s life. He re-orders Maud’s ‘boxes of the dead’ that contained the possessions of the floaters taken out of the whirlpool: ‘Now the child had caused all the objects that surround her, all the relics she had catalogue, to lose their dreaded power’ (213, 215). In this moment of imposing his own order, the son makes it impossible for the mother to find the order in these objects she was one day hoping to find. For Goldman, ‘her son’s gesture of emptying her museum demonstrates that these

245 fragments were never part of some greater, unified whole, and that reason’s image of totality remains an illusion in the world of experience’ (110). At the end of the novel, though the child has emerged into language and order we see in his contrast to his mother’s ideas of order, he still remains something of a symbol of otherness and it could be argued that something of his autism also remains.

Autism can be inserted into Urquhart’s novel as part of a complex symbolic map that tracks the move from the poetic imaginary to the rational historic, from the wilderness and the sublime of Niagara’s past and by implication Canada’s past, to a more modern rational, tamed, measured, surveyed present that casts Canada in the same light as the factories that can be seen on the American side of the falls. Maud’s child and

Patrick’s journey in the narrative parallel each other as they struggle with the problems established by Browning in the prologue of how to find the words for otherness and wilderness without limiting and taming it, of the fear that even poetry cannot mark a return to some unity. Autism, then, is used as a device in a debate between pre-symbolic unity, wilderness, the sublime, and its apparent opposite, the rational modern, ordered industrial, and colonial.

Autism works here as an aspect of Maud’s child, if we can see the child as symbolic of a challenge, and by implication autism’s challenge, to ableist ideas of the rationality and unity of normalcy. Autism might also work as a reminder of the inability of the discursive to completely capture and totalize the other, but if autism is dropped into this novel as an example of academic cleverness and reductive trope, it potentially exploits the idea of autism to narrow symbolic effect. This danger is illustrated by Hancu when she suggests that the child’s role is that of saviour. Taking an isolated phrase from Urquhart’s

246 text, of Maud’s observation that her child was ‘possessor of all light,’ she casts him as

‘confined by autism,’ but also ‘this boy, a haloed Christ-type’ (5). Here, the mystic and the role of saviour become uncomfortably bound up with autism and the complexity of

Urquhart’s message is in danger of being diminished alongside the representation of autism itself.

Urquhart, does not, as I have already noted, overtly identify the child as autistic and maybe autism does not need to be overtly identified here at all; the child and his experiences are sufficient without the speculation of the label. But viewed through a careful, sensitive disability lens, autism can emerge in The Whirlpool as part of what I see as a critique of rationality and by implication of normative views of the primacy of conventional discursive communication, or at least what might be lost if we work only with the written or the spoken.

Conclusion

The fundamental challenge of this chapter that has focused on fictional representations has been the limited number of Canadian originated or located stories of autism. As I have noted there is not, as yet, a Canadian equivalent to Curious Incident; there has yet to be a Canadian authored text that speaks fundamentally through the voice of an autistic individual. Rachel in Player One gets a little closer than others. She is the most voiced character in Coupland’s short novel and her consciousness as herself and

Player One place her at the heart of the plot, without, I would argue, her autism becoming overly deterministic of what autism is. The critical challenge in Player One, however, is a subtle version of the discomfort of Tongues, in the idea that Rachel has some form of

247 divine connection and that her autism or autistic symptoms were briefly cured by God and sex. In contrast, Atwood’s novel creates a deeply uncomfortable idea of aspergic responsibility for all that is worst in our present and near future. Though asperger is not the central focus of the novel and Crake/Glenn is never overtly labelled, in the descriptions of ‘Asperger U. and in naming the character after Glenn Gould, an increasingly strong sense of an aspergic responsibility for disaster emerges. Imagining the experience of reading the novel as a person diagnosed with asperger, it is difficult to avoid an image of discomfort and frustration at the novel’s implied links between disability, and social dysfunction and decay.

In the contrasting experiences of Snow Cake, between the disability studies position of Murray and the stereotyping sense of Draaisma, and the exploration of emotion, healing and otherness discussed by the focus group, the challenges of the critical task becomes clear. Notably, the need to listen to multiple voices from multiple places when attempting to find meaning in a representation, and recognize Dolmage’s point that no meaning making is that complete. Though Snow Cake does not place Linda at its heart, its relatively judgment free, un-sensationalized image of autism located within a narrative of gentle otherness, offers a more sympathetic image of autism than Atwood’s work and avoids the sentimentalizing of autism and traditional family structures found in Horses,

Hockey and Haloes. Snow Cake does however remain a text that can be read in varied positive and negative ways depending on one’s critical expectations and framework.

In concluding this review of autistic fiction with The Whirlpool, I acknowledge the dangerous game of retrospective, historical diagnosis, of the game of wanting to find autistic traits to demonstrate the ability to ‘read between the lines,’ but this is also the

248 recognition that autism does emerge as idea and metaphor outside of specific labelling and that its metaphorical power goes beyond contemporary technological fears. There is also the recognition that within the limits of Canadian fictional representations of autism, this speculative process becomes more tempting. The speculative assigning of an autistic label to Maud’s son also highlights the potential dangers of critical reflections of autistic representation further reducing and stereotyping what autism is. This can be seen in

Hancu’s somewhat awkward image of the ‘haloed Christ-type,’ but is even more clearly present in the various understandings of aspergers that emerge in critical reflections on

Crake’s diagnosis. The simplistically negative image of autism that emerges in academic criticism of Oryx and Crake, in Bouson’s and Barzilai’s ideas of asperger being a condition of ‘lack of empathy’ and Crake’s asperger being responsible for his ‘utterly affectless approach to human life’ not only further reduces and pathologizes Atwood’s image of asperger, but shows little sensitivity in the critical task to the actual lived experience of autism and asperger (Bouson 149; Barzilai 193).

As I have argued throughout this dissertation, if, as I believe, biographical and fictional representations of autism have consequences for the lived experience of autism beyond the confines of any particular representation, then the same responsibilities faced by authors are also faced by critics. If as King argues we make our world in stories

(narrative), then the performative consequences of making disabled characters places a responsibility on both writers and critics to be aware that the lived experience of a disability label is affected by all forms of representation. In both the fictional creation of autism and in its critical reflection, there is the obligation to be present to both debates

249 about what autism is, and to be thinking about what autism would feel like through the lens of these representational works.

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Chapter Five - Responses to Autism: Support, Healing and Journalism

What we believe about a person with autism is the lens through which we greet and interact with them. (Jonathan Alderson, Challenging the Myths of Autism 7)

In one sense, every text, film, documentary and fictional character that has been part of this study has been a response to autism, in that these representations emerge from and engage with the labels of the autistic spectrum and both draw on and create the cultural and social phenomenon that is ASD. This is the case not just for the deliberate constructions of autistic characters in fiction, or even the biographical accounts of autistic life, but the retrospective and speculative assigning of labels can also be seen as a response to the social status and cultural presence that autism and asperger now has.

However, here in the final chapter of this project, I want to look at representations of autism, and discussions of autism that are responses in a more deliberate sense. Initially this chapter will explore how the focus group made sense of an extreme response to autism in Rupert Isaacson’s decision to take his son to Mongolia to ride horses and meet with shaman, captured in the documentary film The Horse Boy. This question of how parents and carers respond to diagnosis and the image of an emerging social crisis is also central to journalistic representations of autism in two episodes of the long-running CBC documentary strand, The Nature of Things, and in a major series on autism published in

November 2012 in The Toronto Star. Both these television programs and the newspaper series also explore possible causes and explanations for autism.

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The idea of response also connects to books that offer direct guidance to parents and carers on how to support autistic children. To offer a Canadian example of this work, this chapter will explore Jonathan Alderson’s Challenging the Myths of Autism, which not only attempts to change received opinion on the potential of autistic people, but also critiques much existing therapy for autistic children. Alderson’s book offers a practical guide to autistic intervention and in the process, a critique of current understandings of autism. A similar critical approach can also be found in the full-length American documentary Loving Lampposts which the focus group watched in our sixth and last meeting. Lampposts also marks another example of parental response, that much like The

Horse Boy and biographical accounts such as Carly’s Voice, point to how the discourses of autism are created by those with the skills and power to create discourse, as a response to their own experiences of the spectrum, typically in their children. The idea of response, then, covers both ideas of therapy and support, understood as the practice of interventions; the responses of parents upon the diagnosis of their children; but also how

Canadian journalism and television has been part of the construction of autism as contemporary phenomenon.

In contrast to the fictional and biographical makings of autistic characters that typically create the image of a single person with autism, much of the work looked at in this chapter addresses autism in a more general sense. In the singular making of an autistic character or exploration of an autistic life, there is typically a degree of defining of autism as a condition, and in this, a critical concern for stereotyping is present, specifically the concern that one representation stands in for all that a particular disability can be. In fiction and biography the defining and potential encapsulating of autism is, in a

252 sense, a by-product of the process of character construction. In the responses addressed in this chapter, notably in The Nature of Things television programs and the series in the

Toronto Star, autism is more deliberately and consciously defined as object; to take on this task of deliberately informing the public. Within journalistic and interventionist texts that do not speak of a specific, singular autistic person there is a more deliberate conscious making of autism. This image of deliberate making, then, points to Alderson’s simple warning about the practices of representation creating beliefs about autism, and lenses through which to view autism, that have consequences for autistic people. In considering these responsive representations, then, there is a need to note the journalistic authority of the CBC and of a major daily newspaper, and their consequent responsibility for how autism is perceived and addressed in Canadian culture.

The Horse Boy and the limits of response

Having acknowledged this idea that texts that offer therapeutic responses to, or journalistic documentary representations of, autism, and are typically engaged in the generalities of the condition, the first representation I want to explore in this chapter creates something of a bridge back to the biographical accounts discussed in Chapter

Three, and limits itself to the story of one autistic child, but this is a representation that clearly fits into the category of response. The Horse Boy is the story of Rowan Isaacson as told by his father Rupert, and represents one of the most surprising responses to autism to be captured as both a book and documentary film. In contrast to the pragmatics of debating home and school therapies that are the typical territory of personal biographical accounts, The Horse Boy documents a most radical approach to helping an autistic child.

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The feature length documentary film follows the family’s attempts to address their son’s tantrums and lack of toilet training by travelling to Mongolia and riding on horseback visiting various Shamanic healers.

Though this film is not Canadian (the father is English and the family now lives in

Texas), it was included in the focus group research to provide an example of a dramatic response to diagnosis, and it also acts as an example of the type of international autistic content that the Canadian public is exposed to. The film received its Canadian premier at the 2009 HotDocs documentary film festival and received a broad DVD release in

Canada.49 As an indication of the popular interest in autism and the specific availability of this film it worth noting that it is available at my local public library, and before its closure in the autumn of 2011 it could also be found at my local DVD rental store.

In working with the ideas and expressions of the focus group, I am very aware that there is a temptation to create a pattern of critique and response that contrasts the focus group’s thoughts with an image of ‘conventional’ disability studies critique; that is, to offer examples of how disability scholars have read a particular representation and then illustrate, via the focus group’s comments, how a ‘real’ audience sees things differently. I have done so to a degree with Snow Cake in the previous chapter, contrasting the idea of

Linda as passive backdrop, which is a criticism that has been made of the film (see

Murray, Representing Autism 124-27), with the more empathetic readings of the focus group’s members who fundamentally reject this critical narrative of prosthesis. The danger in this approach is to consistently privilege one method over the other and assume that the ‘real’ audience has come to the ‘real’ meaning of the text. To do so would be to

49 The film’s original title was Over The Hills and Far Away, and this is how it is referenced for the 2009 HotDocs festival. It was re-named The Horse Boy, to match the title of the book.

254 fall back into the trap noted by Radway and Dolmage, of thinking that any particular reading of a text is complete (8).

I highlight this challenge here, because in looking at The Horse Boy, there is a temptation to find ways of contrasting the sort of critical approach captured by Murray when he describes the film as ‘the latest example of a narrative in which spiritual ‘healing’ counters the presence of an invidious and crippling autism,’ with ideas from the focus group that empathize with the parents’ wish to do anything they can to support their child

(Autism 94). Though I think Murray is somewhat oversimplifying the film and his comment is worthy of critique, to simply contrast it with responses from the focus group that selectively create a counter argument of positive parenting would be to misrepresent the focus group’s work with this film and deny the complexity of this representation.

Murray’s comment resonates with aspects of the focus group’s conversation and it also highlights the concern about autism texts that place parents in the position of required heroes. Yet the focus group also found more in the film than simple criticism or support for heroic parental intervention. In working with the focus group’s responses to this film I want to start to explore the complexity of what it means to respond to, or intervene with, autism.

The film opens with typical scenes of parental distress at the experience of diagnosis, and home video footage of a distressed child and exasperated parents. These are familiar images from any number of YouTube or television documentaries on autism and offer a similar image of autism as those found in both The Nature of Things episodes.

The Horse Boy diverges from this conventional image in the family’s or more specifically

255 the father’s decision to attempt to address Rowan’s problems using shamanistic healing practices in Mongolia, and to travel around Mongolia by horseback.

Andrew Solomon suggests that ‘the story of middle-class and affluent parenting of autistic children is an interminable saga of tilting at windmills’ (Solomon 258) and The

Horse Boy would appear to capture the most extreme example of this. In order to capture the focus group’s response to this dramatic moment at the point in the film, some twelve minutes in, where the father, announces his plan to go to Mongolia, I stopped the film and asked the focus group members to write down their immediate responses to this extreme attempt at an autistic intervention. The ideas that emerged from this exercise point to the issues that came up in the conversation that we had at the end of the film. For Myria and

Janice, there were questions as to why horses appeared to create a connection for this particular child. Janice noted, ‘Amazing connection between father and son and horses.’

