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 field 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 scientific 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.”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 flow almost uninterrupted from early twentieth century ‘scientific’ practices geared towards destruction and abuse of the disabled. The deficits-based, medical model of autism dominating the field 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 findings, however, Kanner’s body of work now seems 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.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:
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.
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 find 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-filled orchestral stretto. On one side of the unfolding dissonance, popular and social media promulgate sensationalised characterisation and commentary, and well-financed 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;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..
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 Classification of Diseases (henceforth referred to as ICD) published by the World Health Organisation. A great deal of argument has been generated around specific details within the structure and emphases of diagnostic criteria, however, the main contention emerging from a large and growing body of autistic self-advocates centre around the pathological approach and language used to define autism. According to the DSM 5 diagnostic criteria for “Autism Spectrum Disorder,” key impairments include “persistent deficits in social communication and social interaction across multiple contexts” and “restricted, repetitive patterns of behaviour, interests, or activities”. Included in the sub-categories are “deficits in social-emotional reciprocity” and “deficits 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, fixated interests that are abnormal in intensity or focus” and sensory idiosyncrasy are also listed as behavioural anomalies.The ICD criteria are similarly worded, and the various forms of autism are classified under the term, “Pervasive Developmental Disorders.”
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, deficits-based approach is for the most part detrimental to forging a more accurate perception of the neurological condition along with inclusive social affirmation. 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 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 scientific 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 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.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.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 and forth directly between autism advocates and Baron-Cohen himself.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.Re-examining the thoughts therein, five years on, I realise that this marked a milestone in the evolution of my own 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 find 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 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 terrified 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 reflect 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 deficits-focused language.
Figure 2A parody of the neurotypical social realm.
When I first began researching autism, I accepted without question the opinions and findings of experts in the field. I employed the same language and paradigms of the traditional deficits-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 ‘mind-blindness’ and impaired Theory of Mind – a deficit 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 insufficiency is still worn by many autists today, a forceful legacy which autistic self-advocates are fighting 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.
AUTISM AND THE SELF-OTHER CONUNDRUM
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.
(Untitled – Dawn-joy Leong, 2014)
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 flaws in prevailing theories and practices surrounding autism. In September 2013, I presented a paper at a conference in Mansfield College, Oxford University. In this paper, entitled “Reciprocating Self and Other – lessons from autism,”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 specific 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 Leong
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 of Self and Other, persistently and consciously grasping for juxtapositional comfort within the confines 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 conflict, antithetical existential and experiential states.
In the DSM 5, a main diagnostic criteria for autism is “persistent deficits in social communication and social interaction across multiple contexts,” in particular, “deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation.” 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 communication is not merely uninteresting but requires effortful mental calisthenics, to flit from one topic to another, skimming the surface without purposeful direction and never really delving into any significant 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 pasof commandeering the conversation and delving too deeply into the topic, to the discomfort of the non-autistic gathering.
My own seemingly fluent ability in the art of ‘chitchat’ is deeply rooted in a childhood steeped in musical theatre, as a connoissuer 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 ‘personification,’ becoming and performing ‘The Being.’ I wrote, acted in, directed and produced my first 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 first 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 mimick 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 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 librettosthat 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 justaposing 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.
IN THE REALM OF THE SENSES
is ringing in my ear
soft rotting vegetables
painting nausea in the corner
a room full of sweat beads
on fine tentacles
crackly long nails
ouch! it is painful!
though it’s your skin
yet my ear
(“ear” – Dawn-joy Leong 2016)
Sensory idiosyncrasy is a hallmark feature of Autism Spectrum Condition. Scientists have identified 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.Other aspects include difficulties with balance, and unique patterns of proprioception, interoception, and exteroception. Hypersensitivity may be described as unfiltered, amplified reception of sensory stimuli such as light, sound, texture, taste, smell, touch, 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 specifics depending on the individual’s sensory profile. 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 specific 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.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 fine motor skills and/or general body consciousness in relation to Self, Other and physical spaces. Intensities also vary according to specific circumstances, and from person to person. One commonality is that sensory atypicality has profound influence 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.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 artificial lighting or bright colours, especially if synaesthesia accompanies hypersensation; acute responses to smells, even those considered quite innocuous by the general populace, sometimes inducing strong feelings of nausea and vomiting, or persistent attraction.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 specific single musical pitches as well as remember melodic lines.A large number of autists also posses what musicians call “absolute pitch” (myself included), which is the ability to identify or reproduce specific musical pitches without the aid of a reference.Other reports focus on visual pattern recognitionand a recent controversial study has claimed that autistic subjects displayed acute visual detection ability comparable to that of eagles.
