Autism, Parallel Embodiment, and Elemental Empathy

Scheherazade’s Sea –

autism, parallel embodiment, and elemental empathy.

Dawn-joy Sau Mun Leong

A thesis in fulfilment of the requirements for the degree of Doctor of Philosophy

UNSW Art & Design

April 2016

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Surname or Family name: Leong

First name: Dawn-joy Other name/s: Sau Mun

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School: UNSW Art & Design Faculty:

Title: Scheherazade’s Sea – autism, parallel embodiment and elemental empathy

Abstract 350 words maximum: (PLEASE TYPE)

Epic expedition. Ability and disability. Approbation and excoriation. Admiration and derision. Traversing alien social interactional landscapes, balancing contradicting extremes of mental anguish and physical pain, with unadulterated wonderment; the autist grapples constantly with a heightened consciousness of Parallel Embodiment: juxtaposed oxymoronic existence of Self within the realm of Other, as if awake inside a silent, roaring dreamscape.

“Scheherazade’s Sea – autism, parallel embodiment, and elemental empathy” is not merely an investigation of compelling phenomena, or a crafted showcase of autism. It is an invitation to enter and partake of a parallel- embodied domain, sharing sympathetic resonances via channels through which the autist apprehends and experiences the world: intrinsic detail-focused cognition, and sensory portals of touch, smell, taste, hearing and sight.

The ‘social deficits’ ascribed to Autism Spectrum Condition in current authoritative diagnostic systems (DSM and ICD) are based on a normative model of social interaction, underpinned by traditional arguments that autism is defined by a lack of empathy and other social, functional deficits. Instead of addressing autism through prevalent neurotypical constructs and measurements focusing on perceived impairments, such as the so-called ‘Theory of Mind’ hypothesis, this thesis investigates the unique sensory and cognitive features inherent in autism that reveal richly dynamic sentience of Self and Other, in order to generate a distinct conception of contrapuntal embodiment and alternative Empathic Consciousness.

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Abstract

“Scheherazade’s Sea – autism, parallel embodiment, and elemental empathy” is not merely an investigation of compelling phenomena, or a crafted showcase of autism. It is an invitation to enter and partake of a parallel-embodied domain, sharing sympathetic resonances via channels through which the autist apprehends and experiences the world: intrinsic detail-focused cognition, and sensory portals of touch, smell, taste, hearing and sight.

(An abstract of 218 words)

Dedication

To my father,

Dr. Leong Vie-Ying (1930-2007).

ACKNOWLEDGEMENTS

This work would not have been possible without the following:

Deepest gratitude to my supervisors, Professor Jill Bennett, Dr. Petra Gemeinboeck, and Dr. Sally Clark, for your patience, guidance, advice, support, and for believing. …

My Lucy Like-a-Charm – my muse, inspiration and guardian angel. …

My family:

Thank you, mother, Molly Chye Gek Ong, for your care and fortification.

My beloved baby-sister and faithful champion, Althea Leong, thank you for always being here, there, and everywhere for me.

Dear brother-in-law, Robin Sing, thank you for your patience, sustenance and unquestioning support.

My canine nephews, Bizcuit and Tiny Sing, for the cheer. …

Much gratitude to my friends who have played important roles in my journey:

Yee Sang, Ho Rick Johnson Minh Vuong Kateryna Fury C.J. Wan Ling, Wee Margie Anne Edmonds Brad Beadel Gavin Koh Boon Ling, Yee Shane Fenton Andrea Kingan Colin G. Marshall and Misty Marshall Shan Patterson and Sally Patterson Rosemary Wilkinson Table of Contents

1. INTRODUCTION ...... 3 SCHEHERAZADE’S SEA 2010: ESTABLISHING A PREMISE ...... 8 Co-existence ...... 10 Eclectic expressions ...... 11 2. PARALLEL EMBODIMENT ...... 13 ‘AUTISM AWARENESS’ – WHAT ARE WE ‘AWARE’ OF? ...... 13 The medical pathological model of autism ...... 15 Sally, Anne and the Theory of Mind hypothesis ...... 17 Who is lacking in empathy? ...... 20 AUTISM AND THE SELF-OTHER CONUNDRUM ...... 22 Social empathies ...... 23 IN THE REALM OF THE SENSES ...... 26 The Intense World Theory and Enhanced Perception Model ...... 29 INHALING AND EXHALING – PERSONAL NARRATIVES ...... 31 Stimming – the speaking body ...... 33 Fact and humour ...... 35 Worded Fragments – painting the senses ...... 36 Storytelling ...... 38 3. SPACE OF MIND ...... 40 Moving in the body ...... 43 Focusing on the senses ...... 49 Word-of-Mouth ...... 54 Metaphor ...... 64 SPACE OF MIND ...... 67 Personal anecdotes: is anyone listening? ...... 70 ‘Data-based’ study – whose data? ...... 73 Strange conversations ...... 78 LISTENING TO LUCY – AN INTIMATE NARRATIVE ...... 82 Parallel embodiments - in propria persona ...... 85 EMPATHY THROUGH SENSORIAL RESONANCE ...... 88 Do not despair ...... 89 4. OPULENT SEA – DISARMING THE MYTH OF BARRENNESS ...... 93 CONTRAPUNTAL CONVERSATIONS ...... 93 Departing Bluebeard’s Castle ...... 95 The autist as artist and artist as autist ...... 98 THE HAPTIC HUGSHRUG – DEEP CONSOLATION ...... 101 Rubato – traversing Self empathy ...... 103 Rondo – structure, repetition and freedom of expression ...... 106 Haptic HugShrug version 2, 2013 @ Vivid Sydney ...... 109 Haptic HugShrug version 3, 2015 @Sonata in Z ...... 110 5. THE TRILOGY 2013-2015 – CREATING CLEMENT SPACE ...... 117 EXPRESSING SPACE OF MIND ...... 117 ROARING WHISPERS 2013 – PRESENTING THE SILENT SCREAM ...... 119 Invitation into Parallel Embodiment ...... 120 Sharing Space of Mind – autistic empathic resonance ...... 122 Sensory association and inevitable performance ...... 124 The primal beast ...... 127 Mirrors and relections ...... 129

1 LITTLE SWEETS 小甜心 , 2014 – A SENSORY ODYSSEY ...... 130 Arduous odyssey, innocuous trophy ...... 131 Re-orientating chaos ...... 134 Canine inspiration ...... 137 Empathic endeavour ...... 139 SONATA IN Z – IN SEARCH OF CLEMENT SPACE ...... 141 Sonorous Repose ...... 144 Grace and gracefulness ...... 146 Paper chains – an exercise in elemental empathy ...... 147 Existential dissonance – ‘impaired’ Space of Mind? ...... 149 Sonorous counterpoint ...... 151 6. RECAPITULATION ...... 153 Inclement space ...... 155 Violation of Space of Mind ...... 157 Devastation of empathy ...... 158 Broken integrity – organic severance ...... 162 Reviewing the turbulence ...... 165 Imperfect grace – empowering beauty ...... 167 BIBLIOGRAPHY ...... 172 GLOSSARY ...... 180 APPENDIX A ...... 181

2 1. INTRODUCTION

This dissertation is part of a protracted journey in search for Being, set within the context of Parallel Embodiment: a detailed study of juxtapositions of Self and Other,1 and an examination of multidimensional interstices of dynamic, interactive reciprocities. Theoretical, practical and autobiographical, the fundamental driving force herein is yet more than the combination of these perspectives: ‘the work’ is a process that palpably, in an act of physical effort, carves a life of its own in the researcher’s mind.

Three central concepts are introduced: 1. Autism as a Parallel Embodiment; 2. The Endeavour of Empathy; 3. Space of Mind, from which emerges an alternative empathic system.

Rather than looking at Autism Spectrum Condition through normative social constructs and measurements, and prevalent models of deicits arising from this system (for example the so-called impaired Theory of Mind and lack of empathy hypothesis), this thesis investigates sensory and cognitive traits unique to and inherent in autism in order to generate an alternative conception of Empathic Consciousness. Mainstream scientiic literature and normative social belief about autism are countered with autobiographical and anecdotal evidence from autistic persons in a vigorous dialogue. The endeavour of empathy is approached from the premise of Autistic Parallel Embodiment, a separate yet co-existing neurological construct and functional culture. Instead of the wretched, infertile landscape as painted by convention, the autistic paradigm will be revealed as a richly endowed,

1 My discussion of Self-Other dichotomy refers to the Autistic Self as viewed from introspection of native neuro-functional and individual-speciic components, and the effects of internal impressions upon extrospective social-relational aspects of life. The Other is the non-autistic entity, individual and collective, bearing separate neuro-functional and personal traits, as well as adhering to a disparate social-relational code of normative behaviour.

3 multidimensional neuro-culture with a cogent alternative empathic system emanating from a sensory-elemental connected ‘Space of Mind.’

The theoretical foundation for this work is constructed from documented studies in neuroscience, anthropology, the arts and humanities, and personal anecdotal evidence from autistic individuals. At the same time, my artistic practice acts as concretising agency by creating experimental ‘sharable’ spaces that serve not merely to display autism but much more importantly to invite dynamic, personiied communion – welcoming non-autistic Other to enter into experiential space with autistic Self – thus connecting individuals across neuro-cultural divides through mainly non-didactic, sensory empathies native to autism.

Encountering for the irst time my research and artistic oeuvre, I am often questioned about my use of pedagogical models, and some attempt to situate the works within established frames of practice. Within which convention does the work fall? How does one ‘frame’ this work? In the preceding paragraph, I used the word ‘experimental.’ If this is an experiment, what is its ‘expected outcome’ or ‘hypothetical goal’? Some observers have described my practice as art-informed research, while others as art- practice-based, or research-focused art. Although there may appear to be overlapping areas of similarity, this autistic artist inds it dificult to explain that my creative enterprise does not deliberately set out to relect any speciic methodology, even though it may fall into one or another category, but it is merely a way of Being.

Stemming from the pervading preference for global thinking and exaltation of central coherence, we are taught by tradition that every explorative and creative effort ought to have in place a clearly projected hypothesis, or a well formulated blueprint from the very outset. The autistic mind, in contrast, is predisposed towards detail-focused perception, or what is popularly known as ‘bottom up thinking.’ Based on indings

4 that indicated a marked penchant for pattern recognition and ixation on repetition2 and a superior ability to ignore extraneous distraction while honing in on detail,3 neuroscientists initially attributed these skills to an impaired comprehension of global perspectives: Weak Central Coherence.4 So ixated on minutiae alone, the autist was purportedly unable to analyse and piece together fragmented components of information and ideas in logical relational order, so as to form a cohesive entity encompassing broader, signiicant meaning. In recent years, however, further investigations have altered the view on Weak Central Coherence. Subsequent studies suggest that this ‘weakness’ does not necessarily indicate impairment, but rather points towards an intrinsic cognitive proclivity. When explicitly required, autistic individuals are well able to perform global processing tasks at the same level of competence as non-autistics.5

The sensorial dimension is crucial and symbiotic to the cognitive in autism. Personal accounts from autists afirm that their ‘way’ of perceiving and experiencing the world relect a strong predisposition to seek sensory channels. The sensorial pathways of sight, hearing, smell, taste and touch work cogently together with related combinations of visual imagery, pattern and rhythm. Well-known autists like Temple Grandin, Donna Williams and Daniel Tammet have written and spoken extensively about their individual perceptual pathways. While the actual presentation may differ widely from one person to another, autists share a similar fascination for details, and the tendency towards systematic gathering of information on subjects of intense interest.

2 Uta Frith, “Studies in pattern detection in normal and autistic children: I. immediate recall of auditory sequences,” Journal of Abnormal Psychology 76 (1970): 412-20.; Uta Frith, “Studies in pattern detection in normal and autistic children: II. reproduction and production of colour sequences,” Journal of Abnormal Psychology 10 (1970): 120-135.; Uta Frith and Maggie Snowling, “Reading for meaning and reading for sound in autistic and dyslexic children,” British Journal of Developmental Psychology 1 (1983): 329-342.

3 Uta Frith and Amritta Shah, “Why do autistic individuals show superior performance in the block design task?” Journal for Child Psychology and Psychiatry 3, no.8 (1993): 1351-1361.

4 Uta Frith, Autism, Explaining the Enigma (Oxford: Blackwell, 1989): 97, 108-110.

5 Happé, Francesca, and Uta Frith. "The Weak Coherence Account: Detail-focused Cognitive Style in Autism Spectrum Disorders." Journal of Autism and Developmental Disorders 36, no. 1 (2006): 5-25. 5 The answer I am best able to offer in response to questions on situating my practice is: Process – and its pursuit. The autist’s Process, however, should not be confused with the Process Art movement. While the latter is essentially a constructed artistic approach, the former is in fact an intrinsic and inexorable modality, an organic expression of a neurological system. Process, to the Autist, is as crucial as the inal outcome. In some cases, process is paramount and inality is an incomplete oxymoronic concept in itself. The intense detail-focused mind of an autist is not necessarily unable to paint sweeping landscapes, it merely delights in the vibrant and dynamic energy of pursuit: a quest to discover vast universes within minutiae, chasing an idea through meandering tunnels with no ixed thought about the shape and form of an expected end. There is a tacit awareness of material interconnectedness – a conscious recognition of global cohesion – yet, for the autistic mind, it is the complexities of microscopic containments that fascinate and hold the keys to wider expanses of understanding. In other words, the fundamental energy behind this work is rooted in the elemental relationships that are native to the sensory and cognitive functioning inherent in Autism Spectrum Condition, as experienced and perceived from within autism. Process, thus, becomes to the autist the Endeavour, an embodied resonance that “embraces the entirety of existence, where the cerebral is in persistent, active sympathy with dynamic material.”6 Every endeavour possesses its own vibrant personiication, and for the autist, Endeavour is not theoretical excursion but rather the embedded visionary and resonant sentience of all effort.

The autist’s ‘process’ and ‘endeavour of process’ also often transcend arbitrary disciplinary demarcations. Transdisciplinary science-art and art-science research and practice is not uncommon: collaborations between scientists and artists produce powerful offerings of polymathic, holistic insights into our world. The challenge faced by the autist partaking actively of life in a normative-dominated domain is how to express the journey of hermeneutic discourse, empirical experience and praxis in a way that is acceptable to prevalent tradition, accessible to the non-autistic thinking,

6 while at the same time turning inside-out that which is innate, so as to proffer a true relection of the Creative Self. Led by a sensory-cognitive idiosyncratic body-mind functional system, the autist intrinsically engages in artistic science and scientiic art when observing and analysing phenomenon and transformations as they occur in time and space. To the autist, engaging in transdisciplinary pursuit and process is not conined to collaboration with others, nor is it merely an extrinsic consequence of intellectual interest, but rather an intimate, persistent undertaking, juggling conlicting juxtapositions of intense agony and exultant joy, a dynamic coalescent confabulatory and systemic pursuit of fact, elucidation of realities, imaginative extrapolation and creative introspection. It is an inexorable modus vivendi, a way to be alive in a world full of juxtapositions.

“The autistic mind does not differentiate between heuristic and hermeneutic process, they are intertwined, inseparable components of ‘pneuma’, the sense of ‘being.’ The creative autistic is artist as much as scientist on an intense journey of discovery, rigorous investigation of fascinating phenomena, and innovative response.” – Dawn-joy Leong.7

My material practice draws energy from eclectic trajectories, critically observing and being inspired by innovative empirical discovery and responding with creative mind- body utterances emanating from multiple artistic disciplines, which merge into cohesive, immersive experiential spaces, dynamic concretisations of my autistic reality.

7 Dawn-joy Leong, “Thinking through the Body – a Multimodal Approach from Autism,” (paper presented at The International Conference for Research Creativity: Praxis, Baptist University of Hong Kong, Hong Kong, 21-23 November 2012). 7 Scheherazade’s Sea 2010: establishing a premise

Figure 1 Photographs from Scheherazade’s Sea 2010.

In 2010, I premiered “Scheherazade’s Sea – a mixed media, multisensory installation and performance,” at the University of Hong Kong. This foundational work emerged from a lifelong search for Self in the midst of Other, and an innate predilection for polymathic learning and expression, that is, the inexorable undertaking of process. Scheherazade’s Sea 2010 represented a summation of research into the relationship between creative articulation and autism-speciic sensory and cognitive

8 idiosyncrasies. At the same time, the opus offered an intimate and personal glimpse into the world of Autism Spectrum Condition through an amalgamation of multi- sensorial artistic mechanisms, including video, soundscape, composed music, musical instrumentation and vocalisation techniques, accessible sensory installations, story telling, poetry, degustation and theatre.

The title, “Scheherazade’s Sea,” was chosen as a symbolic intimation of progressive and continuous unfolding empathic and sympathetic investigation and performance. In the Persian epic, “A Thousand and One Nights,” Scheherazade preserved her life by captivating the Shahyar (Persian King) through an epic series of dramatic narratives that lowed seamlessly one into another. This is analogous to the autistic existence within the wider social milieu, where survival depends heavily upon how well the autist is able to ‘perform’ a continuous libretto in what is often a harsh, exacting and unsympathetic ‘operatic theatre of normality’ based on neurotypical social constructs alien to intrinsic autistic existence. The sea connotes a vast realm, physically tangible while maintaining a whimsical element, a domain that is foreign and contrary to the norm of human physicality, requiring careful study, regard, respect, as well as clever invention in order to access, and containing fascinating real and imagined mysteries yet to be revealed and explained.

The compositional structure of this current treatise is an interfacing hermeneutic- heuristic tapestry of analytical exposition, introspective extrapolation, and sensory- based creative expressions from the paradigm of autistic modality. The materials include critical examination of current scientiic evidence and interpretations, autobiographical perspectives from within autism – my own, as well as that of other autists across the spectrum – and supporting perspectives from the ields of disabilities studies and inter-artistic practice. While maintaining a global cohesion, the presentational approach for the written and practice components shall relect elements of a detail-focused cognitive style: beginning from the inside of neuro- speciic consciousness, working outwards in concentric progression towards a transcultural panorama.

9 Co-existence

Within. Living. Embedded. Entrenched. A private space, unsullied. Order amidst chaos. Oasis buried in desert sands. Unseen, but always known and felt. Sacred trench. Deep liquid sea. A slumbering Scheherazade, cognizant yet dormant. Until summoned for the next performance. (Scheherazade Awake – Dawn-joy Leong, 2014)

In the unfolding chapters, I will discuss and compare the traditional deicits- perspective of autism, with the rise of the collective autistic voice providing a distinct interpretation of autism from the vantage point of lived-experience, and the relatively new concept of “neurocosmopolitanism.”8 The subsequent discourse around my practice is positioned within the framework of a compelling transdisciplinary approach to creating ambient physical-mental social spaces, fomenting better understanding, acceptance and reciprocal communication across neurological predispositions.

Although much more is now known about Autism Spectrum Condition than was the case twenty years ago, the currently pervasive interpretation and assessment of autism remains grounded in a strongly pathologising approach, juxtaposing and measuring Autism Spectrum Condition with neurotypical social-focused paradigms and measurements. The medical/deicits model has the propensity to pronounce any deviation from the pre-set ‘norm’ as impairment, presenting autism in a largely negative and discriminatory light. Neurocosmopolitanism, however, suggests a more human-centric focus, calling for inclusive methods of scientiic investigation, taking into serious consideration autobiographical observations of autistic individuals across the autism spectrum, and encourages reciprocal understanding and assimilation.

8 Savarese, Ralph. “From Neurodiversity to Neurocosmopolitanism: beyond mere acceptance to inclusion.” Ethics and Neurodiversity. Eds.,C.D. Herrera and Alexander Perry. Cambridge Scholars Press 2013, 191-205. 10 Eclectic expressions

My artistic practice has evolved from eclectic inluences. Music offers the underpinning architectural structure and remains a substantial driving force of my oeuvre. Many aspects of musical thinking and execution are sympathetic to my autistic senses and cognition: apart from the highly organised constructions and dynamic rhythmic propulsion across time and space, my auditory senses are drawn to the sonic nuances of tonalities, atonalities, and melodic-harmonic juxtapositions. The use of visual art concepts and components – small, interconnected installations in particular – resonates with sensory-seeking aspects of visual attraction, tactile, olfactory and gustatory communication. Narrative – worded, symbolic or implied – is important to the explicit storytelling aspects of my expression.

Performance and theatre are implicit indications of lives within life, personiications within person, and gesticulating visceral hyper-realities within experiential reality. The element of theatrical performance is deeply embedded in my artistic practice, not necessarily as an art form in itself, but as a dynamic and cogent force within my lived- reality. Its presence is threaded through the fabric of my creative expression, whether or not the act of performance may be a visible aspect of the work at hand.

An overarching sense of perpetual performativity is shared by many autistic individuals despite wide variation in circumstances, the common application of which is the navigation through and survival of a social landscape that is confounding, frightening and harshly critical of unique autistic embodiment. The title of autistic author Liane Holliday Willey’s autobiography, “Pretending to be Normal,” succinctly captures the performative nature of autistic existence within a non-autistic paradigm.9 To such autists, myself included, the pressure is immense: our social survival in the wider world requires us to be ever consciously alert, observing and processing

9 Liane Holliday Willey, Pretending to be Normal, (Jessica Kingsley Publishers, 1999). 11 information, while at the same time mastering the appearance of normative behaviour: in other words, “performing the unnatural as naturally as possible.”10

In my crafting of experiential spaces, despite employing a range of artistic applications, there is nevertheless no conscious, deliberate intention to create or display ‘multi-media art.’ My intention is to present cohesive scholastic-creative work that contains concrete, innovative and empathic articulations of autistic perceptive- communicative modalities, exploring and explaining a dynamic conluence of juxtapositions and oxymoronic existences. Each creative offering is simply an intrinsic articulation of an autistic artist’s perceptive-communicative modalities, exploring and explaining a dynamic conluence of juxtapositions and oxymoronic existences. Manipulating sensory-tangible conigurations of fabric, paper, personal belongings, and commonly used items from daily life, the exhibition site is transformed into a symbolic and literal diegesis, every meticulous installation a miniature thespian with a ‘life’ and ‘script’ of its own. Combined, each component intertwines in a sensorial- elemental chorus, inviting visitors into the vibrant, intense musical-theatrical domain of autistic verisimilitude.

After the premiere of Scheherazade’s Sea 2010, a well-known Hong Kong artist, Jaffa Lam, remarked to me, “Where is your technical framework? There is no central focus, it’s too confusing and chaotic!” My reply to her was, “Welcome to my world!”

10 Dawn-joy Leong “Distance,” Bunnyhopscotch blog, May 30, 2015, accessed April 14, 2016, https:// bunnyhopscotch.wordpress.com/2015/05/30/distance/ 12 2. PARALLEL EMBODIMENT

‘Autism Awareness’ – what are we ‘aware’ of?

It is still widely thought, especially among those who cling to traditional etiological trajectories, that autists who are unable to master and operate within the dominant social vernacular are devoid of sentience and lack fundamental requirements for achieving full membership into the elite culture of humanity. This premise springs from rather sinister beginnings.

In his groundbreaking and multiple award-winning exposé, “Neurotribes,” author Steve Silberman revealed the chilling history behind the ield of autism research and praxis as we know it today. Silberman’s book provides a thorough examination and comparison of Leo Kanner’s and Hans Asperger’s research and approaches, and a rigorous historical background, situating the chronicle against the political, social and scientiic climate of the early twentieth century. The general attitude of practitioners towards persons with mental irregularities at the time was that the disabled were burdens who “consume precious resources without repaying their debt to society.”11 It was considered an act of ‘mercy,’ therefore, to rid the world of such encumbrances. According to Silberman, this prevailed in the hallowed hallways of academia and among clinical practitioners even before the Second World War. The viciousness of eugenics rose to feverish pitch under Hitler’s regime, where the theory was applied towards not only the mentally and physically disabled, but across racial and cultural boundaries, and anyone standing in the way of Hitler’s agenda. Today, this is of course widely condemned by the majority of people who pride themselves as educated, rational and sensible. Yet, the insidious threads of ableism and neuro-functional supremacy continue to survive and remain tightly woven into the thick tapestry of psychiatric approaches, applications and language to this day. Current attitudes are rooted in and low almost uninterrupted from early twentieth century ‘scientiic’

11 Steve Silberman, Neurotribes,(Australia & New Zealand: Allen & Unwin, 2015) Chapter 3. iBooks version. 13 practices geared towards destruction and abuse of the disabled. The deicits-based, medical model of autism dominating the ield today is a legacy handed down by Leo Kanner, who is largely hailed as the “father” of autism studies. Approached from the viewpoint of emerging neurodiversity ideology and progressively inclusive neurological indings, however, Kanner’s body of work now seems somewhat tainted by questionable claims and recommendations emerging from personal agenda. Among the most well known of dubious claims is the concept of the “refrigerator mother,” where autism was blamed on supposedly un-loving mothers.12 This particular notion proved tragically destructive towards countless affected families, and was roundly denounced by prominent psychiatrist and physician, Lorna Wing. Herself a mother of an autistic child, Wing was responsible for bringing the work of Hans Asperger to light in the early 1980s. In a conversation with author Steve Silberman, Wing was quoted as saying:

“When I read Kanner’s later papers,” … “I thought they were bloody stupid. I knew I wasn’t a refrigerator mother.” – Lorna Wing13

Silberman’s book shines a penetrating light into the history of autism, unearthing essential information that lay undiscovered and perhaps even deliberately muted by professional jealousy and competition. Unfortunately, the more comprehensive work of Hans Asperger, who (as revealed in Neurotribes) viewed autism with a holistic and inclusively empathic approach, is still largely unknown and undocumented apart from Siblerman’s publication, and the concepts expounded by Kanner and his colleagues of similar mindsets hold sway in current perception and practice.14

12 Leo Kanner, "Problems of Nosology and Psychodynamics in Early Childhood Autism,"American Journal of Orthopsychiatry, 19, no.3(1949): 416-426.

13 Silberman, Neurotribes, Chapter. 8.

14 Ibid., Chapter 3. 14 In the last three decades, there has been a surge of interest in neurodiversity, with particular focus on Autism Spectrum Condition. What was once a virtually unknown phenomenon has now become a fashionable topic of conversation in some of the most commonplace social gatherings, wherein it is not uncommon to ind participants presenting themselves as self-styled experts on the topic. The increase in ‘autism awareness’ in recent years is fast achieving fevered pitch, gathering momentum in a tension-illed orchestral stretto. On one side of the unfolding dissonance, popular and social media promulgate sensationalised characterisation and commentary, and well- inanced worldwide campaigns run by large organisations declare themselves as representatives and welfare providers of autism, while disseminating so-called ‘educational’ videos portraying autism as a soul-snatching demonic entity that ruins the lives of ordinary, unsuspecting good citizens;15 while on the other hand, autism self-advocates and supporters are populating blogospheres and vying for airtime in mainstream media, struggling to be heard above the increasingly deafening roar.16.

The medical pathological model of autism

The current authoritative systems for autism diagnosis are designed along conventional clinical pathology frameworks. There exist two main diagnostic systems: the Diagnostic and Statistical Manual (henceforth referred to as DSM) published by the American Psychiatric Association, and the International Classiication of Diseases (henceforth referred to as ICD) published by the World Health Organisation. A great deal of argument has been generated around speciic details within the structure and emphases of diagnostic criteria, however, the main contention emerging from a large

15 Autism Speaks, “I am Autism,” Vimeo, accessed April 15, 2016, https://vimeo.com/112235562. This is a chilling example of the devastating portrayal of autism disseminated and encouraged by large organisations and popular media.

16 The internet has become a cogent platform for autistic self-advocates, many of whom maintain websites, blogs and Facebook pages with growing readership and followers. One major autism advocacy organisation speaking from the autistic standpoint is the Autism Self Advocacy Network, or ASAN, headed by autistic advocate Ari Ne’eman in the USA. ASAN has grown since its inception, and now boasts of chapters around the world, including Australia and New Zealand; ASAN, website, accessed April 15, 2016, http:// autisticadvocacy.org/ 15 and growing body of autistic self-advocates centre around the pathological approach and language used to deine autism. According to the DSM 5 diagnostic criteria for “Autism Spectrum Disorder,” key impairments include “persistent deicits in social communication and social interaction across multiple contexts” and “restricted, repetitive patterns of behaviour, interests, or activities”. Included in the subcategories are “deicits in social-emotional reciprocity” and “deicits in nonverbal communicative behaviours”, including eye contact, body language, and use and interpretation of gestures, as well as the inability to form, comprehend and nurture relationships. Stereotypical, repeated motor movements and manipulation of objects, strict adherence to routine, “highly restricted, ixated interests that are abnormal in intensity or focus” and sensory idiosyncrasy are also listed as behavioural anomalies.17 The ICD criteria are similarly worded, and the various forms of autism are classiied under the term, “Pervasive Developmental Disorders.”18

While the majority of autistic individuals do not deny the tangible challenges presented by autism itself, and most agree that disabling aspects of the condition should not be swept aside in favour of the recently trendy and too liberally applied catch phrase “differently abled,” nevertheless the perspectival repercussions arising from adopting a solely pathological, deicits-based approach is for the most part detrimental to forging a more accurate perception of the neurological condition along with inclusive social afirmation. From the viewpoint of the autistic individual, current frames of reference, which assess autism with the same methodologies used for disease and sickness, address traits that are functionally innate to the autistic person as undesirable abnormalities, indicating a need for ‘correction’ or ‘redirection’ at best, or a ‘cure’ at worst. Some examples of characteristics deemed unacceptable, which well established and widely sanctioned programmes set out to ‘rectify,’ include not wanting to engage in eye contact during social interaction; not desiring to

17 DSM5 299.00 Autism Spectrum Disorder, American Psychiatric Association

18 World Health Organization. "International Classification of Diseases (2010)," retrieved from WHO Programs and Projects, accessed April, 18, 2016, http://apps.who.int/classifications/icd10/browse/2016/en: ICD-10-CM F84.0. 16 spontaneously share discoveries, thoughts or feelings; delighting in observing inconspicuous details in patterns, repetitions and transformations, and preferring minutiae over global meaning; being intensely focused on certain subjects of interests; acute sensory abilities and response to external stimuli; literal interpretation of semantic denotation; self calming repetitive movements (commonly referred to as “stimming”) etc. In other words, according to the language used to described autism, that which is natural and even comforting to the autistic person are deemed defects or aberrations in the eyes of the prevailing majority.

With greater awareness comes a heavier responsibility for affected individuals and society at large to address the ways in which autism is popularly perceived, talked about, and ultimately how, as a collective, autistic people are treated. For positive change to happen – that is, change that eventually draws diverse peoples together in a gentler social-cultural-mental space – a deeper and increasingly empathic understanding of autism is necessary. A possible catalyst for this permutation might lie in developing a more suitable vocabulary: a consciously embracing and humanising system of terminology, neither compromising on scientiic evidence nor artistic insight into humanity.

Sally, Anne and the Theory of Mind hypothesis

In 1985, a team of neuroscientists, Simon Baron-Cohen, Alan Leslie and Uta Frith, attempted to measure the ability to accurately predict deception, or “false-belief,” among groups of autistic children, children with Down Syndrome, and typically developing children. In this test, coined the “false belief task” or the “Sally Anne task,” there are two characters, Sally and Anne. A group of preschool children are shown visual images and a verbal description of an unfolding story. Sally has a ball. Sally places the ball inside a brown basket, and then exits the room. Anne comes along, helps herself to the ball, and, after playing with it, puts the ball into a green box. Sally returns into the room, and looks for her ball. At this point, the test subjects are asked

17 to anticipate where Sally will look for her ball. Would it be the brown basket or the green box? In this experiment, the autistic children repeatedly fared more poorly compared to those with Down Syndrome, and the typically developing control group. According to the scientists, the failure of the autistic group, who possessed higher Intelligence Quotients than the Down Syndrome group, indicated a social impairment rather than intellectual.

It is my own observation, as an autistic individual, that the autistic mentality is indeed predisposed towards maladaptation to certain aspects of prevalent social constructs, rendering the autist generally less adept at functioning within and performing the nuances of neurotypical social culture. However, whether or not this ought to be labelled an impediment in social empathy is a highly contentious issue. The Sally-Anne task is essentially a test for understanding deception, or ‘false belief.’ This method has since been questioned by other researchers as unreliable, as it basically demands the autistic child to possess a metarepresentational capacity for a system of thinking extrinsic to autism.19 The tests also do not take into account other autistic features, such as executive functioning differences, language perception, sensory distraction etc. In addition, the autistic mind, especially at an early age, may be less neurologically ‘wired’ towards tackling subtler nuances of non-autistic social interactions, like deception and subterfuge.20 As a result of this purported impaired Theory of Mind, the autist is pronounced ‘mind-blind,’ and a lack of empathy for non-autistic Other is inferred.

The topic of ‘Theory of Mind and empathy impairment’ is an on-going argument almost magniloquent in its symphonic reverberations, in some instances going back

19 David Smukler, “Unauthorized Minds: How “Theory of Mind” Theory Misrepresents Autism,” Mental Retardation 43, no.1(2005), accessed 10 January 2016, http://dx.doi.org/ 10.1352/0047-6765(2005)43<11:UMHTOM>2.0.CO;2 ; Shaun Gallagher, “Understanding Interpersonal Problems in Autism: Interaction Theory as an Alternative to Theory of Mind,” Philosophy, Psychiatry, & Psychology 11, no. 3 (2004): 199-217, accessed January10, 2016, https://muse.jhu.edu/.

20 Li, Annie S., et al., “Exploring the Ability to Deceive in Children with Autism Spectrum Disorders.” Journal of Autism and Developmental Disorders 41, no.2(2011):185–195, accessed, April 15, 2016, http:// doi.org/10.1007/s10803-010-1045-4. 18 and forth directly between autism advocates and Baron-Cohen himself.21 My own contribution to the wider conversation was a brief contemplative blog post in my now inactive blog, “SpunkyKitty – my wonderful world.” The post, entitled “Theory of Mind – whose?” was republished in Rachel Cohen-Rottenburg’s “Autism and Empathy” blog.22 Re-examining the thoughts therein, ive years on, I realise that this marked a milestone in the evolution of my contemplation and research into the Self-Other experiential-existential dilemma of autism.