In addition to this intrigue as to the connection between autistic child and horse, the group’s key focus at this beginning moment in the film was on the parent’s motivation in relation to the journey, Rowan, and his autism. Brian offered: ‘not really liking either parent, but wanting to. Exploitative of Rowan – don’t film it. Sensationalist. Wrong attitude,’ and Myria offered: ‘Parents searching for a cure for autism makes me leary and yet I can understand where it comes from. Wouldn’t I do anything to make my child well also?’ These concerns about motivation were repeated in the group’s journals and in the cluster poems that we all made at the end of the conversation. Brian noted in his journal:

‘dad’s desire for R[owen] to be other than he is,’ and Myria noted: ‘this is how I see what his parents are doing – wanting things to be other than they are – for Rowan to be different,’ and in her cluster poem, the line ‘parents wanted him to be cured’ came twice.

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Mel also wrote: ‘does he ever say/realize this trip is as much if not more for the parents than for Rowan?’ Janice in particular was also concerned to acknowledge the parents’ struggle with disability, noting her own son’s diabetes and her initial wish for it to ‘go away.’ This image of the unknown, or loss of understanding in the face of disability, of the wish for autism to become absent, points to the specific challenges faced by parents in the moment of diagnosis or in the presence of behaviour that comes from beyond their own experiences.

In these thoughts, the group points to the challenging image that the film presents, of the understandable wish to end suffering for their child and their family, of the wish for

Rowan to be toilet-trained, but these wishes get bound up with the twin problems of a possible desire to cure or eliminate Rowan’s autism, and the image of the father as larger- than-life hero who will do anything to solve a disability problem. As I noted on my index card, the father, who is the clear driving force behind this project, places ‘potentially impossible demands on other parents to be such heroes.’

This picture of parents willing to go to great lengths to ‘cure’ their child exposes the film to the sort of criticism offered by Murray and other disability scholars that stories of autism (and disability in general) construct disability as an enemy to be defeated by non- disabled heroes (Autism 94; see also Chapter Two). This image of heroics also appears in biographical accounts such as Carly’s Voice as we read the story of the father’s attempts to provide support for his daughter, and is clearly present in Horses, Hockey and Haloes as the autistic J.J. acts as backdrop to the efforts of Sam and Eve (see Chapters Three and

Four). However, desire and pursuit for cure and recovery also need to be placed in their social contexts. The social pressures for normalcy and habits of judgment that surround

257 parents of disabled children cannot be discounted from any discussion of their actions and responses. The image of an ableist matrix that casts disability and particularly the disabled child as tragedy, and as Fiona Campbell notes, as ‘ontologically intolerable,’ sits behind images of autism response (Campbell 109). This backgrounded context of normalcy points to Titchkosky’s critical idea that ‘it is impossible to experience disability outside of our relations with others’ (Disability, Self and Society 4-5). In acknowledging the social context of disability, it is worth reinforcing that the focus group, all of whom have experience of working with an autistic child, were all uncomfortable with the image of ‘cure,’ with the idea that it would be desirable to eliminate completely the autistic aspect of an individual.50 Universally, though aware of the challenges of autism, no one in the group expressed a wish to eliminate autism.

Debates about ‘cure’ and the role of social pressure also point to the difficulty in identifying the difference between expression of autism and identifying a child in distress.

In a scene, early in the film when Rowan is having a tantrum at the zoo, we witness this conflict between respect for a child’s autistic differences and wish to change distressing behaviour. Amid images of parental self-consciousness and a sense of the judgment of others there emerges the debate between intervention and expression. This scene can be read as an example of ableism and the social expectations of how children should

‘normally’ behave, but this scene is also clearly a moment of genuine distress in the child.

The problem here is one of seeing the difference between legitimate autistic expression and a child in genuine distress and of the wish to alleviate distress without suppressing autistic identity. Early in our conversation Mel raised the question: why would one want

50 I should also note that this moment that Janet, the grandmother of the child we had all worked with, was absent from this meeting and she, with her direct familial relation to an autistic child, might have offered a contrasting opinion.

258 to change Rowan? But she also noted that his lack of toilet training and tantrums were a

‘challenge for Rowan’ and that to ‘see those things subside would be a beautiful thing.’

Mel’s point of interest and empathy is clearly focused on the child and what challenges and distresses him, and in this she illustrates the conflict between autistic identity and cure. Within concerns over cure, then, there is also the understanding of both child and parents in distress that can in part be laid at the door of an ableist society, but ableism does not address the physical experiences of the child or in this case completely capture the family’s challenges with Rowan’s behaviour and lack of toilet skills.

In trying to find a form of words that expresses the wish to alleviate distress, but not eliminate identity, the film and the book talk of the difference between ‘healing’ and

‘cure.’ At the end of the film the father offers the following: ‘did Rowan get cured of his autism? No. Rowan is still autistic. Did Rowan get healed of the dysfunctions that went along with his autism, the physical and emotional incontinence, the inconsolable tantrums, the isolation from his peers? Yes.’ Kristin Neff, Rowan’s mother, also made the point that she has no interest in changing his quirkiness. Here, then, is a picture that is much more complex than simple issues of cure and links well with Mel’s image of working in

Rowan’s interests rather than a social curative interest. In terms of the group’s general response to these ideas, in our conversation a progression can be seen over the hour of discussion from fundamental concerns about a ‘cure’ agenda that appears to be present at the start of the film, to one of acceptance at the end. Myria captured this with her comment: ‘I felt that in the beginning the journey was about them, especially the father, taking Rowan there to be cured; that’s what it seemed like to me at the beginning. But I felt at the end that they had changed and that he and Kristin had come to an acceptance.’

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Myria also offered the thought that part of their experience was a ‘grief process’ that echoes Jim Sinclair’s ideas in his 1993 Toronto speech ‘Don’t Mourn For Us’ that I discussed in Chapter Three and an echo of the idea that mourning is a key part of coming to terms with having an autistic child, but this needs to be the first step in moving to an autistic acceptance.51

The focus group also acknowledged that the film captured touching and intimate moments of Rowan finding connections and expression during their journey. Rowan’s emerging relationship with the Mongolian boy Tomo, the son of their driver was, for me, one of the most moving moments in the film. In witnessing this connection, which I noted to the group, there was a clear expression of wellbeing and happiness in both children that stands in contrast to the history of isolation and distress that comes at the start of the film.

This led Brian to comment on another scene: ‘it was a beautiful moment when Rowan was on the lap of one of the Shaman. That was absolutely lovely.’

These scenes illustrate the abating of Rowan’s distress and show a child who is happy, but clearly not neurotypical, and in this, point to the argument for healing versus cure. But the capture of these moments on film also points to a problem with the film that group members struggled to overcome. In admiring this moment of connection between

Rowan and one healer, Brian went on to criticize the film’s need for overt images of challenge and overcoming, of the need to visit so many healers and add to, or even play up, the sense of scale of the endeavour. This comment came in light other thoughts from

51 In the question and answer session after the premier at HotDocs and during a conversation over coffee, I asked the father if the real journey had been one of parents coming to terms with an autistic and different child. This is something that anecdotally he acknowledged and also appears to be a message picked up by the focus group, that of the process of healing being lodged not exclusively in the disabled child, but also in the parents as they come to a place of acceptance of otherness.

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Brian about the role of the camera: ‘yeah, I wanted the camera to be gone,’ and ‘the camera ruined it for me.’ The ironic challenge in Brian’s criticisms is that the very process of creating the film, creating the representation of autism and this dramatic journey is a compromise of both the experience itself and its representation. Part of the discomfort that emerges in the film is the realization that it is a film at all, and the need to document and create narrative, for Brian and others, intervened in the family’s experiences and their retelling.

In documenting these critical moments in their child’s life: of the first deliberate and controlled bowel movement; of his playing with other children for the first time; and riding a horse unaided, something too deliberate and constructed is being made. The concern being that in the desire to make a successful film, the actual experiences of the child come second to the cinematic process, and the apparent desire for witness to parental struggle creates the image of the super-hero parents and the awkward sense that their heroics, rather than the child’s innate needs, are the focus of the film and parental interest. This critique extended to the very structure of their adventure, and to the need to visit so many healers and working towards the most remote, the most powerful forms of shamanistic healing. This not only creates an apparent narrative of increasing dramatic tension (why not visit the best chance of success first?) that appears distant to the needs of

Rowan, but it also plays awkwardly with ideas of toying with another culture. Brian, who was probably the group member most challenged by the film, noted: ‘I felt they were dabbling, dabbling in something sacred and important but not part of our culture and not taken seriously enough.’ At one point the father tells us that ‘this is the largest gathering of shaman since the end of the communist era,’ and the picture is created of the

261 empowered Westerners expecting this othered world to respond to their needs. For Myria who has some background in shamanistic practices these were uncomfortable scenes as they moved rapidly from one healer to another and at one point the mother’s side of the family is seen as the source of ‘dark energy.’ For Myria this was dangerously close to the image of the refrigerator mother. The film, then, is exposed to a post-colonial critique as the Western family is seen buying the services of the exotic other, to heal their own exotic child. Though it is probably coincidental, the image of maternal responsibility also creates an uncomfortable echo of past ideas about autism, and affirms the impression of the father driving this mission forward to save his child.

In these scenes, then, we are back in the image of the heroic father and the grand adventure to heal his son that looks more directed by the need to make a successful film rather than the desire to address Rowan’s challenges and relationship to the world.52 This narrative journey of overcoming also creates echoes of older fictional stories of autism such as Rain Man and Mercury Rising that also include the non-autistic hero that takes the autistic character on a challenging journey, and in the drama and scale of the cinematic adventure the more subtle ideas of ‘healing’ versus ‘cure’ are in danger of being lost as the film’s scale overwhelms this more complex and subtle message.

At the close of their Mongolian journey, the father offers the following prayer: ‘I hope we find a way to understand and integrate this enigma into the best of our society and the best of who we are and that it helps to bring out the best in us all.’ The question is, how much does this and other messages of acceptance get lost in their demonstration of the impossibly dramatic response to a situation that is common to thousands of parents?

52 This concern is only heightened by the knowledge that Ian Hacking reveals, that the father received a million dollar advance on the book version of the story before they departed for Mongolia (“Autism Fiction” 634).

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As Brian asked: ‘is the message from the film supposed to be that every family with a four-year-old or five-year-old autistic child should go off on some epic journey? Because if it is, that’s dangerous.’53 The danger is not only the impossible expectations loaded onto other parents, but misreading a film that was actually about bringing a family to an acceptance of autism and addressing a child in distress, with a picture of curing disability.

For all the problems of The Horse Boy, and the discomfort it created in the focus group, the film does usefully open up critical debates between ideas of cure, healing and acceptance and this useful distinction between healing and cure has its critical value in looking at how other interventions are represented. The film makes a valuable point by presenting the idea that particular experiences, though not exclusively that of shamanism and horse riding, can bring a certain relief from the stresses and confusions that can be part of an autistic life.54 In its critiquing the idea of cure as the desired outcome of interventions, it does join something of an activist agenda, but, as the focus group highlights, ‘reading’ this message in the film is not always that obvious and the concern remains that the film can too easily be read as a heroic father pursuing his own journey of

‘fixing’ his broken child.

From behaviourism to bacteria in The Nature of Things 1995 and 2011

The ideas of response as intervention and response as media reaction to the social and cultural phenomenon of autism come together in the two episodes of The Nature of

Things, which the focus group watched at our third meeting. The first episode, ‘The Child

53 I should note here that Janice challenged Brian’s summation of expectation here and directly replied ‘no’ to Brian’s question. 54 It is worth noting that we have met other interventions in this document that also relieve the frustrations of autistic individuals, notably Carly Fleischman and Kevin Vasey’s finding a voice through typed communication.

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Who Couldn’t Play’ dating from 1995 focused on autism as medical/disability tragedy and ABA (Applied Behavioural Analysis) as the key solution.55 Using narratives and footage that came mostly from the United States, this program interviewed parents, therapists and specialists, and told the story of an increasingly common medical condition that was being addressed via intensive behavioural therapy. Interviews with parents included those who talked of their child’s recovery from autism via ABA, and footage of the therapy in practice that at times upset and disturbed members of the focus group.

Towards the end of the program we are told that ABA therapies offer a ‘rescue from the solitary confinement of autism.’

The second episode ‘The Autism Enigma’ made sixteen years later was first broadcast in November 2011. Creating a rather more mysterious image of what autism is and how it should be addressed, this second visit to autism focused on the possible connection between autism and bacterial infection and digestive issues. Using computer generated images of bacteria and toxins floating against coloured backgrounds casts the sense of something alien and invading, and the idea of an ‘enigma,’ of a disease of unknown cause, is dominant. This second program included numerous interviews with parents who have looked at digestive issues to address their child’s autism, but it also included interviews with the scientists who are exploring this connection.

At the start of our focus group conversation there was a general expression of empathy for the parents represented in both programs, notably the challenge of working out what therapeutic path to take. Brian noted: ‘can you imagine how exhausting it must

55 The 1995 episode of The Nature of Things can be seen as an early example of the modern interest in autism in Canada, and in this it sits alongside Peter Gzowski’s interview with the autistic author Donna Williams that was broadcast as part of his Morningside radio program in November 1992.