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.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 filtered 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.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 difficulty in studying the phenomenon. In fact, there are comparatively fewer studies specifically 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 difficulties, 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 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 intensified cognizance is partially responsible for the positive aspects of autism,but does not suggest that all autistics have the potential to be savants. The proponents of this model also agree that a social-first 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 five-year period of study.
At the moment, although empathic scientific 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–crescendoof 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.”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-first paradigm.
INHALING AND EXHALING – Personel 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.
The sensorial rhythmic flow of autistic consciousness, its tempoand dynamics; the stark alertness to relentless minutiae, its conscious and subconscious effects; rippling social-cultural resonances; and the sum total of circumstances surrounding processes in site, space and situation, all carry far-reaching ramifications that are too often overlooked or disregarded.
From the outside looking in, pathologising lenses have defined 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 afflictions. The latter are akin to ‘dramatic projections,’ which potency of ostensible impact depends on situational juxtapositions against the Establishment’s fixed 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 defined 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,”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.
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 behavioral or functional deformities, but rather as a compositional 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 people with autism, which may take many different forms, such as flapping of hands, rocking back and forth on the balls of the feet, rubbing certain textures etc. Autistics describe this behaviour as self-calming and sensory regulating, while normative society frowns upon it as aberrant. Below is an excerpt from a blog post about ‘stimming,’ by autistic blogger, ‘Julia.’
“I’ve been told I have a manual fixation. My hands are one of the few places on my body that I usually recognize 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 an automatic feedback loop, touching and feeling simultaneously. I think I understand the whole world when I rub my fingertips together.
When I’m brought to a new place, my fingers tap out the walls and tables and chairs and counters. They skim over the paper and make me laugh, they press against each other and remind me that I am real, they drum and produce sound to remind me of cause-and-effect. My fingers map out a world and then they make it real.
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 of my keyboard. I paid ten dollars more for the right texture on the keys I type on. My hairbrush has to be a specific 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 fits. 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.
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 deficits, 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 firm, sometimes even violent, correction.
“The theories regarding autism have been based on observation of our odd behaviors. Lists of these behaviors make a diagnosis. I have limited independence in selfcare. I have limited eye contact. I have flat affect often. I can’t express my ideas verbally. I have poor fine motor control. I have impaired initiation. I have impaired gross motor control. I have difficulty controlling intense emotions. I have impulse control challenges and self stimulatory behavior.
Whew. When I write that it sounds pretty bad, but I function adequately in this world. I am now 17 and I am a fulltime 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 fit. 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 not less human, and are not doomed to live lives of rudimentary information and bored isolation.” – Ido Kedar.
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, shuffling feet, bells, traffic 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?
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?
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 confines 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, other times comforting and humorous, but always dynamic and alive.”– Dawn-joy Leong
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 find theatrical approaches to communication, for example storytelling, most suitable for expressing my thoughts about difficult 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 protagonist. While seemingly ‘twee’ and bordering on the nonsensical, the story contains consequential observations and questions about normative social frameworks in conflict with autistic modalities. The text and musical score is reproduced in its entirety in Appendix A.
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.
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/
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.
David Smukler, “Unauthorized Minds: How “Theory of Mind” Theory Misrepresents Autism,” Mental Retardation43, 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, & Psychology11, no. 3 (2004): 199-217,accessed January10, 2016, https://muse.jhu.edu/.
Li, Annie S., et al., “Exploring the Ability to Deceive in Children with Autism Spectrum Disorders.” Journal of Autism and Developmental Disorders41, no.2(2011):185–195, accessed, April 15, 2016, http://doi.org/10.1007/s10803-010-1045-4.
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.
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/
“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/Tone-it-Down-Taupe-446945788708219/info?tab=page_info.
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).
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.
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.
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.
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.
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/.
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.
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).
Deborah Rudacille, “Space Cadets,” Spectrum, April 18, 2011, accessed February 25, 2016, https://spectrumnews.org/news/space-cadets/.
Julia Bascom, “Quiet Hands,” Just Stimming, blog post, October 5, 2011, accessed 10 March 2016, https://juststimming.wordpress.com/2011/10/05/quiet-hands/.
Katryna Fury, “Secret Stims,” Textual Fury, blog post, November 29, 2011, accessed 10 March 2016, https://textualfury.wordpress.com/2011/11/29/secret-stims/.
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.”
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.
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.
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.
Dawn-joy Leong, “Le Petit Garçon et Bunnyblu,” Scheherazade’s Sea: A Multi-media, Multisensory Installation and Performance, (M.Phil thesis, Hong Kong University, 2010).Please refer to Appendix A for the text and musical score. The rough video footage of its 2010 performance can be accessed via this link: accessed April 16, 2016, https://youtu.be/JD8KJX_tcHE.