Reciprocating Self and Other – lessons from autism by Dawn-joy Leong

Conference paper presented at the Inter-Disciplinary.Net conference,

Strangers, Aliens and Foreigners

Thursday 5th September – Saturday 7th September 2013

Mansfield College, Oxford, United Kingdom.

(This paper was first published in the ebook, “Experiencing Otherness: Multidisciplinary Perspectives”.)

Abstract.

Culture is the agglomeration of values, customs, and communication systems identifying groups of people, where demarcations can be geographic, economic, intellectual, or even neurological predisposition. In this paper, I shall discuss Autism Spectrum Condition as a mental culture, and investigate Self-Other identities from the perspective of a researcher-artist with Asperger’s Syndrome. Autism is widely portrayed by the general media as stereotypes exhibiting bizarre behaviour. Why is autism considered an aberrant existence? In reality, autistic individuals grapple daily with the complexities of Self and Other. Assimilation and communication is very much based on the autistic individual’s ability to grasp and ‘perform’ alien systems and realities. How much should we conform to the cultural tenets of Other at the expense of Self for the purpose of convivial integration, and how much to attend to Self for the sake of intrinsic preservation and need?

In the push for a more enlightened co-existence, some questions require address. When is co-existence considered cultural migration and when imposition? We are often strangers even in our own ‘homes,’ perennial actors and performers of Other, and thereby losing understanding and appreciation of Self. Should it be a compliment or insult when someone declares, “But you can’t be autistic, you don’t look or behave autistic?”

Perhaps a transdisciplinary approach to this conundrum is in order – one that will facilitate understanding and reciprocity between Self and Other.

1. Autism Spectrum Condition – a mental culture

Culture, by simple definition, is the agglomeration of values, customs, and communication systems identifying groups of people, where demarcations can be geographic, economic, intellectual, or even neurological predisposition. I would like to introduce Autism Spectrum Condition as a mental culture, and investigate Self-Other identities from the perspective of a researcher-artist with Asperger’s Syndrome, which is classified as part of the autism spectrum. I choose to use the term ‘condition,’ rather than the more common, ‘disorder,’ as it is my view that this description more accurately describes the complete spectrum as a neurological culture, where the emphasis is not on anomaly, but instead describes a ‘state of being.’

What is the common perception of autism culture? Autism is widely portrayed in the general media as stereotypes exhibiting bizarre behaviour, at times malevolent, other times benign, eccentric and comical. In some cases, even autism support organisations portray autism as an enemy to be conquered and annihilated, rather than a unique culture to be understood, accepted and embraced. In the first half of a controversial video by Autism Speaks, ‘I Am Autism,’ autism is personified as a pernicious bogeyman out to snatch the souls of your children and cause appalling destruction to your life.[i] Excerpts from the transcript follow:

I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live.
And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency.

I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams.

The second half of the video labours the point that it is only with the love and support of non-autistic family and support services that the ‘evil demons’ of autism may be exorcised. There is no mention of the special abilities of autistic individuals, nor the monumental effort an autistic person makes in order to co-exist with neurotypical (non-autistic) constructs. The contrast in this deliberately emotionally loaded video is absolute: the negative force is autism, and the positive is non-autistic. It is no wonder, therefore, that this video was met with an enormous wave of protest from the autism community the world over. To us, propaganda such as this is not merely insulting, but also menacing and bigoted: it makes us strangers within our own family networks from the very start, sets our very closest allies against us, and creates a false ideology that we are recalcitrant problems badly in need of rehabilitation (and often even forceful correction). If a similar piece of publicity were to emerge about any other racial, religious, intellectual or social culture, or even any other physical or mental disability, it would be quickly rejected and condemned as racist, xenophobe and discriminatory. However, this video remains widely disseminated, masquerading and accepted as the truth, and the voices of protest from the autism community remain largely ignored.