264 be to be a parent’ and Mel added, ‘you can imagine [how] overwhelming a lot of times it becomes, just there’s so many options out there and how does one choose or decide.’ This focus on the experiences of parents and at times on the autistic individuals represented both in The Nature of Things programs and in other material we watched was a consistent part of the focus group’s response to their viewing experiences. For the group, fictional and documentary characters came to life as individuals to be empathized with, and be subject to group member’s concerns and love. Myria was the only group member who listened and commented on both parts of the CBC radio program The Dark End of the

Spectrum; in her journal she noted her sadness that Darius, the subject of Part Two, was imprisoned for his habit of illegally driving subway trains and that no attempt was made to understand his asperger: ‘It's sad to me that he was imprisoned rather than acknowledging he had aspergers, help him – somehow – get him a job in transportation – for example.’ Here is one example of how group members reached out to the individuals in the representations and affirmed the group’s interest in autism as a humanistic concern, and quite clearly not as academic object or medical phenomenon to be feared.

The group made a powerful engagement with autism via a projection of empathy and wish to gain understanding, but what this in part missed was the discursive critique of the language used in these two programs that is such a key part of most academic interest in disability. Though the group offered numerous valuable criticisms of the contents of these two documentaries, they did not, in general, focus extensively on the one issue that stood out for me in this viewing experience, that of the language used to describe autism.

Notably in the 1995 program there is a dominance of images of loss, of being trapped or imprisoned by autism, and autism as tragedy.

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The one exception to this lack of language focus by the group was Mel. In our conversation she noted how words like ‘devastating’ were used in the 1995 program and how this type of language would affect parents’ perceptions of their own children. In reflecting on the use of ‘devastating,’ she noted, ‘it’s a terrible term to use but there’s a lot of that sort of negative language that goes on throughout these documentaries right?’

In her journal she developed these ideas further: ‘use language like recovered and

“normal” vs autistic. This type of language makes me cringe. “Rescue them from the solitary confinement of autism.” Is it rescue? Do they need to be rescued? – the language always suggests that autism is something bad that needs to be fixed.’ To offer an analysis of Mel’s ideas here, she appears to be critiquing the pattern of setting up a binary between autism and wellness and health, and that certain therapies may create a recovery from this diseased state. Mel’s critique points to how an opposition is set up between autism and an appropriate way to be in the world, and therapy is cast not as support but recovery and cure. Though Mel was alone in her discursive critique, her comments support my own thoughts that these two short documentaries dwelled on autism as a fearful and negative medical condition that threatens a broader sense of well being.

This general, negative conception of autism that emerges, not only in The Nature of

Things episodes, but in numerous autism documentaries points to the lack of voice that autistic people have in factual representations. For Myria this was the dominant frustration of both of these programs and much of the other material the focus group looked at: ‘the thing that feels like it is missing is the autistic person’s voice…. I’m really interested in learning more about what the autistic person has to say.’ She went on to suggest in relation to behavioural therapy that, ‘I don’t think they would ask us to teach

266 them rote responses,’ and this criticism emerged earlier for Myria in relation to the radio documentary The Dark End of The Spectrum, when she noted in her journal that she wanted to know more about autism, not from the research side, but from autistic people.

This picture of an autistic absence, of autism being present as image, but being spoken for by the non-autistic pervades much documentary and journalistic work on autism. The hope that emerges from texts like Carly’s Voice and the Bridges over

Barriers project is that through both new forms of technology and a greater openness to alternative forms of communication, these autistic voices will emerge. Murray in his 2008 book Representing Autism talks of a form of autistic presence emerging in Western cultures and he calls for autistic presence to start from the autistic person: ‘it is the presence of the person with autism, rather than an abstracted idea of the condition itself, that needs to be [the] starting point of any enquiry’ (28). While this lack of voice remains, as Broderick and Ne’eman suggest in their 2009 article, ‘Autism as Metaphor: Narrative and counter-narrative,’ this space of autistic expression is often filled by metaphors created by the non-autistic. They offer the idea of a collection of autism metaphors ranging from the image of the autistic as alien, to autism as disease, to autism as neurodiversity, with their preference for the neurodiversity image that emerges from the advocacy community (459). They make the point that Mel also explored in her journal, that ‘dominant narratives about autism commonly draw upon metaphors that themselves rely upon and reproduce a binary divide between cultural notions of ‘normalcy’ and

‘abnormalcy’ (Broderick and Ne’eman 466).

The 1995 episode is dominated by an image of debilitating disability to be mediated and potentially recovered from through intensive behavioural therapy. In the 2011

267 program an alien image emerges, but not the image of autistic people as a diverse form of humanity that is alien to the neurotypical that comes from some advocacy discourses, but as a form of alien, bacterial invasion that affirms a strong medical model. This idea of autism as bacterial or toxic invasion poses a challenge to the diversity model as it presents autism as a clear and simple disease caused by external pathogen, or that at least some cases of autism can be put under the heading ‘bacterial based autism’ that was a term used in the program. Within this image of alien toxicity causing cases of autism is also the mystery of where this toxicity is coming from that in the 2011 episode was connected to contemporary Western diets and practices of medical intervention, such as the overuse of antibiotics. In reporting on the high instances of autism and dramatic increases in cases of autism in immigrant populations in Canada, notably the Somali population, there was the suggestion that these cases of autism might be connected to changes in diet. Interviews with both parents and scientists included speculation about these connections and one parent offered a firm belief that their son’s autism was caused by an inappropriate antibiotic in early childhood.

For the focus group, this idea of a digestive connection to autism was not a difficult one to make. I noted that the child that we had all worked with showed very obvious signs of distress if he ate food that he was not meant to, and numerous texts on autism offer the idea that working with gluten and dairy free diets can alleviate stresses in some autistic individuals. The members of the group connected with the episode’s idea that there might be something in a modern Western diet that has an effect on autism, and that this would be seen more dramatically in an immigrant population used to different eating habits. For the focus group this was expressed as empathy for the Somali parents who had to deal

268 with both a new culture and disability in their children, a disability that might just be caused or exacerbated by dietary changes.

The problem with seeing autism as exclusively a bacterial problem is the potential for diet-based medical interventions to dominate responses to an individual and for their other needs to be ignored; in this case for all their challenges to be understood as digestive.

While the focus group noted the challenges faced by parents of choosing among a diversity of interventions and therapy, the group also noted the problem of a dogmatic singular response to autism missing the full needs of an individual. A picture emerges here of representations attempting to capture autism in a simple, singular idea, and this being seen by the group as an awkward limiting of what autism is and what help to offer autistic individuals.

The second challenge in this image of autism or some autisms being caused by bacterial toxicity is the conflict it sets up with the idea of autism as an aspect of human diversity. Broderick and Ne’eman note that ‘the positioning of autism as a crisis of ‘health’ further draws upon a medicalized disease discourse in which people who have labels of autism are constituted not as neurologically different, not even as disabled, but rather as diseased’ (468). This advocacy position of diversity comes into conflict with the image of digestive disease presented in ‘The Autism Enigma.’ In debating this problem, the focus group navigated a complex path between symptoms of autistic distress and the rights of the autistic individual. I noted in relation to one film clip of a distressed child in a diaper toe-walking and crying that, much as we saw in The Horse Boy with Rowan’s tantrum at the zoo, there is a need to identify the difference between autistic self-expression and an individual in distress and pain. I offered the challenge to the group that if ‘autism is an

269 okay way to be in the world… why would you want to change that?’ To which Brian offered: ‘because the child is in pain… and secondly the family is in pain.’ This appears to be a simple answer, that we focus our efforts on the distress rather than the autism, but

Myria noted the difficulty in identifying where these ideas connect. She noted that if she were a parent, she would want her child to be as normal as possible: ‘you’d want for your kids to fit in and to have a normal functioning life if they can,’ but moments later she also added: ‘but then there’s another part of me you know that respects an individual and their uniqueness and wants to support that in whatever way that works for someone.’

At this point in our discussion I made an attempt to both summarize and offer a possible resolution to this conflict between cure and identity:

And it’s really interesting how we’re wrestling with this really difficult challenge of wanting to support a parent who wants to cure a problem they see as a gut bacteria problem and that that’s going to reduce some of the symptoms of autism while still wanting to say that autism is a legitimate way of being in this world. I went on to offer the idea that some of the images of ‘autistic distress’ shown in the second The Nature of Things episode were not so much the direct expression or symptoms of autism, but symptoms of ‘a distressed system that is in some way connected to autism’ and that ‘maybe curing the gut bacteria allows the autistic person to be the best autistic person they can’ (6). This idea that what is read as autism or the symptoms of autism could in fact be the symptoms of distress caused by just one limited aspect of autism, notably digestive problems, connects to the issues of healing and cure that were discussed in The Horse Boy film. Healing in this context is to ‘heal’ that which is sick and hurting in an autistic individual and that which is creating barriers to their successful autistic life

(that could include parental acceptance), contrasted with the idea of ‘cure’ that attempts to

270 diminish both this distress but also wishes to diminish the expressions of individuality and autistic identity contained within the individual, and does this not for the benefit of the individual but in order to create a certain autistic invisibility in the wider culture.

Though this debate was started within the focus group, it is not present in either program, each of which hangs onto a disease or disability model of autism. Whether it is an argument that resolves the conflict between autism as containing aspects of digestive illness and also being a form of diversity will have to be judged by others; whether it would satisfy the advocacy movement and the legitimate claims for autistic self- expression and identity has to be left to that community of which I am not a direct member.56 There is also need for caution in this moment, of the danger of reintroducing a binary between diversity and disability, and excluding the idea that a disability is a form of diversity and a legitimate place in the world. The critical distinction here is the difference between autism conceived of as curable disease or genetic fault to be eliminated, or alternatively as a form of human diversity that may well include disabilities and stresses that benefit from intervention. If we construct autism as medical condition then the autistic individual can be captured as a series of ‘symptoms,’ but if we think in terms of diversity, then we should look to acknowledge the difference between legitimate autistic expression and an individual in pain or distress. In thinking on the image from the second The Nature of Things episode of the distressed child in a diaper, there is a need to

56 The autism advocacy movement argues for the legitimate place of autistic people within a broader neurotypical and non-autistic culture and in this supports and critiques various ways of describing autism, and various ideas and approaches to supporting autistic people with therapy. In a Canadian context, The Autism Acceptance Project promotes autistic self expression and offers the following in its ‘Mission Statement’: ‘The Autism Acceptance Project (TAAProject) will bring forth a different and positive view about autism to the public in order to foster understanding and acceptance, and to empower parents and autistic people. We, as autistic people and friends and family of autistic individuals, do not see autism as a tragic epidemic’ (TAAProject).

271 approach the child as individual and address and consider that which disturbs them, without also attempting to limit their self-expression and personality.

The absence of this complex argument from both episodes of The Nature of Things and The Toronto Star’s series on autism points back to Myria’s arguments about the lack of autistic voice in these documentary constructions of autism and of the need to hear directly from the autistic community on what aspects of autism are genuinely distressing and what are expressions of autistic personality. Here, then, is a reminder of Carly

Fleischman’s insights on her own experiences of autism that come in small parts in her father’s account of her life, and to Hacking’s idea that autistic autobiography is engaged in the making of the language of autism. This autistic voice is clearly absent from The

Nature of Things episodes, but I would argue what is also missing is a further responsibility that can come from the non-autistic community, to acknowledge that autism should not be reduced to a simplistic medical argument that captures all autistic expression, distressed or not, as negative and also fails to acknowledge more complex arguments about difference, self expression and need. This indicates how these documentary versions of autism focus not on the needs of autistic people, but on a narrative that promotes the fears and concerns of the non-autistic in the face of otherness.

The Toronto Star’s ‘The Autism Project’

A similar focus on social crisis and the fears of the broader non-autistic community is also the focus of ‘The Autism Project,’ a multi-part series published in The Toronto

Star in November 2012. Alongside the television and radio interest in autism expressed by the CBC, this extensive coverage in The Toronto Star reinforces the idea of autism’s

272 current elevated cultural presence in the Canadian media. The series included feature articles, editorial comment, interviews, and book reviews. It initially ran for ten consecutive days with further articles and on-line updates appearing after this first run.

The questions for an extended journalistic project of this sort are: does it challenge or affirm existing hegemonic understandings of its subject? Does it genuinely add to public knowledge of autism and contribute to the lives of autistic individuals? Or does it just reproduce limited clichés?

In the ‘editor’s note’ that introduces the series on its first day, we learn the apparent intent for the project: ‘So we assigned eight Star journalists a two-pronged purpose: bring us back stories on autism we have never read before, and unearth policies that need fixing. Do some good’ (“editor’s note” A1). Despite this expressed wish for originality the same ‘note’ included the sensationalizing and predictable: ‘autism is a quiet, creeping epidemic. And it’s ours’ (A1). Medicalized ideas of epidemics aligned to questions of genetics and neurological deficit become the dominant themes of this first day of coverage. Tanya Talaga offered articles on genetic research into autism taking place in

China, and another titled: ‘Decoding the Autistic Brain.’ Within these medically focused articles were also the typical images of autism as trap and social isolation. Talaga tells us that: ‘Most will spend their childhood alone, trapped in their minds, unable to make friends or take part in the world around them’ (“In Search of Autism” A1). These articles from the first day of the project affirmed a rather predictable story of autism as a medical deficit captured as aloneness to be resolved by neuro/genetic research. Despite the editorial claims to create new stories day one of ‘The Autism Project’ included many

273 predictable fear based images that represented autism as personal pathology and social crisis.