Autists have variously described themselves as ‘standing apart’ from social situations, actively engaging in ‘studying’ interactions from an outsider’s, almost anthropological, standpoint. Others report a feeling of helpless isolation, longing for social connection but being unable to ind the ‘key’ to enter into the camaraderie that socially adept non-autistics seem to share. Traditional assertions maintain that this ‘aloofness’ is due to Theory of Mind impairment, mindblindness and lack of empathic response on the part of the autist. My own experience is a combination of both. During my late teens into early adulthood, I recall vividly my forays into neurotypical social activities. There were parties, too many people, too much alcohol, the music was too loud, and there was no quietude. My mind meandered back and forth between anthropological scrutiny of normative social interactions, head-tingling fear, and exasperated discombobulation. I remember also feeling a sense of desolate boredom and despair at the ironic juxtaposition of Self and Other: struggling to brush away the feeling of disinterest in what seemed to me the mental and physical dancing in concentric circles around meaningless chatter about nothing much at all. Ironically, the loud music created a small ‘shield’ around me, such that I would not feel as obliged to make

21 Rachel Cohen-Rottenburg, “A Critique of the Empathizing System (ES) Theory of Autism,” Autism and Empathy Blog, accessed April 15, 2016, https://autismandempathyblog.wordpress.com/a-critique-of-the- empathizing-systemizing-e-s-theory-of-autism/ ; Simon Baron-Cohen, “Simon Baron-Cohen Replies to Rachel Cohen-Rottenberg” Autism Blogs Directory, September 10, 2011, accessed April 15, 2016, http:// autismblogsdirectory.blogspot.sg/2011/09/simon-baron-cohen-replies-to-rachel.html ; Rachel Cohen- Rottenburg, “Unwarranted Conclusions and Potential for Harm,” Autism Blogs Directory, September 19, 2011, accessed April 15, 2016, http://autismblogsdirectory.blogspot.sg/2011/09/unwarranted-conclusions-and- potential.html .

22 Spunky Kitty, “Theory of Mind – Whose?” Reposted in Autism and Empathy Blog, September 9, 2011, accessed April 12, 2016, https://autismandempathyblog.wordpress.com/2011/09/09/theory-of-mind-whose/ 19 polite conversation if I did not wish to, giving the excuse that the music was too loud and I couldn’t hear properly, or merely performing the role of one completely consumed inside the music to the exclusion of all other attention. A friend of mine recently described his memory of me from those late teenage and young adult days as “…aloof, elegant and poised, like an ‘Ice Princess,’ but so brilliantly witty and dramatic when you deigned to speak.” In truth, I was terriied and confused, my senses were being assaulted in the most ‘barbaric’ way, and it required all my physical and mental strength not to run screaming out of the room.

Who is lacking in empathy?

The acknowledgment of the existence of empathy, according to the normative system, is based on the ability to verbalise empathic response in a socially acceptable parlance, as well as accurately position this reaction within the dominant social- cultural framework. Apart from the dysfunctions mentioned above, there may be another dynamic force responsible for this phenomenon of the autist as a ‘social outsider,’ and that is the straightforward incapacity on the part of the neurotypical mind to grasp the autistic mentality, neurotypical mindblindness for the autistic mind. What if the tables were turned? What if a similar test for recognising mental states is applied to the neurotypical’s understanding of the autistic paradigm? Would the results relect that neuro-majority minds are more capable of understanding autistic thinking than the autistic of the neuro-majority?

Below is a humorous parody of the impairment-conundrum, turning the tables on the neurotypical world, using similar deicits-focused language.23 (Content removed for copyright reasons. Please access given link for original post.)

23 “Tone It Down Taupe” is a Facebook page created by autistic advocates in reaction to the Autism Awareness Month campaign initiated by Autism Speaks. The colour taupe was chosen in opposition to the “Light it up Blue” slogan that uses a blue puzzle piece to signify autism in mainstream media; Tone it Down Taupe, Facebook, accessed April 15, 2016, https://www.facebook.com/446945788708219/ photos/pb.446945788708219.-2207520000.1461554229./983052688430857/?type=3&theater 20 When I irst began researching autism, I accepted without question the opinions and indings of experts in the ield. I employed the same language and paradigms of the traditional deicits-model and the emphasis on adherence to normative social structures. My social confusion and the agony of what I was told was a result of ‘mindblindness’ and impaired Theory of Mind – a deicit on my part and not the other parties – was translated into a naïve story which formed a segment of my performance work, Scheherazade’s Sea: a mixed media, multisensory installation and performance (henceforth referred to as Scheherazade’s Sea 2010). “The Little Mindblind Duckling” was a non-native interpretation of my own confusion, where I took on the labels and language of alien normative tradition to describe my lived- experience. This mantle of impairment and insuficiency is still worn by many autists today, a forceful legacy which autistic self-advocates are ighting to dismantle and disarm, both internally and externally.

“Little Duckling was very, very sad. Was it her own fault that she believed in what others say? Her eyes could see the colours of the rainbows, inside the deep oceans, the changing hues of the sky. She so longed to share all she had with anyone who would be her friend, but she had a mysterious disease, called “Mindblindness”. And she just could not ‘see’ the colours and different hues of careless lies and the shifting dark shadows in the other kids’ eyes, nor understand the language of the confusing cruel games they played.

You see, she was an autistic Little Duckling.” – Dawn-joy Leong.24

24 Dawn-joy Leong, “The Little Mindblind Duckling,” Scheherazade’s Sea – a mixed media, multi-sensory installation and performance, (M.Phil thesis, University of Hong Kong, 2010). 21 Autism and the Self-Other conundrum

It was not until I began to ‘own’ and embrace autism as part of a multifaceted identity that I was able to perceive the subtle laws in prevailing theories and practices surrounding autism. In September 2013, I presented a paper at a conference in Mansield College, Oxford University. In this paper, entitled “Reciprocating Self and Other – lessons from autism,”25 I articulated my conceptual approach to autism as a neurological culture, and discussed the existential conundrum from the vantage point of an alien cultural minority, with speciic and tangible intrinsic challenges.

…“coming face to face with autism is about confronting Difference: autism is an invisible micro-culture, a culture within cultures, that cuts across geographical, racial and religious cultures, and all dimensions of human life.” – Dawn-joy Leong26

This paper presents autism as a distinct neurological culture, and explores the tangible struggle between autistic Self and non-autistic Other from the vantage point of autistic parallel embodiment. For many autistic individuals, life is an effortful journey of searching and analysing, practising and enacting the concepts and realities

25 Dawn-joy Leong, “Reciprocating Self and Other – lessons from autism,” (paper presented at the Interdisciplinary.Net conference, Strangers, Aliens and Foreigners, Mansfield College, Oxford University, Oxford, U.K. 5-7 September 2013).

26 Ibid. 22 of Self and Other, persistently and consciously grasping for juxtapositional comfort within the conines of an alien social landscape. Relational habitation in the social world at large demands a resolute enterprise of mind and body: the autistic mind must grapple with the systemic functions of a social world dominated by a neurotypical socially-focused institution. There is constant endeavour to acquire information, knowledge, and powers of expression within an alien functional milieu, while the physical body faces sensory and proprioceptive operational challenges in complex exertions of adjusting, positioning, aligning, learning, un-learning and executing or refraining. A heightened awareness of Self and Other is therefore imperative. However, on the other hand, an overly-sharpened contextual consciousness inevitably leads to inner tension, at times excruciating, and often without satisfactory cadential resolution. In other words, the autistic existence within the framework of the neurotypical construct is a practice of dichotomous Self-Other conlict, antithetical existential and experiential states.

Social empathies

In the DSM 5, a main diagnostic criteria for autism is “persistent deicits in social communication and social interaction across multiple contexts,” in particular, “deicits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation.”27 Social ‘chitchat,’ the ability to engage in “normal back-and-forth conversation,” is extremely important to the normative world, but it is a phenomena that confounds the autist, while at the same time a mandatory skill to acquire, at least on the surface, for the sole purpose of social survival. The detail-focused mind of the autist predisposes towards intense spheres of interest, and conversations surrounding subjects that capture the autist’s imagination. On the other hand, ‘chitchat’ tends to hover around topics with broader social-focus, and often without a concrete ‘end purpose’ in itself. To many autists, such casual social

27 DSM 5, Autism Spectrum Disorder, 299.00 (F84.0) 23 communication is not merely uninteresting but requires effortful mental calisthenics, to lit from one topic to another, skimming the surface without purposeful direction and never really delving into any signiicant detail. The acuity of the senses also means that the mind-body existence is literally assaulted by invading ambient stimuli and from the physical bodies occupying the same environment. However, if the social repartee centres around topics of interest for the autist, there is a tendency for the autist to engage too enthusiastically, and thus committing the social faux pas of commandeering the conversation and delving too deeply into the topic, to the discomfort of the non-autistic gathering.

My own seemingly luent ability in the art of ‘chitchat’ is deeply rooted in a childhood steeped in musical theatre, as a connoisseur and a performer. My late father, also an autist, was a polymath with a wide range of very intense interests and skills to match. Among his many detailed collections of paraphernalia related to passionately focused interests was a vast library of MGM musicals. From a very young age, I was fascinated by ‘characterisation,’ creating and revealing persona, and ‘personiication,’ becoming and performing ‘The Being.’ I wrote, acted in, directed and produced my irst musical theatre at the age of nine, in primary school. It was a dramatisation with song and dance about the biblical story of the prodigal son. I also designed and made the costumes and props. As a teenager, the only thing I looked forward to in mainstream education was the yearly drama festivals, where I would act in, direct and produce award-winning musical plays. I composed my irst publicly performed operetta for children, “The Glow Worm,” in 1985, at the age of 19.

When I was at preschool age, there was a peculiar game I used to play every morning upon waking up: I would contemplate a character that I knew from television, and mentally ‘put on’ the role. Sometimes, I would also dress up to mimic the character. I then rushed downstairs and accosted anyone unlucky enough to be in my path with the question, “Guess who I am today?” I would not stop quizzing them until they produced the correct answer. I was told this little intense interest of mine drove my non-autistic family members to distraction on more than one occasion. I am unable to

24 recall when my interest for this deliberate exercise waned, but I remember vividly that it emerged from a fascination for ‘states of being’ and an awareness that I was somehow hovering around on the outskirts of mainstream existence. Social ‘chitchat,’ to me, is thus yet another performance in the vast array of miniature librettos that I have sought to master, even though it may not be a role that I particularly enjoy. Multisensory performance and performativity is not merely a crucial survival skill for autistic individuals, but the endeavour-of-performance has also opened up avenues for me to study social behaviour, gain insights into functionality and exercise empathy towards the neuro-majority. In addition, the preoccupation with dramatic expressivity has instigated greater ability to situate Self within Self, while juxtaposing Self with Other. It is this foundation in the performing arts, established via unconventional means, that has propelled my material practice into the domain of the visual arts, and inspired the conviction that artistic practice holds the key as agency for the engendering of reciprocal empathy across neurological states.

25 In the realm of the senses inhaling exhaling your aura is ringing in my ear soft rotting vegetables painting nausea in the corner a room full of sweat beads dancing merrily bouncing on ine tentacles hairs embedded crackly long nails scratching screeching ouch! it is painful! though it’s your skin not mine yet my ear hurts in enforced trespassing (“ear” – Dawn-joy Leong 2016)

Sensory idiosyncrasy is a hallmark feature of Autism Spectrum Condition. Scientists have identiied what they call three basic subcategories of sensory atypicality as over- responsivity, otherwise known as hypersensitivity; under-responsivity, or hyposensitivity; and seeking, or more commonly known as sensation seeking.28 Other aspects include dificulties with balance, and unique patterns of proprioception, interoception, and exteroception. Hypersensitivity may be described as uniltered, ampliied reception of sensory stimuli such as light, sound, texture, taste, smell, touch,

28 Ayelet Ben-Sasson, et al., “A Meta-analysis of Sensory Modulation Symptoms in Individuals with Autism Spectrum Disorders.” Journal of Autism and Developmental Disorders, 39(2009): 1-11, accessed March 21, 2016, doi: 10.1007/s10803-008-0593-3. 26 movement, in isolation or combination. Persons with hypersensitivity experience sustained stimulatory intensities, usually inducing considerable to extreme pain and heightened sensations of fear on one hand, but also sensations of augmented pleasure and enjoyment on the other hand, with the actual details and speciics depending on the individual’s sensory proile. In hyposensitivity, there is reduced or no evident reaction to stimuli, for example, not responding to loud sounds, touch, or being spoken to. ‘Seeking’ refers to avid solicitation of sensation, often speciic and repetitive, like showing a marked preference for, or insistence on, certain kinds of tastes, smells, textures, colours, or stimulating activities. Sensorial anomaly also extends to movement and coordination (proprioception), relating external stimuli to one’s body (exteroception) and inner awareness of the body (interoception).

In a large percentage of autistic individuals, sensory challenges encompass multiple channels, spheres and modalities, often in eclectic combinations.29 For example, a person who is hypersensitive to some stimuli may be unusually unresponsive to other kinds of input, and at the same time struggle with gross or ine motor skills and/or general body consciousness in relation to Self, Other and physical spaces. Intensities also vary according to speciic circumstances, and from person to person. One commonality is that sensory atypicality has profound inluence on every aspect of life for the autist – internally coping with being ‘in the body’ such as tolerating or managing the immediate sensations or lack of, and externally struggling with aspects of behaviour, socialising and communicating.30 Some common examples include not being able to tolerate the sensation of fabric on the skin, which may cause autistic children to refuse to wear clothing or to insist on only certain kinds of materials; extreme reaction to particular types of artiicial lighting or bright colours, especially if synaesthesia accompanies hypersensation; acute responses to smells, even those

29 Susan R. Leekam, et al., "Describing the Sensory Abnormalities of Children and Adults with Autism," Journal of Autism and Developmental Disorders, 37, no. 5 (2007): 894-910, accessed March 21, 2016, doi: 0.1007/s10803-006-0218-7.

30 Jane Case-Smith, and Lindy L. Weaver, and Mary A. Fristad, “A Systematic Review of Sensory Processing Interventions for Children with Autism Spectrum Disorders,” Autism, 19, no. 2(2014): 133-148, accessed March 21, 2016, doi:10.1177/1362361313517762. 27 considered quite innocuous by the general populace, sometimes inducing strong feelings of nausea and vomiting, or persistent attraction.31 Many autistic persons also appear to be ‘clumsy,’ are unable to take part in games requiring sophisticated levels of hand-eye coordination, and move around with uncommon comportment or gait.

On the other hand, extraordinary abilities have been ascribed to sensory peculiarities inherent in autism. Auditory alertness is a prominent feature of autistic hypersensitivity, for example, the ability to discern speciic single musical pitches as well as remember melodic lines.32 A large number of autists also posses what musicians call “absolute pitch” (myself included), which is the ability to identify or reproduce speciic musical pitches without the aid of a reference.33 Other reports focus on visual pattern recognition34 and a recent controversial study has claimed that autistic subjects displayed acute visual detection ability comparable to that of eagles.35

31 Chris Ashwin, et al. "Enhanced olfactory sensitivity in autism spectrum conditions," Molecular Autism, 5, no. 1(2014): 31-50, accessed March 22, 2016, doi: 10.1186/2040-2392-5-53.

32 Sandy Stanutz, et al., "Pitch Discrimination and Melodic Memory in Children with Autism Spectrum Disorders," Autism, 18, no. 2, (2014):137-47.

33 Anna Bonnel, et al., "Enhanced Pitch Sensitivity in Individuals with Autism: A Signal Detection Analysis," Journal of Cognitive Neuroscience, 15, no. 2(2003): 226-235.

34 Amitta Shah, and Uta Frith, "Why Do Autistic Individuals Show Superior Performance on the Block Design Task?" Journal of Child Psychology and Psychiatry, 34, no. 8 (1993): 1351-364.

35 Emma Ashwin, et al., "Eagle-Eyed Visual Acuity: An Experimental Investigation of Enhanced Perception in Autism," Biological Psychiatry, 65, no. 1 (2009): 17-21. 28 The Intense World Theory and Enhanced Perception Model

The “Intense World Theory” has proposed that sensory anomaly in autism is due to augmented brain function, where perception is so acutely intense that the autistic person suffers from social withdrawal and avoidance.36 Critics of the theory have pointed out that it is not a properly unifying one, since it does not address the hypo- sensory aspect. There are also fears that withdrawing stimulation and creating a highly iltered environment from a very young age, if taken to the extreme, may be detrimental to ‘normal’ development. Another criticism is that the focus of the Intense World Theory leans too heavily towards developing unusual talents, and it is therefore misleading to expect that every single autistic individual, when ‘unlocked’ by its prescribed methods, will develop savant-like abilities.37 On the other hand, researchers have yet to put forth any unifying theory able to address autism from all dimensions. While it is important to be cautious about novel claims, especially those pronouncing possible sweeping solutions, some basic tenets of the Intense World Theory have resonated well with those autists who are struggling with the very intensities that the theory brings to light. The lack of address where hyposensitivity is concerned may be due to the dificulty in studying the phenomenon. In fact, there are comparatively fewer studies speciically looking at hyposensitivity, and it is my suspicion that perhaps the seeming unresponsiveness in autistic individuals may have more to do with a state of sensory shutdown, ironically due to hyperarousal, rather than the inability to receive stimuli, at least in the cases where there are no known diagnoses of other disability in one or more of the senses, for example, deafness. As an autistic person with hypersensory and processing dificulties, I especially welcome the basic concept of creating conducive environments that attempt to lower negative triggers and reduce the impact of unnecessary stress on the sensory system. This is

36 Kamila Markram, and Henry Markram, "The Intense World Theory – A Unifying Theory of the Neurobiology of Autism," Frontiers in Human Neuroscience, 4 (2010): 224, accessed March 22, 2016, doi: 10.3389/fnhum.2010.00224.

37 Anna Remington and Uta Frith, “Intense world theory raises intense worries,” Spectrum, January 21, 2014, accessed March 22, 2016, https://spectrumnews.org/opinion/viewpoint/intense-world-theory-raises-intense- worries/. 29 very much in line with my own research and practice. Nevertheless, the theory, which was based on biological experiments on rats, remains as yet largely untested, and needs to be further scrutinised with greater rigour.

A more robustly investigated proposal is the Enhanced Perception Model, with the idea that a unique intensiied cognisance is partially responsible for the positive aspects of autism,38 but does not suggest that all autistics have the potential to be savants. The proponents of this model also agree that a social-irst focus may not be the best way to address autistic sensory function. It is of interest to note that a prominent member of the team of neuroscientists behind the Enhanced Perception Model, Michelle Dawson, is autistic, and insights from other autistic persons were sought during a ive-year period of study.

At the moment, although empathic scientiic study on the senses are gaining in momentum with the inclusion of more autistic voices as active participants in research, the level of focus and recognition has not yet caught up with the stretto- crescendo of autistic voices reiterating what is in the autistic reality a fundamentally crucial existential need for cohesive and directed address. In the latest DSM V diagnostic criteria for autism, sensory variance is mentioned as a sub-class under “Restricted, repetitive patterns of behaviour.”39 This long-overdue inclusion, however, seems somewhat like an afterthought, a kind of condescending nod from the self- proclaimed authoritative observer to the dimension of lived-experience, especially since its measurements are heavily biased towards the normative social-irst paradigm.

38 Laurent Mottron, Michelle Dawson, Isabelle Soulières, Benedicte Hubert, and Jake Burack, “Enhanced Perceptual Functioning in Autism: An Update, and Eight Principles of Autistic Perception,” Journal of Autism and Developmental Disorders, 36, no.1 (2006): 27-43, accessed March 21, 2016, doi:10.1007/ s10803-005-0040-7.

39 DSM 5, Autism Spectrum Disorder, 299.00 (F84.0). 30 Inhaling and exhaling – personal narratives

In a milieu where social focus is paramount, and conspicuous mannerisms and spoken words frame and dictate communication and expression, the subliminal cogency of the senses is too easily overshadowed and its import trivialised in favour of the more overt interactional rules laid down by the Collective. Nevertheless, how an individual perceives, receives and responds to the world within and without is of paramount importance to encompassing aspects of life, regardless of neurological predilection. The proliferation of ‘mindfulness’ exercises and other meditative programmes designed to help the general public regain mental equilibrium and physical wellbeing points towards a growing recognition of the need to develop deeper sensorial awareness. For the autist with hypersenses and detail-focused cognition, every connection and interaction between Self and Other, whether human or non-human, between sense, sensibility and the elemental material dimension, is akin to the inevitable act of inhaling and exhaling.

“We sense, and therefore we exist. We exist in conscious relation to matter. We communicate with and through the elements that constantly impact our senses. We seek sensation, at the same time as we recoil from it. To the outside world, we may seem to live in a vacuum, but it is actually a busy vortex of intimate corporeal-cerebral conversation with the material universe.” – Dawn-joy Leong.40

The sensorial rhythmic low of autistic consciousness, its tempo and dynamics; the stark alertness to relentless minutiae, its conscious and subconscious effects; rippling social-cultural resonances; and the sum total of circumstances surrounding processes

40 Dawn-joy Leong, “Thinking through the Body – a Multimodal Approach from Autism,” (paper presented at The International Conference for Research Creativity: Praxis, Baptist University of Hong Kong, Hong Kong, 21-23 November 2012). 31 in site, space and situation, all carry far-reaching ramiications that are too often overlooked or disregarded.

From the outside looking in, pathologising lenses have deined autism as a set of behavioural impairments, because that is indeed what it looks like when awkwardly juxtaposed against the presiding social mise en scène. When reading from that particular libretto, the language is steeped in antipathetic overtones, and the unique sensory and cognitive expressivity of autistic individuals thus play out as assorted abnormalities of deportment, measured along a continuum of multidimensional aflictions. The latter are akin to ‘dramatic projections,’ which potency of ostensible impact depends on situational juxtapositions against the Establishment’s ixed theatrical tableau of Disorders and Disorderliness. Experiencing the interactional world differently is labelled as impairment in Theory of Mind or living in desolate disconnected isolation, and/or intellectual inferiority. Native autistic predilections, some of these exceptional, are deined as abnormalities. For example, in a report about researchers investigating unique brain connections, the special ability of autistic subjects to perceive objects rotating in space was described as “structural and functional abnormalities,”41 rather than unusual abilities. The authoritive DSM 5 presents autism – “Autism Spectrum Disorder” – as a collection of dysfunctions containing a set of evaluations that indicate the levels of severity of each, which hinge on ability to achieve or impact upon normative social standards for behaviour.42

However, when expressing autism from the vantage point of innate lived-experience, the language employed by the autistic dramaturge is different. Varied as their personal anecdotal perspectives may be, autists tend to present their inner worlds not as an anthology of behavioural or functional deformities, but rather as a compositional

41 Deborah Rudacille, “Space Cadets,” Spectrum, April 18, 2011, accessed February 25, 2016, https:// spectrumnews.org/news/space-cadets/.

42 DSM 5, Autism Spectrum Disorder, 299.00 (F84.0). 32 interplay of challenges and wonderment in which atypical senses play a major role, with accompanying coping strategies.

Stimming – the speaking body

Stimming is a self-stimulatory repetitive activity common to autistic people, such as lapping of hands, rocking back and forth, rubbing certain textures etc. Autistics describe this behaviour as self-calming, while normative society frowns upon it.

“I’ve been told I have a manual ixation. My hands are one of the few places on my body that I usually recognise as my own, can feel, and can occasionally control. I am fascinated by them. I could study them for hours. They’re beautiful in a way that makes me understand what beautiful means.

My hands know things the rest of me doesn’t. They type words, sentences, stories, worlds that I didn’t know I thought. They remember passwords and sequences I don’t even remember needing. They tell me what I think, what I know, what I remember. They don’t even always need a keyboard for that.

... My hands are more me than I am.” – Julia.43

Autism and disabilities advocate, Kateryna Fury, responded to the above post, “Quiet Hands,” with her own description, “Secret Stims,” which describes the ways in which the author tries to hide her stimming from the eyes of the neuro-majority, so as to avoid censure or ridicule.

“I think of all the ways I learned to stim in secret. There it is in the fabrics I clothe myself in, the softness of my cat, the texture

43 Julia Bascom, “Quiet Hands,” Just Stimming, blog post, October 5, 2011, accessed 10 March 2016, https:// juststimming.wordpress.com/2011/10/05/quiet-hands/ . 33 of my keyboard. I paid ten dollars more for the right texture on the keys I type on. My hairbrush has to be a speciic style so I can brush my hair without insanity creeping up my arm from the pain. The sights and sounds, all ways I stim. No one notices a woman smoothing her pants leg, or adjusting the way her blouse its. So it is safe.”

“The texture of my food. This has become more important as I age. I like creamy things. Soft things. Crunchy is nice too but my skin tears too easily so the rough texture after is a problem. It’s all around me. My hair is too long so I keep having to pull it away because it sends the wrong brain signals and is too heavy for my head. I must pet the cats around me, to feel their texture and softness. In the dark without opening my eyes, the slight brush of fur tells me which cat is which. The weight tells me where. I pet them until I dream or until my wrists ache and I want to beg the world to stop so that I can endure a bit longer.” – Kateryna Fury.44

44 Katryna Fury, “Secret Stims,” Textual Fury, blog post, November 29, 2011, accessed 10 March 2016, https://textualfury.wordpress.com/2011/11/29/secret-stims/ . 34 Fact and humour

Many autistic persons chronicle their embodiments in a matter-of-fact manner, and often with wry or self-effacing humour. In these narratives, there is no attempt to downplay the challenges and even the pain suffered, yet, the language is not about impediment or deicits, but a holistic ‘expedition’ teeming with generous sensory- emotional hues and textures. “Ido in Autism Land” is one of the many blogs that I read regularly. In this post, autistic blogger Ido Kedar wittily describes his experiential realm, the challenges he faces, his achievements, and in so doing, candidly invalidates the claims of Ole Ivar Lovaas, the founder of Applied Behaviour Analysis (ABA) therapy, that autistic persons are sub-human and in need of irm, sometimes even violent, correction.45

“The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis.

... but I function adequately in this world. I am now 17 and I am a full time high school student in a general education program. I am in Honors Chemistry, Honors US History and Honors English. I am in Algebra 2, Spanish and Animal Sciences. I get straight As. I work out with a trainer 2 or 3 times a week to get it. I study piano. I hike, cook, and help take care of a horse. I am invited to speak at universities and autism agencies. I am the author of Ido in Autismland, and a blogger as well. I have friends.

I say this, not to brag, but to let you know that people like me, with severe autism, who act weirdly and who can’t speak, are

45 Paul Chance interview with Ivar Lovaas, "After you hit a child, you can't just get up and leave him; you are hooked to that kid," Psychology Today, 1974, Library of the History of Autism Research, Behaviorism and Psychiatry, accessed 29 February 2016, http://neurodiversity.com/ library_chance_1974.html In this interview, Lovaas was quoted as saying, “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense — they have hair, a nose and a mouth — but they are not people in the psychological sense.” 35 not less human, and are not doomed to live lives of rudimentary information and bored isolation.” – Ido Kedar.46

Worded Fragments – painting the senses

My own expressions make use of symbols and what I perceive as ‘thought fragments,’ occupying a space between conventional poetry and prose. The following excerpt is from a blog post about traveling on public transport, describing the agony of a bus ride from the viewpoint of my hypersenses. “bunnyhopscotch” is my ‘sensory blog’ in which I discuss autistic sensory issues and relate little stories and snippets from my personal autistic domain.

“Entering that space. The noise, vibrations, smells, and visual assaults confront at the very start. The physical cavern in its entirety hurtles through time and space shaking, rattling, vibrating. My being is a marshmallow inside a churning goopy mass, I am trapped within a food processor.

Human voices, vehicle motors, wheels, brakes, shufling feet, bells, trafic outside, clattering, chattering, screeching… allegro assai, crescendo, stretto!!! No warning between, jerking back and forth, roughly hurtling missile.

Swarm after swarm of demon-possessed sonic insects envelope auditory space, viciously attacking every crevice.

So, why don’t you take the bus / train, then?

46 Ido Kedar, “A Challenge to Autism Professionals,” Ido in Autismland, blog post, February 16, 2014, accessed April 16, 2016, http://idoinautismland.blogspot.com.au/2014/02/a-challenge-to-autism- professionals.html . 36 Sometimes, I do. Actually, most of the time, I try my best to be like the rest of you. But would the rest of you do it any better than I do, if you were in my embodiment? Simply put: I am pretty good at dragging myself through excruciating pain just to pretend to be just like everyone. But how good would everyone be if they had to live just one day experiencing the world like me?

The wheels of the bus go round and round… round and round…” – bunnyhopscotch.47

In the programme notes for my multimedia, multisensory installation and performance work, Scheherazade’s Sea 2010, I introduced the richness and extreme contrasts of my autistic existence. This performance work was created as a concretisation of my sensory realm, in which I presented the positive as well as negative aspects to sensory acuity, while simultaneous exploring social dilemmas through music, poetry and storytelling.

“Inside the conines of a small physical space, for a brief half hour or so, unfolds an intimate micro cosmos, where the surreal merges with hyper-reality, and senses are engaged in a seamless interplay of expressions and experiences. Scheherazade’s Sea explores the fragmented sensory realm of my own autistic consciousness, in which music and sound carry visual meanings, verbal communication accompanies olfactory associations, symbolisms abound and heightened awareness of sensorial details can sometimes be disjointed, confusing and overwhelming,

47 Dawn-joy Leong, “Wheels of the Bus,” Bunnyhopscotch, blog post, accessed April 15, 2016, https:// bunnyhopscotch.wordpress.com/2016/01/04/wheels-of-the-bus/#more-9203. 37 other times comforting and humorous, but always dynamic and alive.” – Dawn-joy Leong48

Storytelling

Figure 3 Ink drawing for “Le Petit Garçon et Bunnyblu.”

As an autistic artist, storytelling is one of the crucial parts of my creative utterance. This form of writing-cum-performance offers to me a non-confrontational, non- didactic, oblique channel for expression. I ind theatrical approaches to communication, for example storytelling, most suitable for expressing my thoughts about dificult social conundrums: I am able to stand askance from the actual mental- emotional upheavals, while at the same time inject humour and playfulness into ponderous subjects. One of my favourites from Scheherazade’s Sea 2010 is “Le Petit Garçon et Bunnyblu,” a whimsical, ‘naïve’ story set to piano accompaniment and ink drawings. This story-cum-musical-performance is a light-hearted, yet earnest satire on the confusing social construct of ‘romance,’ through the eyes of an autistic

48 Dawn-joy Leong, “Programme notes for Introduction” Scheherazade’s Sea: A Multi-media, Multisensory Installation and Performance, (M.Phil thesis, Hong Kong University, 2010). http:// hub.hku.hk/handle/10722/146147;jsessionid=5B58A209B130D4A0351CABE6337D1266. 38 protagonist. While seemingly ‘twee’ and bordering on the nonsensical, the story contains consequential observations and questions about normative social frameworks in conlict with autistic modalities.

39 3. SPACE OF MIND

A stone in my soup: thinking through the autistic body

I dance because I cannot walk… the ground it is too strange… I must count one, two… one, two, three! (dance – Dawn-joy Leong 2012)

Living with sensory idiosyncrasy is a multifarious experience of extreme highs and lows. A speciic disability may sometimes demonstrate as ability when the situational contexts change. Pioneering autistic advocates Temple Grandin and Donna Williams have been emphatic about the senses holding the key to understanding and therefore embracing and empathising with autistic embodiment. In her books and numerous public lectures, Grandin elaborates eloquently on her own smorgasbord of sensory anomalies: the ways in which textures of fabrics, stitching and ixtures in ordinary clothing can easily trigger extreme reactions of discomfort and physical pain, how auditory sensitivities affect her day to day life, and the challenges faced as a result of proprioceptive dificulties. Grandin consistently places great emphasis on sensory issues and her straight-forward explanations of the complex sensory networks in autism have become valuable resources for the lay person interested in autistic visual thinking and alternative perceptual propensities.

“My top priority for autism research is sensory problems. For many individuals on the autism spectrum, sensory over-

40 sensitivity may make it extremely dificult to tolerate normal environments.” – Temple Grandin49

There are myriad differently specialised channels through which autists develop understanding and acquire knowledge of the world around. Rather than the ‘visual thinking’ pictorial style described by Grandin,50 Donna Williams explains hers as a need to come into corporeal and proprioceptive contact with the objects and processes of learning:

“I largely learned kinaesthetically; through direct physical and hands-on experience and patterning.”51

For others, it may be mixed combinations of the visual and kinaesthetic, as well as auditory, olfactory and gustatory. Synaesthesia is also very common in autism, where the environment is accessed and received via inter-sensory associative channels, for example, tasting colours, hearing shapes etc. Autistic savant, Daniel Tammet says he ‘thinks in numbers,’ which he visualises as colours and shapes,52 and his art and illustrations provide fascinating insights into his visual-mathematical synaesthesia. He provides clear and detailed descriptions of examples: … “every number has its own shape and character. One is a lash of white light, six is a tiny and very sad black hole. The sketch here is in black and white, but in my mind, they have colours. Three is green. Four is blue. Five is yellow. I paint as well. And here is one of my paintings. It’s a

49 Scott Barry Kaufman, “Q&A With Temple Grandin on the Autistic Brain,” Scientific American: Beautiful Minds 26 June 2013 http://blogs.scientificamerican.com/beautiful-minds/q-a-with-temple-grandin-on-the- autistic-brain/ (Accessed 27 January 2016)

50 Temple Grandin, Thinking in Pictures: and other reports from my life with autism, (London: Bloomsbury Publishing 2015)

51 (http://www.donnawilliams.net/about.0.html - accessed 24 Janurary 2016)

52 Daniel Tammet, “Born on a Blue Day: inside the extraordinary mind of an autistic savant.” Free Press; Reprint edition (October 16, 2007)

41 multiplication of two prime numbers. Three dimensional shapes and the space they create in the middle creates a new shape, the answer to the sum.”53

Figure 4 Daniel Tammet: numbers.54

Figure 5 Daniel Tammet: multiplication.55

(Content removed for copyright reasons.)

