A stone in my soup: thinking through the autistic body
I cannot walk…
it is too strange…
I must count
one, two, three!
(dance – Dawn-joy Leong 2012)
Living with sensory idiosyncrasy is a multifarious experience of extreme highs and lows. A specific disability may sometimes demonstrate as ability when the situational contexts change. Pioneering autistic advocates Temple Grandin and Donna Williams have been emphatic about the senses holding the key to understanding and therefore embracing and empathising with autistic embodiment. In her books and numerous public lectures, Grandin elaborates eloquently on her own smorgasbord of sensory anomalies: the ways in which textures of fabrics, stitching and fixtures in ordinary clothing can easily trigger extreme reactions of discomfort and physical pain, how auditory sensitivities affect her day to day life, and the challenges faced as a result of proprioceptive difficulties. Grandin consistently places great emphasis on sensory issues and her straight-forward explanations of the complex sensory networks in autism have become valuable resources for the lay person interested in autistic visual thinking and alternative perceptual propensities.
“My top priority for autism research is sensory problems. For many individuals on the autism spectrum, sensory over-sensitivity may make it extremely difficult to tolerate normal environments.” – Temple Grandin
There are myriad differently specialised channels through which autists develop understanding and acquire knowledge of the world around. Rather than the ‘visual thinking’ pictorial style described by Grandin, Donna Williams explains hers as a need to come into corporeal and proprioceptive contact with the objects and processes of learning:
“I largely learned kinaesthetically; through direct physical and hands-on experience and patterning.”
For others, it may be mixed combinations of the visual and kinaesthetic, as well as auditory, olfactory and gustatory. Synaesthesia is also very common in autism, where the environment is accessed and received via inter-sensory associative channels, for example, tasting colours, hearing shapes etc. Autistic savant, Daniel Tammet says he ‘thinks in numbers,’ which he visualises as colours and shapes, and his art and illustrations provide fascinating insights into his visual-mathematical synaesthesia. He provides clear and detailed descriptions of examples: …
“every number has its own shape and character. One is a flash of white light, six is a tiny and very sad black hole. The sketch here is in black and white, but in my mind, they have colours. Three is green. Four is blue. Five is yellow. I paint as well. And here is one of my paintings. It’s a multiplication of two prime numbers. Three dimensional shapes and the space they create in the middle creates a new shape, the answer to the sum.”
(Images not included here for copyright reasons, please refer to original source cited, thank you.)
Figure 4 Daniel Tammet: numbers.
Figure 5 Daniel Tammet: multiplication.
Moving in the body
Proprioceptive challenges are common in autism. Autists grapple with various combinations of fine and/or gross motor skills, at different levels of difficulty. As with many other challenges that autists face, the root of the problem usually lies in sensory idiosyncratic behaviour. For example, where motor skills are concerned, the problem is not isolated to physical coordination alone, but rooted in a complex relationship between multiple sensory stimuli and detail-focused cognition. A simple and yet poignant description of the struggle with motor coordination and assorted accompanying sensory disturbance is this illustrated poster about an autistic child describing the experience of catching a ball.
(Image not included here for copyright reasons, please refer to original source cited, thank you.)
Figure 6 “I couldn’t catch a ball. You people call it ‘clumsy.’ Text by Clint Newton, Illustrations by Mercy Charpentier.
The text reads:
“I couldn’t catch a ball because I was too fascinated watching the crayola-red trails of light come from the thing as it was being tossed around.
The humidity would make my skin feel literally spongy.
The sunlight made the top of my head feel like it was on fire and was boiling my brain; the light caused after-images of the veins in my eyes that would last for minutes at a time.
The grass made me itch in a weird way that felt like the ‘energy’ from the grass was clinging to me like spider webs.
There might have been as well the sound of a bug singing that would make my inner ears itch deep down inside, make them drain into my throat, make me cough and choke.
I could not catch the ball because when you tried to throw it to me, the bouncing hunch and serious, pouting grimace of your pantomime of tossing the ball in order to try to trigger my readiness to catch made you look like a monkey, and I laughed.
My own difficulties with balance is explained in the whimsical poem, “dance,” quoted at the beginning of this chapter, describing the awkwardness of executing what seems a simple task of walking, compared with the more complex ability to dance with fluid ease. Although the poem does not spell out the presence of sensorial-cognitive interferences, they are alluded to by the references to the ‘strangeness’ of the ground, dancing and rhythmic pattern (counting).