Alongside this image of faulty genetics, epidemics and tragedy of isolation, this first day of the project offered the compensation of ‘The Rain Man of Shenzhen,’ again authored by Talaga. This short article proposed prodigious piano skills as a compensation for having ‘the mental capacity of a child’ and played with the idea that autism can be legitimized and compensated for with some form of savant skill (IN.4). The representations of autism made on this first day remain familiar to the ones offered in the two The Nature of Things episodes of debilitating disability, disease and epidemic, and in the direct reference to Rain Man the status of this film as the meta-representation of autism in popular culture is affirmed, as is the expectation that autism should come with some compensatory gift or talent. In the first day there was no great sense of genuinely original research but of an offering of anticipated and typical ideas that included the tragedy of isolation, the potential for miraculous gifts, and the medicalized hope of genetic intervention.

The focus on neurological tragedy was a theme that continued throughout the series and reached its peak in an editorial on Monday November 12th:

In the brain of an autistic child, razor-thin neurons that normally transmit messages in rapid speed instead look like a twisted jumble of wires. It is this tangled mess that turns lives upside down, creating children who cannot connect emotionally, students who cannot function in school, and adults who risk having no role in society. Simply put, autism limits lives. (“Ontario’s Shame” A9) This simplistic and damning image of limit, burden and damaged neurology offers few challenges to the most medicalized and negative conceptions of autism and autistic people

274 and captures all aspects of autism in the single place of deficit. Despite the claims in the first Saturday editorial to go ‘beyond glancing looks,’ to ‘do some good,’ the general theme of this series affirmed the representation of autism as tragic medical condition and disability. Critically, the Star did this in the deliberate context of wanting to inform and spread knowledge of autism to a wider public.

Vakirtzi and Bayliss in their Foucaudian approach to autism talk of ‘effective truth.’

They suggest that effective truths and knowledges can emerge not just from official and sanctioned discourses but from any discourse that has ‘social power’ (11). Citing Barry

Allen, they argue that social power is critical to the spread and influence of various truths, or as Allen notes, ‘discourses that pass for truths’ (Vakirtzi and Bayliss 11; B. Allen 100-

101). In the claims for legitimate journalism made in the first editorial, and in the regular repetition of certain ‘truths’ throughout the course of ‘The Autism Project,’ the Toronto

Star made claims for journalistic integrity and accuracy. However, the project was not so much engaged in finding new information, but in the repetition of social, effective truths that made ‘truth’ out of conventional negative conceptions of autism. The instrumental value of this performative affirmation of existing prejudices about autism in effect affirms both Alderson’s and Vakirtzi and Bayliss’ concerns that popular and professional discourses about autism create a limited lens for viewing autistic individuals and their potential contribution.

The relative predictability of message continued in the Star’s coverage of interventions for autistic children and services available in Ontario. In a multi-page article in the Sunday November 11th edition, there is a strong focus on the challenges faced by parents to achieve diagnosis and then access services (Gordon, “Wait lists for wait lists”

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A1, A6). This theme of parents in crisis, a lack of support, and the image of a general provincial failure in Ontario continued throughout the series. Though there is a certain campaigning mantra to this rhetorical position of provincial failure, it is one that focuses its efforts on behaviourism and the needs and stresses of parents rather than on autistic individuals themselves. And in the image of provincial political failure the broader image of autism as negative health crisis is confirmed. Though no doubt pointing to real challenges in accessing support and lack of funding for autism services, Andrea Gordon’s article creates a pathologizing and disease based impression of autism. As Broderick and

Ne’eman note ‘by portraying people on the spectrum as tragic and all aspects of autism as horrible, more fundraising dollars can be raised,’ but the consequences of this pathologizing approach is the mapping of a negative image on the lived experience of autism, and within this image, an autistic life is in danger of being, not only perceived tragedy, but also experienced as such (472). What the Star series misses is the alternative conception of autism as neurodiversity that for Broderick and Ne’eman raises it above the level of disease and negativity (474).

In the few articles where ‘The Autism Project’ escaped this unreflective excitement and started to look at lived experience, it did offer some more productive insight. An extensive and moving article on aging with autism recounted the life of one autistic woman diagnosed in the 1950s. Pamela Burton’s story is one that covers the history of refrigerator mothers, institutionalization, and raised the issue that autism is typically seen as a condition of childhood. Though it also raised questions about services for autistic adults, this article avoided the negative sensationalizing of much of the series. In this sense, it is probably the most valuable representation of autism in the project (Scrivener

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A1, A6, A8). Among the images of social and health crisis, Heather Mallick also offered a calmer, more complex voice. In an editorial piece titled ‘Those Children of Another

Country’ she offered her own comments on autism and advocacy and discussed

Solomon’s Far From the Tree. She offered an image of non-normative children in the context of identity politics and noted that ‘parents now celebrate these children who vary from the norm’ (A4). Within an article that talked of the challenges of being a parent of an autistic child there was also admiration for the advocacy movement: ‘they teach us to identify autism and treat its manifestations with patience and kindness’ (A4). Though the title, which implied a form of alienation is problematic, it is preferable to the picture of

‘broken’ or sick children that pervaded most articles in the series. There may be a certain sentimentality aimed at parents here, but the complexity of ideas expressed in this short editorial got closer to a truer debate on autism than any of the other articles in the series.

The key shortcoming with this series was that the more positive and complex stories of autistic identity and social contribution are rather lost within the broader editorial rhetoric of education, social and health crisis captured in the idea of a ‘creeping epidemic’ and autism as limiting lives. Critically, the autistic voice was still missing. No full article was written by an autistic individual and the two short comments solicited from autistic individuals offered little challenge to the overall impression of autism as health crisis and social burden. The few engaging and detailed tellings of individual stories were all too easily lost in the background buzz of epidemics, genetics and failed neurology. Within this negative conception of autism, there was also little acknowledgement of the diversity of contributions that can come from different places on the spectrum. As with the two The

Nature of Things programs, ‘The Autism Project’ focused on a need to create the

277 impression of social crisis and fear and in this, autistic people and autism are used in this series to create a sense of drama and intrigue for a non-autistic audience.

Titchkosky offers the idea that hegemonic images of disability as negative condition can be read as part of a wish to reproduce ‘normality as all powerful’ (‘Disability Images’

75). Her argument points to the sense that emerges in the Star’s project of creating a distinct sense of otherness around autism and the message of ‘you should be grateful it is not you, is not your child.’ Autism, then, is cast as something fearful that one should know about tangentially, but not in detail, not intimately or personally. In this rhetoric of otherness and desire for distance the opportunity to interrogate broad social relationships to disability and otherness is missed, the possibility of exploring the real place of autism within Canadian culture and the role of the spectrum in social life is passed over. As

Titchkosky points out, ‘what is rich about the flesh of disability experience is that it illuminates dominant cultural discourses regarding the meaning of persons,’ but it cannot do this if the disability experience, or a genuine presence to that experience, is missing

(Disability, Self, and Society 29).

Hacking talks of the fictional and autobiographical making of the language of autism, which in turn makes a contemporary understanding of the condition (See “Autism

Autobiography” 1467-1473). Within this idea of a new form of expression, new and novel ideas of what autism is and how it is experienced can emerge: for example Carly

Fleischman’s explanation of the value of some forms of self stimulation that she recounts in her biographical reflections (374-375). Hacking, however, misses the issue of repetition and reinforcement that comes from the regular repeating of the medicalized images of autism in the mainstream media. Rather than re-make the language of autism in new

278 ways, the repetitive performance of autism, as found in the television and newspaper representations discussed above, sediments received positions of negative disability and autism as negative life experience. As Vakirtzi and Bayliss note this ‘autism apparatus’ captures autism and autistic expression in ways that limit understanding and limit possibilities for autistic individuals (2). The autobiographical, biographical and the fictional may at times offer a counter narrative that supports new thinking about what autism is, but this discourse sits alongside and is often lost within a repeating hegemonic expression of autism as tragedy and disease.

Responses to autism as intervention and Applied Behavioural Analysis

As noted by the focus group in discussing The Horse Boy, the perception of autism as disease and negativity leads to all aspects of autistic expression being seen as negative.

This links to the idea that there is a need to distinguish between a form of thinking about autism that wishes to offer cure or recovery from negativity, and an alternative wish to foster and support autistic expression while helping to ameliorate some of the distress that can come with autism (which in The Horse Boy, I would suggest is referred to as healing).

This, then, connect issues of representation and description of autism to possible types and approaches of intervention, what the aims of these interventions are, and what image of autism informs them.

The 1995 episode of The Nature of Things focuses on autism as significant disability and on Applied Behavioural Analysis (ABA) as the exclusive solution to autism or the intervention that offered ‘recovery.’ This episode came in for some significant criticism from the focus group. In her journal Myria offered her concerns about the

279 consequences of behavioural intervention and the behaviour of the children in this episode who had been subjected to it: ‘when “training” people with autism to be “normal” it looks to me like all the life has gone out of them – their language is monotone + they seem ‘not there’ to me in their language,’ she went on to add: ‘What does training in ABA do to the child who is autistic? Is it soul destroying? To make them be someone they are not – to deny qualities that make them who they are.’57 Similar concerns about the repressive and normalizing nature of the ABA therapy demonstrated in the episode were made by other group members, and of all the representations that we witnessed, this program was the one that caused most distress amongst the group. This was most notable in a scene in which a young girl is being berated to perform a task while in a clear state of distress. In his journal Brian noted that: ‘I feel sick watching the interaction of teacher with kids,’ and

Mel commented: ‘what I saw it was like that distress was completely … it seemed completely ignored really and she’s pushing like for these responses and what are you teaching the child about you know like their feelings by doing that?’

The history of Applied Behavioural Analysis and its connection to autism is a long and complicated one. It came to prominence in relation to autism with O.I. Lovaas’s 1987 report that suggested that ABA could create a ‘recovery’ from autism (Alderson 126).

ABA is a fundamentally behaviorist approach that uses systems of punishment and reward to solicit desired behaviours. Brian noted in our discussions that this originally included cold showers, and as was obvious from the 1995 episode punishments also included deprivation and shouting. Jonathan Alderson tells us that Lovaas also used electric shock as a form of discipline to encourage two of his test subjects to hug and kiss

57 See the discussion of Loving Lampposts at the end of this chapter for a further discussion of this point.

280 their parents, and recommend parents use corporal punishment as part of training programs (125). Thankfully in its more contemporary version, though following the same operant conditioning principles, it is based more on a rewards culture.

Lovaas’s claims for success in his program included normalized IQ test results and the ability to attend first-grade in public school (Lovaas 3). These ‘best outcomes’ were observed in 47% of the children who took part in the forty hour a week program and were described by Lovaas as a form of ‘recovery’ from autism (6, 7). For Broderick this idea of recovery becomes one of a number of critical rhetorical moments in the history of autism and ABA (Broderick 4). Alderson also notes that it was this idea of recovery that pushed

Lovaas’s work to media and academic attention (126). Broderick makes the argument in her article “Autism as Rhetoric: Exploring Watershed Rhetorical Moments In Applied

Behavioural Analysis” that this idea of recovery along with the rhetoric that ABA is the only scientifically proven autism treatment, rhetorically constructed ABA as the only legitimate intervention, but also constructed autism as a disease to be recovered from (6).

Critically on the issue of scientific credibility, Lovaas’s original work was not a conventional randomized trial and as Alderson notes it is now far from the only scientifically assessed form of autism treatment, yet in many places it retains the status of the only scientifically valid therapy (Broderick 19; Alderson 126, 127).

Broderick emphases the idea that recovery implies a medical model for autism and the idea that autism is something that always and inevitably requires intervention (6). In the chapter in his book that looks to challenge the hegemony of ABA as the only way to help an autistic child, Alderson also notes that it obscures what other therapies are available that might address the 53% not helped by ABA, and places parents in a position

281 of guilt for wishing to explore alternative ideas (128, 131). The scale of ABA’s rhetorical victory is illustrated by it being the only funded autism therapy available in Ontario, and one of the other myths that Alderson identifies as associated with ABA therapy, that of required early intervention, means that funding for ABA runs out at age six (178).

As ABA gets bound to autism as the only hope that is not considered a quack cure, it becomes part of the lens through which we view autism itself and view it as medical disease from which ‘recovery’ is possible and desirable. In this sense, this dominant therapy becomes one of the representational frames through which autism is constructed.

Following Broderick’s line of thought in relation to ABA, I would suggest that the challenges of an intellectual difference can be mitigated and supported but you cannot

‘recover’ from a difference because it is not a diseased state. In order to talk of recovery from autism it must be conceived of as a medical condition or disease, and implicated in this model are the discourses of ABA therapy. As Broderick and Ne’eman note, ‘if autism as neurodiversity were a more culturally dominant metaphor than autism as disease, how might it differently inform the political and economic decisions that come into play in the constitution of culturally dominant ideas about appropriate responses, interventions or supports?’ (474).