53 Daniel Tammet, “Different Ways of Knowing,” TED2011, March, accessed 29 March 2016, https:// www.ted.com/talks/daniel_tammet_different_ways_of_knowing .

54 Screenshot. Ibid.

55 Screenshot. Ibid. 42 Moving in the body

Proprioceptive challenges are common in autism. Autists grapple with various combinations of ine and/or gross motor skills, at different levels of dificulty. As with many other challenges that autists face, the root of the problem usually lies in sensory idiosyncratic behaviour. For example, where motor skills are concerned, the problem is not isolated to physical coordination alone, but rooted in a complex relationship between multiple sensory stimuli and detail-focused cognition. A simple and yet poignant description of the struggle with motor coordination and assorted accompanying sensory disturbance is this illustrated poster about an autistic child describing the experience of catching a ball.

Figure 6 “I couldn’t catch a ball. You people call it ‘clumsy.’ Text by Clint Newton, Illustrations by Mercy Charpentier.56

(Content removed for copyright reasons.)

My own dificulties with balance is explained in the whimsical poem, “dance,” quoted at the beginning of this chapter, describing the awkwardness of executing what seems a simple task of walking, compared with the more complex ability to dance with luid ease. Although the poem does not spell out the presence of sensorial-cognitive interferences, they are alluded to by the references to the ‘strangeness’ of the ground, dancing and rhythmic pattern (counting).

As a result of the acute consciousness of sensory-cognitive interplay, actions that may be innocuous to the less observant neuro-majority are often painfully deliberate undertakings for the autist. When walking, I am aware of ‘directing’ my corporeal body and senses, like a conductor of an orchestra or stage director, to ‘perform’ the necessary coordinated movements and maintain smooth control of its ‘low’ to

56 Clint Newton and Mercy Charpentier, “Catch,” by Anorak Girl, Deviantart website, accessed 29 January 2016, http://anorakgirl.deviantart.com/art/catch-422543336 . 43 prevent myself from tripping, or appearing ungainly. Inside my mind, there is usually a musical sequence that forms a background auditory pattern and rhythmic pulse propelling my body into action, much like a musical score. I am also aware of the placement of my feet, legs, arms, hands and even the torso, neck and head, details ‘written’ into the arrangement like an elaborate fugue. If I become distracted and lose rhythmic continuity, I am likely to ‘misplay’ one or more components in this intricate dynamic composition, lose my balance and fall. Since my proprioceptive ability seems to respond best to musical rhythm and pattern, I am able to learn and enjoy executing combinations of sequential movements in the context of dance. This attentiveness to proprioceptivity, especially walking, has heavily inluenced a number of my creative expressions.

My video, “Four Thirty-Three,” is about the multisensory and philosophical process of traversing: to me, walking is akin to “dancing inside roaring silence, moving through blurry obfuscation, (while) embattled fragments hurtle through time and space.”57 Since acquiring my irst digital camera with a video recording function over a decade ago, I have been collecting footage of my feet as I am walking. When Lucy, my Greyhound, came into my life four years ago, I began to record Lucy’s paws and our walks together, adding these to my collection. I discovered that she had certain sensory peculiarities regarding her paws, and she made known quite clearly the textures she liked or disliked during our walks. For example, she is averse to walking on wet and muddy grass: she would pause either at the threshold or a few steps into the grass, hold up a front paw, fold back her ears and look intently at me. Once, after a heavy rain, I took her downstairs for toileting. On our way home, she paused at the grass verge outside our apartment block and resolutely refused to proceed any further. I had to carry her across the three feet of soggy grass. I am sympathetic to her quirks, as I would not like to be stepping barefoot in wet mud myself. Lucy’s walk is also very elegant and dainty, even when compared with other Greyhounds, almost poetic in rhythm and placement.

57 Dawn-joy Leong, “Four Thirty-Three,” 2014, exhibited at InMotion, AirSpace gallery, Sydney. https:// vimeo.com/115487707 44 Figure 7 Screen captures from my video, Four ThirtyThree, 2014.

The grainy, out-of-focus and shaky video brings to the fore my preoccupation with movement and balance, comprises a blend of footage from my ‘walking’ collection, with the song, “Ginger Rogers Clouds,” by my friend Kateryna Fury, who lives in New Mexico, USA. Fury is autistic, paraplegic, has Ehlers Danlos Syndrome, and describes herself as “an eclectic collection of ideas, a synaesthete who experiences everything with full body contact, and an advocate for disability rights.”58 Once a fashion model and dancer, Fury relects in her song, “Ginger Rogers Clouds,” upon her personal journey as an autistic individual grappling with brain damage, PTSD, Ehlers Danlos, issues of pain and proprioceptive challenges. The song was recorded spontaneously by Kateryna, and sung a capella (without musical instrumental accompaniment). The

58 Kateryna Fury, description as guest artist for “Roaring Whispers 2013,” an exhibition by Dawn-joy Leong, UNSW Art & Design. 45 title of her song is a deliberate reference to dance, invoking the spirit of Rogers,59 and the title of my video is a nod to John Cage’s 4:33. After Kateryna’s song ends, the soundscape ceases abruptly, and viewers are led into a ‘mindspace’ in which the senses must then create their own (conscious or subconscious) soundscapes from internal or external ambient sources as the visual images of walking continue. The thematic material develops later to include scenes of Lucy walking with me, indicating that Lucy has become a very present and vibrant part of my proprioceptive journey. Another short video I made recently on the theme of walking with rhythmic-melodic mental prompting is “walk-dancing,” a simple, randomly looping sequence of walking with Lucy, our shadows thrown onto the concrete pavement, and featuring an old song I had written, “Love,” recorded in 2000.60 When I reviewed the video I had made, I realised that I was singing my song a capella along the way, and decided to insert the recorded version as a continuation, and to emphasise the illustration of music as the driving force behind my own sense of balance when walking.

On the less convivial side of difference in sensory perception lie the actual impact of pain triggered by over-sensitivity to stimuli (internalised), and serious repercussions on social interaction (externalised), the latter most commonly blamed for social- relational breakdowns. Simply put, it is not easy, and in some cases almost impossible, to maintain the levels of exuberance and jocularity required in most normative social situations when being assailed by invisible stabs, jolts, prods, while valiantly ighting off wave after wave of pernicious asphyxiation and bilious repugnance. Of course, excruciating physical discomfort is also very much part of the grand equation, yet too little understood. A comment I made in an online feature interview by SBS News sums up the conundrum of autistic sensory meltdown in young children, too often erroneously mistaken as temper tantrums:

59 We both share a similar fascination for proprioceptivity, a love for dancing, and are avid fans of the two iconic igures of ballroom dancing in the 1930s, Fred Astaire and Ginger Rogers.

60 Dawn-joy Leong, “walk-dancing,” music video, uploaded 2016. https://youtu.be/vDEp2oZQFgU 46 “If you were non-verbal, a young child, and in grief and pain all day, wouldn’t you be violent?” – Dawn-joy Leong61

The poem quoted at the beginning of this chapter, “your aura is ringing in my ear,”62 was written in response to one particular social occasion. In order to better cope with the lood of internalisation that inevitably follows sensory encounters during interpersonal exchanges, I often write poems, as I ind this the more lexible form of linguistic expression for immediate sensorial expressivity. The scene for this occasion is the living and dining room of a small apartment.

There were two people in the space: a friend of mine, non-autistic and very much social-minded, and myself. I cannot recall the topic of our spoken conversation, as my senses were too inlamed at the time. The sensorial dissonances were all I could recall, and their effects on my nerves are still vivid in my memory bank. As we chatted, my friend began to scratch herself along bare arms with her long ingernails. The sound of ingernails scraping against skin, with accompanying ‘echo bubbles’ from tiny reverberation chambers situated under concave nails and ingertips, was like a jagged quivering blade drawing lines back and forth on my eardrums while minuscule explosions go off underneath the jarring tonalities, sending sharp shattering pain signals through my entire body. Adding to the auditory discomfort, there developed unheeded a sympathetic resonance for the skin that was being mauled so casually and mercilessly.

Were I not (by now) well-trained to ignore my own intrinsic autistic senses to the point of self immolation, I would have let out a long, melismatic high-pitched scream, its frequency, tonality and intensity matching the effect of her scraping ingernails

61 White, Mark, “A Different Way of Thinking,” pictures by Nick Cubbin and Damien Pleming, SBS News Feature, Accessed April 18, 2016, http://www.sbs.com.au/news/feature/different-way-thinking.

62 Dawn-joy Leong, “Ear,” Bunnyhopscotch, blog post, accessed April 11, 2016, https:// bunnyhopscotch.wordpress.com/2016/01/20/ear/. 47 upon my senses, as a spontaneous conversational reply much like in a musical ‘Call and Response’! Indeed, the physical body of that wailing scream did actually form like a foetus inside my mental-corporeal space, but I willed myself not to allow it to be released into the shared atmosphere. I was also desperately controlling my facial muscles so that I would not grimace and wince from unsolicited empathy for her skin, which surface layers were being ripped apart by the nails. My friend obviously felt no pain, in fact, it was probably a comforting feeling for her, but I was not cringing in symbiosis with my friend per se, I was doing so for her skin. Then, there was the element of olfactory reception and riposte. I was wrapped in the acrid blanket of her smell, which became so overpowering that the tentacles of nausea crept up on me, wound around and threaded through me, and began to squeeze me till quelling the urge to vomit became the other internal battle that I had to wage. I could not allow my body the license to interrupt my friend mid-words and run to the toilet to dislodge the demons, nor did I dare to show the slightest hint of its sickening existence.

Why this almost brutal self-suppression? The reasons are simple, one to which many autists, if not all, will readily attest: the desire to not offend Other, and long-term subjugation of Self in deference to the schema of Other, because Other is unable to understand and accept modalities of Self. In even more straightforward terms, “I have to endure your cultural preferences because you have no idea how to endure mine.” The forcefulness of this deliberate tolerance becomes all the more pronounced when it comes to people I value highly in some way or other.

What most people in social contexts seem not to understand about autistic hypersensorial relexes is that they are involuntary, and not indicative of personal preference. The senses do not respond to stimuli according to an emotional or social ‘like or dislike.’ In the same way as inhalation and exhalation are autonomous relexes – that is, one does not breathe according to an emotional or social prompting – the sensorial system functions in the way it is designed to function as an entity unto its own. In simple terms, just because my senses recoil at a person’s scent, it does not

48 necessarily mean that I dislike the person, or that I do not wish to be friends. My senses sometimes feel revulsion at the smells emanating from my own body too, depending on the speciic circumstances. Sensing – ‘thinking through the body’ – is not a sentimental function, although some strong sensations may evoke emotion-based reactions like fear, longing or amazement. On a social level, it is no wonder, then, bearing the weight of too much sensory information, that I usually have scant recollection of the verbal interchanges that transpire during casual exchanges.

Focusing on the senses

Autistic self-advocates have been repeatedly emphasising the need to seriously address the issue of sensory anomaly for some time now. In her many public lectures, Temple Grandin vocally and vehemently draws attention to the need for more research about and recognition for sensory perceptual differences inherent in autism. Here, she draws a clear line between sensory disturbance and perceived ‘bad behaviour’:

“You must never mix up sensory problems with bad behaviour. We need to do a lot more research on sensory issues. A lot of these sensory issues are very very disturbing.” – Temple Grandin63

Grandin is perhaps the most well known autistic igure speaking on an international platform, but she has not been the only vigorous advocate. Many other autistic voices have added to the call for greater emphasis on autism-speciic sensory idiosyncrasy. Non-speaking autist, Amanda Baggs, writes:

63 Temple Grandin, "My Experience with Autism," MIND Institute Lecture Series on Neurodevelopmental Disorders, recorded on February 14, 2007 (U.C.T.V., University of California Television), accessed April 11, 2016, http://www.uctv.tv/shows/My-Experience-with-Autism-12868. 49 "You’ll notice that I haven’t mentioned social skills. That’s because I don’t think autism is fundamentally about that. It’s about differences in sensory perception, cognition, and movement. And the way they interact and blend together. The social problems are out on the periphery"

- Amanda Baggs64

Yet, practical focus on sensory aspects of autism has been muted in comparison with much more robust focus in areas such as social behaviour and adaptation. On the surface, it seems as if the current lack of emphasis on sensory atypicality may be partially attributed to its exclusion from the diagnostic standards, and this is a view shared by some clinicians and researchers.65 However, it is my belief that there exists a more cogent underlying aspect to this disproportion, which is rooted in the ‘outside looking in’ perception of autism, where autism is approached from the paradigm of the social establishment as a dilemma to be solved, or even an abhorrence to be eradicated. While effort has been made to understand the unusual sensory world of autism, it is nevertheless examined largely as a phenomenon of unwelcome dissonance, under the microscope of the pathology, which eschews autism’s internal, empirical and experiential domains. Hence, even among the occupational therapies that recognise the importance of addressing the senses and therefore claim to centre their efforts around sensory integration, a closer look at approaches and language employed by practitioners reveal that these, too, are fundamentally aimed at ‘re- calibrating deviance’ in order to better align with acceptable social standards.

It is disturbing, to say the least, for any autist searching the internet for help with sensory related struggles, to ind descriptions such as these. (I have underlined the

64 Amanda Baggs, "Plants Outside the Shade," ASAN – Autistic Self Advocacy Network, April 9, 2012, accessed March 3, 2016, http://autisticadvocacy.org/2012/04/plants-outside-the-shade/.

65 Carolyn Henshall, “Unusual Sensory Experiences in People on the Autism Spectrum,” (PhD diss., University of Warwick / Coventry University, 2008). 50 speciic words for ease of visual access and clarity, and my responses follow the quotes.)

“Sensory-based approaches to treating Autism Spectrum Disorders (ASDs) concentrate on correcting or improving the body’s abnormal response to external stimuli.”66

What are we ‘correcting’ and who dictates the perimeters of ‘abnormal response’? To the autist who is stimming as a means to calm overwrought senses, the lapping of arms and hands is actually a normal, positive response, and thus not in need of correction. In addition, when this natural way of self-calming or self-regulation is ‘corrected’ and taken away, what can be offered in its place? Is the purpose of this ‘correction’ to make the autistic person more socially acceptable to the neuro- majority, or for the intrinsic wellbeing of the individual?

“This therapy uses repetitive exercises to help a child experience touch and other sensations more accurately.” “Sensory integration therapy is intended to teach the brain to react more eficiently to sensations.”67

The term ‘repetitive exercises’ begs the question whether this may be a socially acceptable reference to rote force. As for the claim regarding touch and sensation, it is hard to see how a non-hypersensitive therapist may be able to teach greater accuracy

66 “Sensory-Based Therapies,” Interactive Autism Network, accessed April 11, 2016, https:// iancommunity.org/cs/what_do_we_know/sensory_based_therapies.

67 Erica Patino, “Sensory Integration Therapy: What It Is and How It Works,” Understood, reviewed by Sheldon H. Horowitz, Ed.D., Feb 25, 2014, accessed April 11, 2016, https://www.understood.org/en/ learning-attention-issues/treatments-approaches/alternative-therapies/sensory-integration-therapy- what-it-is-and-how-it-works. 51 and eficiency in response to stimuli. What and whose measure of accuracy and eficiency does this statement refer to?

“The goal of Occupational Therapy is to foster appropriate responses to sensation in an active, meaningful, and fun way so the child is able to behave in a more functional manner.”68

Again, the question arises: what constitutes appropriate response, and who is the authority that decides the measure of meaning in the ways the autist senses the world? How is a behaviour certiied as functional in one context and not in another? As for the claim of ‘fun,’ one wonders whether this is skewed towards neurotypical perspectives of what constitutes fun, or the autistic person’s frame of reference?

It is not that autists do not feel the need for well-designed and effective help to address the dificulties of balancing and coping with divergent sensory perception and daily living, quite the contrary. However, the language employed by the Collective relects the prevailing attitude of those claiming to offer science-based mitigations, which is biased against intrinsic functionality, and leaning heavily towards the deicits-based model of ixing what is widely (mis)perceived as a grave social predicament. When viewed from within the intrinsic domain of autism, such forms of rigid ‘correction’ and ‘rehabilitation,’ many boasting data-based success statistics, come across at their most benign as “aimless buzzing around the campire of neurotypical bonhomie”69 and at worst, oppressive forms of despotism.

68 “About SPD,” Sensory Processing Disorder Foundation, 2016, accessed April 11, 2016, http:// www.spdfoundation.net/about-sensory-processing-disorder/.

69 Dawn-joy Leong, “Campire,” Bunnyhopscotch, blog post, January 28, 2016, accessed March 31, 2016, https://bunnyhopscotch.wordpress.com/2016/01/28/campire/. 52 Very often, unorthodox sensory-cognitive systems have contributed to richly unique ways of observing, assimilating, and re-presenting internal and external domains. In fact, a great deal of creative achievement by autistic persons stem from atypical sensorial characteristics. For example, in Temple Grandin’s case, hypersensitivity to touch – aversion to unsolicited touch, yet craving the comfort of intense pressure – led Grandin to design and construct her “squeeze machine,” which has inspired many other devices based on similar concepts of deep pressure stimulation.70 Her empathic awareness of the sensory realm of animals and the ability to visualise and draw precise plans led to groundbreaking animal behaviour research, while Grandin’s humane restraint systems and cattle loading methods for the lifestock industry are world renowned.71 In my case, my relationship with my dog, Lucy, has led me to explore trajectories of thinking and approaches in my artistic practice which I would not have been inspired to notice if I had conined myself to the domain of human interaction.

There is no question, however, that the unusual sensory features in autism cause a great deal of discomfort (and even agony, at times) to the autist on a constant and daily basis, and this most deinitely needs signiicant and effective mitigation. The dificulties faced by autistic persons with sensory atypicality are numerous. Among these challenges, two main areas in need of systematic attention are modulation for the purpose of alleviating negative aspects on Self, and nurturing unique abilities by channelling sensory differences into viable and satisfying creative output. These ought to operate symbiotically and simultaneously, with equal consideration, and the fundamental goal should be the wellbeing of the autist, rather than itting in with comfortable expectations of society. Perhaps, if there were more regard and empathy for the innate autistic embodiment, society at large may reap far greater beneits from

70 Temple Grandin, “Calming Effects of Deep Touch Pressure in Patients with Autistic Disorder, Students and Animals,” Journal of Child and Adolescent Psychopharmacology, 2, no.1(1992): 63-72, accessed 4 March 2016, http://www.grandin.com/inc/squeeze.html.

71 Temple Grandin, “Behavioral Principles of Lifestock Handling,” Professional Animal Scientist, (1989): 1-11, accessed April 11, 2016, http://www.grandin.com/references/new.corral.html 53 reciprocal co-existence than does the current preference for anachronistic and discriminatory perspectives and pedagogies.

In essence, what is at stake is the fundamental priority of focus that pervades current autism research and practice. One wonders whether this imbalance in primacy of attention is simply because the multidimensional intensities of the autist’s sensory world holds little meaning and interest to anyone other than the autist, whereas the accompanying ‘odd’ behaviours challenge and impinge upon wider society in ways uncomfortable to general expectations of the ‘acceptable normality,’ and hence deserve punitive ministrations. Does research and practice strive for better understanding of autism as an intrinsic nature-of-Being, or is the sole focus that of solving an uncomfortable and undesirable ‘problem intrusion’?

Word-of-Mouth

“I have nothing to say, and I am saying it.”

- John Cage72

Autistic persons suffer overwhelming strains on capacity for socialising within the prevalent, acceptable and popular frameworks. The side effects of such effort can be debilitating and long-lasting. Prevalent modes of interaction, expression and communication lean heavily towards linguistic semanticity. It is largely through the spoken word that emotional signiicances, communal messages, interpersonal reciprocities and crucial information are relayed and exchanged. For example, it is common to come across complaints in social media forums from non-autistic parents of autistic children about the lack of verbal utterances that, to the non-autistic parents,

72 John Cage, “Silence: Lectures and Writings,” Project Muse, (Middletown: Wesleyan University Press, 2010), accessed 2 March 2016, http://camil.music.illinois.edu/Classes/Lund/507-Cage-Feldman-Brown/Cage- Readings/Cage-Lecture%20on%20Nothing.pdf. 54 signify love and emotional bonding. For example, in an article on the Daily Mail, an actress touting a pseudo-scientiic diet ‘cure’ for autism was quoted as saying this about her autistic son, “Like lots of mothers of regressive autistic children, I was desperate to get my child back. I would have done anything for a smile or a cuddle, or to hear him say: 'I love you, Mum.' ” Reading the threads on this topic in online forums can be distressing to the autist. It seems as if, for these parents, to hear their child utter the words “I love you!” represents the ultimate in human closeness, and the depth of emotion and rich tapestry of connectedness of the non-verbal or non- speaking autistic child is rendered valueless because of the absence of these three spoken words.73 In some cases, the parents admit that they know their child loves them, but there is nevertheless a great need for verbal reassurance.74 Autistic writer, Amy Sequenza addresses the thorny issue succinctly:

“Some parents might ind that listening to a child they don’t understand is too hard, they might fool themselves into believing “experts” will give them the correct, fast answer. They would be wrong. As parents, they should be thinking of their children irst. Thinking about how the Autistic child is being forced into interactions they are not prepared for, into communicating in ways they still cannot grasp, even as they ARE communicating, even as they ARE interacting, even as they DO have a lot to say.

If you can do this, if you can really listen to your Autistic child, you will never be worried about when they will say “I love you”.

73 Sally Beck, “I helped my son with autism cope better by changing his diet,” Daily Mail Australia, 26 June 2009, accessed 30 March 2016. http://www.dailymail.co.uk/health/article-1194841/I-helped- son-beat-autism-making-weetabix.html#ixzz464hYVhgr .

74 The parents in this community thread in the Circle of Moms website, place great value in the spoken word and social-behavioural features of affection like hugging. Circle of Moms online forum, acceded 29 March 2016, http://www.circleofmoms.com/autismaspergerspdd-awareness/won-t-say-i-love- you-509025 . 55 You won’t even think about these words being SPOKEN because you will be LISTENING to them in so many different ways.” – Amy Sequenza.75

It is encouraging to note, however, that there are increasing numbers of parenting groups and individual parents of autistic children who are keen to glean insights from adult autists and parents who are themselves autistic, and enter into meaningful, mutually supportive conversation. One parent of autistic children, whom I met during my research group’s event, Autism MeetUp 2016, recently sent me a very useful link to a blog post with a list of autism organisations which are disrespectful to the native autistic paradigm and that promote eugenics or a cure for autism, and a list of resources that address autism from an inclusive perspectives, managed mostly by autistic persons.76 These parents of autistic children may be in the minority at this point of time, but it is encouraging and heartening to know that the groundwork towards reciprocity is being laid for a more promising dialogue surrounding autism.

The sensory-cognitive modality of the autist conveys messages in a very different parlance, and its nuances are too often misinterpreted by the neuro-majority as social aversion, social phobia, or a selish disregard for the non-autistic Other, because the paradigm of the social-emotional person is different from that of the detail-focused sensorially-connected person. Many non-autistic individuals would readily admit that not all communication needs to be worded, yet there remains an innate reliance on wordedness to satisfy emotional and mental needs. On the other end of the verbal vs. non-verbal quandary, autistic individuals who are not categorized with ‘verbal impairment’ are also often ridiculed and declared socially inept when their use of words tends towards the bluntly honest and/or precisely pedantic.

75 Amy Sequenza, “Parents, are you listening to your child?” Ollibean blog, accessed 30 March 2016, http://ollibean.com/2016/04/13/parents-are-you-listening-to-your-child/ .

76 Dawn Pederson, “On Autism: Whom to Trust and Whom to Avoid Like the Plague,” Dawn’s Brain, blog, accessed 30 March 2016. http://dawnsbrain.com/on-autism-whom-to-trust-and-whom-to-avoid- like-the-plague/ . 56 There seems to be an ironic impasse where worded intercourse is concerned: the autist who is non-verbal, non-speaking, or struggling with the language of words in an intensely verbal world is callously labelled an indescribable tragedy, while the autist who has mastered the technicalities of linguistic execution but without its accompanying social applications are pronounced offensive travesty. It is no wonder that the vast majority of autists report deep dissatisfaction with this dominant interactive modality. The opening sentence of Grandin’s now famous book, “Thinking in Pictures,” is characteristically direct and to the point:

“I THINK IN PICTURES. Words are like a second language to me.” – Temple Grandin77

Donna Williams had this to say about words:

“Without the use of gestural signing, my brain seems to struggle to keep up with putting any concepts to words, and I seem unable to hold them consciously. Even when I do understand them, after three seconds, the meaning of what I’ve heard is mostly jumbled and large chunks of it seem to have fallen away.”78

Many autistic persons struggle to grasp not only the locutory lingua franca of the prevalent social world, but even those who have managed to grasp it well, like Grandin, are nonplussed by the apparent overwhelming need for and dependency upon verbality in achieving any acceptable semblance of meaningful interactivity.

77 Temple Grandin, Thinking in Pictures: and other reports from my life with autism, chapter 1. Vintage ebooks, 2006.

78 Donna Williams, The Jumbled Jigsaw: An Insider’s Approach to the Treatment of Autism Spectrum ‘Fruit Salads,’ (London: Jessica Kingsley Publishers, 2006) 55. 57 Temple Grandin frequently refers to the general social populace as the “Yakkity-Yaks,” humorously alluding to their preference for a verbal-focused approach to socialising.79

By contrast, personal accounts of autists describe comfortable communication as a tangible awareness of ‘live connections’ between internal corporeal ‘sensors’ and the external material and natural realm. I refer to this as a kind of “crisp consciousness” that undertakes an intrinsically sensory approach towards interpreting, connecting and experiencing empathy with the world of animate and inanimate forms. Perceived from within the sensorial domain, verbal conversation consists of words formed by combinations of mouthed consonants and vowels, threaded into chains of sentences, which semantic meanings unfold sequentially in space and time as they are launched into the atmosphere, punctuating the air at varying frequencies and decibel levels. Verbal parlance, from this viewpoint, constitutes an activity of effort and coordination between brain and body, manipulating and directing palpable physical entities that are being freed from out of the nebulous abstract regions of the mind, now given shape and form, competing one with another for attention and interpretation. It is a phenomenon that, for the autist, can be fascinating, yet disturbing and confusing all at the same time.

I have been asked on many occasions to describe in words what a ‘non-speaking’ or a ‘non-verbal’ day feels like. The two are vastly different states. ‘Non-speaking’ refers to not enunciating words, while ‘non-verbal’ denotes the absence of words entirely. That request is paradoxical in itself: while one may still use typed words to explain the non- speaking state, how does one verbalise the non-verbal? Using words to illustrate any of the two modalities (non-speaking and non-verbal) would represent at best loose generalisations of intricate fabrics made up of interwoven and overlapping combinations, permutations of mind-body states. Words, however, are necessary to

79 Temple Grandin’s description of social-focused neurotypicals as “yakkity-yaks” appears in almost every one of her talks and interviews; Maia Szalavitz, “Q&A: Temple Grandin on the Autistic Brain” Time, May 16, 2013, accessed April 11, 2016, http://healthland.time.com/2013/05/16/qa-temple- grandin-on-the-autistic-brain/. 58 convey detailed semantic meaning from Self to Other, especially when wordedness is the main form of communication of the Other.

The written word is far more conducive to the autistic modality than the spoken. Many autists previously considered ‘low-functioning’ because they were unable to speak in words are now communicating via typing programmes on electronic devices. The revelations from this group of autists have hit hard at the rigid and bigoted word- centric framework of functional labeling. Autistic blogger, Astrid van Woerkam, communicates via typing.

“Typing allows me to access my thoughts more coherently than speech. To me, even if when under stress my typing is still grammatically incorrect, it is still more authentic than my speech. Typing, for one thing, allows me processing time. If I use speech, I will forget what I needed to say in the midst of getting it from an idea in my brain to words out of my mouth. For another thing, typing allows some distance, which is what I feel I need to be, paradoxically, more myself. This may be more of an anxiety-related thing than an autistic thing, I don't know. I just feel that the medium of typing allows me to express myself much more eloquently than speech.” - Astrid van Woerkom80

Writer and autism advocate, Amy Sequenza, appeals to the speech-dominant world for acceptance of unconventional expressive modalities:

“Let's focus on what people say, instead of valuing speaking, or only one method of communication over any other. Everybody

80 Astrid van Woerkom, in Typed Words, Loud Voices, ed. Amy Sequenzia and Elizabeth J. Grace, Autonomous Press, 2015 ebook. 59 communicates. Words are beautiful. Our words have value.” – Amy Sequenza81

Julie Endow, another prominent autistic advocate, explains the sensory element in her communication:

“My way of thinking isn’t with words, it’s like words is a second language. In my mind, when I have ideas, it’s in the form of moving colours.”… “In order to be part of the world, I have to translate the sound and movement of the colours of my thinking into words, to connect with other people.” – Julie Endow82

DJ Savarese eloquently describes the necessity for a facilitator to help him communicate through typed words:

“… the person fearlessly helps me not to greet the kids directly. If I greet them directly, I get over stimulated, and my feelings grow so strong that holding them inside me is impossible.” … “Another reason why I use a facilitator is to help me focus.” – DJ Savarese83

Amanda Baggs offers another angle on a similar theme:

“…language was built mostly by non-autistic people, with the obvious results, and my biggest frustration is this: the most important things about the way I perceive and interact with the

81 Amy Sequenza, in Typed Words, Loud Voices, ed. Amy Sequenzia and Elizabeth J. Grace, Autonomous Press, 2015 ebook.

82 Julie Endow, ‘On Words and Writing’ – YouTube, May 4, 2014, accessed 12 April, 2016, https:// www.youtube.com/watch?v=bxUHnfAZYx8.

83 D.J. Savarese, “Cultural Commentary: Communicate with Me,” Disability Studies Quarterly, 30, no. 1 (2010), accessed January 19, 2016, http://www.dsq-sds.org/article/view/1051/1237. 60 world around me can only be expressed in terms that describe them as the absence of something important.

The absence of speech. The absence of language. The absence of thought. The absence of movement. The absence of comprehension. The absence of feeling. The absence of perception.

Focusing on absence is the easiest way to describe the presence of something much more important to me than what is absent.” – Amanda Baggs84

The concept of focusing on perceived absence as an alternative sensory space in which is fulilled richer resonances brings to mind a famous statement by perhaps one of the most inluential musical and artistic minds of the twentieth century, music composer, artist, philosopher and mycologist, John Cage:

“I have nothing to say and I am saying it, and that is poetry enough for me.” – John Cage85

In his writings, lectures and musical compositions, Cage vigorously challenged notions of sonic ‘emptiness’ and ‘silence,’ bringing to the fore ideas rich in eclectic diversity not found in traditional Western European Art Music practices. Although Cage’s exploratory and experimental approaches are still seen as stark confrontations to entrenched musical conventions, when contemplated from within autism’s paradigm of sensory-based connectivity and elemental-material reciprocity, his legacy does not seem at all out of place. To the autist’s hypersensory perception, silence is a non- verbal interstice brimming with palpable multidimensional sensory engagements, a

84 Amanda Baggs, “Cultural Commentary: Up in the Clouds and Down in the Valley: My Richness and Yours,” Disability Studies Quarterly, 30, no.1(2010), accessed Jan 18, 2016, http://www.dsq-sds.org/ article/view/1052/1238

85 John Cage, Lecture on Nothing 1959 http://camil.music.illinois.edu/Classes/Lund/507-Cage- Feldman-Brown/Cage-Readings/Cage-Lecture%20on%20Nothing.pdf (Accessed 2 March 2016) 61 richly eloquent ecosystem of meaningful correspondences sublime in unworded cogency. In fact, Cage seemed to associate and relate with sonic elements via intimately personal sensory-aware conduits very similar to that of many autists. To Cage, each articulated resonance bore a characteristic that individually impacted him, he was able to form ‘bonds’ with sounds, tones, combinations of tones, and was inspired by their intrinsic qualities.

“I remember as a child loving all the sounds, even the unprepared ones. I liked them especially when there was one at a time. A ive-inger exercise for one hand was full of beauty. Later on I gradually liked all the intervals. As I look back I realise that I began liking the octave; I accepted the major and minor thirds. Perhaps, of all the intervals, I liked these thirds least. Through the music of Grieg, I became passionately fond of the ifth. Perhaps you could call it puppy dog love, for the ifth did not make me want to write music: it made me want to devote my life to playing Grieg.” – John Cage86

In the realm of the normative, verbality is so prized that the ability to wield words is a mark of intellectual and functional aptitude. Where autism is concerned, the imposed standardized demarcation between ‘high’ and ‘low’ functioning autism is largely based on the autist’s ability to verbalise and articulate within the framework of prevalent social communication. Herein lies yet another law in the reasoning of current systems of measuring autism: functional labels are at best arbitrary, and at worst demeaning. This benchmark is limited and restrictive, it fails to take into account the wealth of intellect and profundity of wisdom that may be inherent and thriving within a different dimension, that is, one which does not place the same emphasis on the communicative systems used by the social majority. According to this traditionally accepted measurement, an autist is therefore considered ‘high functioning’ if verbally capable, while concurrently successful at masking inherent autistic traits so as to

86 Cage, “Silence.” 62 appear indistinguishable from the throng in social settings. However, what is not duly acknowledged is that the expectation to perform extrinsically in compliance with the demands of a neurotypical social script places a great deal of stress upon what is intrinsically a sensorially-connected system.

Emma Zurcher-Long is a teenage autistic girl living in New York City. Emma communicates mainly by typing. She is a published author and gives public presentations as part of her passion for advocacy and educating people about autism and neurodiversity. In her blog post, “I am Emma,” she describes her experience and frustration with speaking, what she calls “mouth words.” This is most deinitely not the mind of a person who can in any way be classiied as ‘low functioning,’ however, that was what Emma was pronounced by ‘experts’ in the ield of autism, because, among other things, she could not speak as other children did.