Although autism diagnoses are on the rise, as more is being discovered about this neurological culture at the scientific and clinical level, there is still an appalling lack of balanced understanding among the general populace, who are being fed a mixed diet of fallacy, hype and false hope by the powerful media. It is hardly surprising, therefore, that as soon as the autistic person steps outside his or her own inner sanctuary, he or she is enveloped by estrangement in multiple forms. For many, there is no safe sanctuary: the family is frequently a battleground of misperceptions, unmet expectations, and discontentment, with many parents preferring to subscribe to popular hearsay, Hollywood hype, and misguided religious instruction rather than to research scientific fact, while the world outside is ever more hostile and daunting. This widening gulf has led to a great deal of anger and frustration among many in the autism community. In fact, the strong feelings voiced online by a growing number of autistic individuals point towards a developing subculture of disenchantment, frustrated defensiveness, and an unhealthy ‘us versus them’ outlook, especially among the young.

Why is autism considered such an aberrant existence? There exist a plethora of possible reasons, ranging from the complex problems encountered by neurotypical society when dealing with those considered ‘severely low functioning,’ to the social awkwardness of the ‘high functioning.’ Regardless, 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. Our very existence not only embodies a complex conundrum, but also very often shines a bright and penetrating light at the prejudices and bigotries that lie beneath the surface of even the most politically correct, established social systems. On the one hand, when juxtaposed with the functioning constructs of neurotypical society, autistic individuals are clearly disadvantaged, and therefore, our mental culture is classified as a ‘disorder.’ However, on the other hand, regardless of where one may belong on the autism spectrum, what are generally perceived as inherent weaknesses may at the same time translate into remarkable strengths and abilities. For example, the inherent detail-focused cognition of autism predisposes us to notice patterns, slight changes in order and/or disorder, and minutiae;[ii] our hypersensitivity traits[iii] give us the ability to detect subtle nuances in different sensory environments at a wide range of levels; and our literal, logical thinking style, which veers towards the concrete and physical world rather than the abstract and social world, lead to very sharp, piercingly frank and honest observations and communication. Such qualities of Self place us on one extreme of the human spectrum, and quite vastly different from the general majority of Other, that we represent an uncomfortable threat to the neurotypical social mindset and system that leans towards uniformity, conformity, and ‘sameness.’

 

2. The Autism Conundrum – Self vs. Other

There is a popular saying among the autism community, ‘If you meet one person with autism, you have met one person with autism.’[iv] Autism is a heterogeneous spectrum, and, just like any other culture, there exist endless possible permutations and combinations of characteristics, which make each person a unique individual. What are the salient features of autism that bind such a wide array of individuals together in one common mental culture?

According to the DSM5 diagnostic criteria, autism is characterised by ‘persistent deficits in social communication and social interaction across multiple contexts,’ (for example, ‘social-emotional reciprocity,’ implicit, non-literal or non-verbal communications, and ‘developing, maintaining, and understanding relationships’), and ‘restricted, repetitive patterns of behaviour, interests, or activities,’ (including repetitive motor movements or echolalia, adherence to routine, extremely intense focus on subjects of interest, and sensory anomaly such as hyper or hypo sensitivity).[v]

A fact not acknowledged enough by science is that the ‘persistent (social) deficits’ refer only to autism culture juxtaposed with neurotypical social constructs. In 2001, neuroscientist Simon Baron-Cohen proposed that autistic individuals are impaired in Theory of Mind, that is, ‘mindblind,’ unable to master implicit, non-literal meanings and intentions in social communications, and therefore also lack empathy.[vi] A great deal of contention against this postulation has risen among the autistic community. One example is Rachel Cohen-Rottenberg’s very coherent and well argued dialogue with Baron-Cohen.[vii] In my own casual blog post in 2011, I asked the question that many other autistic individuals are asking: Whose Theory of Mind, the neurotypical or autistic?[viii] The general implication behind current scientific claims is that autistic individuals are considered socially deficient because we do not easily decipher the subtle nuances of a foreign neurotypical cultural system. The question that begs to be answered is this: if this inability to translate and respond to neurotypical mind sets and communicative nuances represents a severe impairment classified as a disorder, what should be the classification for the neurotypical inability to empathise with and interpret the autistic Theory of Mind, that is, the autistic culture? Should it not logically follow that if one is a deficit, then the other ought to be as well? However, neuroscience is, to date, largely silent on this issue.