The lens or view of autism from the position of ABA, then, is one of disease in need of curing in which all the expressions of autism, not just those of distress and discomfort are worthy of eliminating. In the rhetoric of recovery and recovery to a place of normalcy the complex performance that is autism in any one individual is cast as a negative state. In this move, the distresses seen in an autistic child as well as any expression of their personality, are seen as aspects of their autism and worthy of elimination. ABA as

282 practice and theory, then, fails to observe the difference clearly seen by the focus group in the two The Nature of Things episodes and The Horse Boy, between a child in distress

(crying, tantrums) and the legitimate expressions of autistic neurodiversity (alternative vocalizations, forms of self stimulation as so well described by Carly Fleischman in

Carly’s Voice). From the position of ABA all these expressions become ‘symptoms’ and in need of intervention. Vakirtzi and Bayliss note Molloy and Vasil’s argument that

once children are labelled they tend to be defined by the diagnosis, thereby losing their individuality and limiting other people’s expectations of them. Once a diagnostic label is attached, the child’s characteristics are filtered through this diagnosis resulting in a tendency to view the child’s behaviour as symptoms, rather than expressions of their unique personality. (Vakirtzi and Bayliss 3-4) Molloy and Vasil make a powerful argument for how a disabled child is globally pathologized once they have been given a diagnostic label; what they miss is that certain forms of therapy that aim at normalization are implicated in constructing this pathologizing figure of a child seen as disabled and othered in all their actions.

Arguments made through ABA of recovery being possible, and normalcy being desirable, encourage this idea of autism as a medical problem that captures the whole of the subject.

If one can recover from autism as disease, then all the expressions of the child become indicators of that disease and worthy of intervention, and no aspect of autism is allowed as ‘okay’ place to be. Critically representations such as those found in the first The Nature of Things episode and in the Star’s series, in focusing on autism as social crisis and epidemic disease, create the space for thinking of autism in terms that makes behavioural intervention make sense. In addition to simply buying into the effectiveness of ABA, they

283 also buy into social fears that make hiding autistic expression behind a wall of behavioural suppression desirable.

Rigid behavioural therapies like ABA, then, promote the idea of autistic invisibility or symptom/expression control, and in this sense, ABA is an exploration of wider social desires for normalcy and disability invisibility. As a defense against this normalizing intent, parts of the neurodiversity movement often advocate for a ‘no intervention’ position, or as Broderick suggests that intervention with autism is not always necessary

(6). Within a behaviorist ABA hegemony of all autistic expression being cast as negative, the autism self-advocacy position is potentially polarized to reject all forms of intervention in the wish to reject this one dominant approach. As Broderick notes, ABA is implicated in the idea that the first response to autism should be intervention and intervention of a particular kind, and she suggests the first real question should be

‘whether to intervene?’ (6). Though this is a legitimate question, it needs to be asked with care, as the wish to reject dogmatic intervention that suppresses autistic expression also runs the risk of finding its own dogma that rejects necessary and supportive therapy that mitigates some of the stresses of autism. In an advocacy position that argues against intervention there is the ironic potential of finding the same exclusive focus on a person’s autism that happens with a medical approach, and in the process again leaves individual needs, autistic and otherwise, unsupported. As the focus group discussed, the child in distress is not an acceptable position to witness in the ABA therapeutic moment, but it is also not acceptable in the child who is distressed as a consequence of a lack of support.

The focus group, in discussing the representation of ABA in the 1995 episode powerfully connected to the concerns of identifying genuine need contrasted to a wish to

284 normalize autistic expression, and continued to question what the aims of behavioural therapy were. Mel noted that ‘it’s like you’re not teaching them how to express how they feel, you’re teaching them to express how you think they should feel.’ This questioning and challenging of the idea of normalcy was also found in Mel’s journal when she noted:

‘still using the term “normal” to describe “typical” children.’ Here, then, through the collective viewing experience, but also personal reflection, a questioning of ABA emerges, but also a questioning of the very discourses of normalcy and how these discourses position autism and reinforce the positive value of normalizing behavioural interventions.

Taking the criticism onto the terms of ABA therapy itself, Brian also raised the very practical question of whether ABA actually achieved its normalizing intent:

And Suzuki in that case mentioned that the child could not be seen as different from the rest of the children, I don’t believe that. I don’t believe … I think he still looked autistic and I can’t believe that they’re trying to suggest that that approach has removed the autism. Maybe prepared him so he could go to kindergarten but it certainly couldn’t have removed the autism. Within the group’s discussion a picture emerges of ABA being implicated in mitigating the aspects of autism that distress and offend the non-autistic world, and I noted that this was a way of creating a form of ‘passing’ of allowing, or more forcing, the autistic to pass within a neurotypical contexts. And for Brian, even this reasoning did not work as he expressed the sense that this is only a partial passing, that autistic expression still emerges from under the trained responses of ABA. Within a focus on representation, then, there is a sense that the representative frames of both the Star series and the 1995 episode have accepted the rhetoric of recovery without careful observation of these claims.

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Overall the conception and ideas of autism created in these representations remains that of negative ontology, of lives that needed to be altered at the most fundamental level.

This negative conception was strong enough for Brian to note that: ‘if there was a way of using amniocentesis and discovering that you have a child with the autism gene or chromosome, I mean it’s not going to happen, but if it did I think the way we have depicted it most parents would choose I think to abort… The way it’s been depicted we would abort.’ Powerfully this comment from a therapist who has worked with autistic children, and who has argued for the legitimacy of autistic existence, speaks volumes about how autism is still negatively made in Canadian journalistic representations. Brian’s comments also support Alderson’s argument that within these debates that cast autism as negative condition, ‘we sometimes forget that we are talking about real people, a population with a very wide range of strengths and challenges and personalities’ (5-6).

Responses to autism as intervention and Alderson’s The Myths of Autism

In looking at Alderson’s Challenging The Myths of Autism, I want to look at a text that both critiques conventional ideas of what autism is, but lodges itself firmly in the practical, with direct guidance on how families and carers can respond to a diagnosis. At the heart of Alderson’s book is a wish to see an individual’s complex humanity prior to seeing them as an expression of autism. He also notes the habit of media representations of autism to fail in this task: ‘the autism described in books, on TV, and in the media was an averaged caricature that didn’t match what I witnessed in reality, and I was most disturbed by the negative impact of some of the more stereotypical characterizations of people with autism’ (5). Alderson, as a therapist, sets out to debunk what he calls the

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‘Myths of Autism’ in order to offer support to autistic individuals and their carers. In this, he shares a connection with the focus group and the group’s critique of the misreading of autism and its expressions through a normative and normalizing agenda. In addition to critiquing an exclusive ABA approach to autism in ‘The Myth of Evidence,’ Alderson offers six further chapters, each of which takes on a different ‘myths of autism,’ ranging from ‘The Myth of Affection’ through ‘The Myth of IQ’ to ‘The Myth of Imagination.’ In the process, he draws out the practical and philosophical consequences of these myths and the truths and responses that they create.

In ‘The Myth of Affection’ Alderson notes that the danger in assuming that autistic children are not affectionate is that any signs of affection they may offer maybe missed or misread: ‘If you believe a child doesn’t feel affection, then you might see his version of a hug as aggression, for example. Sadly, a loving moment between parent and child is reinterpreted and downgraded as inappropriate behaviour’ (19). He goes on to warn that

‘the most damaging effect of the myth of affection is that caregivers stop being affectionate,’ that offering affection becomes a pointless and one way exercise as all autistic behaviour is viewed as cold and detached (22). His guidance on this issue is reminiscent of Myria’s comments in the focus group; he suggests that ‘a good way to better understand those with autism is to listen to people who actually are autistic’ (35).

He goes on to quote Judith Bluestone, who asks, ‘why can’t we simply conclude that people have different ways of relating, based on their neurophysiological and experiential make-up?’ (Bluestone 75, qtd. Alderson 39).

In discussing stims and repetitive behaviour, Alderson offers a similar analysis, noting that they are typically described as maladaptive behaviours and symptoms of

287 autism to be stopped. He suggests that ‘the myth about repetitious rituals begins with the ways in which we interpret and judge them’ (51, 55). Alderson references Kanner and his position that repetitious behaviour was a fundamental part of autism, but that this understanding has been lost in the wish to normalize autistic individuals, and that with

ABA as the ‘leading treatment,’ an interest in understanding stims and repetitive behaviour has also been lost (Alderson 59, 62). He suggests that we should approach this repetitive expression of autism without judgement and shift the thinking from

‘maladaptive-purposeless’ to ‘adaptive-purposeful’; he considers that stims may well be very effective coping strategies for autistic people (76, 81).58 He clearly points to the dangers of their suppression in stories of children who find secret places to stim like public washrooms and whose repetitive stims are addressed with physical restraint (54-55,

62-63). Again, here, we see the challenge autism presents to a normalizing social intent; here is the image of the autistic expression cast as negative symptom that needs to be eliminated for the comfort of the neurotypical.59

The critique of dogma continues throughout Alderson’s book as he challenges the idea of mental retardation in autism and its link to IQ tests that favour verbal responses, and the myth that therapy is only of value in the first five years of life (148, 173-194). In

‘The Myth of Imagination,’ much as he noted in ‘The Myth of Affection,’ Alderson

58 Note this is a point also made by Carly Fleischman, Nick Pentzell and others, and is one key idea that has emerged from autistic self expression. 59 One caution that should be offered in the face of repetitive behaviour and stims is that approaching autistic expression with a lack of judgement does not mean not approaching it at all, or always ignoring an individual’s behaviour. As was discussed by the focus group in relation to some of the images in the two The Nature of Things documentaries, there is a need to see the difference between effective, expressive autistic behaviour and seeing a person in distress. The challenge in this moment is always to be present with the idea of two people meeting and not an expert approaching otherness through a particular dogmatic knowledge of autism, or treatment approach.

288 suggests that autistic expression and play is read via a diagnostic intent that makes it easy to pathologize. He makes the argument that we need to read the play of autistic children not as a symptom of deficit, but as alternative but equally valuable expression (201). In calling for behaviour and play to be engaged with and not stopped, he raises the concern that if we give autistic children rote tasks to do and limit their opportunities for expressive play, then we create a self-fulfilling prophecy of a lack of imagination amongst autistic children (204). As is the case with the issue of affection, if we offer autistic children no models of imaginative expression because we assume they are not capable of reciprocation, then their opportunities for this expression are cut off and our expectations of autistic otherness are confirmed. Alderson, then, is making a similar argument to

Vakirtzi and Bayliss when they suggest that the autism apparatus turns autistic children into ‘passive bodies’ in which all their characteristics are filtered through their diagnostic label and perceived as negative symptoms (Vakirtzi and Bayliss 2, 3-4)

In the critique of a lack of emotion, intellect and imagination, as well as the criticism of seeing repetition as always negative, Alderson illustrates the disciplinary discourse that constructs the bio-medical and narrow interventionist narrative of the spectrum. This discourse is performed and repeated in the representations discussed in this chapter, and I would suggest this is a discourse that often stands in the way of

Hacking’s new narratives that emerge directly from the autistic community (“Autistic

Autobiography” 1467-1473). Alderson directs us to see the autism apparatus that captures autistic individuals in a place of docile deficit that limits both how they are perceived from outside, but also limits the opportunities for autistic individuals to express their creativity, imagination and intellect, and see these possibilities in themselves. Critically

289 one of the consequences of the normalized rhetoric of diminished life is how this becomes a model, not just for how neurotypical society sees autistic people, but also becomes a self-perception for the autistic individual who is left without positive models of their potential and diversity.

Alderson’s myths point to a perfect storm of otherness and alienation. If autistic individuals and particularly autistic children lack affection and emotion, lack intellect and imagination, and do not offer back to normalcy, via normative patterns, the rewards we expect from children, then we not only end up with a sedimented model of autism as fundamental deficit, but we also create a license for the neurotypical world to respond to autism as alien object to be controlled by behaviourist techniques. In contrast to this image, Alderson’s book offers the message that each autistic person should be approached as an individual with unique experiences and needs, and that any intervention or therapy should be tailored for that unique person. Alderson at the close of his book calls for us to tell stories of autism differently and look beyond the deficit model and create services for autistic people that do not look through dogmatic lenses and singular forms of intervention, but are present with, and aware of, difference and how we can support its needs. In this sense Alderson makes a similar call for awareness in representation as this project; he too notes the need to be aware of the traps of repetition and received dogma that limit the productive potential of publically debating the autistic spectrum.

Concluding the focus group work with Loving Lampposts

If Alderson’s book represents a positive turn in the written expression of autism and one that does not directly emerge from an autistic person, then is there an example of

290 either a broadcast or filmic text that follows the same emancipatory and progressive agenda? As I noted in Chapter Two the original plan was for the focus group to meet on five occasions, but during our third meeting we collectively decided to meet for a sixth time to watch the American feature length documentary, Loving Lampposts. I had only recently watched this film myself when I talked about it in contrast to the two The Nature of Things episodes, and I noted that I had been particularly impressed with what I saw as a balanced representation of autism and debates around cure and intervention. Todd

Drezner’s film follows his son’s journey through Central Park greeting by name the lampposts they meet on their walk. At heart this is a film about acceptance and understanding, and shares a similar message to the one that comes at the end of The Horse

Boy. However, in contrast to that heroic journey of healing, Lampposts goes on a gentle walk through the issues of cure and acceptance, types of intervention, and just how we might socially go about understanding what autism is. Against the backdrop of his son communicating with lampposts the film interviews and connects with a diversity of characters who are parents, autism specialists, and critically autistic adults, and debates the fundamental questions of autism as disease, disability and difference.