““What is your name?” someone might ask. It’s a simple question, but when I try to make the sounds that form my name, other words push and shove their way forward. Instead, “you may not spit,” or “Rosie’s not here!” are examples of seemingly random nonsensical, declarations that come out of my mouth. I call these utterances my “mouth words.” They could be seen as traitors, belligerent bullies who seek the spotlight, but they are not. My mouth words are funny to me, but misunderstood by others. My typed words are hard for me, but understood by many.” – Emma Zurcher-Long87

Apart from the internal tensions generated by a predominantly verbal-centric system (speaking and listening to, understanding and responding with words), for many autists, an over reliance on word-based interaction also fails to adequately match and support the richly intricate concrete-intuitive relational topography of autistic

87 Emma Zurcher-Long, “I am Emma,” Emma’s Hope Book, accessed April 12, 2016, http:// emmashopebook.com/2015/12/02/i-am-emma/ 63 embodied experience. Endemic communication systems are insuficient and even ponderously clumsy for the purpose of expressing and communicating the wealth of multidimensional nuances and textural complexities of the autistic domain. For the purposes of conveying the magniicence of such exquisite simplicity, many autists naturally employ symbolic and allegorical vocabulary.

Metaphor

Metaphorical language is of course closely associated with and intrinsically connected to poetry, which allows much more lexibility than prose. It is thus unsurprising that a number of autists feel more comfortable inside this medium. With poetry, one is able to wield typed words to better describe sharply articulated sensations, and at the same time, when spoken aloud, poetry can be a most delightful sensory engagement and performance. Ralph Savarese described this style of communication as “autie- speak,” “a highly poetic language that many non-verbal Auties produce spontaneously on their computers, whether in conversation or in actual poems,” more common among non-speaking autists who use facilitated typing methods.88

I do not it into this category, I was purportedly verbally adept well ahead of most ‘typically developing’ children, and during my early school years, I expertly played the part of the prattling “Little Professor” commonly attributed to Asperger’s Syndrome. It may well be that the linguistic style of the non-speaking autist veers more towards poetic expression than that of the speaking autist, however, although not non- speaking, since a very young age, I have gravitated towards poetry. While I had no problem fulilling the requirements of essay writing at school, I remained vividly aware of my own proclivity towards worded-fragments, especially when feeling distraught, during a ‘non-speaking day,’ or simply as a response to extreme weariness from the weight of duty to engage in active and entertaining social confabulation.

88 Ralph Savarese, "The Lobes of Autobiography: Poetry and Autism." Stone Canoe 2 (2008): 61-77. 64 When I was introduced to the work of Ralph Savarese, it was as if a large doorway to a vast and resonant world had opened before me. The door was a heavy one, which creaked loudly on rusty hinges. I had waited very long for this, and although I began to plunge excitedly into the expanse of literature suddenly made available to me, my ability to read vast swathes of text devoid of visual illustration is somewhat volatile – there are times when my brain seems to disallow any connection between physical text and mental comprehension, and then other times I ind myself devouring words with voracious force. Discovering (via Savarese’s writings) that someone else was aware of the autist’s ability to understand, peruse and execute metaphor in language was a thrilling afirmation of what I had already known all my life to be true, but was told otherwise by ‘experts’ in the ield of autism. The prevalent stance of autism research is that autists are dispossessed of meaningful language, slow to grasp metaphorical expression,89 and communication is considered a primary deicit in autism.90

Poetry possesses what I perceive as a bodily incarnation with proprioceptive cogency, while lending itself to the fragmented pastiches and montages of sensorial ebb and low. With poetry, it is almost as if I am physically ‘inside’ the communication, like a dancer, actor or painter, and I am able to touch, taste, smell and feel the movement of the words, along with their embedded fragments of meaning. In that way, I feel an immediate corporeal connection as well as a stronger emotional connectivity with that being expressed. The rhythmic-tonal undulations help to soothe frayed and tattered nerves, while word fragments provide adequate expression without the ponderous labouring of structured sentences. There are no extraneous encumbrances like ‘debris words’ to trip over. Indeed, poetry, according to Savarese, lends itself well

89 Gabriella Runblad and Dagmara Annaz, “The atypical development of metaphor and metonymy in comprehension children with autism,” Autism January 2010 vol. 14 no. 1 29-46 doi: 10.1177/1362361309340667

90 Uta Frith and Francesca Happe, “Language and Communication in Autistic Disorders,” Philosophical Transactions: Biological Sciences, 346, no. 1315(1994): 97-104, accessed July 7, 2015, http://www.jstor.org/ stable/56024 65 to the autistic sensory-infused style of communication because of its “plastic and permeable approach to language.”91

Non-speaking autist, Tito Mukhophadyay, describes his sensory-elemental connection in a poem about a cup, “A Simple Cup.”92

(Content removed for copyright reasons. Please access original via link.)

91 Ralph Savarese, “I Object: Autism, Empathy, and the Trope of Personiication.” Rethinking Empathy through Literature. eds. Sue Kim & Megghan Marie Hammond. (Routledge, 2014): 74-92.

92 Tito Mukhophadyay, “Five Poems,” Disability Quarterly, 30, no. 1(2010), accessed March 2, 2016, http://dsq-sds.org/article/view/1192/1256 . 66 Space of Mind

When I irst began on my journey of Self-Other research in Autism Spectrum Condition, writing under the pseudonym “Spunky Kitty,” I pondered in a blog post, “Theory of Mind – Whose?”, the possibility that perhaps autistics possessed a different socio-relational system, a separate ‘Theory of Mind’ from that of the widely accepted majority’s.93 The more I observed about my own sensory-cognitive functioning with respect to how I relate with the world within and without, and as I read and listened to numerous accounts by fellow autistics, it became increasingly apparent that the relational mind of the autist exists very much in the realm of the sensory.

“There are no words, but instead a beautiful environment where feelings, sensations, colors and sounds coexist. I often think if all humans could experience the world in hi-res, technicolor, surround sound as I do, everyone would be happier. I have come to understand that my mind is not like most people’s. I am Autistic.” – Emma Zurcher-Long94

The autist inhabits a Space of Mind. The term, ‘Theory of Mind,’ viewed in the neuro- cultural context, is by now mired in rigidity, bearing somewhat negative connotations because of its contentious imposition upon the measurement of autistic empathic mentalising ability. There is a need for another description for the autistic mentality, a different terminology that will open up new perceptivity. I coined “Space of Mind” because it invokes a sensorial, palpable expanse within which a fecund eco-system lourishes, and an aperture through which lows a wealth of communication and dissemination of ideas. As an artist, space and its inhabitation is of endless fascination to me. As an autist, space brings ininite tapestries of tangibility and engagement.

93 Spunky Kitty, “Theory of Mind – Whose?” Reposted in Autism and Empathy Blog, September 9, 2011, accessed April 12, 2016, https://autismandempathyblog.wordpress.com/2011/09/09/theory-of-mind- whose/

94 Zurcher-Long, “I am Emma.” 67 Within the sensorially ebullient expanse, the preconscious or intuitive autist’s mind is able to learn osmotically, communicating with and responding to elemental and material minutiae in the environment. For example, many autistic persons show a predilection for learning skills and acquiring knowledge instinctively, rather than via common methods of teaching. Donna Williams calls this a “post-hypnotic suggestion,” and recounts how she learned the techniques and skills of sculpture, painting, writing and playing the piano all without needing any formal instruction.95 When I was three years old, before I was able to read words, I was discovering the wonderful art of Japanese paper folding on my own, spending hours silently deciphering the diagrams in my mother’s Origami books. I became such an earnest disciple of the art that every piece of paper that crossed my path was subjected to metamorphosis by my little ingers, which did not go down well with an older sibling whose sheets of homework were lovingly re-crafted into what to me were vastly improved structures. When I was six, my father bought a piano and engaged a private teacher, thus beginning my journey into the amazing world of ordered sound which people call ‘music.’ However, I much preferred to learn tunes via sensory channels, and gravitated towards ‘playing by ear’ instead of reading the notes on the page, much to the chagrin of my tradition- minded instructor.

Detail-focused cognition is inextricably entwined with the intensity of autistic senses. This perceptual style, called ‘monotropic attention,’ is often misunderstood in a negative light and viewed as undesirable impairment in mainstream educational contexts.

“I can spend all day with one marble. Looking at it, feeling it on my face. One problem with trying to describe this is that there are far more possible sensations than there are words for sensations. So an entire day’s worth of experiences can come out to only one sentence. And it’s harder still to describe the

95 Donna Williams, Autism and Sensing – The Unlost Instinct, (London: Jessica Kingsley Publications, 1999): 43. 68 patterns formed between those sensations. Not abstract, logical patterns but concrete, sensory patterns. And those are how I understand and interact with the world.” – Amanda Baggs96

While the above perceptual style is far from ‘infertile’ and does not in any way perversely affect the low of normative social activity, it is nevertheless frowned upon, and expensive ‘therapies’ are prescribed for the purpose of eradicating the outward manifestations of this richly sensorially connected proclivity. Ironically, this modality lends itself most suitably to research and professional practices requiring intense focus and sensitive awareness of novel paradigms, and are qualities most admired in those autists who somehow manage in later life to defy the odds placed upon them by normative social structures. Unfortunately, a great many potentially brilliant minds are frustrated at the very basic level by educators and clinicians, who whose ‘expert’s’ analysis commonly echo the one caricatured in Steve Silberman’s review article, “Autism Inside Out.”

“How might a clinician describe this experience from the outside?

"Patient Amanda B., a 32-year-old female with a pervasive developmental disorder and signiicant verbal impairment, perseverated with a marble for more than six hours under observation today. (The patient's mother reports that marbles and other small spherical objects are one of her daughter's 'special interests.') Amanda ixated on the marble for an extended period of time and pressed it against her cheeks for the purposes of self-stimulation. This behavior (not signiicantly

96 Baggs, “Plants” 2012. 69 self-injurious) was accompanied by nonsense vocalizations."” – Steve Silberman97

The quote above is a profound piece of satire, which made me chuckle aloud, yet acted upon my emotional senses like a long jagged spear making a slow trail across my corporeal entity, while humming a repeated four note sequence in a Lydian mode, with a sad squeaky vibrato voice.

Personal anecdotes: is anyone listening?

“Many people believe autism describes a simple mind, and that someone like me has no understanding or awareness of my surroundings. My hearing is excellent. Things like the honking noise made by impatient drivers who think the sound of their horn will miraculously clear the road ahead is so intense I can become lost in the key of their horn.”

“It’s the same with light. The harshness coupled with bloated heavy air is so intense I become overwhelmed. I wonder if I am too aware of my surroundings.” – Emma Zurcher Long98

I presented a paper at a conference at Mansield College, Oxford, U.K. in 2013. There were two other conferences running simultaneously, and presenters were invited to sit in if any of the topics interested them. I decided to attend, as an observer, a session on the theme of Communication and Conlict. One speaker stood out from the others. The focus of his presentation was on achieving “broader engagement with the world

97 Steve Silberman, “Autism, Inside and Out,” Download the Universe, (2013), accessed April 12, 2016, http://www.downloadtheuniverse.com/dtu/2013/04/autism-inside-and-out.html.

98 Zurcher-Long, “I am Emma.” 70 around us” through willingness to embrace “fundamental mind shifts.”99 According to the author, one of the channels through which to access this transformation was the practice of meditation. At the end of the verbal presentation, the author asked the occupants in the room to participate in a brief meditation exercise. For three minutes, everyone was instructed to close our eyes and shift our focuses away from Self, and enter into a peaceful middle space of ‘self-voiding,’ with the aim of achieving a iner awareness of interconnectivity. I obediently closed my eyes, along with everyone else in the room.

As soon as the visual conduit was shut off, however, I became even more consciously aware of my already heightened senses. It was as if I had lost the privilege of a distracting ilter, and instead of being able to enter into any semblance of ‘meditative blankness,’ the loodgates lew open to herald an aggressive barrage of sensory details rushing into a small timid space. My mind could still vividly ‘see’ the luorescent lighting lickering above, the four walls seemed to inch their way ever closer towards me, as every occupant in the room remained in their varied positions around the rectangular arrangement of tables. All my other senses began to scream messages of panic about assaultive intrusions. With my eyes closed, I could no longer utilise the visual sense to distract from the constant low of eclectic sensory conversations, and I soon became increasingly acutely aware of the bodily smells of people seated around me. As a consequence, nausea slowly wound its tentacles around my diaphragm. I felt asphyxiated by the dense heaviness of the air in the room, my skin trying frantically but unsuccessfully to retract from the tiny droplets of damp settling upon its quivering surface. The lady sitting in front of me coughed, and a rancid regurgitated odour of partially digested lamb korma and curried basmati rice from lunch exploded through my olfactory channels, shooting its way upwards into an already pounding headspace and downwards like a searing ire to join the viscid growl of nausea. A sickly sweet smell of cheap synthetic perfumed shampoo blended with sour

99 John Backman, “Before We Talk: Discovery Dialogue as a Habit of the Heart,” The Way Things Aren’t: Deconstructing ‘Reality’ to Facilitate Communication, ed. by John Backman and Małgorzata Wójcik, (Oxford: Interdisciplinary Net Publishing, 2015) 71 perspiration emanated from her long hair. Someone across the room dropped a pen, and the sound was like a sharp crack of thunder splitting the charged atmosphere. The texture of the chair covers suddenly started to excoriate, taunting and daring me to scratch and tear at the itch in what would be deemed either most indecorous or labeled as an act of ‘self-harm.’ A little over the one-minute mark, I could no longer bear the horrifying intensity of sensory attack, and I opened my eyes in an attempt to stem the tsunami. I spent the rest of the ‘meditation time’ trapped in my seat, pain suddenly shooting through my legs, writhing in sensory and mental agony as my visual sense was not longer effective in iltering the overstimulation of the other senses.

At last, the three minutes were up, and the presenter asked us to share our experiences. Some members remarked that they were unable to fully concentrate on the act of ‘voiding’ the mindscape, as their minds wandered off to thoughts about food, places to visit afterwards, etc. Many others reported achieving a great sense of peace and serenity, afirming the presenter’s theories on the role of meditation as an agency towards achieving better understanding of and connection with the concept of Other. Mine was the lone testimony of a completely separate experience. I related my horrifying sensory dissonance to the group, and explained how persons such as myself, with sensory atypicality and perhaps also autistic at the same time, may not beneit from this model of approach towards social empathy. A few people entered the discourse on alternative empathies and embodiments with great enthusiasm and interest, in particular, an anthropologist among the group who welcomed my views and drew parallels with the cultures he was studying, and a PhD researcher who vehemently disagreed, insisting that there was only one ‘correct’ and universal social system dictating acceptable ways of communicating, and all deviations were simply ‘wrong.’ At the end of the lively discussion, the presenter politely expressed his reservations about my perspective, and, at the social level, avoided me thereafter at luncheon for the rest of the conference, as did the PhD researcher who insisted on there being only one ‘proper’ social system to embrace. This was a sharp contrast to both their exuberant amicability and almost overpowering friendliness towards me

72 before this session. I found the situation ironic, to say the least, since the main subject of interest in this session was about communication and conlict, and the presenter’s paper claimed to point towards a more heartfelt empathic connection with states of mind outside one’s own.100 However, it is a social situation with which I am by now quite familiar. Scholarship does not protect one from decisive ignorance, and researchers are humans after all, living under human-centric social-cultural perspectival constraints.

The experience brought a few questions starkly to the forefront. At which point in research and praxis is one novel paradigm superior to another? How does bypassing or sidestepping the clear and vocal enunciations of lived-experience make for better, unbiased and focused research? Is it even possible to achieve a state of complete lack of partiality, even in the so-called non-emotional, neutral scientiic disciplines?

‘Data-based’ study – whose data?

In 2014, I took part in a study conducted by a PhD researcher who claimed to specialise in aspects of physiological and psychological empathic and social motivation in autism. I was told in advance that the study would be about emotional vs. cognitive empathy. I remember thinking that I had read a few similar studies on this same subject, but couldn’t recall the exact titles of those papers. “Replication enforces truth,” I recall the words ‘auto-writing’ on my mental blackboard, for no apparent conscious reason. The laboratory was situated in a building tucked away behind another more prominent block. To access the lift that would take me up to the laboratory, I walked through a tunnel-like corridor in the middle of a food court occupying the ground level of the block in front. The combined smells of hot food wound around my neck like a hastily knitted scarf of cheap synthetic yarn that had been retrieved from vats of stale cooking oil. Greasy scent bubbles settled themselves

100 Backman, “Before We Talk.” 73 on my hair, and seeped into the fabric of my clothing as I traversed the passageway. The ceiling was low, there was a stiling thick air of oppression hanging around the lift lobby. I sat down on a slimy vinyl seat to compose myself, which was a juxtapositional irony because the grime from the seat hurt the fabric of my jeans, the stale thick air wrapped around me in sickening mockery, and I felt my senses already begin to go into high-alert mode. Thankfully, Lucy, my greyhound psychiatric assistance dog, was with me. Her calm concrete presence, leaning against my legs, reminded me to stay focused on the mission, and being able to establish tactile connection with her warm body and silky soft fur temporarily disconnected my senses somewhat from the assaultive sensory effects.

After checking my iPad for the umpteenth time to make sure I was in the right place, I entered the lift. I do not have a phobia for enclosed spaces, in fact, I actually enjoy being in some cosy spaces, provided the other sensory elements are pleasant. However, lifts in public spaces usually contain myriad smells that gather and stew inside, layer upon layer deposited by each new transient occupant. Thankfully, the journey was not a long one, and I was greeted at the landing when the lift door opened. The researcher showed me into the laboratory, chatting away in a most friendly manner. She held open the irst door, and it groaned in mid-tonal jaggedness. I managed to not register the exact pitches, determined to focus on her verbal chatter. A smell of damp and rot, however, rose from the loor carpets in forceful affrontation. I placed Lucy’s mat in a corner, and told her to settle. She looked uncomfortable – she is my sensory-alert dog, after all – but she complied. It was a wet winter’s day, I felt cold, and the researcher switched on a tiny electric heater for me. As it rotated unsteadily on its cheap plastic axis, it grunted and cackled. The mix of damp in the wider atmosphere and the directed drafts of dry air from the heater began to trigger headache and pain in my respiratory passageways.

The cacophonic counterpoint of sensory distress continued.

74 I am moving between the realm of past and present, the vivacious alacrity and the desperate dismay still a living vocal entity in my memory. It was a very long questionnaire. Tick, tick, tick the boxes. More listening to verbal words. Poco a poco – little by little – the semantic meanings become too dificult to register. I think I am still understanding the gist of it, but truly, I know I have lost the battle for iner detail. The pain mounts, I do not know from where, but it is at this point dancing around my head, like monkeys ighting over a piece of bread tossed carelessly by gawking human tourists. I am illing in the form, at irst carefully, but very soon, just fast and furiously because my senses are beginning to tell me that it is imperative to leave the room. Then we move to the computer screen. It is an old, stain and grime encrusted tungsten-tubed box. The screen lickers alarmingly, but the researcher seems oblivious. The lights above are screaming, and still the researcher takes no notice. She afixes onto various parts of my skin little electric sensors, for data gathering – something about heart rate and whatnot. I felt myself slipping into illucidity. My body was there, my trained responses intact, I knew I just had to continue with this performance of normalcy, because social compliance has been so deeply and forefully ingrained into my consciousness. Then began the numerous tests on the computer. Poorly drawn green and blue stick igures (which I am told ought to represent human beings) appear on the lickering screen, while the light from the window relects against the screen obscuring some parts. Then a few short video clips appear, and I notice with a wry grimace the vintage style of their clothes, the grainy texture of the images, all probably very old clips from the 1970s or 1980s. I am supposed to make judgments about what they are trying to convey, and about my ‘feelings’ at the time. I struggle bravely onwards.

The minutes turn into hours. Tick, tock, tick, tock. Lucy gets up from her mat, she is doing her job as my sensory alert dog. She is telling me to leave this terrifyingly oppresive space. She is telling me that I am verging on meltdown and I need to perform some form of Self-intervention to interrupt the process. However, the tests are not completed yet. No. I have to stay. I am sorry, Lucy. I feel the rippling vibrations emanating from her being, they are expanding, getting louder and louder, poco a poco.

75 I know she is becoming extremely anxious for me, and perhaps even for herself. The door of the toilet in the next room utters a long, shrill and slightly warped C-sharp every few minutes, announcing the arrivals and exits of perusers. That dreadful little oscillating heater is droning a low, somewhat irritatingly wobbly tritone of E lat and A – scratching, bumping, teetering as it turns. The room becomes too warm, the smell from the carpet begins to reach beyond olfactory channels and permeats my skin, wrapping around my eyes, and I taste it in my tongue as I exhale. Empathy? What is empathy? Oh, yes, I am here as a test subject in some study about empathy? The space between my eyes contract into a tiny tight earwig. I do not remember anymore what I am instructed to do. I just click at the buttons before me while the poorly drawn stick caricatures perform their grisly contortions.

Finally, I am informed that I have come to the end of the ordeal. The sensors are removed and I am allowed to leave. I literally force polite social words out of my mouth, my tongue and lips felt soaked in a sour yellowish mire, swollen and heavy with air-borne ilth such that they detach from my conscious sense of belonging in the body. I think I thanked the researcher, I must have, though I cannot be certain, and left. Lucy was most relieved too. However, it was not yet the end of the sensory nightmare for me. We had to make out way back to our lodgings, but that is another story, another mini-chapter in the ongoing never ending saga of life with autistic hypersensitivity, set in a world that seems so lacking in sensory awareness.

A couple of days later, after my brain had recouped some of its lost verbality, I wrote an email to the researcher, simply informing her that I felt the session was overly long, the physical space was inclement, and the data she was gathering would be compromised, because she failed to take into account the sensory acuities and possible integration challenges of her subjects. Her reply came about three weeks later. “Obviously being a PhD student I don't have a lot of control over the lab and I share it with many other people.” She signed off with, “I have passed on this

76 information to my supervisor.”101 I was unsure what to make of it then, and I remain somewhat nonplussed and perplexed even now.

Some months afterwards, I noticed that the researcher had presented a paper at a supposedly well respected autism conference, and later, an article on the same subject appeared in a journal. I note the claims made and realise that she had already predicted the outcome during her conversation with me, that is, at the beginning of the test session when my mind was still able to coherently register spoken chatter.

The experience was disturbing on more than just a personal level. I wondered about the many other autistic participants in this study, how they managed to cope, and whether I was the only one who detailed the sensory challenges. It would not be surprising if nobody else brought the issue to the foreground. The study asked for “high functioning” autistic volunteers. Autists, especially those living and functioning in normative settings such as this, would have by now been ‘programmed,’ either casually or systematically via therapies like ABA (Applied Behavioural Analysis) to ‘de-sensitise’ and not react in ways that may cause offense or alarm to the general populace. The reality for many autists is simply that of deliberate self-suppression, and the effort, whether conscious or subconscious, can often be so considerable that the person ixates upon getting through the task at hand in order to escape the overloading situation. Perhaps the majority of autists participating in such laboratory tests may not even be consciously aware that their sensory dissonances would affect the study. In addition, since vocalising the facts of autistic hyper-reality is frowned upon in the wider social context, there would be absolutely no incentive to speak out. Viewed from this perspective, the autist exists as the subaltern acculturated to neurotypical colonial dominion: innate identity is suppressed, and deemed unworthy of notice or afirmation.

Why is the voice of lived reality being deliberately silenced against the enacted façade of ‘superior’ scientiic knowledge? What is the purpose of studying a human subject if

101 Quoted verbatim without added punctuations. 77 the researcher does not take time and make sincere efforts to listen to and consider seriously the importance of personal insights from the subject of study? The unfortunate irony of the situation is that if the articulations of autistic persons were better heeded, more accurate data would be gleaned about the nature of the so-called ‘social impairments,’ which have puzzled researchers. Research needs to place greater focus on extant features in the context of comprehending autistic embodiment, examining autism from an organic perspective, instead of persistently looking at aetiological irregularities from a biased, non-autistic viewpoint with the aim to repair what is essentially viewed as broken.

Sensory atypicality may be extremely challenging, however, the ability to perceive outside conventional infrastructures deinitely has many powerful beneits. Ignoring this key functional dimension, and trying to counteract its cogency is not only damaging to the autistic individual, but also deprives the wider society of potentially valuable reciprocity.

Strange conversations

One may question the importance placed on sensory atypicality where it comes to the autistic experiential dimension. After all, sensory divergence is not the domain of autism alone. However, probing deeper into the autism-speciic studies and personal anecdotes about aspects of sensory idiosyncrasy when combined with autistic cognition and essential differences in interactive and communicative proclivities, there seems to appear consistently a crucial, organic contrast between the way the non-autistic person with hypersensitivity processes the world and the manner in which the autist interacts. The social world at large emphasises the centrality of human-to-human interactivity: normative social behaviour remains the central point, and the enjoyment of social activation is an overarching goal. By contrast, autistic

78 sensory-focus appears to concentrate around encompassing connections with and between the animate and inanimate: that is, autists demonstrate a predilection for interconnectivity that is neither conined to nor deined by the human realm.

“My irst comfortable means of communicating came from that. It had to do with the way I interacted with and arranged objects. It could be anything from tree bark to a book.

Objects have always been alive to me, and my interaction with them has always felt like communication. Weirdly enough, this has inspired anger in other people. And an intense, condescending need to try to teach me that the whole world is dead and I’m an idiot for thinking I can communicate with things. Someone once said to me, “The way water responds to you is the laws of physics, not communication.” I ignored him, but I wanted to ask how exactly those two things were different. I seem to come with an entirely different set of assumptions about the world than most people do.” – Amanda Baggs102

The human to animal dynamic is another common feature in autism. Temple Grandin has documented her connection with animals in great detail and attributes this afinity to her hypersenses and the ability to identify, empathise with and form associations while operating chiely in the senses.103 Dawn Prince’s bond with the primates that she has studied is threaded cogently through her compelling narrative, “Songs of the Gorilla Nation.”104 In a powerful interview, Dawn Prince-Hughes

102 Baggs, “Plants.”

103 Temple Grandin, “Thinking the Way Animals Do: Unique insights from a person with a singular understanding,” Western Horseman (1997): 140-147.

104 Dawn Prince-Hughes, “Songs of the Gorilla Nation: My Journey through Autism,” (University of Michigan, Three Rivers Press, 2005) 79 described the moment when she irst encountered the gorillas with whom she would eventually spend many years as an anthropologist:

“But then, when I turned the corner and saw the gorillas, I just sat there. I just sat there that day. And I sat there for hours, and I just watched them. And there was just this epiphany, this lood of identiication where I thought, these are people, and more importantly, these are people that understand me, and they're people that I am going to understand for the irst time in my life. I'm guessing that's what most people feel like with each other - most human beings feel like with each other. But I hadn't felt that before. It was just amazing. They didn't look me right in the eye for about an hour and a half. They very tenderly waited and kind of felt where I was, eventually glancing over at me really quickly and then putting their heads down again. It was just a very slow-moving, tender social interaction. It's so much different.” – Dawn Prince-Hughes105

Like Temple Grandin and many other autists who have formed intimate connections with animals, Prince-Hughes had this to say about the role of the gorillas in her personal development as a human:

“Yes, the gorillas gave me my humanity.” – Dawn Prince- Hughes106

105 Dawn Prince-Hughes, “Through the Looking Glass,” February 27, 2015, accessed 6 March 2016, http://www.npr.org/2015/02/27/389489102/through-the-looking-glass .

106 Dawn Prince-Hughes, interview, “Gorillas taught me to be human,” Outlook, Aug 27, 2013, BBC World Service, accessed 6 March 2016, http://www.bbc.co.uk/programmes/p01fdtk4 80 My own experience with animals is similar. As a child, I always felt more emotionally and sensorially connected with animals than with humans. The best memories of my childhood was the part illed with vivid and dynamic interaction with the elements and with the animals that inhabited my home. I collected tadpoles in bottles and glass tanks, avidly watching them grow and transform, documenting the process. There were lizard eggs that I found in the garden and tried to incubate under my bed, sometimes successfully; ducks and chicken in the backyard; and a very special bunny called Floppy who lived in a box in my bedroom. My favourite animal is the dog, though I never really had my own special canine companion until recently, when Lucy entered my life.

81 Listening to Lucy – an intimate narrative

terrestrial being emanating warm vanilla listening susurrus angel’s breath resting rise and fall majestic breast wingless grounded without estate precipitate enunciate wordless depths here now with me but too brief a blessing (Ode to Lucy – Dawn-joy Leong 2014)107

My canine child is unwell. I am straining my senses to listen. I am listening to Lucy.

107 Dawn-joy Leong, “Ode to Lucy,” Bunnyhopscotch, blog post, April 19, 2014, accessed April 11, 2016, https://bunnyhopscotch.wordpress.com/2014/04/19/ode-to-lucy/ 82 She does not speak the human libretto. Hers is a language of the senses and body. Similar to my intrinsic autistic sense, yet very different: a parallel embodiment to my parallelism. An ironic parody of the autistic-neurotypical interplay: Lucy seems to grasp my nuances far more readily, more eagerly, and with more determined application, than I do hers. As my assistance dog, she is able to sense when I am sensorially overwhelmed and approaching sensory-anxiety overload, and will communicate that information to me, so that I may take practical steps to mitigate the situation and prevent myself from a meltdown. In this respect, Lucy appears to be much more aware of my world than I am of hers, displaying a deeper ability to empathise with me than I am capable of for her. Is this because she works far harder to fathom my world, than I do hers, utilising her superior canine senses to soak up the nuances surrounding my existence whereas I am mired inside my own Business of Otherness? Perhaps the answer lies in an interwoven combination of both, or far deeper reason than I can grasp in my limited human mentality.

I am listening to Lucy.

Her canine realm is hard for me to understand, because she does not speak the worded semantic language of humans. Yet, empathy is an endeavour after all – a labour of will, commitment and, in some cases, an undertaking of deep resonance, a kind of intense connectivity that humans often refer to as “love.”

“Tell me where it hurts, my love!” I utter in hapless human babble, fully aware that she is unable to reply to my enunciation of gibberish. How much does she understand of my wordsome expressions? Scientists say that dogs do grasp a limited vocabulary of human words.108 Yet, I wonder, how exactly do they process it all? Ah, but it is not my concern today to muse overly long, hovering ignorantly around the science. Right this very moment, all I want is to soothe my canine child.

108 Julie Hecht, “Do dogs understand our words?” The Bark, December 21, 2012, accessed November 15, 2015, http://thebark.com/content/do-dogs-understand-our-words 83 Pressed against her length - human skin against warm canine be-furred body – I inhale her sensory messages through tactile, olfactory, visual, aural senses with as much profundity as I am able to muster. I watch her with growing concern, she is quivering with tiny imperceptible spasms of muscular contractions, drifting in and out of slumber.

I am listening to Lucy.

Her breathing – rhythmic low, the sound of air being inhaled and exhaled – seems different. My ears tingle with disquiet, my heart beats harder, and a small nebulous cloud of distress forms just beneath my diaphragm. As if on cue, Lucy’s ribcage moves up and down with every breath, its gestures seem laboured. She stirs, shifts her body and places her head upon my lap. I stroke her, gently massaging soft silken velvet ears. A small groan emerges. After awhile, she moves again, her head now on the bed and pressing against me, an indication that she has had enough.

My senses so inferior, gyrating fears, I know something is not right, yet, I cannot discern clearly enough through the thick smog. I know all is not well, but I am unable to translate into wordedness what little my senses tell. Nobody can help us – who is able to understand our tapestry? We are two, alone together inside our shared cocoon, speaking unspeaking, a strange foxtrot.

84 Parallel embodiments - in propria persona

Notes for the Worded Other:

This is not a fairy story about ‘anthropomorphic love’. Lucy is a Greyhound. A Greyhound is a dog. To me, Lucy Greyhound is a very special kind of dog, but a dog, nevertheless. I have no fanciful emotional urges to create a humanised caricature out of Lucy. She is not a four-legged human with a fur coat, she is a dog that lives within the conines of a human ecology, dependent solely on human care, consideration and conference for her survival and wellbeing. In other words, she is living in my world, a vulnerable sentient creature of Otherness, whose existence is solely reliant on my providence as her human companion. Hence, where she is unable to make qualiied decisions, it falls upon my shoulders to do so. I feed her the best diet that I can afford, taking into account her individual needs. I see it as my duty to make sure she gets enough exercise, and provide proper medical care. When it is cold, I put warm clothing over her, and when it is hot, I sponge her and keep her in a cool, dry place – simply because the Greyhound has very little body fat, and she can suffer easily from extremes of temperature. Of course, apart from basic health and safety requirements, I also make sure that her clothing and accessories meet my own personal standards for beauty. The aesthetic choices are purely my own, to satisfy my need and not hers. I am very clear about the difference between the two. I call her my “baby girl” and my “child,” but that is because the human worded language is too limited, and lacks the depth and expanse to describe the interspecies relational bond that I share with Lucy. In my mindscape, she is a dog, and she also has her own unique Beingness.

Lucy is a parallel embodiment: in propria persona. I would never wish for her to take on a human personiication. That latter concept, though widely popular, especially among mainstream social-focused society, is actually most frightening to me. My connection with Lucy is all the more treasured because of our inter-species interdependence, and I am very certain she is able to discern at the same time that I am not a dog. I do not consider myself, by virtue of being human – nor because I am

85 her caregiver in human domains where she is unable to effectively contribute independently – in any way ‘superior’ to her embodiment. Lucy contributes to my wellbeing in ways no human person, not even myself, is able to do. She has a respectable position of worth all of her own: and this is not because she has been ‘trained’ by humans to be my assistance animal, but merely because of our symbiotic relationship. The richness of our life together lies in the crucial recognition of parallel embodiment, as well as our shared appreciation of the material and elemental world around us – our endeavour of empathy. My perception of our symbiosis may be summed up in the following passage taken from a post in my sensory blog:

“It can be extremely frightening, not understanding the language of the Other. A parallel embodied creature, yet her worth cannot be calculated in human terms. The universe knows, and its measurement remains a mystery. Benighted human beast, contemptible nescient caretaker of such magniicence… I am ashamed… yet… she never gives up on trying to communicate with me.