In the area of cognition, a majority of autistic individuals posses sensory-based perception, rather than the verbal-based thinking of neurotypical minds. A famous example is Temple Grandin, who helped to crystallise the concept of autistic visual cognition.[ix] In addition, autism cognition is distinguished by an intensity of focus on detail and minutiae, repetition, pattern recognition and intense pursuit of narrow and concentrated areas of interest. It is not surprising, then, that sensory idiosyncrasy is a dominant feature of autism, and hypersensitivity is prevalent. In fact, I would venture to suggest the possibility that those considered non-responsive, hypo sensitive, might actually experience such extreme levels of sensory arousal that the brain subsequently shuts down from the sheer overload. This idea is not scientifically proven, but it is derived from a logical inference from the effects of acute sensory stimulation in hyper sensitive individuals: when the levels are too intense, we become overwhelmed and enter into a state commonly termed as ‘sensory meltdown’ where our brains cease to operate coherently. Most neurotypicals are not hyper sensory, and I am often asked what it is like to be hypersensitive. One illustration I offer is this: imagine all your senses of touch, smell, taste, hearing, and sight, turned up to maximum volume, and never being able to turn the levels down.

 

3. Towards True Reciprocity

Although some sectors in the scientific community label autism mental culture un-empathic and socially deficient, the reality is that there is much to learn from autism in the quest for a truly reciprocal and mutual understanding between cultures, and between Self and Other. Autistic individuals grapple daily with the conscious complexities of Self and Other, possibly far more than the neurotypical majority. Painfully aware of being strangers, aliens and foreigners, autistic people take great pains to learn the ways of the neurotypical Other. How well we assimilate and communicate is very much based on our individual ability to grasp and ‘perform’ alien systems and realities, since the neurotypical world shows little or no interest in understanding and functioning within the culture of autism. This situation pervades all dimensions of social connectivity, even within one’s own home.

Autistic individuals do not disdain connectedness, nor are we cold, emotionless beings that shun intimacy, but we merely possess different styles of expression and enjoyment. For example, rather than shouting ourselves hoarse while making small talk in a noisy bar over drinks and food, we prefer to form bonds while sharing our subjects of interest, or working on practical projects together. Nevertheless, because we want to build bridges with neurotypicals, we force ourselves to socialise according to neurotypical norms, knowing that we will pay the heavy price of sensory overload or even meltdown after every encounter. Many of us do not habitually express our love in physical hugs or touching, as there are myriad smells and tactile barriers to conquer; nor are we naturally inclined to say the ‘right’ things to make the neurotypical Others feel good, because our minds are more comfortable with literal and factual articulations. However, we deliberately and painstakingly observe, learn and practice the neurotypical modes of expressions, quelling innate sensory aversions, just to show that we do care. We will go to great lengths to help a loved one or friend in need, without much calculated thought for Self, and frequently to the point where we are taken advantage of, because of our inability to discern the twists and turns of neurotypical interpersonal manipulations. Whether through instruction and expectation from family, punishment and berating from authorities at school, bullying by peers, or structured behavioural programmes aimed at correction and making us more ‘normal,’ (where ‘normal’ is the neurotypical norm, and not the intrinsic autistic norm), we have been compelled, from very early in life, to put aside Self in order to pander to Other, for the sake of survival and amicable relationships. We are constantly grappling with the dichotomous and agonising question: how much should we conform to the cultural tenets of Other at the expense of Self for the purpose of convivial integration, and how much to attend to Self for the sake of intrinsic preservation and need?

There now exist a plethora of pedagogical schemes, claiming to be scientifically based, aimed at behavioural training or support for autism. While there are clear merits to some, especially in the case of non-verbal individuals with severe and specific challenges, the rewards are nevertheless still limited. The majority of these methods seek to correct or even eradicate autistic traits (Self) and make the subjects more compliant to neurotypical norms (Other). Very few are pro-actively sensitive to autism culture, and even fewer purpose to identify and develop the intrinsic qualities of autism so as to use these talents to help individuals integrate into and become contributory forces to the world at large.

In the push for a more enlightened co-existence, some concerns require address. When is co-existence considered cultural migration and when imposition? Strangers, aliens and foreigners in our own familial, geographical, racial and religious networks, we are perennial actors and performers of Other, and thereby in grave danger of losing comprehension and appreciation of Self. Should it then be a complement or insult when someone declares to an autistic person, “But you can’t be autistic, you don’t look or behave autistic!”?

