My work is “a process that palpably, in an act of physical effort, carves a life of its own in the researcher’s mind.”[1] 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 first public event, Autism MeetUp 2016.[2] 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 floor, 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 filled 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 first 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.
Figure 31 Sonata in Z miniature at Autism MeetUp 2016.
Reporting along the conspicuous dimension, my artwork has attracted positive feedback and interest from visitors, reaching beyond the autism community to the neurodivergent, some of whom share similar challenges to those highlighted and reflected in my work. In addition, photographs, videos and soundscapes posted online[3] and via social media[4] have reached diverse audiences, generating interest and discussion beyond ‘in-person’ interaction.[5] In addition, subject to funding approval, I hope to be participating in a transdisciplinary research project focusing on sensory idiosyncrasy and designing conducive spaces and environments later in 2016.[6] Not wanting to somehow sound inflated, 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, 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 define 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 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 finale 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 scèneis the result of multiple factors colliding inside defined space suspended in time and place, creating a maelstrom of dissonant events and confrontations. Such a bizarre drama may at first 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.[7]
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’ actions[8] when she senses that I am entering into or incapacitated by mind-body 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 final 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 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 munificence.
Figure 32 The ‘million-dollar view.’
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 first day, Lucy lost one third of her elegant long tail in a moment of callous neglect.[9] The days to come were filled 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 organizing 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 actualization, and the sense of obligation to perform extrinsic social mimesis, feeding off hapless Self-Other dichotomies. I became the forlorn and desperate Poirot Lunaire[10] 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.[11] 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 flicker,
A reflection of your presence,
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 flicker
A reflection of your presence,
Then I shall know within a peace,
Despite unanswered questions.
(Questions, 2000 – Dawn-joy Leong.)[12]
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”[13] 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.[14]
“the subaltern has not only learned to speak, it has also begun to organize” … – Ralph Savarese.[15]
This situation confronted me with consciousness of the stark discrepancy between the crescendo of the collective autistic voice and the floundering, 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 believed 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.[16]
As the collective voice of autists is 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
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 fixe that refuses to be silenced.
Broken integrity – organic severence
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:
“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.”[17]– Bunnyhopscotch.
Figure 33 “Heartbroken” – photographs by Dawn-joy Leong.
My grieving continued, a stream of mute lamentations flowing 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 flimsy and volatile divide between houseguest and recipient of charitable largesse, I felt it incumbent on me to plunge into the mêléeof 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 confident, happy and independent dog, but now, she became clingy and insecure, did 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 diarrheoa, collapsing from dehydration and exertion, and a traumatic rush to the emergency vet hospital at 2.30am one Friday morning in the final week of January. I was physically spent, mentally exhausted, sensorially overloaded and financially 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.[18] We started a new routine, and I was finally able to plunge headlong into a euphoric flurry 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.
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 specific 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 fire 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 filled 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 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.[19] 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.[20]
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 empathy[21]towards developing empathy for the autistic existence.[22] At the same time, the mission of empathic endeavour also belongs to the autist: empathy for autistic Self, finding 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 exemplified by my Trilogy of Roaring Whispers 2013, Little Sweets 小甜心 2014and 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.
Figure 34 Installing the work 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, fulfilling 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. 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 confident tritone chord on E flat. The duet is embellished occasionally by interjecting ambient noises, but it remains benevolent and politely unobtrusive.
Figure 35 Room with a view: order and structure.
My bedroom is in my mother’s ground floor 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 superfluous social performance and time-sapping obligations, I am able to slide smoothly back into intense focus without generating any significant 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 consolation, along with some non-human warmth and companionship, even as I yearn to be reunited with my Lucy.
Figure 36 Tiny and Bizcuit – canine helpers.
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 defined 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 continuoin a piece of 17thcentury 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.
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, find 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 sacrificing 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.
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 finally, 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.)
Footnotes
[2]UNSW Autism Research Group, “Autism MeetUp 2016,” http://www.autismmeetup.org/autism-meetup-2016/
[3]Scheherazade’s Sea Blog: https://scheherazadessea.wordpress.com/posts/
[4]Scheherazade’s Sea Facebook Community Page: https://www.facebook.com/scheherazadessea/
[5]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.
[6]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.
[7]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.”
[8]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.
[9]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.
[10]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 find 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.
[11]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.
[12]Dawn-joy Leong, “Questions, 2000,” YouTube, Sep 4, 2011, accessed April 17, 2016, https://youtu.be/U275MkBLBNw?list=UUu4MkOkGkGzcx6lKIT-zZVg.
[13]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.
[14]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.
[16]19thcentury 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.
[17]Dawn-joy Leong, “Heartbroken,” Bunnyhopscotch, blog post, last accessed April 17, 2016, https://bunnyhopscotch.wordpress.com/2015/12/02/heartbroken/
[18]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 neighbor, who also owns a greyhound, introduced us to the group.
[19]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.
[20]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/.
[21]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.
[22]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.
Dawn-joy Leong 