Lucy has taught me more about my own autism than any words gathered in careful order on pages ever could. She reveals the Self-Other conundrum in ways so tenderly beautiful, no ponderous philosophical text would measure up to.” – Dawn-joy Leong.109

My narrative inds sympathetic resonance in Dawn Prince-Hughes statement about her bond with the gorillas she studies:

“You know it’s funny because I’ve been accused of anthropomorphising gorillas, but I think in fact what I have

109 Dawn-joy Leong, “Wordless Enunciation,” Bunnyhopscotch, blog post, April 19, 2014, accessed April 11, 2016, https://bunnyhopscotch.wordpress.com/2016/02/13/wordless-enunciation/. 86 done is I have gorilla-morphised human beings. I didn’t see all these great traits in human beings before I saw them in gorillas. When I look at gorillas, I see people. When I look at human beings, it’s a little daunting.” – Dawn Prince-Hughes110

110 Dawn Prince-Hughes, interview, “Gorillas taught me to be human,” Outlook, Aug 27, 2013, BBC World Service, accessed 6 March 2016, http://www.bbc.co.uk/programmes/p01fdtk4 87 Empathy through sensorial resonance

I have found myself having to explain to my social-focused friends my own connectivity with the seemingly inanimate or ‘non-sentient’ elements. To them, my habit of apologising to the table when I bump against it, becoming ‘inordinately’ upset when a part of a valued object is broken or destroyed, and muttering to the tomato plant seem either overly sentimental or simply irrational. Perhaps their assessment of my predilections stems from their own human-social-centric priorities. What most do not seem to grasp, even after lengthy explanation, is the difference in fundamental modality and operational approach. The human-to-human bond is neither all encompassing nor paramount to my autistic existential realm. I am not averse to the human afiliation per se, I have deep emotional feelings and strong loyalties towards the humans in my life, I am capable of gratitude for the grace offered to me by humans, but the domain that we inhabit together is not the only one that plays a crucial role in my Embodiment of Self.

When operating in the senses, there is no absolute semantic speciicity conveying ideas from one to another. Wordful interaction seems unnecessary for mutual empathy. Not sensing the exact same sensations, yet, fully conscious of the richness and fullness, this concrete ambiguity is enough for an empathic attachment, that is, in merely knowing the Other’s ‘state of sensation.’ After all, even in the heavily worded realm of communication, the degree of empathic understanding is not absolute, but rather more an act of sonorous guesswork, with worded language acting as a facilitation channel for thoughts and feelings. Just being aware of possessing a vibrating consciousness of the other’s consciousness, understanding within one’s own domain the frameworks, draws Spaces of Mind nearer and nearer, until there begins to be overlaps and intersections of harmonic soundings.

Much has been done to instil and often forcibly coerce the autist into the realm of the typical. Established programmes and support therapies are aimed at helping autistic persons to adjust to and assimilate within normative systems, with varying degree of

88 ‘success.’ Yet, there are no structured schemes offering or encouraging the non- autistic community a systematic approach towards comprehension and apprehension of the unique autistic domains in an equally reciprocal way. Interested and concerned parties – parents of autists, relatives, friends, and even caring professionals – have had to ind their own ways across the quagmire of conlicting scientiic information, sieving through dubious and even dangerous advice from pseudoscience and nefarious proiteers jumping on the autism-bandwagon.111 How may the sensory realm of autism, so critical to autistic experience, be transmuted in such a way that may engender any degree of empathic sonority?

Do not despair

The concept of an intrinsic sensory mental state, “Space of Mind,” and an alternative system of empathising, is not anti-speech. It merely eschews the prevalent veneration of the spoken word, while at the same time offering a poignant glimpse into an alternative system of sensory-focused relatedness. In a beautifully poetic and tender video, “Do Not Despair,”112 autistic advocate Sparrow Rose Jones reaches out to the neuro-majority with a blend of autistic elemental, sensory-resonant empathy and deliberate consciousness of the non-autistic need for verbal reassurance – the kind of empathic offering that autists often wish the normative world would offer – while gently and reassuringly presenting the autistic paradigm.

111 Established science offers conflicting perspectives on autism, which can be confusing to the lay person. Pseudoscience makes assertions that are potentially harmful. Until recently, Autism Speaks was a proponent against vaccination. Generation Rescue promotes interventions like hyperbaric chambers, chelation and essential oils as ‘cures’ for autism, they are also anti-vaccine.

112 Sparrow Rose Jone, “Do Not Despair,” Unstrange Mind blog, 7 February 2014, accessed 29 March 2016. https://unstrangemind.wordpress.com/2014/02/07/do-not-despair/ 89 “If I do not look into your eyes, do not despair. I do not look into the sun, but I love it, And I love you. If I do not say your name, do not despair. I do not name each minute of each hour, but I love this time I live, And I love you. If I do not hold you in my arms, do not despair. I do not grasp onto the wind and the rain, or to the snow, or to the towering mountaintops, But I love all of these, and I love you. If I do not show you love in the language you are accustomed to hearing, Do not despair. I speak my love to you constantly in my language And I do love you.”

(Do Not Despair – Sparrow Rose Jones. Reproduced in entirety with permission from author.)

It may be dificult for the autist to describe this Space of Mind in words, yet semantic language is the most commonly acceptable channel through which the autist may establish contact with the social mentality of the neurotypical realm. As an autistic researcher, I am nevertheless obliged to abide by the prevailing frameworks and protocols put in place for acceptable propagation of my research indings and ideas. However, the available linguistic grammatical systems are, to me, not only awkward and circumlocutory, but simply lacking in sensory cogency to accurately convey the opulence of the autistic mental and elemental state. This is where a more immediately tangible and accessible approach is essential: I call upon art as the agency.

90 The Autism Self Advocacy Network (ASAN) has adopted the motto, “Nothing About Us Without Us,” from the Latin “nihil de nobis, sine nobis”. At the moment, the climate of autism research, teaching and service provision seems to operate in the opposite direction: Everything About Us Without Us. This is slowly changing, however, with more and more inclusion and collaboration with autistic researchers and practitioners. Here in UNSW, I belong to a research group made up of members from different disciplines - interdisciplinary artists, psychologists and educators - with a common vision to effect positive change, beginning with our own research. It is interesting to note that this initiative originated within UNSW Art & Design, with artists leading the way ahead as visionaries.

I believe that the discipline and practice of art in all its incarnations is crucial to innovative and empathic revolution. In order to understand autism better, one has to empathise with the autistic embodiment. Reciprocal empathy may be facilitated through artistic thinking and expression, bypassing the need for excessive wordedness. In the unfolding chapters, the art of agency and agency of art, as demonstrated in my artistic practice of employing approaches native to autistic functionality – that is, hyper acute, multi-sensorial, elemental connectivity – will be discussed and examined in connection with addressing this howling void in the ield of autism studies.

“Artistry is intuition, and intuition dwells not only within theoretical contemplation, but is at the same time embedded in our ingertips, inspiring the rhythm of our breath, communicating through the sensation of dust particles upon our skin, or the sound and feel of water running from the tap. To us, all creative energy is multi-sensorial.” – Dawn-joy Leong.113

113 Dawn-joy Leong, “Thinking through the Body – a Multimodal Approach from Autism,” (paper presented at The International Conference for Research Creativity: Praxis, Baptist University of Hong Kong, Hong Kong, 21-23 November 2012). 91 92 4. OPULENT SEA – disarming the myth of barrenness Contrapuntal conversations

Scheherazade’s Sea Intangible depths Reaching for light Dark secrets kept Water enguling Fold upon fold Stars relecting Sands of gold Blue, the colour Of deep silent pain Ripping apart my ocean With each drop of rain Mistaken for madness Love’s plaintive sighs Red crimson tide Bleeding goodbye Wide, open skies Myriad hues Colours of sorrow Sweet morning dew Scheherazade’s sea Intangible depths Yet, perhaps, for Bluebeard “Adieu”, is all that’s left (Scheherazade’s Sea – Dawn-joy Leong, 2009)114

114 Dawn-joy Leong, Scheherazade’s Sea: A Multi-media, Multisensory Installation and Performance, (M.Phil thesis, Hong Kong University, 2010). 93 From the viewpoint of autistic sensory-cognitive parameters, the activity of normative society appears to be a frenetic luttering in concentric circles around the proclaimed ‘Theory of Mind,’ which autistics are said to lack.115 Within this milieu, social-focused day to day interactivity dominates the foreground of consciousness with orchestrations of subtle eye signals, facial contortions, linguistic innuendos, vocal inlections, written and unwritten semantics, spoken and unspoken luid rules of etiquette, ego-centric lirtations and conspicuous affectations of social-emotional exchange – physical hugs, kisses, handshakes, and verbal utterings that may or may not contain concrete meaning for the autist. Neuroscientists have declared as ‘impaired’ those who fail to grasp the ‘machinations of deceit’ behind the Sally-Anne test, but to the autist, the relational world of the neuro-majority simply represents a confusing social bureaucracy lacking in logical order and consistency.

Meanwhile, inside a parallel domain, another conversation is unfolding: one in which chromatic tonalities, harmonic reverberations, whimsical meanderings, rhythmic iterations and gentle ebb-low of visual-tactile-olfactory-auditory counterpoint take precedence. The autistic mind seeks out new sensations in the form of discovery, forging novel pathways of knowing the world, and connecting with material elements, animate and inanimate, through seeing, hearing, smelling, touching, tasting, physically traversing and mentally ruminating. This intricate diegesis hums with potent eloquence not necessarily semantic, and as a consequence, it remains largely unheard and even at times its existence and validity strongly contested by the prevalent social collective, whose interfacing is heavily entrenched and dependent upon the worded morphology. Predictability, regularity, rational sequence of cause and effect, and tangible engagement are benevolent anchors for the luency of this conversation taking place within a physically palpable sentient domain, ‘invisible’ only because of its distrust of verbal didactic.

115 The most (in)famous claim in the field of autism studies remains the assertion that autists are impaired because they are unable to grasp the intricacies of normative Theory of Mind, and hence, it is inferred that autists lack empathic ability; Simon Baron-Cohen, Alan M. Leslie and Uta Frith, “Does the Autistic Child have a “Theory of Mind”?” Cognition, 21 (1985)37-46. 94 Departing Bluebeard’s Castle

In this chapter, my material practice shall be introduced as it manifests my model of autism as a Parallel Embodiment, revealing the concrete corporeal-mental expanse of Space of Mind and the autistic empathic dimension as an abundant, thriving organic ecology. Materialising this extrapolation of contemporaneous colloquy forms the driving force of my artistic praxis. Emanating from this paradigm is the assertion that intrinsic autistic modality employs a different ‘language,’ or mode of communication, within its own native semiotics and predilection for connectivity. This is at the moment in stark contrast to the dominant archetype for autism, which looks at autism from the non-autistic premise and presumes incompetence and dysfunction as a fundamental principle. Although the situation is slowly changing, the trope of impairment nevertheless dominates and reverberates strongly throughout current autism-related discourse.

In 2002, Bryna Siegel, professor of psychology at the University of California, San Francisco, was quoted as saying this about autistics:

"It's as if they do not understand or are missing a core aspect of what it is to be human; to be and do like others and absorb their values."… "Their worlds are more barren, their social world is very distorted, and they come out of their world not when you want them to, but when they want to." – Bryna Siegel116

A few years later, autism rights advocate and non-speaking autist, Amanda Baggs, uploaded her video, “In My Language,” in which she describes the non-speaking world

116 Mike Falcon and Stephen A. Shoop, ‘Stars 'CAN-do' about defeating autism,’ USA Today, accessed April 16, 2016, http://usatoday30.usatoday.com/news/health/spotlight/2002/04/10-autism.htm 95 of autism as a rich interplay of elemental-material correspondence.117 Baggs’ powerful video was dedicated to Ashley X (pseudonym), a young girl born with a severe brain impairment that left her unable to move any part of her body on her own, and although mentally alert and responsive to her surroundings, she had to be tube-fed and needed round-the-clock care for the rest of her life. Ashley developed precocious puberty at the age of six, and her parents decided to subject her to a hysterectomy and removal of emergent breast buds to prevent menstruation and growth of the breasts. She also had hormone therapy to close her growth plates. All these procedures are part of a process known as “growth attenuation,” which is a highly controversial treatment to arrest the natural growth of a non-ambulatory person with such severe cognitive disabilities that there is deemed no hope for other forms of mitigations. Proponents of this treatment argue that arresting the growth of the person makes it easier for the person to be cared for and thus improves quality of life.

The video shows Baggs engaging with water, lapping her hands in stimming actions, and humming, while ‘speaking’ through a software programme that turns typed words into audible speech. This video, which has since gone viral across the internet, earning Baggs both admirers and detractors, explains succinctly the nature of the parallel conversation taking place underneath, around, across and above that of normative social-speak.

“…my language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment. Reacting physically to all parts of my surroundings.” “Far from being purposeless, the way that I move is an ongoing response to what is around me.” – Amanda Baggs118

117 Mel Baggs, “In My Language,”Ballastexistenz, blog post, January 15, 2007, accessed April 16, 2016, https://ballastexistenz.wordpress.com/2007/01/15/in-my-language/ (Formerly Amanda Baggs, she has changed her name on her blog site to Mel.)

118 SilentMiaow, “In My Language,” YouTube, Jan 14, 2007, accessed January 10, 2016, https://youtu.be/ JnylM1hI2jc. 96 In her blog post, Baggs also dedicates the bitingly poignant video as a response to Bryna Siegel, the psychologist whose view is that autism is a bleak, antithetical existence to what is deemed as acceptable human existence, and autists are socially deicient beings who refuse to emerge when the normative world wants them to, but “only when they want to.”119

“Ironically the way that I move when responding to everything around me is described as 'being in a world of my own' whereas if I interact with a much more limited set of responses and only react to a much more limited part of my surroundings people claim that I am 'opening up to true interaction with the world'. They judge my existence, awareness, and personhood on which of a tiny and limited part of the world I appear to be reacting to.” – Amanda Baggs120

Coincidentally, Baggs’ video emerged in 2007, the same year that my own journey in autism research and artistic practice applications began when I embarked on my M.Phil in music composition and interdisciplinary practice at the University of Hong Kong. Baggs’ video was, however, at the time, unknown to me, as I had not yet become privy to the world of autism self-advocacy, and had only the deicits-focused model of psychiatry to instruct and employ. Nevertheless, it has always been one of my artistic goals to offer concrete and realistic relections of the sensory-cognitive world of autism, not only as an expressive articulation of my internal neurological province, nor merely as an exercise in education or information, but rather to draw the Other into a palpable experiential realm of Self.

My poem quoted at the beginning of Chapter 4 is from a segment in Scheherazade’s Sea, 2010, in which Scheherazade is juxtaposed with another literary character,

119 Falcon and Shoop, “Stars ‘CAN-do’”.

120 SilentMiaow, “In My Language.” 97 Bluebeard, the violent aristocrat from a French folktale who imprisoned and murdered his wives. In my story, Scheherazade (the autist), half in love with and bound to Bluebeard in a complex and twisted web of psychological manipulation and oppression, inally extricates herself from Bluebeard’s stranglehold. To the autist- Scheherazade, Bluebeard represents the igure of neuro-colonial imposition upon native autistic Being. A driving force behind my artistic practice is the vocalisation of Scheherazade’s liberation from Bluebeard, expressed through the intrinsic autistic sensory-based vernacular.

Far from being the kind of “barren” wasteland described by Bryna Siegel, Scheherazade’s Sea, 2010 elucidated a world teeming with narratives, multi-layered sensory confrontations, and vibrant emotional vigour. Through Scheherazade’s Sea, 2010, I was enunciating, “My world is not infertile, why don’t you step inside with me?” Similar to Baggs’ video, my multi-medium, multi-sensorial construction represented one autistic individual’s contribution to the growing body of personal narratives and innovative scientiic studies by autistics about autism – a trenchant riposte to the ‘Establishment,’ denouncing and discrediting the sinister de-humanising viewpoints of neuro-colonial tyranny. Scheherazade’s Sea, 2010 established the foundational platform for my on-going and current artistic practice.

The autist as artist and artist as autist

The idea of creating “autistic art” seems too clichéd. As an autistic person and a practising artist, I prefer to avoid such arbitrary framing. Scheherazade’s Sea 2010 was never intended to it into such a mold. What the seminal work did, however, was to help crystallise key creative concepts and approaches based on intrinsic hallmarks of autistic sensory-cognitive functionality in a broader aspect as well as on a speciic and intimate level.

98 My paper, “Art in a Hidden World – creative process and hidden anomaly,”121 was published in 2012, at the beginning of my PhD candidature. In this paper, I articulated the aspects of my creative process that were inextricably bound to the ways I comprehended and communicated with the world through unique sensory and cognitive pathways, using examples from Scheherazade’s Sea 2010. This work was intensely eclectic, incorporating multiple disciplinary practices including visual and installation art, composed music, vocalisation and instrumental performance, video and soundscape, theatrical narrative, poetry and interactive multi-sensorial engagement. My artistic approaches, creative decisions and operational modes were inluenced by deeply entrenched sensorial modalities of autism, and have continued to play key roles in my creative pedagogy. For example, my detail-focused attention manifests as meticulous attention to minutiae in the array of deliberately small installations; avid sensory engagement and connectivity is apparent in the richness of texture, colour, eclectic use of material and design of the set; and working in relative isolation from human social interaction until the inal staging of the work helped me to connect better with the sensorial-elemental dimension, which facilitated creativity within a less stress inducing interruptive environment. The elucidation of these components formed a basic springboard for further research and artistic practice.

In November 2012, I participated in a conference, workshop and exhibition event at the Hong Kong Baptist University.122 My paper, “Thinking through the Body – a multimodal perspective from autism,”123 enunciated a further developed artistic approach from innate autistic sensory-cognitive functioning (from the previous “Art in a Hidden World”). In essence, the paper, “Thinking through the Body,” was an exercise in framing experiential fragments, turning inside out to invite the outside in.

121 Dawn-joy Leong, “Art in a Hidden World – creative process and hidden anomaly,” The International Journal of the Arts in Society: Annual Review, Vol.7, (2013).

122 Dawn-joy Leong, “Thinking through the Body – a Multimodal Approach from Autism,” (paper presented at The International Conference for Research Creativity: Praxis, Baptist University of Hong Kong, Hong Kong, 21-23 November 2012).

123 Ibid., ‘Appendix A’; The conference organisers failed to publish the papers for reasons undisclosed. Copyrights belong to the author and I have attached the full paper in this thesis. 99 It was in this paper that I began to formulate speciic concepts of elemental symbiosis and sensorial approaches to interactive communication based on intimate functioning predilections, and how these may be concretised via artistic praxis.

A ‘wearable’ prototype, developed during the workshop, attempted to materially manifest some of the principles articulated in the paper. The Haptic HugShrug, shown in Haptic Interface, 2012, is a calming blanket offering deep pressure stimulation. Following from here, I will also outline how my interactive installation space “Haptic Autistry 2012” materialises those principles.

100 The Haptic HugShrug – deep consolation

Figure 8 Haptic HugShrug (original prototype) 2012, Haptic Interface Exhibition, Hong Kong. Material: Pure Merino Wool Top | Approximate dimensions: Length 1.5m x Width 1m x Thickness 4cm | Weight: approximately 3.5kg. (Photo: Dr. Yip Chi-Lap, used with permission)

The Haptic HugShrug, 2012 prototype was developed during the Haptic Interface 2012 ten-day workshop, 10-20 November, which culminated in an exhibition from 20 November to 16 December 2012 at the Koo Ming Kown Gallery, the Baptist University of Hong Kong. The aim behind the workshop was to facilitate researchers and

101 practitioners from diverse backgrounds to come together and develop new ideas relating to the body with innovative use of materials provided. Thus, participants were encouraged to create ‘wearables’ utilising equipment and material provided by event sponsors.

While many individuals with Autism Spectrum Condition live with sensory anomalies, and are averse to human touch, we, just like everyone else, crave the sensation of warm and irm embrace. Studies have revealed that deep pressure haptic stimulation, especially that which enwraps, relaxes and calms panic symptoms and sensory alarm that are common features in autism and other sensory-cognitive idiosyncratic conditions (e.g. ADHD, PTSD etc).124 Temple Grandin developed the renowned “Squeeze Machine,” for this purpose. In her machine, the user is able to regulate the intensity of pressure by activating a lever. My “Haptic HugShrug” is a response to Grandin’s machine, but was created to deliberately eschew technology, and address sensory-sympathetic need at its most basic, primal level. Made from soft Merino wool top, using crochet technique, the shrug can be draped around the shoulder, ‘worn’ or used as a mini blanket or sensory mat to lie on. Its weight provides the sensation of deep pressure, while the softness and warmth of ine Merino wool serves as supportive comfort to the wearer, who is able to regulate the intensity of the ‘hug’ by pulling at the edges or wrapping it tighter.

The Haptic HugShrug emerged as a spontaneous response to the sensorial and social dissonance experienced, the awkwardness of the unfamiliar social environment into which I was immersed during the workshop, and a decisive inward act of empathy towards Self.

124 Blairs, S., Slater, S. and Hare, D. J. , “The clinical application of deep touch pressure with a man with autism presenting with severe anxiety and challenging behaviour,” British Journal of Learning Disabilities, 35 (2007): 214–220, accessed 29 March 2016, doi: 10.1111/j.1468-3156.2007.00452.x; Vandenberg N.L., “The use of a weighted vest to increase on-task behaviour in children with attention dificulties” American Journal of Occupational Therapy, 55 (2001): 621–8; Temple Grandin, “Calming Effects of Deep Touch Pressure in Patients with Autistic Disorder, College Students and Animals,” Journal of Child and Adolescent Psychopharmacology, 2(2009): 63-72, accessed 29 March 2016, doi: 10.1089/cap.1992.2.63. 102 Rubato – traversing Self empathy

Social interaction within normative frameworks is fraught for most autistic persons. The speciic responses may differ from person to person, and depending on the speciic circumstance, but the common factor is to operate in a non-native milieu. For me, I function better in social situations where I am able to perceive form, structure and purpose. It is like navigating a properly crafted stage set as an actor in a play: knowing where the table is, for example, helps tremendously when the script calls for standing next to it while delivering your lines, or being able to trust that the chair will not crumble from your weight when you are required to sit in it. It is extremely stressful for me to extemporise socially when there is no recognisable semblance of order.

The written programme for the workshop appeared well conceptualised and thorough, but in reality, its execution fell far short. One of the advertised features of the workshop was that participants were supposed to conduct mini sessions outlining our ields of practice to the rest of the group. My autistic mind approached this seriously, I had studiously studied the schedule and notes sent to me, and I was very much looking forward to its implementation and my participation. When it came to my turn, the organiser made an announcement the afternoon before to remind everyone of the event, but when I arrived prepared for the session half an hour early, the organiser was nowhere to be found. An hour after the session was scheduled to begin, the organiser sauntered into the room and began chatting with the other members, who were engaging in extended small talk around morning coffee, showing no indication that she was aware of the scheduled information session I was supposed to conduct. The schedule was printed and put up on the notice board at the back of the room, and it puzzled me that no one seemed to pay much attention to it. I am not certain why I never asked the organiser what had happened to this event, but no mention of its existence was made thereafter. It was as if my session had been 103 swallowed up by an invisible entity. Despite this rather eerily obfuscating atmosphere, my ego remained unshaken, though my senses were inlamed by the effort I had to make to prepare and present myself in the room. I had to endure the sensory horror of an hour’s bus and train journey, jostling and ighting the rush hour crowd in over- populated Hong Kong. By the time I arrived at the venue, I was teetering on the edge of sensory meltdown. I was therefore frustrated and vexed at the wasted exertion, and the subsequent added effort I needed to make to prevent myself from a meltdown. For the sake of sensorial equilibrium, I was happy to let the matter slip into obscurity, and quite happily scuttled off to work on my Haptic HugShrug prototype.

Figure 9 Pure Merino wool top – experimenting with touch, smell, texture and weight.

104 Figure 10 Elemental confabulation – responding to the material.

During the irst few days, I religiously presented myself at the workshop on time, determined to stay till the end, even when the programmes promised for the day failed to be delivered on numerous occasions, and there were lengthy time lapses in between, which I made full use of by engaging with my Haptic HugShrug in my little corner of the room. Throughout, the other participants seldom acknowledged my presence, and I felt especially alienated by those who seemed to have formed among themselves a central clique. The only person with whom I managed to share lengthy and meaningful conversation was a non-autistic artist with a physical disability. She conided that she felt similarly left out by the main group of people, but, like me, it did not particularly cause her any emotional grief, since she was not interested in excessive socialising outside the perimeters of work. Our conversations revolved around our research and practice, and our projects at hand.

Eventually, however, I became exceedingly overwhelmed by the assaultive sensory environment in the room and discouraged by the absence of organisational structure. Fluorescent lights overhead lickered and jabbed at my eyes like lashing knives, and the constant verbal chatter and jarring music scraped at my auditory senses, wearing me down. There were times when the social banter from the main group of people illed the physical space with what felt like large glutinous, viscoelastic sonic bubbles,

105 bouncing and loating around the room from person to person. I was an invisible, spectral spectator, trapped within the vortex of a sensorially assaultive drama with a tedious, uninteresting plot. It was dificult to concentrate on the task at hand, while immersed and conined within inclement space. After awhile, I began to suffer from fever and extreme fatigue, the environment in the workshop was not worth the onerous and sensorially triggering journey back and forth.

Consciously making a decision to acknowledge my own needs and make due accommodation for Self, I decided to bring my Haptic HugShrug prototype back to ‘home-base’ and complete it in peace, quiet and isolation. I gathered up the heavy balls of wool top in a large suitcase, and dragged the case through the long train and bus journey back to my temporary abode.

Rondo – structure, repetition and freedom of expression

Once back in ‘home base,’ I was able to concentrate without hindrance. I was staying at a friend’s apartment situated in an outlying island, apart from the hustle and bustle of the city. My friend was away on a work assignment and I had the entire space to myself. The isolation spelled tranquillity, and I became energised and refreshed from the simple process of inhaling and exhaling the ambient calm. I have always worked better in relative isolation, when I am able to disconnect with the extraneous (social- related incursions) and connect with the fundamental (palpable material) realms. For the remaining days, I established a new routine and structure, which provided the safe physical scaffolding I needed for my creative work. I could choose what I wanted to eat – the speciic textures and tastes in my food are important to my overall sensory balance – and the time at which to eat; I did not have to engage in superluous conversation; and there was no need to perform proprioceptively, that is, my hands, feet, arms, legs and body were not required to behave according to the dictates of normative social convention. I dissembled the piece that I had begun at the workshop space: my sensory rapport with the work in progress was stilted and awkward, the

106 tension of the crochet did not feel ‘right’ to my ingers, its rhythm was truncated, and it did not drape or hang on the body with the luidity that I wanted. The ambient setting in which any work of creative expression is brought into being greatly impacts its character and essence. In the solitude of my own clement space, I could connect with the wool – touch, stroke, smell, and listen to the resonance of its ibres – and link these associations and sensations with the rhythmic pulse of ‘making.’ The repetitive proprioceptive movements and the sound and texture of the wool running through my hands and wrists acted like a stylised form of stimming, while the growing weight of the piece provided comforting pressure against my body. In the workshop, time unfolded differently in space, I had to cope with multiple disturbances and anxieties, and it was impossible to immerse myself into any meaningful sensory conversations and elemental connectivities.

Figure 11 (Left) Reconnecting and reworking the Haptic HugShrug; (Right) Completed and ready to show.

At the end of the workshop week, I returned to the space with my inished prototype, and participated in the discussion about how to display the pieces and the printing

107 and mounting of the titles and descriptions. I submitted mine with the rest. At the exhibition opening, however, all the other titles and descriptions were neatly put up next to the prototypes, with the exception of mine, which was nowhere to be found. It inally surfaced after two days and several attempts to remind the organiser of this small oversight. I wondered afterwards if the omission had anything to do with my not being in the thick of socialising activity and therefore somehow missed out on some communication or other, which is not an unusual occurrence where autists are concerned.

Not all autists are averse to socialising. Some autistic individuals even claim to be extroverted, that is, they very much enjoy social interaction, although intrinsic socialising styles may nevertheless remain different from the normative.125 For me, there is always a high price in sensorial dissonance to pay where social interaction is concerned, and physical exhaustion is usually the exacting result, whether or not I have enjoyed the occasion. Therefore, although I am not averse to the social interface, my predilection for meaning and order take precedence. In the case of the Haptic Interface workshop, while I was happy that nobody spoke much to me at all, the obligatory social chit-chat at lunchtime was excruciating, not because I am a shy person, but merely because of the paucity of consequential content in the unavoidable verbal exchanges.

A self-intervention strategy I have had to devise is ‘re-structuring’ and establishing order when encountering unstable, chaotic conditions. I have found that it is possible to train my own mind to become more adept at processing luctuations and uncertainty, which is very useful during situations such as my experience in this workshop. Designing coping strategies within native frameworks is, from my personal experience, a far more eficacious and pleasant approach than employing forceful methods based on non-native paradigms. The autistic mind actively seeks and thrives

125 Nele Muyleert, “The Extrovert Aspie,” The Curly Hair Project LTD., August 5, 2014, accessed February 2, 2016, http://thegirlwiththecurlyhair.co.uk/blog/2014/08/05/extrovert-aspie/ 108 on regularity, predictability and logical systems,126 a phenomenon attributed to a highly systemising cognition.127 It would be excruciating to the autist to be subject to behavioural modiication methods that seek to deliberately break this proclivity in order to achieve normative expectations of lexibility or acquiescence in the face of what an autistic brain would classify as frightening pandemonium.

The Haptic HugShrug prototype evolved into two variations, which I exhibited in separate events in 2013 and 2014.

Haptic HugShrug version 2, 2013 @ Vivid Sydney

Figure 12 In 2013, the original prototype was reworked into a longer and narrower piece, and exhibited at the Vivid Sydney 2013 as part of a group pop-up exhibition. Haptic HugShrug v.2, Vivid Sydney 2013, pop-up exhibition. Material: Pure Merino Wool Top | Approximate dimensions: Length144cm x Width30cm x Thickness 6cm | Weight: 2kg

126 Patricia Howlin, Autism and Asperger Syndrome: preparing for adulthood, second edition, (London & New York: Routledge, 2004).

127 Simon Baron-Cohen, et al., "Talent in Autism: Hyper-Systemizing, Hyper-Attention to Detail and Sensory Hypersensitivity," Philosophical Transactions: Biological Sciences 364, no. 1522 (2009): 1377-383. 109 Haptic HugShrug version 3, 2015 @Sonata in Z

Figure 13 Three years later, the Haptic HugShrug was reworked a third time and included in “Sonata in Z 2015”. This piece (version 3) weighed 2kg and was created using the ‘arm-knitting’ technique, which produced a looser weave. This was one of Lucy’s favourite pieces, she loved to lie on it, snuggle her nose underneath, and rub her face in the soft, richness.

110 Haptic Autistry, 2012 – wading into reciprocity

My mini experimental space, Haptic Autistry, 2012, was a playful prelude to the subsequent experiments in immersive reciprocity, which I developed from 2012-2015.

Figure 14 Haptic Autistry, 2012, Haptic Interface, Koo Ming Kown Gallery, Baptist University of Hong Kong.

For Scheherazade’s Sea 2010, I was able to maintain adequate organisational control over the entire work, from conception and development to execution, as I was working mostly alone and had full authority over every aspect of the production. By contrast, the actualisation of Haptic Autistry, 2012 was executed largely spontaneously, in situ. The same organisers of the conference and workshop curated the Haptic Interface 2012 exhibition, of which my Haptic Autistry was a part. I was in Sydney prior to the event and unable to personally view the exhibition site before planning my exhibit. I made numerous requests for photographs and loor plans, but

111 did not receive any clear visual or written descriptions ahead of time. In fact, my space was only allocated to me a day after I had arrived.

Uncertainty and luctuations are extremely discordant to the autistic mind, and greatly hamper level and quality of function. Having to survive competently in an environment where social and organisational luidity tends to take precedence over precision and meticulous coordination presents a perpetual tension riddled challenge to the autist in search of order. To prepare, I had to create a tangible yet lexible system – for my own mental equilibrium as well as to address the task at hand. I created multiple ‘movable’ pieces that would it into any space, yet nevertheless still lend themselves to thematic cohesion. This is a method I employed in Scheherazade’s Sea, 2010, creating independent microcosmic entities which when combined formed a coherent whole. The approach is a response to my detail-focused perceptivity and fascination for minutiae.

The centrepiece was a silk, lace and organza bustier dress. In keeping with my preference for working with existing personal and ‘found’ objects, a practice established in Scheherazade’s Sea, 2010, the main installations derived from my personal collection of wearables. Although I had no idea where it would eventually be positioned, I designated this dress as the focal point in my exhibition, to be suspended from the ceiling. Attached to the satin lining of the dress were numerous safety pins of various sizes. The pins were whimsical indications of pain and discomfort, and the dress represented an intimate symbol of jarring dichotomies: normative values of beauty and adornment versus the stark reality of sensory dissonance. A pair of high- heeled shoes and matching clutch-sling handbag formed the secondary focuses. Originally made from white patent leather, I covered the external surfaces with burnt gold acrylic paint using a rough brush for textural effect. Shards of broken glass were embedded inside the shoes, another symbol of ironic sensory juxtaposition of agony and perceived beauty. Since I did not have a budget to transport my works to the venue, I planned my pieces according to how much I could carry in my suitcase. Other peripheral installation items were a small vintage suitcase, a hand knitted wool shawl

112 texturally embellished with assorted buttons, and a wide belt crocheted from hemp and rafia. I would have to improvise and acquire the rest of the material as soon as I was able to ascertain the space for my exhibit. Another important component of the space was the soundscape. Without knowing beforehand the speciic dimensions and features of my exhibition space, I made a basic, simple plan: I wanted to record the ambient sounds while at the same time produce a ‘live’ playback of sonic textures created by visitors as they explore the exhibit space. For this, I used a recording device to document the internal soundscape for future use, and a playback device to highlight to visitors the experience of the unique and ephemeral soundscape that they helped to create while exploring and engaging with the installations.