The film starts with parental experiences of receiving a diagnosis for their child and notes that ‘society has a new message for you, you should be terrified,’ but in this moment of naming a disability, that for many is perceived as a disease, the film asks what really changes. The film challenges the idea that anything has shifted beyond the gaining of a name. At this critical juncture of acquiring a label, the film asks for a pause to see the person, the child, who is now labelled, as still a person first and not just a collection of symptoms, and fundamentally still the same child as they were before the label. Clearly

291 there is an issue of performativity present in the diagnostic moment, of performing into being of an idea that can then become very real for the people involved. The application of an autism label in many ways does make a person anew and draws them into a world of intervention and response, but Drezner is usefully asking if a little resistance to this performance might be worthwhile. Having taken on the initial shock of new knowledge, or even the relief of confirmation, he suggests a pause to recognize the humanity, individuality and essential unchanged nature of the person before one. The newly labelled person in their physical sense does not change at this moment.

The film goes on to illustrate how some parents respond to the terror of diagnosis, and in the process it illustrates the scale and zeal of an industry that has emerged around autism that makes claims for cure and recovery, but Drezner asks, ‘is recovery the answer?’ The narrative trajectory of the film cautiously asks what this idea of cure and recovery might be and promotes a message of diversity and acceptance. In exploring the

‘Defeat Autism Now’ (DAN) movement and the idea that autism is a series of problems with digestion, vaccine toxicity, and various forms of nutritional imbalance, the film asks this movement to consider where this disease model places autistic adults, and mirrors

Broderick’s argument that to think of curing autism sets up an impossible challenge between parents and a condition that should not be thought of as a disease. In something of a mirror of the focus group’s discussion on the second The Nature of Things episode and its suggestion of autism as bacterial toxicity, Lampposts offers the idea that digestive problems may be an aspect of autism, but that it is not all that autism is. One of the mothers interviewed in the film offered the idea that changing her children’s diet was ‘not changing who they are, it’s the way they really could be.’ Here was a mother who

292 acknowledged the benefits to her children of a dairy free diet, but did not claim this had

‘cured’ her children; it had simply given them the comfort to develop more of their potential as autistic people. This complex message contrasted with one interview with a cure focused doctor who insisted that autistic symptoms were caused by medical issues, and that once these issues were addressed, the autism went away. In response to this idea, the film titled one of its sections ‘Not Even Wrong.’ The implication from this statement being that the cure focused profession are so far from the reality of autism that their agenda cannot even be considered in the debate on how to understand and approach what autism is.

In contrast to many representations of autism, this film included a number of autistic voices who challenged the idea of a cure. One autistic woman suggested that the

‘cure’ movement was in need of ‘reality and sensitivity training,’ and Dora Raymaker, an autistic advocate and academic suggested that much of autism was based on shifting concepts of normality. In including these diverse autistic voices that at times connect with the disability studies movement, the film offered space to a counter-voice that challenged and undermined the simplistic medical model of autism, but while doing this it extended a generous hand to parents and their understandable wish to respond to what is broadly seen as a devastating diagnosis. In an interview with Ralph Savarese, the point is made that to not try to cure autism is seen by some as failure, but Drezner and Savarese argue that acceptance of disability and difference is the first step to developing productive relationships with autistic individuals. The rhetorical image of autism as a battleground as constructed by the cure industry was also contrasted to the idea of acceptance and

293 embracing of difference, and this acceptance was often focused through the voices of autistic people themselves.

The film even challenged the hegemony of behavioral therapies. Following a scene where a young boy is cajoled into giving rote answers to simple questions, Drezner asks the question: ‘teach a four year old that both doctors and policemen help people and what have you taught him? You have taught him to give answers to certain questions.’ He suggests that all this does is make the child look more typical, but he goes on to note that his son is not typical and with autism ‘you can’t hide the differences for long.’ Again,

Lampposts raises the same questions as the focus group did in their concerns about ABA creating a certain form of autistic invisibility and points to the same concern that Brian made: that to claim recovery from autism via these therapies is to deny the evidence before one. The overall message of the film is summed up by Phil Schwarz who is interviewed by Drezner: ‘there are aspects of autism that are disabling and handicapping to different extents in different individuals and there are aspects that are differences that are not intrinsically handicapping or disabling, but may become so because of lack of acceptance.’ The film concludes with the message that the approach to autistic individuals should be ‘less about changing behaviour and more about developing relationships.’

The focus group’s responses to the film were predictably more positive than to most of the representations we looked at, notably contrasted to the sort of documentary images of autism that emerged from The Nature of Things episodes. Mel captured this sense when she noted that at the start of the film she was nervous for yet another predictable representation of autism, but that there was ‘a moment where I just took this really big breath of relief. It’s like okay, this is where we’re going and it was so refreshing where

294 the film went from there and just so different from anything we have watched I thought.’

She also noted a contrast in the interviews between the parents who had come to some acceptance of their child’s autism compared to those still looking for a cure: ‘You can see such a difference in the parents who were accepting and who were learning to learn from their child rather than trying to find a cure.’ Janice felt the film illustrated the possibility for an ‘unconditional acceptance which I found very inspiring’ and Myria finally found the voices she had been asking for throughout our meetings: ‘yeah I loved that there were many different people with autism and who all had different abilities and qualities. I thought that was wonderful.’ Janice and Mel also noted the value of hearing the autistic voices, for Janice it was sharing the joy of a woman who liked to look at dish soap in the bottle and the idea that this may be part of her autism, but is also a legitimate part of her personality. The film also interviewed a woman who kept an old refrigerator as a companion, but again this story was offered as an example of both human and autistic diversity without any sense of the ‘freak,’ or of these actions as illegitimate.

Brian also acknowledged the power of having autistic voices present and for him, it was the music therapist who talked of his own experiences of being autistic and how he had translated those into his own work that was most enlightening. In the film we see this therapist offering guidance and background to other therapists based on his experiences and for Brian this was critical and valuable insight: ‘It’s not just the voice of one person with autism speaking of his experience, he does that well, but he’s also speaking as a professional working through music with other people with autism and that’s brilliant.’

Much as was noted with Carly’s Voice, and in Ian Hacking’s general thoughts on autistic autobiography, Lampposts is part of the positive, deliberate mapping of autism by the

295 autistic themselves. Though the film is made by a parent, it opened up space for autistic adults to express their position on the cure debate, and gently allowed the, often very alternative, presence of autism to simply express itself without over-interpretation.

Mirroring the same argument made by Alderson in his book, the film witnesses the actions of the autistic not as symptoms, but as expressions of who they are, and does not conclude whether to assign these expressions to a person’s self or their autism, because this is not a logical distinction that can be made. Lampposts offers the growth of a knowledge of autism out of the autism community and for that community, and in this it stands in contrast to the broad repetition of stereotypes that was illustrated by the Toronto

Star’s ‘The Autism Project,’ with its images of crisis, tragedy and scrambled wiring.

Emerging from this documentary, then, is the idea of a certain comfort in complexity, in the idea of autism as more than one thing, as not something that can be neatly understood and addressed with either a cure or one form of therapy. Though disability studies deals in complex academic ideas in its work, it does not often talk directly of disability as complexity, as something that is many things at the same time, yet somehow here in this documentary and I would argue also in Alderson’s book and the work of the focus group, autism emerges as multi-faceted and complex, as a complicated part of human diversity and human challenges. An acceptance of autistic complexity may just be a critical piece of autism’s picture as other than disease, more than a disability or difference, and more complex than a position to argue for or against. As was noted by one of the autistic participants in Lampposts, autism can be seen as a ‘gift disguised as a dilemma.’

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Lampposts posits autism in the place of otherness, as an unexpected encounter, as something that comes into the world and into the lives of parents and carers from an unexpected place, but it addresses this encounter through a hospitality to that otherness and difference that approaches the person, the autistic person as person and contributor to the conversation without a withdrawal into preconceived knowledge of their diagnosis or label. In this sense of hospitality, Lampposts therefore does not push autism as otherness beyond the human condition into pathologized otherness, but draws it in as example of diversity. In contrast to many representations explored in this project, Lampposts does not pre-determine what the autistic person is and represents in the world via their label prior to meeting them as individual subject.

Conclusion

This chapter has explored responses to autism that range from the personal wish to radically intervene with a disturbed child, to the more conventional documentary and newspaper making of a social and cultural phenomenon. Much of this work has been reflected on by the focus group and in closing this chapter, I have looked at what I see as more productive discourses of understanding autism as difference and an intellectual difference to be approached with presence and understanding. Throughout these texts I would suggest a pattern emerges of a greater usefulness and insight as we get closer to the autistic voice itself and to those who have the time to be in a peaceful and loving relationship to autistic individuals. This idea is demonstrated in the positive reflections of the focus group on Lampposts and their criticisms of the lack of autistic voices in many other representations; and their wish to make a genuine connection to otherness rather

297 than cure a deficit. This positive turn is also present in Alderson’s book that offers a path through responses to autism that promotes acceptance, and in this sense, Alderson’s book is probably the best Canadian text to date on the subject. Both the work of the focus group in exploring The Horse Boy, and the two The Nature of Things episodes, and in

Alderson’s book point to the idea that the closer we get to autism and autistic individuals and being accepting and present with difference, the less we enter a place of judgment and the wish to change someone’s fundamental nature.

As I conclude this chapter, the question emerges, would we want to live in a world without autistic expression in it? Temple Grandin is clear on this in her interview towards the end of The Horse Boy. Pragmatically she argues that without the presence of the autistic gene and autistic people we would not have many of the tools of the modern world such as light bulbs and control of electricity. Here Grandin is making that connection of autism and asperger to technical competence that is at times uncomfortable but also has many truths to it. But I would go further and argue that there is something else we would miss in addition to these technologies, that autistic expression in all its forms is part of the fabric of the world and that we lost something in the past when we institutionalized it, and we are in danger of losing something when we suppress its expression via behavioural therapies and possible genetic testing. As Titchkosky notes in relation to images of disability, to dwell on these representations is also to wonder about the place of normalcy, and the same argument applies to witnessing the existence of disability (“Disability Images” 75). Being in the presence of otherness challenges our sense of normalcy and usefully reminds us of the diversity and complexity of existence.

These are people we would miss who bring diversity into our worlds. So the task of

298 responding to autism is to support the autistic person to be the best autistic person they want to be. Responses to autism should therefore focus on the needs of the autistic, not a social need for autistic invisibility because that invisibility diminishes us all.

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Conclusion: Thinking About and Representing Difference Differently

Before any learning takes place you have to have a relationship with the person. (Stephen, in Loving Lampposts)

As I have studied autism and its representations over the last four years, I have seen autism portrayed as tragedy, diversity, disability, brilliance and enigma. I have also, as I have lived with this material, taken on aspects of these representations into my own sense of what autism is. Autism has ebbed and flowed between images of diversity and significant disability, between images of an alternative conception of being, and life changing challenge. As I have watched and listened to, explored and written about, these images of autism, ideas have come and gone in my consciousness, along with ideas of how we represent, address and respond to autism. Critically, what has underwritten all of this thinking and writing has been the sense that autism and autistic people need to be approached as people first. Not in the sense of ‘persons with a disability’ that leaves the disability as an adjunct to an otherwise ‘normal’ person, but in the sense that one needs to see the whole person before the label or diagnosis, even as we recognize that their label or diagnosis may be an inherent part of who they are. We need to come to autism with an essential humanity that sees all life as part of diversity and ability/disability, rather than push autism into a pathological diseased state. In concluding this dissertation, I want to find some words and ideas that express this wish to approach disability with an essential humanity, and with the idea of presence that I started to offer at the end of Chapter Five.

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To do this I will relate the ideas and arguments set out in this dissertation to Emanuel

Lévinas’s ethics of philosophical inquiry and the concept of unconditional hospitality that emerges in the work of Jacques Derrida. The aim is to explore how to establish an appropriate ethics for approaching difference that I believe needs to be in place before creating representation. In concluding, I also want to offer some thoughts on the methods used here and how they might also relate to an idea of an ethics of people before knowledge (which is what I think we are dealing with when we talk about seeing the person first in the sense that I have described it above), and note the representations that I feel come closest to this idea of addressing autism as something potentially disabling, but always diverse and essentially human.

Ethics and hospitality in the face of disability

Emmanuel Lévinas offers some thoughts on how we make sense of encounters with otherness, with that which we do not expect and are not familiar, and how these encounters should be approached with a certain ethic or hospitality. He suggests that ‘the other is not first an object of understanding and then an interlocutor. The two relations are merged. In other words, addressing the other is inseparable from understanding the other’

(6). In these thoughts Lévinas suggests that an ethics of encounter obliges a relating and engaging with otherness before determining any knowledge of that otherness. He goes on to suggest that any sense that the prior understanding or knowledge that we bring to an encounter with difference completes, or is all we need to know the other, is a false idea

(10). In other words when we label and name without engaging the other, we close off the possibility for understanding and also create a false sense of knowing in our self. The

301 ethical idea that has value for how we represent autism is the ethic of engaging, and even duty to the other, before a simple application of given knowledge, and the reality that if we just pursue knowledge we limit ourselves even in that task. What Lévinas’s ideas call for, and what differentiates films like Lampposts and the work of the Bridges project, is this ethical approach to the other as not subject of prior knowledge, but as a subject of engagement and connection, as interlocutor, to which we have a duty. And this is not a duty because the other is in some sense lesser or weakened, but simply because they are another subject, are other than the self.

In ‘Dialogues on thinking of the other’ Lévinas captures this relationship as: ‘the human inversion of the in-itself and for-itself (of “every-man-for-himself”) into an ethical self, into a priority of the for-the-other’ and he contrasts it with the idea of possession that derives from the pursuit of knowledge which he describes as: ‘possession is the mode by which a being, while existing, is partially denied’ (202, 8). If possession means a certain predetermined possession of understanding that is brought to an encounter, Lévinas is cautioning against taking the subjecthood of the other as pure object of either gained or applied understanding, as is so clearly the case in the Toronto Star presenting the clichés of autism as original journalistic inquiry. This critique can also be focused at novels such as Atwood’s Oryx and Crake that take a category of otherness and use it simplistically as plot device without ethical consideration for those who live with that label.