Perhaps a transdisciplinary approach to this conundrum is in order, with science as syllogism and artistic research and praxis as agency, to facilitate deeper appreciation, goodwill and reciprocity between Self and Other. As a multi-artist, I am constantly seeking to address issues that are significant to me through my artistic research and praxis. As an autistic individual, I am passionate not only about autism advocacy, but also about cultivating better understanding between neurological cultures.

‘Scheherazade’s Sea (2010)’[x] was a multimedia, multisensory installation and performance that introduced the inner world of autism through a kaleidoscopic presentation of music, semantic and non-semantic vocalisations, sound, still and moving visual images, installations, story-telling, symbolisms, and expressive movement.

Image 1 – Scheherazade’s Sea, detail, The Rug, tactile and visual engagement. (Photograph by permission, Dawn-joy Leong.)

Image 2 – Scheherazade’s Sea, detail, The Goldfish, symbolism. (Photograph by permission, Dawn-joy Leong.)

Image 3 – Scheherazade’s Sea, montage, Oranges and Milkshakes, multisensory engagement through food and casual conversation. (Photograph by permission, Dawn-joy Leong.)

Image 4 – Scheherazade’s Sea, montage, Finale, multi-art performance. (Photograph by permission, Dawn-joy Leong.)

 

A more recent exhibition, ‘Roaring Whispers (2013),’[xi] was a smorgasbord of tactile, olfactory and visual-spatial sensations aimed at drawing visitors into a first-hand, experiential engagement with the hyper sensory and detail focused dimension of autistic existence.

Image 5 – Roaring Whispers, entrance. (Photograph by permission, Dawn-joy Leong.)

Image 6 – Roaring Whispers, details, montage. (Photograph by permission, Dawn-joy Leong.)

 

Another piece of work very close to my heart is the Haptic HugShrug,[xii] a simple hand crocheted wrap of Merino wool top, inspired by Temple Grandin’s ‘Squeeze Machine,’ based on the fundamentals of deep pressure stimulation.

Image 7 – Haptic HugShrug. (Photograph by permission, Dawn-joy Leong.)

 

In my artistic practice,[xiii] I seek to exemplify the sensory and cognitive features of my world of autism – hypersensitivity and detail focused ‘bottom up’ thinking. The artistic language is highly intimate and personal, reflecting eclectic aspects and experiences of Self, as this is for me the most direct and fluent approach to honest, interpersonal connection. Based on the fundamental principles of the autistic penchant for concrete and sensorial approaches to mental processing and expression,[xiv] each piece of installation is designed to be sensorially accessible and represents an independent, microcosmic entity (the object), which is then combined with many others to form a larger organism (the exhibition / performance). The works are situated within affable spaces where people of all cultural dimensions may participate, interpret, communicate and relate with the work through the senses of touch, smell, taste, sight and hearing. Eschewing the traditional settings of the demarcated stage and art museums where artist and audience are separated by arbitrary divisions, and refraining of employing excessive and distracting high technology, I strive to invite engagement and interaction at the very most primal level: the body.

Although verbal-textual postulation and discussion is important, especially in the context of the neurotypical culture’s preferred mode of communication, nevertheless, instead of engaging in elaborate didactic, my goal as an artist and autism advocate is to promote harmonious dialogue and espouse cultural cohesion through sharing eclectic sensory encounters and ornate cognitive perceptions that inhabit the rich dynamic tapestry of autism existence. This is, after all, the language of autism culture.

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Footnotes

[i] ‘I Am Autism’, viewed 10 June 2013, <http://vimeo.com/20692567>.

[ii] Francesca Happé and Uta Frith, “The Weak Coherence Account: Detail Focused Cognitive Style in Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 36.1 (2006): 5-25, accessed 20 September 2013, doi: 10.1007/s10803-005-0039-0.

[iii] Simon Baron-Cohen, “Talent in autism: hyper-systemizing, hyper attention to detail and sensory hypersensitivity,” Philosophical Transactions of the Royal Society B: Biological Sciences, 364 (2009): 1377-1383, accessed 20 September 2013, doi: 10.1098/rstb.2008.0337.

[iv] Attributed to special needs educator and autism advocate, Stephen Shore, EdD, Professor, Adelphi University, U.S.A.