It was most fortuitous that the space allocated to me was under a high ceiling, set in a corner, framed on one side by a large glass-paneled wall, and the other a tall wall that was part of a staircase leading up to the loor above. It was a small and narrow space, which was ideal for my purposes, as I had intended to create a sense of privacy, a ‘nook’ into which visitors would retreat, while still being part of the general lurry of activity going on beyond the threshold.

As soon as I was able to ascertain the frameworks within which I had to work, I was able to proceed without much anxiety. I took measurements and photographs of the space using my mobile phone, made a mental sketch of where I could place my installations, and set forth to obtain more material. The photographs of the space helped as a reference tool for more accurate visualisation. Although there was a substantial amount of anxiety brought on by having to juggle a number of unknown factors, as well as communication dificulties with the organiser, the actual setting up process was nevertheless an enjoyable ‘in-the-moment,’ spontaneous exercise of engaging with and reacting to the static and dynamic interaction of site, space, situation, and pre-created and spontaneously acquired objects. I was delighted at being situated slightly away from everyone else. The space accorded to me a separation from the social goings on in the main exhibition area. Inside, I could have elemental conversations with each piece as I positioned them, connecting one to

113 another in relation within my Space of Mind. The pieces I brought with me were highly personal items from my collection of wearables. They were re-worked to relect the dichotomies of sensory attraction and aversion. As I lay them each out, I was communicating on a sensory level, listening to the ambient sounds, feeling the positions of the pieces in relation to one another and my body moving inside the space. The smell from the lemons was energising and calming at the same time, it gathered into its aura my visual, tactile activity, holding the work together in a light, citrus embrace.

Figure 15 A visual chronicle of Haptic Autistry 2012 as it unfolded, from the setting up to the opening and through the week long run.

114 Figure 16 Completed and waiting for the opening, the centerpiece lightly swaying in the cross-breeze, ‘burning’ with anticipation, as the citrus scent held the space together inside its aura.

Figure 17 (Left) Welcome to Haptic Autistry, 2012. (Right) One of my irst visitors exploring the space.

115 It is important for sensorial thinkers and learners like myself to engage with elemental-material connections while managing abstract social demands. Creating art has helped me to discover and strengthen innate qualities and abilities, while learning to devise better coping strategies to navigate and address challenges. My participation in the conference, workshop and exhibition was valuable in that the experience opened up opportunities to acquire new skills and perspectives. The Haptic HugShrug prototype and Haptic Autistry, 2012 consolidated and concretised theoretical ideas presented in the two conference papers prior to this event, and helped to propel my research and practice forward, towards the three larger installations that formed the main body of work of my PhD practice, to be discussed in the next chapter.

116 5. THE TRILOGY 2013-2015 – creating clement space

Expressing Space of Mind

“How should the artist approach practice and research without becoming so overly abstract that the grounded, proprioceptive concreteness of art becomes mired inside oppressive, draconian intellectualism?” – Dawn-joy Leong.128

Relecting on my previous work, Scheherazde’s Sea (2010) at the beginning of my PhD candidature in 2012, I became aware that, for me, the concretising of the inexorable ‘process’ (elucidated in Chapter 1) lies in the tangible sensory-idiosyncratic, detail- focused reality of autistic existence, and the vibrancy of native autistic modalities should continue to develop as the main driving force of my creative practice. In addition to crucial contribution towards intrinsic equilibrium, it is my conviction that the articulation of autism has much to offer the wider provinces of artistic and scientiic research and praxis.

A few new practical challenges presented before me. Given that the modality of autistic expression veers towards sensorial communion, how would I, as an autistic artist, address the autistic community, while, at the same time, effectively transmitting innate experiential domains to the non-autistic world via autistic modalities and without excessive use of didactic? Creating artistic work in eclectic mediums, genres and disciplines spanning music, theatre, poetry, visual art, multisensory experimentation has opened up for me dynamic sensory-cognitive pathways and internal conversations between theory and practice. The faculties of touch, sight, taste, smell and audition are heightened when verbality is diminished, and creative

128 Dawn-joy Leong, “Thinking through the Body – a Multimodal Approach from Autism,” (paper presented at The International Conference for Research Creativity: Praxis, Baptist University of Hong Kong, Hong Kong, 21-23 November 2012). 117 interpretation of tangible material and crafting of the immediate environment are compelling agencies for sharing the unuttered resonances of autism-speciic sensory- cognitive idiosyncrasy. In other words, the more I delved into my intrinsic functionalities, the more it became evident to me that artistic engagement via sensory channels is a crucial approach for communicating my theories and practice surrounding autism. Worded pedagogy alone pales in comparison with the power of multi-sensory immersion.

118 Roaring Whispers 2013 – presenting the silent scream

Figure 18 Invitation card to Roaring Whispers, 2013.

Roaring Whispers A multisensory conceptual space by Dawn-joy Leong, featuring selected images by Kateryna Fury.

Welcome to my compressed micro-cosmos illed with juxtapositions and interlocutions of sight, sound, touch, smell and taste. Suspended time reverberates inside this space- within-space, a private pied-à-terre where the abstract inds personiication in the concrete, and you are invited to engage all your senses – distal and proximal – in a rich interactive tapestry of intense yet whimsical oxymoronic interplay.

(Exhibition title and notes, Roaring Whispers 2013 – Dawn-joy Leong)

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119 Invitation into Parallel Embodiment

Figure 19 Roaring Whispers 2013 – visual captures.

Roaring Whispers 2013 was the irst exhibition in the ‘Trilogy,” a set of three installations representing the core of my material practice for this PhD. A straightforward invitation and welcome to my world, the intention behind this exhibition was to gently introduce my concept of Autistic Self from an intimate perspective, using recycled ‘found’ objects, transformed personal belongings and a videoscape. Each

120 small installation, crafted from vigorous preoccupation with minutiae, offered eclectic fragmented glimpses into my personal life. For example, the laming orange silk taffeta skirt used to ‘frame’ one of Kateryna Fury’s digital paintings was the skirt that I wore to my younger sister’s wedding almost two decades ago, and the gowns suspended from the ceiling and the shoes scattered around the exhibition space were worn at my performance in a 2005 charity music gala which I directed and produced.129 The patchwork wall hanging was made from pieces of fabric from old clothes, cushion covers, rugs etc every one with a miniature story to tell about its place in my life. Each of these pieces contained microscopic narratives of different aspects of my life, offering glimpses into my penchant for collecting, my sensory attraction for speciic textures and colours, my preoccupation with shoes and lifelong quest to ind a co- existence between beauty and comfort, and my dichotomous battle with olfactory interferences as relected in the collection of perfume bottles. Their wordless interactional engagement with one another formed a global perspective of my distinct autistic embodiment.

An additional participant in this conversation was the collection of digital paintings by Kateryna Fury, my friend and fellow autism advocate. Kateryna is paraplegic and has Ehlers Danlos Syndrome, she is now unable to hold a paintbrush, and executes her paintings on a tablet. Her pictures resonated with the key themes of Roaring Whispers, 2013 in that they conveyed silent but powerful narratives about the autistic realm, with a special highlight on the emotional and physical suffering brought on by comorbid conditions associated with but not necessarily part of autism. My own installations were sensory-focused, each piece an invitation to distal and proximal sensory dialogue. The visual impact of strong and contrasting colours greeted visitors at the entrance. Leaves scattered over the wooden loor provided ‘live’ spontaneous soundscape and the acoustics in the room added an echo chamber effect to the sounds created inside. The fabric and gowns suspended from the ceiling were multi-textured, inviting visitors to touch and engage sensorially. The small, crafted installations were

129 “Love – Our Story in Song,” charity musical gala concert in aid of the Dover Park Hospice, the Esplanade Recital Hall, Singapore, 2005. 121 miniature interjections in the lowing sensory conversation – a ‘listening tin’ attached to an orange wool jacket, a cluster of re-worked shoes at one window display, and bottles of perfume on a sheepskin rug at the other, echoing the ambience of old fashioned perfumeries. The video playing in the background was about a journey. The sensory tapestry was deliberately rich, but the narrative was unemotional. I felt that Kateryna’s paintings would inject a subtle emotionality to the space, while providing additional visual-textural sensation, that is, the effect of looking at and sensorially relating with still visual images on paper, surrounded by a sea of three-dimensional objects.

Sharing Space of Mind – autistic empathic resonance

“Throughout the history of autism many have put their efforts into changing the behaviour of autistic people. It is my opinion, and that of many of my autistic cohorts, that not enough effort has been made to understand and work with the autistic who is employing the behaviour you wish to extinguish.” – Judy Endow.130

I have been gently criticised by non-autistic friends on a few occasions for my social preferences. These commentaries include spending too much time on the internet, meeting ‘random strangers’ online, bringing my iPad along to social gatherings and reading my ebooks when I am bored. One friend remarked that it was unsafe meeting people online, but she was unable to explain how much safer meeting strangers in the pub would be. Most of my recently developed friendships have emerged from my forays into cyberspace: communications via my writings and photos online, interest groups on Facebook etc. While it is important to teach how to implement safety precautions when communicating online, it is equally crucial to teach the same

130 Judy Endow, “Fear, Anxiety and Autistic “Behaviour,”” Ollibean blog, 5 December 2015, accessed 30 March 2016. http://ollibean.com/2015/12/05/fear-anxiety-and-autistic-behavior/. 122 preventative approaches where it comes to meeting strangers (or even people introduced by friends) in person. The internet has opened up socialising opportunities to people who are unable, for myriad reasons, to socialise on the normative common platform, whether or not they are autistic. For the autist, this has led to a cogent interconnectedness that we have never before been able to show the existence of, let alone achieve.

The relationship between the collaborators – Kateryna and myself – is paradigmatic of autistic interrelatedness.131 Operating within a common Space of Mind, our relatedness was not contingent on normative measurements of affection or closeness. Kateryna resides in New Mexico, USA. We met online via our blogs, and later became friends on Facebook. It is unlikely that we shall ever meet in person – given the geographical distance between us, and our individual circumstances – but communicating digitally from a distance does not in any way diminish our ability to connect on a deeper emotional-relational level. In fact, many aspects of this medium are ideal for autists. The written word is a comfortable way for autists to express semantic language. This channel does not conine communication to the physical effort of speech: I am able to type words even on days when I am unable to speak. Through the internet, we are able to converse at our individual preferred pace. ‘Socialising’ takes place within the comfort of our homes, or any other environment of choice wherein we may contemplate, organise, and assign appropriate words to our thoughts, unhindered by ambient sensory disturbances that permeate normative social spaces like cafés, pubs or restaurants.

Kateryna’s set of autism-speciic sensory idiosyncrasies and her comorbid conditions are vastly different from mine. For example, she is violently allergic to cucumbers, while I am love cucumbers. A physical meeting on a day when I had eaten a cucumber

131 Hidetsugu Komeda et. al, “Autistic empathy towards autistic others,” Social Cognitive Affective Neuroscience (2015) 10, 145-152; This recent study has conirmed what autistic individuals and advocates, including myself, have been asserting for some time: the presence of an atypical empathic system in autism. The study concluded that autistics are more able to empathise with other autistics via different neural channels from neurotypicals, and it is just as dificult for neurotypicals to empathise with autistics as it is the other way around. 123 sandwich would trigger a severe allergic reaction in Kateryna, suficient to cause immediate hospitalisation. Separation by distance ensures that we do not suffer unintentionally from any conlict between disparate physiological anomalies and are thus more freed to share the elemental-material empathies from Space of Mind.

My collaboration with Kateryna was smooth and uncomplicated, we achieved our desired outcome without the tensions, fraught emotions, confusion and effortful interactional navigations that marked my other experiences of in-person collaborations with non-autistics. After discussing my intentions with her, Kateryna set to work on her paintings. She then sent the digital iles to me, and I had them printed and ‘dressed.’ I consulted her throughout the process, and although there were lulls in our back-and-forth messenging, when neither of us could communicate in words, when we did, our dialogue was literal and eficient, focused upon the intent of the task at hand.

Sensory association and inevitable performance

The underlying ‘inspirational soundtrack’ for Roaring Whispers, 2013 – inaudible in the actual installation and apparent only to me – was an earlier work, He(A)r(e) Not, 2009 in which I irst presented the idea of the autistic ‘roaring whisper’ through the lyrics, “… logging the silent howling.”132 (The gallery is situated beside a lecture theatre, and I was told that I could not include a soundscape in my video because they did not want the sound from the gallery to encroach upon the lectures taking place next door.) This multi-media piece, written for video and soundscape, violin and vocalisation, is a relection on the dificulties of interpersonal communication, while Roaring Whispers, 2013 represented the desire to convey and draw others into my

132 Dawn-joy Leong, “He(A)r(e) Not, 2009, for violin, voice, video and soundscape: a simple exploration into the ephemeral, spontaneous and often fragile nature of human communication,” programme notes, (premiered at the University of Hong Kong, Loke Yew Hall, April 15, 2009). The video from the premiere performance of He(A)r(e) Not, 2009: http://dawnjoyleong.com/performances-exhibitions/ heare-not/ 124 parallel universe. The intimacy injected into each individual component in Roaring Whispers, 2013 ‘spoke’ a similar message as the repeated leitmotif in He(A)r(e) Not, 2009, “Hear me!” and I visualised the space as a physical enactment of He(A)r(e) Not, 2009, but from a gentler dynamic. The video component in Roaring Whispers, 2013 reprised the visual captures of the goldish in a bowl, irst introduced in He(A)r(e) Not, 2009, and later repeated in the video and soundscape of the inale section, “Fish Dreaming,” in Scheherazade’s Sea, 2010.

There was an amusing and signiicant (in the way it played out) minor accident in the middle of the performance of He(A)r(e) Not, 2009, where the violinist dropped the musical score. She was unable to retrieve it herself because both her hands were full, with her violin in the left and bow in the right. Instead of panicking, I calmly walked across the stage, made a humorous comment to the audience about the intensity of the moment, picked up the score and placed it back on its stand, walked back across the stage to my position, and continued with the performance. By then, we were out of sync with the soundscape in the video, but instead of standing out in time and place as a ‘mistake’ or ‘disaster,’ this unscripted incident transformed our rendition into an improvised moment, with an injection of humour and savoir faire not usually attributed to autism. In actual fact, spontaneous performance is part of life for many autistic persons navigating a social system dominated by the neuro-majority. Although autistics are said to lack social spontaneity,133 however, incidents such as these are actually not unusual features in our daily lives, though the effort behind their execution goes largely unnoticed by the social majority.134 My approach to improvisatory exertion is akin to the techniques of musical extemporisation. Whether in the Baroque music of J.S. Bach, or Jazz improvisation, the practice draws upon a vast

133 Cormac Duffy and Olive Healy, “Spontaneous Communication in Autism Spectrum Disorder: A Review of Topographies and Interventions,” Research in Autism Spectrum Disorders 5(2011): 977–983, accessed April 17, 2016, http://www.nuigalway.ie/ican/content/Duffy%20(2011).pdf .

134 Perhaps the level of spontaneous ability in autistic persons may have more to do with the specific contexts in which this skill is required. Social-centric situations are more challenging to me than stage performance. The latter has a more defined and anchored framework and purpose, whereas the former is to my perception a great deal more fluid and unpredictable, and often also emotionally charged. 125 internalised database of melodic and harmonic sequences and phrases, called ‘riffs’ in Jazz terminology, stored in the mind of the musician.

126 The primal beast

Figure 20 Lucy played a crucial background role in Roaring Whispers, 2013. She was anchor for my internal and physical instability, sense-tested the textures, scents and movement of the developing components, inspired different ways of perceiving, and added an elemental, alternative empathic stream to the conversations that were threading through the work.

Another important entity in this creative effort was Lucy. A parallel entity to our parallel embodiments, her non-verbal presence permeated the conversations between myself and Kateryna, and added sentience to my process of animating the inanimate materials with which I was working. She sense-tested the multi-textured fabric and materials as I put the installations together, and made known to me her preferences through wordless sensory communications. Lucy kept me company throughout the physically taxing process, and as my assistance dog, she helped to intervene whenever 127 I approached sensory overload. Her gentle, elegant conidence within her physical embodiment was an anchor to my (at times) unstable corporeality. Learning how to communicate with Lucy in her wordless sensory modality inspired the concept of the Endeavour of Empathy. Throughout the making of Roaring Whispers 2013, I was aware of Lucy’s intense observation of me, her watchfulness, sensing my every movement even when she appeared to be asleep, and her participation in my work, made me realise that she was exercising a determined effort of empathy towards me: a continuous Endeavour of Empathy across parallel existential domains. Reciprocity requires conscious exertion, and through Lucy, I have become fascinated by this demanding yet rewarding undertaking.

Figure 21 Lucy kept me company in her relaxed and celebratory manner, which injected an added air of whimsy into my work.

As I set about crafting the individual pieces in Roaring Whispers 2013, my mind was re-enacting He(A)r(e) Not 2009, linking the two via internal sensory-cognitive dialogue, while Kateryna’s voice, speaking through her digital paintings, provided occasional interjection, like a three-way contrapuntal tête-à-tête inside a sensorially charged private room. Throughout the unfolding of process and presentation, Lucy’s parallel presence wove like a melliluous sub-melody into the rich tapestry. The summation of this dynamic interlocution – at once tangible yet abstract – transformed into Roaring Whispers 2013.

128 Mirrors and relections

Inside the soft undulating rhythm of Roaring Whispers, 2013, the most prominent and accessible feature was the juxtaposition of light-hearted whimsicality and intense colours, textures, and embedded details in each small object, together creating a placid, mute cacophony as a comprehensive whole. Oxymoronic interplay is very much part of the autist’s sensory-cognitive landscape. Roaring Whispers, 2013 represents a courteous invitation into this realm of Parallel Embodiment, a space of mind where the autistic host (myself) takes a deliberate step back when welcoming visitors, so that they may have enough mental and physical space to interact with the elements according to their own perspectival paradigms, and hopefully generate new dimensions of sensory-cognitive ‘thinking’ as a spontaneous result of this engagement. During the four-day run of the exhibition, I handed visitors cameras with the request that they capture their own perspectives and interpretations in any way they wished. I wanted to create an inclusive documentation of the work, collecting unique points of view.

129 Little Sweets 小甜心 , 2014 – a sensory odyssey

Figure 22 Little Sweets 小甜心 , 2014 – invitation card, front page.

“Little Sweets 小甜心 , 2014 is an open invitation to share empathic space with the autistic hypersensory existence. The title is a whimsical play on semantic meanings, suggesting multi-nuances of concrete sensations as well as mental states of mind. Its Chinese title, 小甜心 , brings the metaphor a little further, into the emotional dimension, with the word, “heart.”135 The Chinese word, "心 ” translates as “heart,"

135 Dawn-joy Leong, “Excerpt from Opening Address”, Little Sweets小甜心 - A Sensory Odyssey, November 10, 2014. At Dawn-joy Leong.com, website, accessed April 17, 2016, https://dawnjoyleong.com/ performances-exhibitions/little-sweets-%E5%B0%8F%E7%94%9C%E5%BF%83-a-sensory- odyssey/. 130 “core,” or “centre.” “小甜心 ” literally means, “Little Sweet Heart.”136

In this exhibition, autistic parallel embodiment is presented from the perspective of the acutely confronting challenges imposed upon fragile autistic sensory-cognitive ecology while performing ordinary, seemingly innocuous actions in daily life. The whimsical title is a deliberate ironic contradiction to the lived reality that the work is constructed to convey. Instead of a gentle invitation into a melodious counterpoint of textures, colours, sounds and images, Little Sweets 小甜心 , 2014 accosts the visitor with dense and intense sensory encounter.

Arduous odyssey, innocuous trophy

“How shall we explain our compulsion to create? Perhaps we are not ‘artists’ the way you may be, and yet, perhaps you and I are one and the same, at the very core of Creativity itself. Contrapuntal, harmonious or symphonic, even at times ponderous, we enunciate our art from our sensory eclecticism: painstakingly rigorous visual, tactile, olfactory, gustatory impressions and compressions. We create because we are inexorably driven to evince the palpable universe within us, with us and without.” – Dawn-joy Leong.137

For the autistic person, the effort to perform is not only in the area of social interaction, but also embedded in a constant struggle to overcome incessant

136 Not to be confused with the endearment, ‘sweetheart,’ but its literal meaning, “Little Sweet Heart/s.” On the surface, this alludes to the sweet cupcakes on offer at the far end of the exhibition space, representing pleasurable rewards for arduous undertakings. At a deeper level, the centre of fulillment is inding clemency within Beingness, a pleasurable (sweet) state of mind and body.

137 Dawn-joy Leong, “Thinking through the Body – a Multimodal Approach from Autism,” (paper presented at The International Conference for Research Creativity: Praxis, Baptist University of Hong Kong, Hong Kong, 21-23 November 2012). 131 bombardment of the senses, overload, and other anomalies, like confusion with visual spatial judgment in relation to our bodies, or proprioceptive control. Walking across a crowded grocery store from the fruits section to the freezers can be a terrifying journey requiring will power and steely determination to accomplish. The fear is compounded if along the way a stranger stops to ask a question, or an unruly child dashes across the aisles with an out of control shopping trolley. On many occasions, I have given up shopping altogether and just headed home without buying anything, because the intensity of the sensory assault was too much for me to cope with. Not having a full sensory meltdown, mentally taking forceful control over corporeal faculties to quietly make my way through the cacophony and mayhem, and getting myself home without mishap are examples of deliberate, scripted performances which many autists like myself have to enact on a daily basis.

Figure 23 Exhibition space – function room with open windows.

Instead of the conventional art gallery, Little Sweets 小甜心 , 2014 occupied a space normally used as a function room, in other words, a utilitarian site. A simple call to share empathic imagination with the realm of autism: this space represented my personal sensorial expedition through pedestrian spaces.

132 Suspended across the room and creating sensory ‘barriers’ were curtains of chains made from strips of multicoloured luorescent paper, bright yellow straws, blue-and- white plastic bags, multi-coloured yarn pompoms, and tissue paper pompoms. Crepe paper streamers at the entrance were carried up and outwards by the strong breeze led in through the large open windows, vigorously blowing into the faces and bodies of visitors entering – an unplanned feature that vigorously emphasised and accentuated the sensory confrontation. At the far side of the room, I set up a cupcake- making stand, where I baked fresh cupcakes throughout the day. Many visitors were drawn to the space by the aroma of baking, and I received a substantial number of visitors during lunch and teatime, many of them had simply followed the delicious scent down the corridor out of curiosity. The colourful display gave the visual impression that there was a jolly party going on inside. However, upon entering, visitors soon realised that there was no comfortable passageway through to the cupcakes, and that they had to carve their own path through the chaotic barrage of colourful obstacles, before they could reach the cupcakes at the far end. The hanging curtains were deceptively alluring because of their visual and tactile appeal, but as people tried to walk through, the various components would catch in their hair and clothing, and bodies became entangled with seemingly innocuous material in momentarily awkward gyrations. The sonic effects generated by the eclectic curtains brushing against each other formed a layer over the busy sound of trafic from the street below, creating a semi-aleatorical soundscape that enveloped and framed the space.

Figure 24 Curtains.

133 My description in the invitation to Little Sweets 小甜心 , 2014 was deliberately fragmented – for me, this kind of wordedness more effectively expressed somatic dynamism and relected my own preference for articulation.

“A snapshot of hypersensory connectivity. A suspension in time and space. Visual, tactile, kinetic, auditory, olfactory, gustatory. Refracted fragments of pleasure and pain, seeking and avoiding, reaching and recoiling, strategising, overcoming and navigating. Arduously protracted 30-second journeys. Oxymoronic. Hyper- real. Fluid. Concrete. Chromatic. Polymodal. At the end of this surreal, symbolic and dynamic actuality, lies a simple shared offering, a modest reward for endeavour, an innocuous trophy: Cupcake!” – Dawn-joy Leong.

Figure 25 Cupcake!

Re-orientating chaos

The almost desperate need for structure and predictability, a well-documented trait of autism, is a way of creating a self-protective mental and operational ‘safe haven’ in

134 response to unpredictable chaos and potential suffering as a result. However, life is full of the unexpected, especially when living in a widely neurodiverse society. Although this exhibition was originally designed to relect the dynamic forces of sensory over-stimulation and self-coping strategies in a palpable way, I was completely unprepared for the actual turn of events in which, once again, the entity of the work took on a ‘life’ and path of its own.

I had created a meticulous weekend plan for the setting up of a highly detailed and texturally dense exhibition space. The opening was advertised to begin at 6pm on Monday, 10 November 2014. I arrived onsite at 8.30am on Saturday, 8 November, with my friend Rick, who had volunteered to help me. To my utter horror, I found another student's work occupying the space. I called the number on the notice at the doorway, and I was informed that I could not access the venue until 1pm on Monday. It plunged me into a crackling, dry, seething pool of despair and bewilderment. This was not a pleasant situation for anyone, let alone the autistic mind so dependent on structure and averse to instability.

My immediate thought was to postpone the event, as there was no possibility that the elaborate original plan for the work would be achieved in four hours. However, I had promises to keep. All publicity material had already been disseminated, RSVPs received, and there was a great deal of excitement in my neighbourhood of Paddington and beyond. The founders of my chosen charity, Greyhound Rescue,138 were looking forward to the opening, an elderly couple driving all the way from the north to attend. At that moment, another autistic trait kicked in: the so-called ‘inlexible’ and ‘rigid’ mind139 became resolutely determined to honour my

138 In honour of Lucy, who was my muse for this exhibition, I donated proceeds from sales of all installations and coin contributions for cupcakes to Greyhound Rescue, an organisation that rescues discarded Greyhounds from the Greyhound racing industry, provides medical care, helps the dogs to adjust to a home environment and finds new homes for the dogs as pets; Greyhound Rescue, website, accessed April 17, 2016, http:// greyhoundrescue.com.au/.

139 American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders: DSM-5, 5th ed., Arlington, VA: American Psychiatric Association, 2013, …“extreme distress at small changes, dificulties with transitions, rigid thinking patterns.” 135 commitments, no matter what the circumstances. The show must go on: I consciously put my brain into ‘emergency-performance’ mode and began to re-strategise and re- sensitise.

Forced to improvise, I quickly embarked on a different plan of action. I decided that the entire exhibition would have to take on an experimental, oxymoronic ‘structured- aleatory’ dimension: I will work within the limitations imposed and see what happens when it happens. Over the extremely anxiety-illed weekend, the matter was resolved and I was allowed to begin setting up on Monday, not at 1pm but at 10am.

The practice of performance once again became a key element in my coping strategy, propelling me out of the frightening conundrum and forward into practical pursuit.

Just like musical improvisation, being able to extemporise is the result of rapid computation, rearrangement and impartation of data previously acquired and stored inside the mind. The performer, even when playing from a score, is aware that during ‘live’ performances, the unexpected often happens, but that is all part of being prepared, expecting the unexpected and performing life in the moment. It is demanding, tiring, exhausting and constantly pushes one outside of our comfort zones or beyond perceived limits, but it can also be exhilarating and fulilling.

Accumulating a cogent collection in this dynamic library requires hours of practice and exploration involving diligent repetition, organisation and order, and subsuming these entities into the fabric of the musician’s embodiment. In other words, spontaneous ad lib performances do not emerge ‘from out of nowhere’ but are the result of internalised careful planning, dedicated practise, experimentation and daring execution. I began gathering ‘riffs’ for my performances of life inside the normative social world when I became fascinated by the musicals, which my father used to collect. Practice and repetitive experimentation lead to application in ‘real life’ situations. Improvisatory performance does not only serve the ‘colonial’ neuro- majority (by reassuring them that I am capable of behaving according to their frames of references) but more importantly, and this is an aspect which should be better

136 emphasised, it helps the autist cope more effectively in luid, unstable circumstances. It is my belief that autistic individuals are capable of approaching spontaneity in the same ways as a musician develops extemporisation skills. It is therefore imperative to create awareness that such a possibility exists at all, and this is yet another area in which multi-practice art is a cogent ally to intervention strategies, not only for issues faced by autistic people but also a plethora of internal and external challenges across neurological divides. It is a skill that has helped me in countless situations, not to ‘overcome’ my innate autistic traits as weaknesses but rather to utilise these proclivities and accentuate their strengths, especially in moments of dire need.

In this speciic situation, well-designed plans are abruptly destroyed. The autistic mind needs order and organisation to properly function. Panic and devastation hits hard like an out-of-control vehicle traveling at great speed. However, the improviser takes over, quickly re-organising the performance according to the details available within the circumstance, re-ordering chaos into structure. The autistic mind thus regains a new systematic framework from which to work. A slightly different, realigned work is born.140

Canine inspiration

Little Sweets 小甜心 , 2014 was in part inspired by Lucy. In my quest to understand her better, I stumbled upon canine sensory and cognitive studies and sensory-based behavior training. The more I observed how Lucy deals with her senses, the more I wondered how I could employ similar strategies to my own autistic hypersenses. Many Greyhounds rescued from the racing industry display obvious signs of fear and take time to adjust to life as a family pet. Lucy was unusual in that she settled into my life in the middle of the city without any awkward adaptation issues. This was not to

140 Most certainly, I could not have set up even the newly extemporised version within the short period of time available, and I am extremely grateful to my two friends Sara Sohrabian and Rick Johnson for their help. 137 say that she does not have sensory aversions, but rather that her ease of ability to address them innately intrigued me when I compared her with other former racing Greyhounds.

This space was conceived and designed in response to a training method designed to help young dogs acclimatise their senses to external stimuli in a fun way, in order to conidently navigate the bombardment of stimuli in their future environments.141 A large frame resembling a box is constructed, and an assortment of everyday objects hung from the sides. Food is placed inside the box and puppies are encouraged to explore the space – entering and leaving, weaving in and out – at their own pace. The reward is available in the middle of the box, but it is up to the puppies to avail themselves of it.

The connection with developing coping strategies for hypersensory reactivity is very strong: bypassing the verbal didactic, addressing the senses directly, and offering a positive experience in exchange for the effort of negotiating the daunting. To me, this approach differs from those therapies that repeatedly expose the autistic child to fear- triggering, non-native situations, and made to cease performing actions142 deemed inappropriate from the viewpoint of normative society. Rather than modiication methodologies like ABA therapy, which are not only forceful but are created according to the frameworks of normative demands, the priority of focus for any therapeutic or support programme should always be the intrinsic wellbeing of the different embodiment. Little Sweets 小甜心 , 2014 is an example of an innovative and non- aversive approach to sensory redirection. I prefer to use the term “re-sensitisation” rather than “de-sensitisation,” as the former connotes that the original sensitivity is of value but merely needs new or added ways for direction, while the latter term implies

141 The Avidog Adventure Box, website, accessed April 17, 2016, http://www.avidog.com/product/avidogs- adventure-box-2/.

142 For example, in traditional ABA therapies, based on assessment of their (superficial) observed behaviours, autistic children are ‘trained’ to offer eye contact and social hugs, stop stimming, and adjust to loud noises and other sensory disturbances using, among many, a technique called ‘compliance training’ which seeks to make the autistic subject comply with the therapist regardless of the autistic subject’s negative responses. 138 a dulling of the senses. Many autists with hypersenses, myself included, do not wish for their sensory acuity to be taken away or even muted, as the heights of these sensations also bring much pleasure and added dimensions to one’s perceptual realm. It is thus far more useful to learn how to manage the negative effects of hypersensitivity than to mufle the senses.

Empathic endeavour

The reactions of two visitors to Little Sweets 小甜心 , 2014 stood out distinctly from all the feedback I received during this exhibition. An architect and a general worker, both friends of mine, visited the space on separate occasions. They related their discussion to me. The architect commented to the general worker that I should have created a clear path into the space, so that people would feel more welcome and conident about where they should be heading and how. The other friend then replied that perhaps the disarray was intentional and its purpose was to make people more aware of and participate in the sensory dificulties that I was trying to express. It was clear that the architect was approaching the space with deeply entrenched professional preconceptions, and thus missed out on the simple expressive notion of sensory engagement, despite my having repeatedly discussed and described at length my intent and objectives with this friend prior to the exhibition. On the other hand, I hardly spoke more than a few words with the other friend prior to the event, yet it he seemed to possess a more open and keenly intuitive reception of the space, unhindered by the tyranny of inelastic professional indoctrination. There is no ‘expected outcome’ in my work, no right or wrong response. Both friends arrived at the same awareness of disarray and confusion from vastly different perspectival points. The architect’s trained perception could immediately identify and was puzzled or disturbed by the dissonance, and the immediate response was to try to ‘ix’ it. The other friend approached the space through a more primal sensory-cognitive channel, accepting it as it was presented, and actively sought to connect with and embrace the space and its message without extraneous imposition. This incident called to mind the 139 reaction of Hong Kong artist, Jaffa Lam, to Scheherazde’s Sea 2010, and my straightforward succinct reply, “Welcome to my world.”

The ability to empathise with an alien framework is not an automatically activated talent inherent in one section of humanity and lacking in another: empathy is an endeavour, a deliberate act of choice and a protracted journey to follow. It is not enough to become ‘aware’ of autism, the mainstream media and non-autistic autism movements have already propagated far too much awareness of their own preconceived notion of autism. Rather, what is needed is acceptance and the willingness to move beyond mere static acceptance to a dynamic embrace. An endeavour of empathy.

140 Sonata in Z – in search of clement space

Sonata in Z

An autistic human, A greyhound dog. Parallel Embodiments, A journey of Being. Endeavour of empathy, Spaces of mind. Sonorous communion, Wordless interlocutions. Enter barefoot Scheherazade's Sea: Dancing Awake Inside dreams.