Lévinas uses the metaphor of the ‘face’ to describe this ethical acknowledgement of the value of the other and our responsibilities towards the other. The face is symbolic of the acknowledgement of the right of the other to our ethical engagement and also points out that ever fully knowing and possessing that other is a ruse: ‘in the meeting with the

302 face, it was not one’s place to judge: the other, being unique, does not undergo judgment; he takes precedence over me from the start; I am under allegiance to him’ (202). Lévinas makes it clear that this idea of the face is metaphorical, that it does not have to be a face in the conventional human sense, he offers the image of the nape of the neck of the person in front of one in a line as also the face, and he clarifies this point: ‘the face, then, is not the colour of the eyes, the shape of the nose, the ruddiness of the cheeks, etc.’ (232). The face is the metaphor for the moment of recognition and connection. The face is the ethical expression of how we should behave in the presence of otherness and novelty: to see a face, to recognize a face, and be in a place of responsibility and getting to know this otherness before building or retreating to our categories of prior knowing and classifying.

For autism, this is an acknowledgment of what autism as difference can teach, but also the danger of the false assumption that it is possible to fully know and explain neurologically diverse outlooks on the world.

There is, I suspect, some Foucauldian slippage here as the performative power of a name already in a title; in the knowledge of what a focus group is meeting for; and in the name ‘autism’ circulating around a subject (and subject area), inevitably draws on prior knowledge. Here we meet the challenge of the impossibility of having an other, without in the first moment identifying it by a name; of performing the first move of classifying and therefore understanding. But Lévinas’s philosophical ethic offers a way to think about how we respond in the next moment, in the moment noted by Drezner on first receiving a diagnostic label for your child, of pausing what we think we have just learned or what we think we already know, and again addressing and acknowledging the other as subject to be engaged with. Here is the ethical call taken on in Lampposts and in the

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Bridges project of saying here is this difference that has this name, now let it express itself and engage, and do not presume to use a label to confirm what we think we already know. This is the call not to use autism to illustrate one’s own research and prior knowledge and depth of knowledge as the series in the Toronto Star did, and as is found in fictional works like In Tongues of The Dead and Oryx and Crake where a right is presumed to use autism as simplistic narrative device. Vakirtzi and Bayliss in their

Foucauldian methodology of autism point to this problem of coming to the autistic subject with prior knowledge of diagnosis that leads to seeing all that that subject does as symptom or expression of their autism (2).

For Jacques Derrida this ethic of openness comes under the concept of

‘unconditional hospitality’; he offers the idea that ‘pure and unconditional hospitality, hospitality itself, opens or is in advance open to someone who is neither expected nor invited, to whomever arrives as an absolutely foreign visitor, as a new arrival, nonidentifiable and unforeseeable, in short wholly other’ (Derrida in Borradori 128-9).

Derrida establishes unconditional hospitality in contrast to tolerance, which he suggests

‘remains a scrutinized hospitality, always under surveillance’ (128). In his seminars on the idea of the foreigner and hospitality he makes the case for a shift from a conditional hospitality, which can also be seen as tolerance, to unconditional hospitality. Conditional hospitality requires that the foreigner (the other) has the ability to know the rules of engagement, to have the language to play the game; in Derrida’s terms, ‘he has to ask for hospitality in a language which by definition is not his own, the one imposed on him by the master of the house’ (Of Hospitality 15). By contrast unconditional hospitality does not require the foreigner to know the rules of engagement.

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In the context of disability and autism, this conditional hospitality or tolerance requires the autistic to conform to certain social expectations of either normalcy or their diagnosis, or to the rules made by a neurotypical culture. Here is an image of potentially impossible expectations of conformity being placed on the autistic who may come from outside the language and rules of normative expression. Conditional hospitality places the requirement for movement and effort onto the other and in this sense behavioural therapies like ABA look very much like a conditional hospitality. In the wish that ABA will reduce the symptoms or expressions of autism (as Drezner notes make autistic children look and behave in a more typical way), ABA appears as a conditional tolerance that asks everything of the autistic individual and little of the dominant culture. In opening space to the autistic through an anticipation and intervention of conformity ABA offers a narrowed opportunity for autistic engagement with the non-autistic and a limited hospitality. ABA, then, is the expression of the expectation of conformity and assimilation, and of the requirement for the autistic to conform to the rules of the ‘host’ in order to be received in a hospitable relationship.

By contrast, unconditional hospitality or the ethical openness to the face of the other is ready to meet the other at a place and in a way that does not ask them to know the rules, or be able to work by those rules. Derrida makes an appeal to this idea when he says,

Let us say yes to who or what turns up, before any determination, before any anticipation, before any identification, whether or not it has to do with a foreigner, an immigrant, an invited guest, or an unexpected visitor, whether or not the new arrival is the citizen of another country, a human, animal, or divine creature, a living or dead thing, male or female. (Of Hospitality 77) This appeal, then, is the wish for Lévinas’s idea of an ethics of care before knowledge and of the wish for the other to become interlocutor and subject before being an object of

305 knowing. Though Derrida does not mention disability by name, his appeal captures the relationship that should exist between the typical and the disabled. Through an unconditional hospitality, autism is first seen as an essential shared humanity before it is seen as a definition of deficit and a rote knowledge of response. The contributions from the place of autism become as valuable as those of the non-autistic ‘host’ and the very definition of who is the host and who is the foreigner, who is the giver and who is the gainer of knowledge, breaks down. These ideas have consequences for how interventions with autism are understood, but they also have consequences for the process of representation as they ask that the cultural making of autism acknowledges its ethical obligations to be open to autistic expression, as well as pre-conceived ideas of what autism is.

Concluding thoughts on intervention

In the context of therapy and intervention, Lévinas’s ethics of the face and

Derrida’s unconditional hospitality offer a way to critique interventions that attempt to hide or create a recovery from autism, and fundamentally they critique the very idea of autism as a medical problem. If we accept autism as a disability or difference, then unconditional hospitality asks for an approach to autism that engages and respects it, and does not attempt to hide it. Though interventions with autism appear, in one sense, to always be a conditional hospitality, in that they imply that there are aspects of the autistic person that should change, the pragmatics of seeing a child in distress, or not achieving their potential, calls for a nurturing hospitality. A pragmatic unconditional hospitality is not to ignore the other, but be hospitable to their needs, critically in order to help them

306 flourish, rather than help alleviate the discomfort of the ‘host,’ or make the autistic appear more neurotypical.

In contrast to behavioural therapies that in the first instance ask autistic people to ape neurotypical behaviour, the philosopher and neurologist Stuart G. Shanker’s research at York University takes a more hospitable approach to supporting autistic children.

Firstly, Shanker does not determine that autism and other developmental disabilities are simplistic deviations from an otherwise universal norm. He does not posit as natural a set of normative behaviours against which any otherness should be measured. He notes: ‘we are confronted here with the problem that the manner in which one conceptualizes a

‘healthy mind’ is inextricably bound up with one’s social values’ and he notes how

‘social conditions and demands’ can be the source of pathologizing behaviour (4, 10). For

Shanker the first move is to acknowledge that the ‘foreigner’ that we need to be hospitable to is defined not by reference to nature, but to culture, and that should caution us to be sensitive in how we define what is normal healthy and appropriate (4).

Rather than following the aims of recovery from autism, which imply a desire for autistic invisibility and an over-confident sense of normalcy, Shanker’s work talks in terms of creating: ‘her capability to rise to the challenges to which she will be exposed’ and expresses the wish to raise a child’s ‘motivation, interest, curiosity, pleasure’ in the world in which they find themselves (5, 12). In this approach a distinction is made between modifying behaviours and helping children develop their own capacities to engage. Space is retained for engagement and capacity to be revealed through non- normative expressions, and the measure of success is not based on the appearance of

307 normalcy (to say that policemen and doctors help people for example), but on a genuine capacity to live well.

Unconditional hospitality and respect for the other is retained in the very pragmatics of the therapy. The approach called Developmental Individualized Relationships-based intervention (DIR, sometimes referred to as Floortime in an acknowledgement of the child-centered nature of the therapy) sets as its first requirement that ‘the adult joins the child’s focus of interest’ and secondly, ‘the adult arranges the environment to encourage initiations from the child’ (3, 2). Rather than the therapist (the host) dictating the agenda of interaction, the therapist solicits the engagement of the autistic child (the foreigner) in the creation of the therapeutic moment; the child’s expressions and needs have equal value in the interaction. The DIR approach includes the practice of mirroring or copying a child’s behaviour, legitimizing the child’s expression of themselves. Rather than determining a normalizing agenda, ‘therapists and parents follow the child’s natural interests to create opportunities for interactive play’ (Hoffman 116).

The rewards for parents and therapists in this therapeutic model is true engagement with the child and the ability to see self-expression as progressive rather than potentially awkward symptoms of autism. Success is determined not by successful mimicry, but greater engagement in a shared world. At heart, Shanker’s application of DIR points to a hospitality to autism and an expectation of the autistic person being present and part of their own life journey that puts their subjecthood ahead of the apparent limitations of their diagnosis. It requires of the therapist a presence with otherness that does not prejudge, and therefore also rewards the practitioner with a genuine sense of interaction. In contrast

308 to the conditionality of behavioural therapy, the requirement for movement is not placed wholly on the autistic other.

Concluding thoughts on representation

Lévinas and Derrida help us find the tools to point to the fundamental differences between interventions with autism that support difference and work in the interests of autistic individuals, and interventions that offer a conditional tolerance that work towards an autistic invisibility. It should also be possible, then, to explore what responsibilities these ideas of an ethics of the face and unconditional hospitality lay upon autistic representation, and the specific representations that we have looked at in this work.

The first point that comes to mind, and one that has been repeated above in relation to Lampposts, is letting autistic expression be present in its representation, and acknowledge the need for what autism is, and its relation to the non-autistic, to be mediated by autistic people. Representations that claim defining and documenting status that do not have this autistic expression present, are, I would suggest, in danger of limiting their hospitality to otherness in their habit of exclusion. I would particularly note both episodes of The Nature of Things that while debating what autism is and how to respond to it, do not solicit the voices and ideas of the autistic community. This criticism, which was noted by the focus group, could also be made of the Star’s ‘The Autism

Project’ that offered only two short paragraphs from autistic individuals, and reproduced many of the commonly held myths and clichés of autism. This tendency was neatly summarized by the editorial comments about damned lives and mixed-up wiring

(Editorial, “Ontario’s Shame” A9).

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The reproduction of the reductive clichés of autism as only social alienation, savantism and technological genius could also be argued as examples of putting prior knowledge and ideas of fundamental difference before interaction and shared humanity.

Within what could be called the Rain Man version of autism, of representing autism as always being a combination of other-worldly ability and crippling disability, there is a denial of the diversity of human differences and competences that fails to meet the ethics of unconditional hospitality. In Lévinas’s ethics of knowledge, in the wish to not put the knowledge of the label ahead of the person, we can also see a criticism of Maloney’s approach to Glenn Gould, as the label takes credit for, and overwhelms, Gould the person.

I would suggest this stands in contrast to the Gould portrayed in 32 Short Films About

Glenn Gould, where we meet the person without a diagnostic label, and the image of a challenging life is presented free of a neat explanation. In leaving a life presented without naming its problems, the film left the focus group with the space to offer empathy for the life that was, and think on what the life could have been if Gould had received more support or a diagnosis.60

The idea of autism as device and metaphor also opens up uncomfortable territory for the wish to be hospitable to autism. The use of autism as cultural metaphor usurps the person behind the label; in effect, the process places the label ahead of the individual and becomes the most focused of lenses through which to see them. The most dramatic example here is Atwood’s Oryx and Crake where Asperger’s is not only metaphor for the causes of a near future techno-environmental crisis, but Crake is posited as that other in our contemporary world that we should be least hospitable to, that which is intent on our

60 It should, of course, be remembered that this lack of labelling may not have been deliberate as Asperger’s and its related discourse was hardly present when the film was made.

310 destruction. In Tongues of The Dead, though less outwardly damning of the autistic than

Atwood’s text, the image of autism as again gift and disability occupies the place of simple plot device in a fantastical structure that as Hacking notes does not advance any understanding of what it means to be autistic or how autistic people really fit into the world (“Autism Fiction” 643). This use of autism, and disability in general, as backdrop and reflective surface, as prosthesis for the adventures and moral arguments of the non- disabled that so frustrates disability scholars, would appear to be a clear example of the lack of hospitality or the conditions on hospitality that normative society places on disability. These fictional makings of disability as life challenge to the non-disabled, and as backdrop, affirm limited expectations of otherness, and illustrate the narrowed cultural roles that are open to disabled subjects.

The repetition, then, of the clichés of savantism found in Tongues and the repetition of other limiting and conventional images of autism found in other fictional representations such as Oryx and Crake and Rain Man promotes a pre-determined knowing of autism that is not open to autistic individuals we may meet in our lives. Nor is the social crisis outlook promoted by the Toronto Star series. This repetition of reductive and antiquated ideas, as I suggested in Chapter Five, counters Hacking’s thoughts of the emergence of an autistic voice, as this voice has to battle through the repetition of out- dated and conventional makings of autism and disability.