[v] American Psychiatric Association, “Autism Spectrum Disorder,” in Diagnostic and Statistical Manual of Mental Disorders, Section II: Diagnostic Criteria and Codes, 299.00 (F84.0), 5^th Edition, 2013.

[vi] Simon Baron-Cohen, “Theory of mind and normal development and autism,” originally published in Prisme 34 (2001): 174-183. Viewed 10 June 2013, <http://www.autism-community.com/wp-content/uploads/2010/11/TOM-in-TD-and-ASD.pdf>.

[vii] Rachel Cohen-Rottenberg, Unwarranted Conclusions and the Potential for Harm, viewed 13 June 2013, < http://www.autismandempathy.com/?page_id=1540>.

[viii] Dawn-joy Leong, Theory of Mind – Whose?, viewed 13 June 2013, < http://www.autismandempathy.com/?p=452>.

[ix] Temple Grandin, Thinking in Pictures: and other reports from my life with Autism (Knopf Doubleday, 2010).

[x] Dawn-joy Leong, Scheherazade’s Sea – a multi-media, multi-sensory installation and performance, premiere performance, University of Hong Kong, Music Department, Hung Hing Ying Building (2010).

[xi] Dawn-joy Leong, Roaring Whispers, solo exhibition, College of Fine Arts, COFA Space, University of New South Wales, Sydney (2013).

[xii] Dawn-joy Leong, Haptic HugShrug, group exhibition, Haptic InterFace Exhibition, Koo Min Kwon Gallery, Baptist University of Hong Kong, Hong Kong (2012), and Haptic InterFace Pop-Up Exhibition at Vivid Sydney, Hong Kong House, Sydney (2013).

[xiii] For more recent updates on performances and exhibitions, please refer to my website: http://www.dawnjoyleong.com

[xiv] Dawn-joy Leong, “Art in a Hidden World: Creative Process and Invisible Anomaly,” The International Journal of the Arts in Society: Annual Review, Volume 7 (2013): 29-39.

 

Bibliography
American Psychiatric Association, ‘Autism Spectrum Disorder,’ in Diagnostic and Statistical Manual of Mental Disorders, 5^th Edition, Section II: Diagnostic Criteria and Codes, 299.00 (F84.0). American Psychiatric Association: 2013.

Attwood, Tony. The Complete Guide to Asperger’s Syndrome. London: Jessica Kingsley Publications, 2008.

Baron-Cohen, Simon. ‘Theory of mind and normal development and autism.’ Originally published in Prisme 34, 2001: 174-183. <http://www.autism-community.com/wp-content/uploads/2010/11/TOM-in-TD-and-ASD.pdf>. Accessed 10 June 2013.

Cohen-Rottenberg, Rachel ed. ‘Autism and Empathy – Dispelling Myths and Reaking Stereotypes’. < http://www.autismandempathy.com>. Accessed 13 June 2013.

Cohen-Rottenberg, Rachel. ‘Unwarranted Conclusions and Potential for Harm’, < http://www.autismandempathy.com/?page_id=1540>. Accessed 13 June 2013.

Frith, Uta, ed. Autism and Asperger’s Syndrome. Cambridge: Cambridge University Press, 1991.

Grandin, Temple. Thinking in Pictures: and other reports from my life with Autism. New York: Knopf Doubleday, 2010.

Leong, Dawn-joy. ‘Scheherazade’s Sea – a multi media, multi-sensory installation and performance.’ M.Phil thesis, University of Hong Kong, 2011.

Leong, Dawn-joy. ‘Dawn-joy Leong – website’. <http://www.dawnjoyleong.com>. Accessed 14 June 2013.

Leong, Dawn-joy. ‘Theory of Mind – Whose?’, < http://www.autismandempathy.com/?p=452>. Accessed 13 June 2013.

 

Dawn-joy Leong is an autistic music composer, vocalist, writer and artist, and a Ph.D (Fine Art) scholar at the College of Fine Arts, University of New South Wales, Australia. Dawn-joy lives with her beloved companion greyhound, Lucy, and her obsessions include greyhound digestion, and constructing mutually empathic platforms across neurological cultures through science-based multisensory accessible art.