141 Sonata in Z is a 'gentle space', inspired by my autistic hypersensory quest for sanctuary, and Lucy's natural ability to seek out and create oases of comfort. Unfolding like a musical sonata, visual images of Lucy in sonorous repose introduce the theme of rest. Please leave your shoes at the threshold as you enter, symbolically shedding conventional notions of social communication. Once inside, we shall not speak in words, but the tranquility is neither silent nor empty, because our senses will lead the way into a different social ecosystem of softly undulating rhythms, patterns, sounds, movements, gestures, textures, smells, tastes and visual conversations. This is our refuge, an alternative empathic resonance, a nonverbal sensory equilibrium – and Lucy and I would like to share our clement space with you.

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The above was the publicity poster and exhibition description that I wrote for Sonata in Z 2015.

Sensory clemency is essential to all existence, but for the autist, the difference between excruciating conlict and peaceful innate functionality hinges upon a precarious balancing act of inding ecological wellbeing. However, for the autist with sensory idiosyncrasy, equilibrium and tranquility are rare and precious luxuries, despite the fact that they are high priority necessities for proper intrinsic function. The senses are constantly on edge and the mind is ever struggling to sort and sequence the bombardment of information. Seemingly benign chatter, pops, squeaks, scrapes and lashes of everyday life become legions of raging monsters savaging fragile inner worlds with brutal force: a brush of texture against the skin, pounding music, pulsating lights, clattering of plates, cups and cutlery, humming conversations and bursts of laughter, the sudden ringing of a school bell or alarm clock, the smell of perfume or innocuous perspiration. Persistently overwhelmed, the autist spends a prodigious amount of time and mental-physical energy desperately paddling to stay aloat in a frothy sea littered with terrifying lotsam and jetsam bobbing and swirling

142 in unpredictable confusion, as dark dank waters convulse around, crashing repeatedly against vulnerable, porous mind-body embankments.

Sonata in Z, 2014 completes my series of three physical studies in Autistic Parallel Embodiment and elemental empathy, presenting the studio practice component of this PhD. Roaring Whispers, 2013 gently introduced the autistic hyper acute paradigm and Little Sweets 小甜心， 2014 confronted visitors with the silent cacophony of my autistic existential oxymoron. Sonata in Z, 2014 focused inwards to present an encounter with sensorial clemency, gentle equilibrium, and endeavour of empathy for Self-ness. Instead of re-enacting the enigma of autistic embodiment to non-autistic mindsets in concretised conciliatory gestures, Sonata in Z, 2014 was conceived and constructed speciically with the autistic visitor irst and foremost in mind. Visitors, autistic and non-autistic, were embraced by palpable material adaptions of cogitative rumination and comforting wordless conversations.

The title, Sonata in Z, is a nod to my favourite musical form, the Classical Sonata, which speaks to me of order, process and ‘becoming;’ and a whimsical reference to Lucy’s favourite activity, i.e. mellow reposing. It suggests the symbiotic relationship between an autist and her canine companion, a testament of empathic resonance across diverse states of Beingness. Inspired by Lucy’s innate ability to locate and create her own personal oases of sensorial consolation in transient site, space and situation, and the unique elegance and poise with which she executes this inexorable mission, Sonata in Z, 2015 recreated a personal retreat, a benevolent space, and a compassionate microcosmos. Lucy’s presence, both during the process of making and in the exhibition space, injected an aura of quietude into this sublime pilgrimage, gently facilitating and connecting unostentatious interaction with eclectic facets of Self, a placid antithesis of the complex, hyper-reality of autistic sensory overload. Sonata in Z, 2015 was as fully textured and teeming with busy details as the other two preceding works, yet its luscious occupation was one of peace and a gathering inwards of graceful elements.

143 Sonorous Repose

“What your senses perceive may merely be supericial scratches on the surface of our world, but we invite you to intuit our reality, perhaps by magnifying your own. Sense your senses, and in sensing your senses, allow your senses to sense your self, and the world around you. Become aware of your body, become cognisant of other bodies, from the miniscule to the colossal. Taste, touch, smell, listen and move – conscious of your every vibration, the reverberations and echoes you create.” – Dawn- joy Leong.143

Visitors were asked to remove their shoes to enter Sonata in Z, 2014, a symbolic ritual of shedding preconceived notions of art – aesthetics, exhibitions, etc – and autism, leaving the feet vulnerable to reception of eclectic sensations. Like a musical leitmotif, photographs of Lucy in various positions of ‘Sonorous Repose’ led the way into the space, visually introducing the theme of sensorial clemency and respite. The muted hues of white and beige bore a deliberate non-verbal message. On the loor, differently textured rugs beckoned, while foam peanuts provided an element of humour and naïve pleasure to shoe-less feet. A wobbly cocoon stood on one side and a dome- shaped structure wrapped in diaphanous netting on the other, with exquisitely luscious furry softness in between. Origami cranes, symbols of hope, and woolly pompoms, whimsical tactile punctuations, adorned the netted dome and translucent curtains. At the back, two large stuffed creatures silently witness the goings on – a giant creature with scraggly long fur resembling an Old English Sheepdog, and an enormous soft cuddly teddy bear. On the walls hung small rugs and miniature installation pieces, hand-woven or crafted from recycled fabric, string and yarn, tactile

143 Dawn-joy Leong, “Thinking through the Body – a Multimodal Approach from Autism,” (paper presented at The International Conference for Research Creativity: Praxis, Baptist University of Hong Kong, Hong Kong, 21-23 November 2012). 144 conversations best experienced through the proximal senses. An old vintage suitcase containing rice and discarded shells, and a watery tub of juicy beads invited haptic play. Cushions and small stuffed toys were scattered around the space. In the background, beneath the ambient noise of trafic swirling in from outside, a basso continuo could be heard: a fugal soundscape of Lucy’s heartbeat and snoring.

The opening theme of this work is key to its unfolding development. Lucy keeps me company as I work, mostly from home, but other times at my art studio, where she has a bed in a corner. Like most Greyhounds, who are often referred to as “45 mph couch potatoes,” she sleeps a lot. During outings and playgroup with other Greyhounds, Lucy loves to run at full speed, competing with the other Greyhounds for treats at the other end. Their running, however, is in short bursts of power, after which the dogs lop down on soft rugs. At home, Lucy does have quick lashes of energy, where she will ‘zoom’ round and round the small conines of our apartment for a few manic seconds and then sink into bed as if the energetic episode never occurred.

Enthralled by her ability to progress from rest to intense a ction and then back to rest again, and the exquisite elegance with which she executes the exercise, I have been taking photographs of her during her resting states. It seems to me, observing her closely and listening to her breathing and snoring, that she is somehow sublimely aware of my presence even when she appears deep in slumber. I have to be quick and extremely quiet when I reach for my camera, get up from my chair and move towards her, because she senses my minutest motions and her eyes will lutter open towards me.

For exhibition in Sonata in Z, 2015, I chose twenty photographs out of literally thousands in my ever expanding collection. The photographs were mounted on the wall, leading into the exhibition space. The edges were torn to give the photographs a rhythmic feel.

145 Grace and gracefulness

Sonata in Z, 2015 materially enacted clement space within Space of Mind: a place where my senses are consoled and able to regain composure and strength, and where I am not obliged to perform the unnatural. In other words, an oasis of nurturing and a private connectedness with materiality and Being. The introspective focus worked well with fellow autistic visitors – I did not have to explain the space to them, they instinctively knew what the space was offering and how to avail themselves of it. A young autistic friend came to the opening with her assistance dog, and although I was too distracted at the time to notice what everyone was doing, upon viewing the photographs, I saw that my autistic friend was lying down with her dog in a beautiful position, curled onto a luffy rug, almost poetic in its composition.

On the inal day of the exhibition, I received a visit from another friend, who drove in from Queensland with her two autistic children and one child’s assistance dog. I met my friend via the internet: she emailed me after stumbling upon my blog, and we connected on Facebook. This was the irst ‘in-person’ meeting, and I was aware of a strange juxtaposition of mental states. To my friend, I felt compelled to explain the space and engage in some verbal exchange, but the two young people did not seem to need that at all. The teenager wandered around silently on his own, while the younger child became engrossed in the two large stuffed animals and the foam peanuts. During the course of her visit, we also made tissue paper pompoms. I was innately more comfortable interacting with the autistic young persons than with my friend in this a person-to-person scenario, although I had no trouble ‘chatting’ with her in our many typed messages. I gave the young girl the two stuffed animals and she was very pleased, I could feel the delight emanating from her little being, even though she did not speak much. It was comfortable not needing to look her in the eye or babble on and on, I am certain she understood that unspoken ease too.

146 The reverse was true with non-autistic visitors. Although I had intended for Sonata in Z to be a non-speaking space, where people connected with the elements and via materiality, it was impossible in practice. In some cases, even when I managed to quell the impulse to put visitors at ease by speaking to them and explaining the space, they would initiate conversation and ask me. It would have been rude not to reply. Many visitors, after I had explained the work to them, began to engage with the installations without further verbal prompting. However there were others who did not seem to understand at all, but nevertheless enjoyed the textures, calm and tranquillity of this space. There was one visitor, an artist, who engaged in a protracted conversation even though I had repeatedly told her this was a non-speaking space and I was hoping that people would connect sensorially instead. I observed, too, that some were quite obviously uncomfortable when, after explaining the non-worded realm being captured by the exhibition, I deliberately stopped talking and invited them to explore the space instead. This underlined in a poignant and tangible way the strong reliance on wordedness in normative communication, and perhaps the use of words to obscure or camoulage social awkwardness, especially when encountering novel experiences.

Paper chains – an exercise in elemental empathy

A few months before Sonata in Z, 2015, I conducted a workshop session at the Museum of Contemporary Art, Sydney, about autism and sensory approaches to my artistic practice. At the end of this workshop, I carried out an experiment in non- didactic sensorial empathy with the participants. After a half hour talk about autistic sensory-cognitive idiosyncrasies and my research and practice, I handed out sheets of paper and staplers. Without any spoken instruction, I sat down, began to tear the paper into strips, stapled them together and made paper chains. The participants, all art educators specialising in disabilities, seemed unsure of what to do, and fumbled with their papers and staplers creating paper objects of their own. After ive minutes, I wrapped up the experiment by explaining to them what I was trying to do. Not one

147 person seemed to have grasped the meaning behind the exercise, and they failed to communicate or empathise with me in a non-verbal elemental dimension.

During Sonata in Z, 2015, I reprised this non-speaking reciprocal exercise twice. On one occasion, I made tissue paper pompoms with a nine-year-old autistic child, using the same wordless approach. It did not low as smoothly as I had hoped, because the child’s mother kept interjecting and either asking for instructions, or offering them to her child. I could see that the autistic child was trying to focus on observing me (visual) and mimicking my actions (proprioceptive) but she was also hesitant and wanted to ‘do the right thing,’ and hence would look to her mother for reassurance. If the mother had not interjected verbally but instead indicated with body language that all was well, I am certain the exercise would have been a lot more pleasant for the child and me. In the other experiment, I made paper chains with three adults, a PhD student in linguistics, a dental nurse, and an installation artist, none of them diagnosed as autistic, but one exhibits symptoms of attention deicit hyperactivity disorder.

At irst, the participants were hesitant, but unlike the previous group of teachers at the museum, these friends took time to ‘inhale the sensory messages that my body was sending. Perhaps it was because they knew me and were hence undaunted by the element of social awkwardness. I deliberately avoided looking at their faces, but the lack of eye contact did not seem to bother them, so absorbed were they in their endeavour of empathic resonance. As they were settling down and watching me closely, they began simply just to engage tactilely with the paper, scissors and staplers. Eventually, I could hear the rhythm and sound of their breathing slowing down and arriving at a regular andante pace, like a leisurely stroll, as each person, one after another, started to mimic my actions. We spent about ifteen minutes in repetitive motion – tearing strips of paper, curling them around, and stapling – without worded conversation. We hardly looked at one another, yet, as time wore on, I could sense the pace in which we were working become increasingly even, and we

148 arrived together at an adagio con calma, as our breathing synchronised in mutual rhythmic sympathy.

Existential dissonance – ‘impaired’ Space of Mind?

I was told that the opening night was a huge success. As the artist, I am of course most grateful to hear such feedback. However, as an autist, my senses were overloaded and teetering on the edge of meltdown, the pressure to perform-the-normative-social was intense, as I made effort to interact with my invited guests. Two hours before the advertised opening time, after a very long and physical taxing day of completing the installation set-up, I was literally herded by a kind, wellmeaning friend into the horrifying jaws of a shopping mall, dashing back and forth to buy drinks and food for the opening. I did not have a budget for this, but my friend generously provided. At one stage, I lost my friend in the maelstrom of human bodies, lights, smells and noise, and a great deal of energy had to be spent summoning mental and sensorial control to prevent a sensory meltdown there and then. Another friend made sandwiches and inger food, and there was a moment of extreme anxiety – worrying about the time frame and having to make numerous phone calls – when we got lost traveling to pick up these contributions. From my point of view, it was an outgoing effort of will to empathise with Other – their expressions of benevolence, their concepts of celebration – while sacriicing the needs of Self. Yes, it was ‘my party’ but in the normative social context, the autist is seldom ever allowed to ‘own’ the social space. I would have been happy to settle for biscuits and cheese, the thoughtful contribution of sandwiches, with a few bottles of wine and sparkling water, but my social-brained festivity-loving friend had very deinite ideas of what she wanted to buy for my opening party, and I was too physically and mentally run down, too socially engulfed, to object.

As an autist and a performance artist, I am far more comfortable, and even energised, speaking or performing to a large crowd than I am interacting in a social gathering.

149 Needless to say, I traversed the event with as much verve, vim and vigour as I could muster. I had a duty to perform to my own work, its independent, dynamic entity demanded it of me. The photographs from that evening provided the only documentation I have of the event, since my own mind was too overwhelmed, and my body too drained by the shopping expedition and pandering to my wellmeaning friend’s wishes, to retain any present, in-the-moment, information. It was exciting for me to review the photographs, which were beautifully captured, although I felt as if I was looking inside my space from the outside: a stranger spectator, rather than a participant and author.

Another incident during Sonata in Z, 2015 that created a schism between the elemental connection of the work and its author-performer was the editing of my exhibition description, without my approval. The description, which was to be on the wall at the entrance to my exhibition, was not ready for the opening. When the words were inally put on the wall at the end of the second day of the exhibition run, I noticed that my characteristically intimate fragmented prose was edited into an impersonal and frigid third-person description of the work. This is perhaps not an unusual frustration and example of break down in perspective and communication between artist and curator, however, the un-solicited alteration shifted the sensorial reverberation embedded in my message, disturbing once again the carefully planned nuances that I had meant for my own worded articulation to convey. For the autist, such incidents touch a raw chord in our parallel embodiment, because once again, the voice of Self is silenced by autocratic Other in yet another interplay between coloniser and subaltern. I understand intellectually that this particular incident was not focused upon my autistic embodiment – galleries and curators often clash with exhibiting artists in such instances – but because of the acculturation that autists have been subjected to by normative society, it made me feel like the ‘outsider’ in my own home, in which someone had conferred themself authority to make renovations, and I was relegated to the role of the silent and hapless shadow in the corner.

150 Sonorous counterpoint

Simultaneous to the human contemplation of Sonata in Z, 2015, another interaction was unfolding, a parallel conversation of a different kind. Each day during the course of the week, as soon as we entered the space, Lucy inhabited it, exploring familiarity with fresh curiosity every new day. She would ind a comfortable spot to lie on, sniff around as if fascinated by the smells, discover different objects to play with, and spaces in which to celebrate exuberance. Wordlessly, apart from a very few, small, short and succinct barks. The senses spoke loudly and eloquently. This was ‘home’ for us, during a most blessed week. I have not felt as much reluctance to leave any orchestrated space as I did when I bade goodbye to Sonata in Z, 2015.

151 Figure 30 Sonata in Z, 2015 – Lucy exploring, creating and inhabiting clement space.

152 6. RECAPITULATION

My work is “a process that palpably, in an act of physical effort, carves a life of its own in the researcher’s mind.”144 Four months after completion of the Trilogy, which forms the central focus for the practice of this dissertation, the reverberations emanating from the combined conceptual-and-physical entities have been far reaching, surpassing my own expectations in terms of philosophical revelation and empirical impact upon my personal life.

On the level of the material practice, a miniature of Sonata in Z, 2015 was exhibited as part of my autism research group’s irst public event, Autism MeetUp 2016.145 This microcosmic capture of the expansive original work consisted of the soft, wobbly cocoon, and a mosquito net suspended from the ceiling, enclosing a soft beanbag. Some foam packing peanuts were scattered on the loor, along with the white origami cranes left over from the 2015 exhibition. A few photographs of Lucy were attached to the wall, and the vintage suitcase illed with rice for tactile play was placed near the window. The autistic children who visited the space seemed to instinctively ‘sense’ the space and engage in their own sensory conversations with the material, without much prompting. The autistic adults who visited seemed at irst hesitant to touch the components of the exhibit, and asked for guidance and verbal explanation. Perhaps this reticence was because they had become more aware, as adults, of normative social protocols. After the event, a parent of two autistic girls posted some photographs on Facebook of the girls’ response to my space: they had created an exhibition of their own at home. Once again, Lucy was my ambassador for sensory clemency, leading the way into sensory-cognitive restfulness. When people saw Lucy asleep in the tent, they were drawn to join her inside: there was no need for verbal encouragement.

144 Chapter 1, p.1

145 UNSW Autism Research Group, “Autism MeetUp 2016,” http://www.autismmeetup.org/autismmeetup-2016/ 153 Reporting along the conspicuous dimension, my artwork has attracted positive feedback and interest from visitors, reaching beyond the autism community to the neurodiverse, some of whom share similar challenges to those highlighted and relected in my work. In addition, photographs, videos and soundscapes posted online146 and via social media147 have reached diverse audiences, generating interest and discussion beyond ‘in-person’ interaction.148 In addition, subject to funding approval, I hope to be participating in a transdisciplinary research project focusing on sensory idiosyncrasy and designing conducive spaces later in 2016.149 Not wanting to somehow sound inlated, this level of feedback, while valuable to me as a researcher and artist, serves at the same time to suppress my inner connection with the inexorable momentum and propulsion of the entity of my work. To this autist, such statements of ‘success’ or ‘good outcomes’ bring along with them shadows of obligation to the constructs of normative ideals for achievement. The repeating narrative, like an ungainly “Theme and Variations in the key of Compliance,” play out an oppressive ironic dichotomy. I desire that my autistic voice be heard, and my research and material practice make a valuable contribution to the realm of learning and praxis, with emphasis on empathy and acceptance for the autistic culture, and creating embracing attitudes across neuro-cultural diversity. However, I also inwardly cringe from having to pay dutiful obeisance to the forms and structures put in place by the normative ‘colonial powers’ that deine for me non-native parameters for achievement, success and approval. At the same time, I understand the logic behind this interplay and its necessity, since there is yet to be a practicable alternative system

146 Scheherazade’s Sea Blog: https://scheherazadessea.wordpress.com/posts/

147 Scheherazade’s Sea Facebook Community Page: https://www.facebook.com/scheherazadessea/

148 Through my website and blogs featuring my research and praxis, I have received online communications from strangers from different walks of life and professions – artists, psychologists, writers, disability activists, medical professionals, and parents of autistic children. The ongoing correspondences have opened another avenue for reciprocal learning, discussion, and dissemination and exchange of ideas.

149 A funding proposal has been submitted to the Autism CRC (Australia) If approved, the project will commence in August 2016. The core researchers include psychologists, engineers, artists and designers, among which are one autistic researcher (myself) and a psychologist who is parent to a non-speaking autistic person. 154 in place to measure and confer status and accomplishment according to native autistic modalities. Yet, should there be? At this point of time, the topic is beyond the scope of this PhD, but my own inkling is that the answer eventually will lie in the development of a neurocosmopolitan culture.

On a personal level, I have become increasingly consciously sensitised to the challenges surrounding my quest for clement space and elemental empathy. ‘The work’ has taken on a life of its own, morphing into a multidimensional theatrical orchestration by an unknown dramaturge, hurtling through time and space, and taking me along with it.

Even as I am completing this chapter – the cadential inale of the opus Scheherazade’s Sea 2016 – ‘the work’ has by now journeyed across terrain beyond original intent, enriching the diegesis and expanding multi-dimensional boundaries in unexpected ways. The organic eco-system of Sonata in Z 2015 – its physical body and dynamic experiential animation – demonstrates that the concept of ‘clement space’ reaches beyond the arrangement of soft cushions, fabrics, and visual-auditory devices designed to induce peaceful associations, to encompass a joint corporeal-cogitative expanse within which sensory modulation resides and functions in synchronised symbiosis with cognitive equilibrium. The latter, in the case of autism, includes order, structure, routine, predictability and stability on multiple levels.

Inclement space

My own personal search for clement space during the course of this PhD journey has propelled me through eclectic apertures of awe-inspiring wonder, excruciating agony, disconcerting absurdity, wretched frustration, and sobering humility, as life precipitates research-praxis and ‘the work’ compels lived-reality. The following mise en scène is the result of multiple factors colliding inside deined space suspended in time and place, creating a maelstrom of dissonant events and confrontations. Such a

155 bizarre drama may at irst seem somewhat awkwardly positioned within a PhD dissertation, however, its unfolding is a crucial part of the life and evolution of the work, and the conclusion of this part of the journey through Scheharazade’s Sea.150

In the months following Sonata in Z, 2015, as if to test the tenacity and veracity of my theory and material practice, Scheherazade’s Sea heaved and churned, propelling Lucy and me into turbulent waters, sailing in our fragile little wooden boat headlong into the mythical Charybdis. Perched precariously near the submission deadline of this PhD dissertation, I was given no choice but to exit the living quarters into which I had only just moved two months before. The person with whom I was staying expressed the inability to mentally cope with having Lucy and me share the small apartment. The announcement was unexpected, a shock, but the embedded message in the missive was crystal clear: I had to leave. Its impact shattered already fragile physical, mental and sensory constructions. In order to make due accommodation for one mental disability, the mental-physical wellbeing of the other was betrayed.

I was cast out into the perilous darkness without any practical offer of an auxiliary plan. The ability to semantically articulate my situation temporarily left me. My mind jumped beyond meltdown into shutdown mode. Locked inside roaring silence, the sensation of dissociation set in. It was a morbid interplay of contrasts: sluggish, corpulent mass sinking further and further down the abyss, while gossamer wings softly lifted upwards, drawn towards the glittery lights juxtaposed against dark night sky, just beyond the balcony. It was Lucy’s steadfast sentient physical presence that brought me slowly back, away from the dangerous precipice. Trained to assist me with sensory alert and anxiety intervention, Lucy also helps with ‘grounding’ actions151 when she senses that I am entering into or incapacitated by mind-body

150 Chapter 1: Introduction. This refers to the work as palpable process and dynamic entity, which “in an act of physical effort, carves a life of its own in the researcher’s mind.”

151 The task of ‘grounding’ may be executed in different ways, according to specific need and situation. ‘Grounding’ is based on the principle that the animal performs a physical act such as leaning, pawing, or climbing onto the human handler, in order to ‘relocate’ or ‘reconnect’ the human handler’s corporeal, spatial and situational awareness. 156 dislocation. A soft, gentle paw pressed against my side, and I felt consciousness of presence gradually returning, and the body began to reconnect with present time and space.

Violation of Space of Mind

In a gesture of benevolence, I was offered a spare room at a friend’s home for the inal months leading up to the PhD submission. It was an altruistic promise of a temporary safe haven, a benign physical and mental space where I could focus unhindered on writing up my dissertation. Reality, as it played out, did not match aspiration. The adventure that unfolded was fraught with dissonance from the very beginning. According to normative social constructs, I should have been elated at the prospect of living rent-free in a home with the proverbial “million-dollar view.” Alas, my autistic perceptions could not operate along the same perceptual modalities as the general population with regards to the sensory effect of this location. An elemental dissonance that I was unable to explain or quash set in from the outset. No matter how hard I tried to revel in the beautiful panorama, my senses were unable to connect harmoniously with the ecology of my surrounds.

My hopes for clemency-of-space were dashed, as a bizarre theatre of savage and sharply contrasting sensorial extremes took over. Without adequate curtains for my hypersensitivity to light, the glare from bright sunlight bouncing off the seawater stabbed viciously at my eyes. I developed a constant headache and a tense, somewhat comical watery squint, while multi-coloured luminous blobs of stark colour danced around, obscuring my vision. The heavy putrid smell of storm water emptying into the bay, jarring noise from beach revellers and their barking off-leash dogs, loud blasting music from late night barbecues, and searing heat of the summer without appropriate cooling appliances all combined into a jeering, aggressive multi-sensorial incubus. There was nowhere for Lucy and me to escape to. The peace and familiar solace of my art studio was a forty-dollar return taxi ride away, and I just could not afford this

157 luxury on a daily basis. Bus routes in that locality were dismally planned, and required a one hour long, two-bus journey to reach my campus, by which time I would be in a state of collapse from sensory and anxiety overload. We were trapped inside the vice- like grip of muniicence.

Devastation of empathy

Tragedy struck on the very opening anacrusis to this grim melody that threaded its way through the entire punishing sojourn like a sneering Dies Irae: a violation of Space of Mind. On the very irst day, Lucy lost one third of her elegant long tail in a moment of callous neglect.152 The days to come were illed with extrinsic stressful activities and intrinsic sensory-elemental bereavement. At the same time, I found myself mired in a scenario completely different from the peaceful and safe sanctuary I was led to place my trust in. Cardboard boxes piled up high and scattered around the living room, people coming in and out painting the ceiling, walls and doors, putting up mirrors and assembling furniture, while I was charged with the task of cleaning and organising the kitchen. The smell of paint enveloped my olfactory senses, and dizziness, nausea and sharp headaches set in. I became unable to align my senses and cognitive logic with the scenario of turbulent bedlam before me. I dared not express my dismay at the injurious sensory conditions, or the excruciating frustration of not being allowed to engage in my work. In any case, I had no other means, where else could I go? At the same time, I felt obliged to perform a persona of cheer and enthusiasm. Castigation thrives inside the uncomfortable interstice between the yearning for restful intrinsic actualisation, and the sense of obligation to perform extrinsic social mimesis, feeding

152 I had left Lucy with my friend, while I was packing for the move at my previous abode. The person charged (by my friend) with the duty to take Lucy downstairs for a toileting, carelessly allowed the heavy lobby door to slam on her tail, crushing it. Amputation followed. 158 off hapless Self-Other dichotomies. I became the forlorn and desperate Poirot Lunaire153 character in a twisted mutant vaudeville sideshow.

One of the results of years of neurocultural-oppression is the autist’s interpretation of ‘moral and ethical integrity’ to somehow mean acquiescing to dominant social norm above native need, to the point of self-destruction.154 Each time I felt on the verge of exiting the frenzied phantasmagorical dramatisation of ‘charity-gratitude,’ to just dive into the consolation of isolation and work, my ‘imaginary purple elephant of guilt’ would stare at me from the corners of my fatigue and weariness, pointing its curly trunk at my timorous nose, snarling, “How dare you be ungrateful! A roof over your head with a million-dollar view! What is wrong with you?”

A song I wrote and recorded many years ago returned to me, looping persistently in my mind like a soft stimming plea to the Grand Cosmic Clemency. It felt as if ‘the work’ had summoned up this relic from its past as a consoling reminder to me of the inevitable immutable course of creative energy.

Let me rise above this pain, Catch a glimpse of your face. Let me soar above the rain clouds, Know the touch of your grace. If you show me, but a licker, A relection of your presence,

153 Arnold Schoenberg’s, Pierrot Lunaire, Opus 21 (1912) was a ‘melodramatic’ setting of 21 poems translated into German by Otto Erich Hartleben from Albert Giraud’s cycle of French poems similarly titled. Pierrot Lunaire, a commedia dell’arte character, represents the trusting, naïve artist in a worldly- wise society. Caught inside a chilling, sad and wild ‘moon-drunk’ dichotomy of Being, Pierrot navigates the darkness in a bizarre poetic dreamscape, attempting to ind resolution for his agony. The music employs an eclectic array of compositional techniques, and the vocal style of Sprechstimme, a hybrid of spoken and sung atonal melody, which I am particularly fascinated by and have incorporated into my performances.

154 The medical / pathological model of autism has paved the way towards this form of colonial suppression and oppression of mental cultures that deviate from the normative. Compliant social behaviour is imperative, and ‘success’ is measured by level of conformity, without consideration to native functionality and wellbeing. 159 Then I shall know within a peace, Despite unanswered questions.

Let me see amidst this darkness That your light guides my way. Let me rise above the water, Through this crushing storm, I pray, That you’ll show me but a licker A relection of your presence, Then I shall know within a peace, Despite unanswered questions. (Questions, 2000 – Dawn-joy Leong.)155

The autistic mind is naturally predisposed towards intense concentration and focus on pursuits of interest and passion. Mental and sensorial wellbeing hinges upon the freedom to engage in the luscious comfort of pursuit, unhindered and uninterrupted by extraneous demands. For me, not being able to concentrate on writing up my dissertation was a violent desecration. The torment was made all the more potent because I became the obliging autist drowning inside the demands of the normative realm, valiantly refusing to scuttle back into the safety of my “own world”156 because I did not wish to disoblige. I had once again taken on the role of Ralph Savarese’s ‘subaltern,’ gagged and bound by autocratic colonial forces of social convention.157

“the subaltern has not only learned to

155 Dawn-joy Leong, “Questions, 2000,” YouTube, Sep 4, 2011, accessed April 17, 2016, https://youtu.be/ U275MkBLBNw?list=UUu4MkOkGkGzcx6lKIT-zZVg.

156 Mike Falcon and Stephen A. Shoop, ‘Stars 'CAN-do' about defeating autism,’ USA Today, accessed April 16, 2016, http://usatoday30.usatoday.com/news/health/spotlight/2002/04/10-autism.htm.

157 Ralph Savarese and Lisa Zunshine, “The Critic as Neurocosmopolite; or What Cognitive Approaches to Literature can learn from Disability Studies: Lisa Zunshine in Conversation with Ralph Savarese,” Narrative, 22, no.1 (2014): 17-44. 160 speak, it has also begun to organize” … - Ralph Savarese.158

This situation confronted me with consciousness of the stark discrepancy between the crescendo of the collective autistic voice and the loundering, roaring whisper of the individual autistic, carrying upon shoulders rotting carcasses of preconditioned self- censure and juggling overwhelming normative social demands for the sake of survival in tumultuous seas. Scheherazade battles on with Bluebeard’s ghost.

I believe that my research and practice will contribute to the growing cogency of the collective voice, but inside my micro-cosmos, faced with the perplexing social complexities and oppressive silencing of my personal voice, I felt like a hapless, squeaky, cheap harmonica engulfed inside a Wagnerian full orchestral assault, the Ride of the Valkyries thundering overhead.159

As the collective voice of autists begin rising in a slow but steady crescendo, there are many monumental hurdles still to overcome for the subaltern to learn to speak face- to-face with the colonial forces within immediate living spheres, and much more needs to be done to help forge this personal freedom. Perhaps the way ahead for the individual autist in their own limited spheres is to continue to address each encounter, every occasion and distinct situation as yet another platform for empathic undertaking towards Beingness, adding to the collective cantata.

Scheherazade speaks No longer buried In dark blue silence Invisible chains No longer hidden

158 Ibid.

159 19th century composer Richard Wagner expanded the size of the orchestra to accommodate his use of rich chromatic-harmonic textures, dramatically loud brass sections and sharply contrasting dynamics. Wagner’s operatic dramas are intensely emotional and long, the most famous of which is the Ring Cycle, which, when played back to back, lasted about 15 hours. 161 Time has turned Circles in space Scheherazade laughs In Bluebeard’s face Nay, not derision But sad irony For Bluebeard’s shackles Forgiveness unspoken New joy embraced At last All is revealed Scheherazade speaks Into the light Of a brand new day (Scheherazade Speaks – Dawn-joy Leong, 2010)

The Endeavour of Empathy reiterates itself, over and over, like an insistent idée ixe that refuses to be silenced.

Broken integrity – organic severance

Beneath the human-focused turbulence, traveling along a separate altitude, I continued the struggle to cope with the loss of a sizeable part of Lucy’s tail, and the resonance of my empathy for not only her physical and mental suffering but also the rudimentary, material-elemental repercussions of the event. The cost of the operation and subsequent vet care was substantial, but I was more crushed by Lucy’s suffering, and the severance of elemental continuity and connectivity. Writing under my pseudonym ‘Bunnyhopscotch’ I made the following entry in my sensory blog:

162 “My devastation lies in the fact that I have caused both Lucy and myself to lose something precious forever. Her beauty. Her dignity. People think these are merely cosmetic. But not to me.” … “They connect us with the cosmic interconnectivities, the elemental-dynamic, material-empathic systems. When I turned my back on my intrinsic functionality, choosing to ignore my screaming instincts, shutting down the loud voices of misgiving, and giving in to the louder booming demands of an alien system, I left her in the hands of someone I do not trust – because I was desperate and failed to perceive alternative solutions – I broke my own integrity.”160 – Bunnyhopscotch.

My grieving continued, a stream of mute lamentations lowing beneath the frenetic manic activity. Christmas and New Year festivities came upon us, and the demands of normative social obligation entered the stage of my existential discomfort. Straddling the limsy and volatile divide between houseguest and recipient of charitable largesse, I felt it incumbent on me to plunge into the mêlée of merriment, grocery shopping, planning, plating, serving, dishwashing, and a great deal of smiling. The vultures of time swooped and picked away, every incisive rip an agonising reminder of hours and minutes wrenched from my weak, forlorn grasp. Meanwhile, Lucy continued to hurt inside her canine realm of wordlessness.