In looking for fictional representations that offer a more productive image of autism, the focus group was more positive in their responses to Snow Cake. I would suggest that this positive response emerges in part from the film’s gentle teasing out of how autism is defined and of its avoidance of the cliché of savantism. Snow Cake also allows the central

311 non-autistic character to approach autism as an unknown, and for the audience to witness his lack of pre-judgment when engaging with Linda and her autistic expressions.

Critically this meant for Alex, not a precious response to disability of a disability label explaining all that leaves disability and Linda unconnected with. Rather, Linda and Alex become true interlocutors in the negotiations of sharing space and getting to know each other. I would also suggest something similar and potentially positive existed at the start of Coupland’s Player One as Rachel is allowed to form her character before it is clearly set out as an autistic one. However, the moments of finding the divine and momentary experience of cure at the end of the book cast an uncomfortably medieval image of disability being either gift or punishment in the hands of God. This perspective was also present in Tongues, and was also an undercurrent in Horses Hockey & Haloes, as a strong

Christian faith is implied as the best approach to the child’s autism.

Within the autobiographical accounts of autism that are, in a sense, hidden within familial narratives, there is also the potential for genuine expression of autism and of a space being opened up to hear from an autistic perspective. Within Carly’s Voice and The

Road Trip, there are moments of highly productive autistic expression, of the ideas and impressions of the world coming directly from autistic individuals, but in both these texts these moments are in danger of being lost in the parental narratives. Notably in Carly’s

Voice the finding of the ‘voice’ is cast as something of a recovery or cure, at least for the father who wanted his daughter to be more ‘typical.’ Carly’s Voice is also vulnerable to a form of heroic overcoming narrative that casts the story as exceptionality that is amplified by the connections with Hollywood stars and upper-middle class social leverage. In this sense there is a connection between Carly’s Voice and The Horse Boy, which also, at

312 times, presents a very positive image of acceptance and wish for understanding, but runs the danger of losing this message in the heroic adventures in a foreign land that introduces another image of lack of hospitality, as the otherness of Mongolia is realized via a colonial lens.

If The Horse Boy at times offers productive insight into how to approach and see autism, but fogs this image with heroism, then does Alderson’s instructive text and

Loving Lampposts get closer to an approach to autism that could stand up to Lévinas’s ethics and Derrida’s idea of an unconditional hospitality? Though acknowledging their very different places in the range of autism representation, I would like to answer in the affirmative for both texts. Alderson’s book is a detailed guide for carers, parents and professionals, and Drezner’s film aims at more general awareness raising, but I would argue that both texts, approach the subject of autism with a wish to learn from, and be ready to be guided by it. I would suggest this willingness is the fundamental requirement of a hospitable representation; to pose a question, what connections can be made here and what can be learned here? Drezner’s film and Alderson’s book, then, sit alongside the work of the Bridges project in offering the most space and least judgment to autistic difference.

Concluding thoughts on an academic approach

The call for making connections first and the idea of mutual journeys of learning also connects to the ideas that guided the work of the focus group. In moving this project in an interdisciplinary direction, to include within it techniques of cultural critique and the experiences of an ethnographic project, I wanted to pay respect to the idea that knowledge

313 can come from many places and emerge in different ways in different contexts. In this, there was a wish to be hospitable to a diversity of readings of representations of autism.

In offering some concluding thoughts on my approach to this work, I want to ask if the alternative methods and techniques used here meet the criteria of unconditional hospitality and an ethics of connection ahead of assumed knowledge?

As I noted above, alongside Lampposts and the film from the Bridges project, the focus group offered some positive thoughts on Snow Cake. The general sense from the group was of a film that rendered autism with originality. The pervading sense of oddness and otherness that was present in all the characters in the film also came in for positive reflection. Brian was also directly uncomfortable with the sort of prosthesis critique that

Stuart Murray offers of the film. Murray suggests that Linda’s autism acts as a plot device or backdrop to the development of Alex, that Snow Cake is an example of autism as

‘narratively enabling’ (123). For Brian there was a need to change the conversation and see Alex and Linda’s narrative journeys as more mutually influential, as a more

‘reciprocal relationship.’

In a focus group member challenging what could be seen as an established disability studies critique of prosthesis or aesthetic nervousness that is often focused on representations of disability, there is evidence that the focus group did not just reinforce a conventional academic position on autism representation. In this counter view or questioning of an academic critique, I would suggest the focus group approach adds to the methods of disability study and offers a caution to the habit of too often seeing the negative construction of disability in films and other texts. This counter positioning, however, still leaves open the possibility of the opposite position existing, of the focus

314 group being guided to offer deliberately critical positions on method in order to justify and support a particular ethnographic approach. That is, it is possible to question whether

I guided the group to particular critical thoughts in order to create a narrative that questioned and critiqued a perceived conventional academic position that I wanted to challenge. Though others will have to ultimately judge this question, I do have to acknowledge that in interpreting and relating the ideas of the focus group, I do insert myself into the work and in part reintroduce the singular academic voice. As Radway noted of her work on romance fiction, ‘ethnographic description of the “native’s” point of view must be an interpretation or, in words adapted from Clifford Geertz, my own construction of my informants’ construction of what they were up to in reading romances’

(5). Having offered this caution, I suggest that the structure of the focus group and the idea of an open conversation hospitable to the ideas expressed by the group is the best defense against this problematic and criticism.

The focus group and its methods clearly offered a chance for a collective learning and debating experience that did draw out new ideas and positions on the representations watched. In avoiding conventionally managed interviews with direct questions the work of the group was more than a process of mining information, but was a series of

‘cofacilitated knowledge exchanges’ to note Charmaz and Koro-Ljungberg’s idea, and I would suggest at times went beyond knowledge exchange to create novel ideas and concepts from within the collaborative experience (430). In attempting to create an open context for the discussions, with the potential of using radically alternative interrogative methods such as cluster poems and body papers, the focus group, I believe, worked in an un-dogmatic and genuinely hospitable relationship to the material at hand. Both the

315 material viewed and the group members stopped being the subject of pure knowledge acquisition and became interlocutors in a debate over meaning and effect.

The one critical challenge that this project still faces is the lack of autistic individuals in the focus group. As I noted in Chapter Two there were questions over how to achieve a form of informed consent with an autistic group that would satisfy the ethics approval process, which would have led to limitations on who these autistic persons were.

I would argue, therefore, that in practice the limitations that would have been put on the selection of a focus group that contained autistic individuals would have made that group no more representative than the one that actually met. Our group was diverse in its background, but shared a common interest in autism and the common experience of one autistic child.61 As I argued in Chapter Two this common thread and comfort in each other’s company, combined with the methods and structures of the viewing experiences, I believe, led to the production of genuinely useful and original critique. Acknowledging the idea that no final reading of a text is possible, and that a fully representative focus group is also not a possibility, in an ideal world this inquiry would have been supported by a series of focus groups made up of a diversity of autistic and non-autistic individuals, but this was beyond the scope of this project.

In the structure of the focus group, in meeting in a place of comfort with a desire for a mutuality of relations, the space for knowledge creation came before knowledge itself.

61 I should acknowledge at this point that the autistic child that connected group members was also not present at the meetings, nor were members of his immediate family. His parents had knowledge of the focus group, but had made it clear that almost all popular representations of autism distressed them. In this sense there was a certain presence who was in mind but also absent from our meetings. The child concerned had shown little interest in film and television in general and his disabilities would have made his presence in the meetings a challenge, therefore it makes sense that he was not with us. However, from an advocacy point of view I still wish to acknowledge his absence.

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In this structure an ethics of care for autism and each other emerged before the claims of methodology. In this sense, I would suggest that the work of the group met Lévinas’s ethics of knowledge, of creating an ethical process that set its priority for the other first

(202). Within certain approaches to cultural criticism the other is potentially the non- academic, the undefined and homogenous public that is seen to be subject to the consequences of representation. It is an other that remains outside because it has not learned the techniques and methods of the academy.62 Part of the wish to draw this other into the academic conversation is to recognize Lévinas’s point that to keep it at arm-reach, as framed by prior knowledge, is to limit both hospitality, but also a sense of mutual learning and understanding. This relation to the other applies in this context to the members of the focus group, and to the idea of autism as represented within the viewed material. In attempting to act within the ethical framework offered by Lévinas and

Derrida the intent of the process shifts from intellectual extraction to mutual journey of learning. In not placing the academic inquirer ahead of the texts and the participants, the focus group project became an attempt at unconditional hospitality open, to paraphrase

Derrida, to whatever came along, expected or unexpected.

True hospitality to the other, then, as the non-academic, the autistic, and that which we are yet able to name is a ‘listening’ to the other and letting their expressions be that which sets out their interests. Further, this is done without any final expectation that even this ‘listening’ will get to full understanding, but rather to a mutuality of presence that allows space for the continuance of a discourse. For Lévinas, knowledge comes after ethical care and I would suggest that the first move in that ethical care is an open presence

62 I offer the idea that the audience remains other and outside here in the sense that, as Miriam Hansen suggests the audience can become a ‘textual term,’ spoken for and homogenized, and assumed to lack the critical ability held by the academic critic. (see Chapter Two, Hansen 2)

317 with otherness, that knowledge needs to come after we have become aware, hospitable and present with that which is before us. Working on the idea of being present and engaged with otherness, then, is our best protection against losing touch with this ethical position and reintroducing privilege and conditions on knowing in the process of both representation and criticism.

Being present with autism

In the Afterward to his 2012 book Autism, Stuart Murray offers the thought that ‘I have always thought that the predominant issue raised by autism is the sheer fact of its presence; it is here and will always be so’ (105). He also dedicates the first chapter of

Representing Autism to the idea of autism’s existing and emergent presence in contemporary culture. Murray’s point is that autism has gained a place in contemporary discourses on otherness, mental health, disability and social response. But he also makes the point that autism is ultimately a matter of the personal, that it comes down to individuals. He notes that ‘it is the presence of the person with autism, rather than an abstracted idea of the condition itself, that needs to be the starting point of any enquiry,’ and in his later book he offers: ‘it is also essential to recognize that it is always in personal form, always individual’ (Representing Autism 28; Autism 105).

Murray’s valuable reminder of the human nature of autism, of autism as lived experience (of presence in our world beyond its presence in a debate), is a critical one, but there is a further way in which presence comes into play in both the representation of autism and in our relation to autistic people. I refer here to being present to otherness, to find comfort with the foreigner in whatever form they present themselves and for that

318 person to guide our knowing of that otherness. To do so, requires a hospitality that acknowledges that autism is both present in our world and that if we are going to do right by it, we need to be in a mutually hospitable relationship to it. There is a need for the non- autistic to be at peace with, and present with, this form of otherness in its many and varied forms and for the non-autistic to be comfortable with the foreigner and their expressions. To bring an appropriate energy and acknowledgment to autism is to be present with autism without a wish to change it. Doing so requires being aware of the differences between distress and self-expression; of knowing when to support and when to give space; and of desiring to represent it in all its complex forms. This presence acknowledges that representations of otherness should start from that location, from the autistic community itself, and not attempt to reduce what autism is to something that sounds easy to convey.

Presence with autism is a wish to support and offer help to autistic individuals where their autism is disabling, and help autistic people negotiate a place in a world that is at times alienating, but with no wish to make them non-autistic. Both I and the focus group have argued that the autistic voice is missing from most representations of autism and this is a vital criticism, but in being open and present to autism when we meet it, there is a greater possibility that its expressions will penetrate the reductive clichés that dominate current media images of autism. The difficulty in finding this openness is that the discourses and lenses set by existing representations offer little language for doing this.

The tasks this sets before the representative arts is to challenge conventional understandings of autism; stretch existing knowledge; and question what both autism and

319 normal might mean in contemporary society. Underlying this idea is the wish for people who do not fit the current image of the norm to have access to less painful lives, lives that are more accepted and less clearly pathologized by their representation. For therapy and intervention the task is one of supporting autism and autistic individuals, not fighting autism. For academia the task is being open to a complex pattern of voices and ideas that places care and support for difference ahead of knowledge, and is open to learning from unexpected places.

At the end of his first book, in discussing his relationship to his own autistic son,

Murray offers the following: ‘The central irony is not lost on me: someone supposedly lacking in so many things has taught me more about being human than any person on the planet. He is in every word of these pages, and he is always singing his own song’ (216).

And so I want to conclude with a similar thought, as I noted in my preface my relationship with one autistic boy has paralleled this academic journey of writing a Ph.D. and in this time, he has been my greatest teacher. He has taught more critical lessons about being alive and present to another human being, and being hospitable to what that person brings to this world, than any amount of reading or conventional study. In many ways these should be my final words, but I want to honour more directly in this final moment the voice of autism and an expression that connects deeply to the idea of an unconditional hospitality: ‘If others think in limits about us, it is as much a barrier as cement in the road’ (Andrew Bloomfield, Bridges-Over Barriers 13).

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Focus Group Material

“The Autism Enigma.” The Nature of Things. Canadian Broadcasting Corporation (CBC) Television, 8 Dec. 2011. DVD.

Bridges-Over-Barriers in Our Own Words. Dir. Andrew Bloomfield. Bridges-Over- Barriers, 2010. DVD.

“The Child Who Couldn’t Play.” The Nature of Things. CBC Television, 1995. DVD.

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Loving Lampposts Living Autistic. Dir. Todd Drezner. Cinema Libre Studio, 2011. DVD.

Snow Cake. Dir. Marc Evans. Alliance Atlantis, 2006. DVD.

Thirty Two Short Films About Glenn Gould. Dir. Francois Girard. Columbia TriStar Home Video, 1993. VHS.