Lucy began to lose weight inexplicably, although her ample appetite for food became more alarmingly voracious. For three weeks immediately after the amputation, she displayed obvious signs of physical discomfort, moving around in bed, unable to settle into a comfortable position, and when she did fall asleep, she would whimper loudly, her whole body trembling and shuddering alarmingly. Lucy had always been a conident, happy and independent dog, but now, she became clingy and insecure, did

160 Dawn-joy Leong, “Heartbroken,” Bunnyhopscotch, blog post, last accessed April 17, 2016, https:// bunnyhopscotch.wordpress.com/2015/12/02/heartbroken/ 163 not want to go outside for walks, became apprehensive, constantly looking behind her and leading me home in a hurry as soon as her toileting was complete. Lucy was indicating to me her sensory unrest. Inside my Space of Mind, I was acutely aware of her resonance, but all I could do in my impotence was stare blankly and helplessly into the malevolent, grinning crevasse. Malady after malady set in, throwing us into a long and terrifying nightmare of loose stools, vomiting, lethargy, and multiple vet visits, culminating in a bout of haemorrhaging diarrhoea, collapsing from dehydration and exertion, and a traumatic rush to the emergency vet hospital at 2.30am one Friday morning in the inal week of January. I was physically spent, mentally exhausted, sensorially overloaded and inancially destroyed. By this time, two months had scuttled by.

In February, Lucy began to recover at last. Her spirits and energy levels improved after we joined a group of other greyhounds for some light exercise every evening.161 We started a new routine, and I was inally able to plunge headlong into a euphoric lurry of intense focus on my work. Then, barely two weeks into exulting in frenetic writing surrounded by newly established calm and order, came the communiqué that separated me from my assistance dog and closest companion, obliterating an already anxiety-wrought mental-sensory space and frangible working timeline. Both were absolutely crucial to my wellbeing and survival.

161 Lucy was increasingly reluctant to go outside, she was not adapting well to the new neighbourhood, and showed no interest in the other dogs we encountered during our walks. She only brightened up when we joined what I later called the “greyhound playgroup,” comprising three other greyhounds living nearby. A kind neighbour, who also owns a greyhound, introduced us to the group. 164 Reviewing the turbulence

Teetering on the precipice of homelessness and academic failure after months of manic upheaval, I was once again confronted by the stark reality that the impact of the sensory environment, executive function, and cognitive balance and order on the daily life of an autistic person is a topic that cannot and should not be removed from any serious conversation surrounding autism. Conducive habitation is essential to all life forms. This fundamental becomes all the more crucial when sensory-cognitive function deviates from standard frameworks, especially since built environments and typical social practices and demands tend to be at odds with fragile autistic ecologies. What may appear to be desirable and valuable domicile in normative terms could actually be hostile and unsympathetic to the needs of a person with atypicality.

Corporeal excavations of intimate, personal lived-experience are inseparable from this autist’s research and praxis. The sensorial-circumstantial environment within which I reside and through which I must travel impacts my existence and becomes intertwined with my research and praxis in profound ways, and with far-reaching consequences. The autist’s speciic system of needs differs somewhat from that of the social majority. Autistic atypical hyper-reactivity, aversion and craving, and resistance to or fear of change and disorder are not merely grossly exaggerated responses to inconvenient discomfort. So sensitive the ecosystem may be that the very slightest disturbance has propensity to ire up explosives with painful and devastating consequences.

When I was a young child, I would suffer quite severe sensory meltdown from what normative society around me deemed innocuous and even pleasant triggers. For example, if someone so much as moved my coloured pencils inside their porcelain mug holder, I would implode; if I were intruded upon during piano practice with a comment, even if it was praise, I could not continue and the disruption illed me with frustration and rage; people standing behind me to look at my ‘work in progress,’ which would usually be a drawing, painting, model aeroplane, or a chemistry

165 experiment, triggered intense and vigorous anger. I felt that the ecological purity and dignity of my intimate elemental realm had been outraged. Yet, I was subjected daily to insensitive trespasses upon my privacy, as autists too often are in myriad circumstances. Many autistic childhood meltdowns are labelled ‘temper tantrums,’ when in actual fact, they are signs of unspeakable sensory-cognitive distress, and the child is usually severely chastised, humiliated or even physically punished for ‘bad’ or embarrassing behaviour.162 Existing in a social world that neither recognises nor empathises with sensory acuity, many autistic adults have had to devise self- intervention strategies to hide the pain. Not surprisingly, acute craving for order and calm, predictability and routine are trenchant features of autism, and much needs to be changed in terms of understanding the traits and developing strategies for intervention and support from the autistic context, instead of from the viewpoint of normative paradigms.163

Upon recognising autism as a Parallel Embodiment – whose system of social connectivity is based on an elemental-material Space of Mind, and from which emerges an alternative empathic system – the crying need for empathic endeavour becomes ever more evident. The call is an expanding symphonic chorus, not in the staid harmonic progressions of mainstream tradition, but eclectic chromatic- polyphonic voices rising in pulsating rhythmic crescendo-stretto. The Endeavour of Empathy is crucial to a true breakthrough for neuro-cultural co-existence and points the way forward towards building a neurocomopolitan world. The normative world badly needs to turn its current conversation of empathy164 towards developing

162 This is unfortunately still happening to autistic children, the most alarming situations being those which call themselves ‘autism intervention’ or ‘behavioural therapies,’ sanctioned by professional practitioners, that basically strive to eradicate and subjugate what is native autistic response.

163 This article by the Seattle Children’s Hospital and Research Foundation presents the medical-clinical model, which is the most common approach at present. The inherent features described are accurate portrayals of actual lived-experience, however, the use of deficits-based stereotyped language is problematic from the viewpoint of autistic self-representation and sympathetic strategies for support. Last accessed April 17, 2016, http://theautismblog.seattlechildrens.org/autism-and-dealing-with-change/ .

164 Refering to the theory that autism is a triad of social impediments, based on the lack of (neurotypical) Theory of Mind and impaired empathy for neurotypical mental states. 166 empathy for the autistic existence.165 At the same time, the mission of empathic endeavour also belongs to the autist: empathy for autistic Self, inding autistic Beingness within a clement Self-Other space.

A cogent channel through which this crucial empathic reciprocity may be nurtured is the experiential participation in multi-artistic immersive spaces exempliied by my Trilogy of Roaring Whispers 2013, Little Sweets 小甜心 2014 and Sonata in Z 2015.

Imperfect grace – empowering beauty

Having no resources to rent a temporary home for Lucy and myself, I was forced to leave her with a friend in Sydney and travel back to my home in Singapore. The bulk of this thesis was given worded form and structure during the four weeks I spent at home in Singapore. I wrote the following passages, contemplating clemency of space.

As I write up this thesis, I am adapting to a benignant ecosphere, still battling sensory- physiological after effects of the intense struggle in preceding months, but at last able to grasp some tangible inkling of clemency. It is not an ideal situation. I am without my Lucy, who, as my assistance dog, helps to mitigate the effects of my sensory anxiety, fulilling far more than the role of a faithful companion dog. I miss her terribly – our sensorial-elemental connection has become so much a bulwark of stability and strength to me. I do not have the luxury of complete privacy in which to work, and make do with an extemporised space carved out from my younger sister’s dining table. The view from my workstation is that of my sister’s small backyard patio. Each time I look up from my MacbookPro, my immediate line of vision is occupied by a row of potted plants, sitting in tranquil stillness, beyond the glass-panelled door.

165 The problem is not so much that neurotypical society is deliberately unsympathetic, but that the powerful organisations and professionals styling themselves as ‘autism experts’ have been propagating prejudicial perspectives to the ignorant public (the medical model of autism as a disease, or a collection of impairments). There is an urgent need to address this inadequate and fallacious perception of and attitudinal approach towards the autistic embodiment. 167 Occasionally, a squirrel scuttles along the wooden fence. The soundscape is a droning duet: the bladeless fan on my left, humming a whimsical whorl around the F sharp tone, and the round bladed fan across the room, churning a conident tritone chord on E lat. The duet is embellished occasionally by interjecting ambient noises, but it remains benevolent and politely unobtrusive.

My bedroom is in my mother’s ground loor apartment, and the view from the patio and my bedroom window is that of a tranquil swimming pool, surrounded by coconut and frangipani trees, and a soundscape of running water created by the fountains. It is not a “million-dollar-view” but its visual and physical orderliness is soothing to my fraught senses. Each morning, at 6am, I make my way across a corridor to my sister’s apartment, set up my ‘clement space’ and begin writing. Every evening, I ‘take down’ my mini installations – stack up my books neatly, wind up power cords, reposition the chair etc – and return to my bedroom in my mother’s apartment. My sister then tidies up after me again, making sure all is in proper place and order. It is a ritual that we have instituted, and its routine rendition helps precipitate my day and bring it to a close with a sense of anticipation and stability.

I do encounter little interruptions throughout the day, for example my sister’s bodily presence moving around in the space, stirring the atmosphere, and her voice cutting through the air, asking me what I wish to have for lunch, tea or dinner, or mother dropping in to see how I am doing – but these interactions are neither unpleasant nor meaningless social chatter to me, since I am able to be frank and direct when wanting to end a conversation, or even ignoring them, without fear of committing social faux pas or offending anyone. Relieved of the burden of superluous social performance and time-sapping obligations, I am able to slide smoothly back into intense focus without generating any signiicant levels of stress or anxiety. I am enjoying the luxury of executive function support: not needing to grapple with the demons of housework, grocery shopping, cooking and dishwashing, all of which are being taken care of by my younger sister. There is no necessity to linger over meals, making small talk. My sister’s two canine helpers are also a great comfort to me, providing tactile

168 consolation, along with some non-human warmth and companionship, even as I yearn to be reunited with my Lucy.

Being separated from Lucy was the most excruciating aspect of this circumstance, although the temporary, hastily improvised juxtaposition inhabited for those four weeks came closest to ‘clemency of space’ that I have been able to achieve in a very long time. It addressed the triad of needs as deined by my model of clement space, providing me with desperately needed functional equilibrium within native autistic embodiment and Space of Mind. Sensory composure forms the foundation for ‘clement space.’ The sensorial dimension is the most intimate of the three interrelated entities that form a cohesive ‘clement space.’ Using a musical analogy, the sensory domain thus functions much like the basso continuo in a piece of 17th century Baroque music: it is the ‘base line’ which determines the fundamental tonality and drives the piece forward. Two other pertinent facets of the ‘clement space’ model are social concord and executive-function accommodation. These components are the harmonies, melodies and thematic motifs embroidered over the basso continuo, weaving in and out like interlocutory threads, moving in rhythmic and contrapuntal patterns as one complete organism. Just as each piece of music is a unique entity, made up of differing harmonic, rhythmic, melodic, dynamic and temporal forces, ‘clement space’ may be composed, purposed and sounded out in myriad ways, according to the individual autist’s personal frameworks. Nevertheless, the rudimental compositional principles apply, uniting the disparate musical offerings in one distinguishable genre.

As illustrated by my personal journey and the whorl of events that I found myself engulfed in, the concretisation and execution of clement space needs to include the effort of friends, carers and supporters of the autistic person. Whether they are fellow autists or non-autistic, they are a necessary part of the ensemble or orchestra. In this case, it is imperative that the parties involved become musically atuned to one another, in order to perform their parts with compassionate alacrity, as part of a concerted Endeavour of Empathy.

169 Employing the above musical description to the Trilogy, the three exhibitions may be viewed in the following way: Roaring Whispers 2013 served as the introductory passage to the opus; Little Sweets 小甜心2014 presented the two fugal themes of social concord and executive-function accommodation; and Sonata in Z 2015 formed the basso continuo with its focus on sensorial equilibrium and intrinsic autistic dispensation.

The word ‘autism’ is derived from the Greek word, ‘autos’ which means ‘self’ – implying an introspective posture. In order to understand and embrace parallel embodiment, inward-gazing is important. On the part of the autist, one looks into self- ness to examine and discover Being. The autist spends most of their life, whether by choice or coercion, or a combination of both, scrutinising non-autistic Otherness, for adaptation and survival. It is expedient for the autist to engage in empathic endeavour towards Self, ind clement space within Space of Mind and connect with innate empathic synchronicity. Only then can the autist begin to align Self in proper position with Other, without sacriicing crucial native modalities. For the non-autist wanting to understand the autistic entity, it is necessary too to have a clear perspective of their own non-autistic paradigms and investigate these in juxtaposition with concepts of Parallel Embodiment and Space of Mind.

In fact, it is not a negative trait to live inside a world of our own, only emerging when we wish to and not when others demand that we do. The neuro-majority inhabits a world of its own design, most of the time never emerging from it into any other dimension at all. Humanity needs to learn to share neurocultural worlds, welcoming one another into our unique domains, yet being free to retreat into privacy when we need and wish to, without recrimination. One of the ways in which this gentle reciprocity may be achieved is via a transdisciplinary approach facilitated by multi- artistic practice, creating experiential spaces – spaces that encapsulate physical- conceptual situations capable of multidimensional extensions.

170 Such art practice will lead the way ahead in generating immersive tangible elemental- material experiences by autists for autists. We can: elaborate neurocultural concepts of autism as a parallel embodiment, debunking the myth of barren isolation; elucidate alternative empathy and facilitate empathic endeavour; motivate coping and learning strategies sympathetic to the native autistic Space of Mind; engender intercultural reciprocity through approaches from within autism (rather than applying non-autistic applications); and inally, contribute towards the aspiration and practice of a Neurocosmopolitan society.

Dancing with my shadows Whispering, “Good Night” Humming silent wishes Smiling deep inside Dancing with my shadows Jarful of moonbeams Come, lay down beside me Wake up in my dreams (Wake Up in My Dreams - Dawn-joy Leong, 2010.)

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179 GLOSSARY

Autist: autistic individual.

Neurocosmopolitanism: approaching neurological diversity in the same way as culture, acquiring a cosmopolitan worldview that applies to neuro-cultural perspectives.

Neurodivergent: an individual who is neurologically different from the neuro- majority. Autists are also neurodivergent.

Neurodiversity: indicates neuro-cultural diversity, groups of people with differently ‘wired’ neurology. Autism is included in neurodiversity.

Non-speaking autist: refers to not enunciating words, refers to an autistic person who mainly types words as communication, rather than speaking.

Non-verbal autist: denotes the absence of words entirely, refers to an autistic person who does not communicate in words (i.e. does not speak or type words).

Self and Other: My discussion of Self-Other dichotomy refers to the Autistic Self as viewed from introspection of native neuro-functional and individual-speciic components, and the effects of internal impressions upon extrospective social- relational aspects of life. The Other is the non-autistic entity, individual and collective, bearing separate neuro-functional and personal traits, as well as adhering to a disparate social-relational code of normative behaviour.

Stimming: self-stimulatory action common in autism, a comforting and calming self intervention strategy.

180 APPENDIX A

Thinking through the body – a multimodal perspective from autism. Dawn-joy Leong, 2012

ABSTRACT

How should the artist approach practice and research without becoming so overly abstract that the grounded, proprioceptive concreteness of art becomes mired inside oppressive, draconian intellectualism? The reciprocal processes of researching artistic practice and practicing artistic research require actively synergetic, symbiotic sensory and cognitive engagement, the interaction and inter-reaction of the bodily senses with theoretical, philosophical insight and invention.

Sensorial contemplation, that is, “thinking through the body,” is an inherent trait of Autism Spectrum Condition. How do autistic sensory, proprioceptive and cognitive idiosyncrasies affect creative motivation and process? May the model of autism inspire a fresh perspective for research and praxis? As an artist with Autism Spectrum Condition, the aims of my paper are to provide an ‘insider’ view of how sensory and cognitive idiosyncrasy shape my creativity, and using the autistic body-mind model, suggest an alternative milieu for creating visionary collaborative research, and mutually empathic platforms.

181 INTRODUCTION: ART, CONTEMPLATION AND SENTIENCE.

Art is a process of ‘becoming’: it is an inclusive, embracing and exhaustive creativity, a series of meticulous, practical innovations building one upon another in myriad combinations and permutations. The artist, in creating a work of artistic expression, engages in rumination and rigorous mental exposition, but the act of artistry is not conined to philosophical notions alone, and requires parturition of theoretical and metaphysical ideas in the form of concrete, tangible actualisations, which are then perceived by the audience through the physical senses. Elevated status is nowadays given to our human ability to consciously ponder and contemplate. In fact, our very identities are so deeply entrenched in the transcendental and cogitative dimensions, we often ignore the stark reality that all our brilliance is contained within, and must be conveyed via, a somatic vessel made up of tangible substance. This intrinsic interdependency, though not always convenient, is ever present. How, then, should the artist approach practice and research without becoming so overly abstract that the grounded, proprioceptive concreteness of art becomes mired inside oppressive, draconian intellectualism? Perhaps a more inclusive paradigm is necessary: one that embraces the entirety of existence, where the cerebral is in persistent, active sympathy with dynamic material.

The senses are essential to elemental functioning, and profoundly impact our mental states, whether or not we are consciously aware of the actual processes taking place. It is through our senses that we experience and perceive the world around us, and through our senses that we derive insights into our own existence. Greek philosopher Aristotle placed much importance in the senses and postulated that relationships and interaction between the senses are crucial to comprehensive mental function.166 Scientiic discoveries today now support the ancient theories that the brain is multimodal in its organisation and operation, and non-associative areas actually possess multiple connectivity channels from one to another.167 In addition, neuroimaging technology reveals that multimodal brain function exists also in those who are sensory impaired.168

166 Ronal M. Polansky, Aristotle’s De Anima (New York: Cambridge University Press, 2007).

167 Harry McGurk and John McDonald, “Hearing Lips and Seeing Voices,” Nature 267, (23 December 1976). One prime example of multi-modal sensory perception is illustrated in the experiment known as the McGurk effect. The experiment basically consists of a video recording of a human repeating the word, “Ga”, while the audio track overdubbed the voice of someone else saying the word, “Ba”. However, when this was played back to participants in the experiment, most perceived the word as, “Da”. This simple experiment, in which viewing lip and mouth movement alters phoneme identiication, indicates that the brain functions multi-modally.

168 Gemma Calvert, Charles Spence and Barry E. Stein, eds., The Handbook of Multi-sensory Processes (Cambridge, Massachusetts: MIT Press, 2004), 690. Tests done on the blind reveal that the area of the brain normally responsible for vision still activates during auditory processing. The reciprocal processes of researching artistic practice and practicing artistic research thus require synergetic, symbiotic sensory and cognitive engagement - in other words, vital interaction and inter-reaction of the bodily senses with theoretical, philosophical insight and invention. For the vast majority of people, however, physical sentience is seldom at the forefront of attention, unless or until some illness, injury or other inconvenience highlights the function of body consciousness. The opposite is true for those with Autism Spectrum Condition.

THINKING THROUGH THE BODY: THE AUTISM MODEL

Autism Spectrum Condition is a widely heterogeneous neurological condition, encompassing the severely intellectually challenged, those with normal IQ, and others with remarkable intellect and abilities. Diagnostic features of this spectrum condition include eccentric modes of social reciprocity and communication, restricted and intense patterns of behaviour, activities and interests, and a predilection for repetition and routine.169 Multimodal sensory idiosyncrasy is also prevalent, although individual proiles vary considerably.170

Hypersensitivity is common, where sensorial reception and reaction are overly acute. Relatively innocuous stimuli can precipitate extreme fear, anxiety, distress, confusion, physical symptoms like nausea, headache and pain, as well as interfere with basic executive function.171 Common indications include extreme reactivity to sound, smell, taste, textures and touch, acute hearing, ability to view objects from multiple perspectives, and unusual sensory attractions or aversions.172 Proprioceptive and vestibular impediments are also common in Autism Spectrum Condition. These range from severe movement impairment and delayed motor responses, to clumsiness, problems with balance and ine motor coordination, awkward posture and gait, and other less obvious struggles with executive functioning. For example, I can dance effortlessly to music and rhythm, but require conscious vigilance to maintain balance while walking in the street. I perform delicate

169 The American Psychiatric Association, Diagnostic and Statistical Manual-IV Text Revised [DSM-IV-TR], (The American Psychiatric Association, 2000): 69-70.

170 Susan R. Leekam, Carmen Nieto, Sarah J. Libby, Lorna Wing, Judith Gould, “Describing the Sensory Abnormalities of Children and Adults with Autism,” Journal of Autism Developmental Disorders 37 (2007): 894-910.

171 Although mostly associated with higher functioning autism, sensory acuity may be far more pervasive than previously thought in Classic autism, where many individuals appear to be hyposensitive, that is, devoid or lacking in sensory response. One possible reason is that such individuals may be more severely intellectually challenged, non-verbal, and/or unable to articulate or deal with the nature of their sensory reception and perception, which makes it dificult for accurate and speciic assessment.

172 Tony Attwood, “Sensory Sensitivity,” in The Complete Guide to Asperger’s Syndrome (London: Jessica Kingsley Publications, 2007), 271-291. manoeuvres requiring ine motor skills when creating art installations or working on craft projects, but I am unable to catch any object that is thrown at me. “Stimming” – habitual repetitive gesturing or other bodily movements - is another common characteristic in Autism. Although viewed by the social majority as disturbing and bizarre, many autistic individuals nevertheless describe stimming as a self-calming mechanism, and a way of “being in a constant conversation with every aspect of (the) environment.”173 The most common forms of stimming are rocking back and forth, spinning the body or objects, muttering to oneself, and hand or arm lapping.174

Preference for systems and logic, exceptional visual sense, and a strong instinct for the material dimension are features of autism cognition. As a consequence, the mind is more attuned to matter-centric relationships than to social-relational interactions. In a now famous experiment by Ami Klin, the eye gazes of autistic and non-autistic subjects were mapped while viewing an excerpt from the 1996 Mike Nichols ilm, “Who’s Afraid of Virginia Woolf.” The autistic subjects instinctively focused their visual attention on the ilm’s physical settings, subtle changes in camera angles within scenes and the actors’ mouths, while the non-autistic subjects concentrated more on the human interaction and the actors’ eyes and facial expressions.175 Many autistic individuals are also more drawn to animals than to humans, perhaps because of their more primal, acute sensory-based interactions and highly speciic focus. World famous animal behaviourist and autism advocate, Temple Grandin, documents her visual-spatial thinking and natural autistic gravitational attraction towards animals in her autobiographic writings.176

The experiential world of Autism Spectrum Condition is very often fragmented and bewildering, when juxtaposed within the social-physical constructs and built environments created by the neurotypical177 majority. Sensory contemplation, that is, “thinking through the body,” is constantly at the forefront of the autistic existence, and it is from out of this panorama, that the ideas of this paper emerge.

173 Amanda Baggs, “In My Language,” http://www.youtube.com/watch?v=JnylM1hI2jc, accessed 15 August 2012. According to autism advocate Amanda Baggs, repetitive physical gesticulation is merely a natural process of communicating between the body and the material world.

174 This phenomenon is most obviously observed in Classic autism, where many are non-verbal and face more severe functional challenges, but stimming is also often practised by higher functioning autistics, although the actual mannerisms are better masked or highly evolved into unnoticeable manoeuvres through ingenuous self-intervention.

175 Ami Klin, Warren Jones, Robert Schultz, Fred Volkmar and Donald Cohen, “Deining and Quantifying the Social Phenotype in Autism,” The American Journal of Psychiatry vol 159, no. 6 (2002): 895-908.

176 Temple Grandin and Catherine Johnson, Animals in Translation: Using the Mysteries of Autism to Decode Animal Behaviour (Simon & Schuster, 2004).

177 A term originally coined by the autistic community to refer to the non-autistic majority. This term was later adopted by the scientiic community to refer to the majority of the human population with social-relational based cognitive processing styles, and without any other neurological impediment. Neurological studies are now indicating that creative talent is inluenced by the individual’s ability for exactitude, and that the exceptional talents in autistic and other gifted individuals are based largely on their innate predisposition towards intense attention to minutiae and pursuit of repetition.178 Brain scientist and expert on savantism, Allan Snyder, suggests that exceptional savant skills are basically the result of uninhibited ‘bottom-up thinking’,179 that is, detail focused cognition, which, although not conined to autism, is nevertheless the distinguishing cognitive style. Not all savants are autistic, but the majority are. The study of savantism may serve as kind of archetype for unusual talent, especially in people who have neurological challenges.

Creative invention is a discrete, sophisticated articulation of comprehending our world. For artistic research led practice and practice based research to remain faithful to this relection, there needs to be a breakdown of the arbitrary demarcations between heuristic and hermeneutic attitudes and conventions, as well as an active pursuit of multi-sensory frameworks and strategies. The autistic mind does not differentiate between heuristic and hermeneutic process, they are intertwined, inseparable components of ‘pneuma’, the sense of ‘being.’ The creative autistic is artist as much as scientist on an intense journey of discovery, rigorous investigation of fascinating phenomena, and innovative response.

Perspectives from inside out.

How shall we view the embedded semiotics of aesthetic expressions in the autistic mindscape? How do autistic sensory, proprioceptive and cognitive peculiarity affect creative motivation and process, and how may the model of autism inluence and inspire a fresh perspective for research, practice and collaboration? More than that, how can this kind of creative investigation and application bring about advantageous understanding between conlicting states of mind? From this point, I shall speak in the irst person, as an autistic individual. The pronouns “I” and “we” shall be interchangeable and refer to persons with Autism Spectrum Condition, while “you” refers to the neurotypical social majority.180 I have no explicit or predetermined theoretical or methodological manifesto or design to dispense. My model for addressing artistic praxis and research is to “think through the

178 Francesca Happé and Uta Frith, Introduction to Autism and Talent, ed. Francesca Happé and Uta Frith (New York: Oxford University Press, 2010).

179 Allan Snyder, “Explaining and inducing savant skills: privileged access to lower level, less-processed information,” Philosophical Transactions of the Royal Society of Biological Sciences vol.364 no.1522 (2009): 1399-1405.

180 In order to offer a more cogent and inclusive sensory experience for the purposes of a ‘live’ presentation, projected onto a screen in the background is a silent video of visuals from my most recent work, Scheherazade’s Sea (2010), as I speak, and it is intended that my speech shall be the audio component for this dual sensory presentation. Dawn-joy Leong, Scheherazade’s Sea: a mixed media, multisensory installation and performance, (University of Hong Kong Premiere, 2010), excerpts. This audio-visual can be accessed from the following link: https://vimeo.com/52880587 body,” as each artist employs his or her own inventions and interpretations, inspired and motivated by the autistic existence.

We sense, and therefore we exist. We exist in conscious relation to matter. We communicate with and through the elements that constantly impact our senses. We seek sensation, at the same time as we recoil from it. To the outside world, we may seem to live in a vacuum, but it is actually a busy vortex of intimate corporeal-cerebral conversation with the material universe. There are those of us synaesthetes who taste colour, touch rhythm, smell timbre,181 and others whose thoughts, emotions and physical states are profoundly affected by minute and subtle changes in light, temperature, wind direction or the impact of a plethora of sounds and smells. Artistry is intuition, and intuition dwells not only within theoretical contemplation, but is at the same time embedded in our ingertips, inspiring the rhythm of our breath, communicating through the sensation of dust particles upon our skin, or the sound and feel of water running from the tap. To us, all creative energy is multi-sensorial.

Dry verbal intercourses, vast swaths of text, they are so often devoid of imagery or fabric. Are words all we have to touch each other’s souls with, and is the spoken language the only syntax that you can understand?

“aetiological imbroglio ontological contrariety anthropomorphic manifesto verbal dysentery”182

Not all of us like to speak in words, although some of us have learned the technicalities of social language expertly. Nevertheless, we continue to project ourselves within our pedanticism. This is our parlance: it is tangible, direct. My words, even when cleverly employed, are merely painting pictures, creating smells and tastes, and composing soundscapes. Sometimes we are captivated by complex terminology, but there are no loquacious, convoluted, interactional lines to read between, no subtle sarcasm, no nuanced interpersonal signals, and no tortuously circuitous social-relational calisthenics to perform. Signs and symbols are our linguistic hieroglyphics, and our vocabulary is multi-sensorial: many words embodied within one object, which may be variously seen, touched, tasted, smelled and heard in an instance. Condensed, exploratory, immediate, inundated, luscious, exploding, we can empathise without verbal dialogue through the symbolic, and perceive these through our senses, our bodies.

How shall we explain our compulsion to create? Perhaps we are not ‘artists’ the way you may be, and yet, perhaps you and I are one and the same, at the very core of Creativity itself. Contrapuntal, harmonious or symphonic, even at times ponderous,

181 While not conined to autism, many autistic individuals also have synaesthesia.

182 Dawn-joy Leong, Speak (2012), a poem about the autistic struggle with verbal discourse. we enunciate our art from our sensory eclecticism: painstakingly rigorous visual, tactile, olfactory, gustatory impressions and compressions. We create because we are inexorably driven to evince the palpable universe within us, with us and without.

What is our process, our strategy? We have no devices but the inexorable. Our fascination is in precision and occurrence. To us, each time the same dial is turned, a different and fascinating pattern is created. We may be mistaken as having no imagination, because of our love for so-called repetition. That is because you have not yet understood. There is no true replication in our world: there is only a persistence of evolution and transformation, themes and variations.

CREATING MUTUALLY EMPATHIC PLATFORMS: “WELCOME TO MY WORLD!”

Neurotypical. Neurodiverse. Autistic. Disabled. Abled. Whatever the terminology or label may be, I believe it is possible for distinct mentalities to co-exist, that we can ind a space where we can ‘be’ together. Perhaps, the ‘parallel play’ of very young children and autism may be the answer: devoid of verbose social chatter, cognizant of your own senses, as well as mine. We are alongside, but not encroaching, a companionship without coercion, a spontaneous choreography in suspended moments in time and space. We must, however, be ever respectful of the interstices, bodies apart, minds solitary, not fraternising but nevertheless connected and tactile, inside a communal sensory expanse. Your experience, your thoughts, they are yours, and mine belong solely to myself, but we are simultaneously encountering: our senses, our existences, and our discernment of the perceptible, pulsating world.

How do I speak my symbols to you, so that you may understand? I can do so with references to your signs and symbols, things that have meaning to you from your world, stories, motifs and icons that we both know. I have diligently studied your metaphors, would you not take time now to learn mine? What your senses perceive may merely be supericial scratches on the surface of our world, but we invite you to intuit our reality, perhaps by magnifying your own. Sense your senses, and in sensing your senses, allow your senses to sense your self, and the world around you. Become aware of your body, become cognisant of other bodies, from the miniscule to the colossal. Taste, touch, smell, listen and move – conscious of your every vibration, the reverberations and echoes you create. At the same time, your mind questions the consciousness of your senses: where are the convergences, conluences, conlicts and what are the resultants?

Smallness is monument. Begin with the most basic, most diminutive organism. Remember. Imprint. Expand. Then reach outward to the next organism, sensing the process, one axon and dendrite at a time. Again, remember, imprint, and expand. Become aware of independent entities merging slowly, patiently, precisely, and enjoy the intricate patterns they make as they greet and touch and intertwine, until a larger and larger organ is constructed. “Too busy, too confusing, I cannot ind a central focus!” you may say. And my reply shall be, “Welcome to my world!”

If you are unable to identify and revel in the intricacies, you may have not yet immersed yourself from inside out. Attend to one molecule, one cell at a time, until you are able to sense the labyrinth, and emerge to perceive the entirety. There you will ind the global perspective that your minds are predisposed to seek. If you approach the rich tumultuous tapestries in this manner, from the inside out, you will not be confounded, despite the apparent chaos, because your understanding shall be sensed throughout your body, without need for meandering postulation.

To conclude, for the purpose of open-ended relection and consideration, I offer a casual autobiographic ‘snapshot,’ from the sensory and cognitive perspective of an autistic individual. Try to perceive the following by ‘thinking through the body.’

“My name is Dawn. I am an Aspie chick,183 artist-musician-writer, scientist, adventurer, eternal scholar, observer and performer of life, trundling in a rusty old wheelbarrow along the rocky road towards a Ph.D., lipping the pages of imagination, creating dog ears, making splotches, humming in and out of tune, dancing around polyrhythmic- chromatic-pandiatonic mental ires, lying and falling, meandering in and out of discombobulation and obdurate revelation, gazing at pulchritude, picking up sound

183 “Aspie” is an affectionate term used by autistic individuals with Asperger’s Syndrome to refer to themselves.

BILIOGRAPHY Attwood, Tony. “Sensory Sensitivity.” In The Complete Guide to Asperger’s Syndrome, 271-291. London: Jessica Kingsley Publications, 2007. Baggs, Amanda. “In My Language,” http://www.youtube.com/watch?v=JnylM1hI2jc, accessed 15 August 2012. Calvert, Gemma, Spence, Charles and Stein, Barry E. eds., The Handbook of Multi-sensory Processes. Cambridge, Massachusetts: MIT Press, 2004. Grandin, Temple, and Johnson, Catherine. Animals in Translation: Using the Mysteries of Autism to Decode Animal Behaviour. Simon & Schuster, 2004. Happé, Francesca, and Frith, Uta. Introduction to Autism and Talent, ed. Happé, Francesca, and Frith, Uta. New York: Oxford University Press, 2010. Klin, Ami, Jones, Warren, Schultz, Robert, Volkmar, Fred, and Cohen, Donald. “Deining and Quantifying the Social Phenotype in Autism.” The American Journal of Psychiatry vol 159, no. 6 (2002): 895-908. Leekam, Susan R., Nieto, Carmen, Libby, Sarah J., Wing, Lorna, Gould, Judith. “Describing the Sensory Abnormalities of Children and Adults with Autism,” Journal of Autism Developmental Disorders 37 (2007): 894-910. McGurk, Harry and McDonald, John. “Hearing Lips and Seeing Voices,” Nature 267, (23 December 1976). Polansky, Ronal M. Aristotle’s De Anima. New York: Cambridge University Press, 2007. Snyder, Allan. “Explaining and inducing savant skills: privileged access to lower level, less-processed information,” Philosophical Transactions of the Royal Society of Biological Sciences vol.364 no.1522 (2009): 1399-1405. The American Psychiatric Association, Diagnostic and Statistical Manual-IV Text Revised [DSM-IV-TR], 69-70. The American Psychiatric Association, 2000. waves, tasting, smelling, hearing, caressing, embracing and learning new ways to comprehend and breathe. What more could anyone wish for?”

ACKNOWLEDGMENTS

Grateful thanks to my fellow autistics and friends, for your generous personal and collective insights of the eclectic and wonderful world in which we live.