As a result of the acute consciousness of sensory-cognitive interplay, actions that may be innocuous to the less observant neuro-majority are often painfully deliberate undertakings for the autist. When walking, I am aware of ‘directing’ my corporeal body and senses, like a conductor of an orchestra or stage director, to ‘perform’ the necessary coordinated movements and maintain smooth control of its ‘flow’ to prevent myself from tripping, or appearing ungainly. Inside my mind, there is usually a musical sequence that forms a background auditory pattern and rhythmic pulse propelling my body into action, much like a musical score. I am also aware of the placement of my feet, legs, arms, hands and even the torso, neck and head, details ‘written’ into the arrangement like an elaborate fugue. If I become distracted and lose rhythmic continuity, I am likely to ‘misplay’ one or more components in this intricate dynamic composition, lose my balance and fall. Since my proprioceptive ability seems to respond best to musical rhythm and pattern, I am able to learn and enjoy executing combinations of sequential movements in the context of dance. This attentiveness to proprioceptivity, especially walking, has heavily influenced a number of my creative expressions.
My video, “Four Thirty-Three,” is about the multisensory and philosophical process of traversing: to me, walking is akin to “dancing inside roaring silence, moving through blurry obfuscation, (while) embattled fragments hurtle through time and space.” Since acquiring my first digital camera with a video recording function over a decade ago, I have been collecting footage of my feet as I am walking. When Lucy, my Greyhound, came into my life four years ago, I began to record Lucy’s paws and our walks together, adding these to my collection. I discovered that she had certain sensory peculiarities regarding her paws, and she made known quite clearly the textures she liked or disliked during our walks. For example, she is averse to walking on wet and muddy grass: she would pause either at the threshold or a few steps into the grass, hold up a front paw, fold back her ears and look intently at me. Once, after a heavy rain, I took her outside for toileting. On our way home, she paused at the grass verge outside our apartment block and resolutely refused to proceed any further. I had to carry her across the three feet of soggy grass. I am sympathetic to her quirks, as I would not like to be stepping barefoot in wet mud myself. Lucy’s walk is also very elegant and dainty, even when compared with other Greyhounds, almost poetic in rhythm and placement.
Figure 7 Screen captures from my video, Four ThirtyThree, 2014.
The video can be accessed here:
The grainy, out-of-focus and shaky video brings to the fore my preoccupation with movement and balance, comprises a blend of footage from my ‘walking’ collection, with the song, “Ginger Rogers Clouds,” by my friend Kateryna Fury, who lives in New Mexico, USA. Fury is autistic, paraplegic, has Ehlers Danlos Syndrome, and describes herself as “an eclectic collection of ideas, a synaesthete who experiences everything with full body contact, and an advocate for disability rights.” Once a fashion model and dancer, Fury reflects in her song, “Ginger Rogers Clouds,” upon her personal journey as an autistic individual grappling with brain damage, PTSD, Ehlers Danlos, issues of pain and proprioceptive challenges. The song was recorded spontaneously by Kateryna, and sung a capella (without musical instrumental accompaniment). The title of her song is a deliberate reference to dance, invoking the spirit of Rogers, and the title of my video is a nod to John Cage’s 4:33. After Kateryna’s song ends, the soundscape ceases abruptly, and viewers are led into a ‘mindspace’ in which the senses must then create their own (conscious or subconscious) soundscapes from internal or external ambient sources as the visual images of walking continue. The thematic material develops later to include scenes of Lucy walking with me, indicating that Lucy has become a very present and vibrant part of my proprioceptive journey. Another short video I made recently on the theme of walking with rhythmic-melodic mental prompting is “walk-dancing,” a simple, randomly looping sequence of walking with Lucy, our shadows thrown onto the concrete pavement, and featuring an old song I had written, “Love,” recorded in 2000. When I reviewed the video I had made, I realised that I was singing my song a capella along the way, and decided to insert the recorded version as a continuation, and to emphasise the illustration of music as the driving force behind my own sense of balance when walking.
On the less convivial side of difference in sensory perception lie the actual impact of pain triggered by over-sensitivity to stimuli (internalised), and serious repercussions on social interaction (externalised), the latter most commonly blamed for social-relational breakdowns. Simply put, it is not easy, and in some cases almost impossible, to maintain the levels of exuberance and jocularity required in most normative social situations when being assailed by invisible stabs, jolts, prods, while valiantly fighting off wave after wave of pernicious asphyxiation and bilious repugnance. Of course, excruciating physical discomfort is also very much part of the grand equation, yet too little understood. A comment I made in an online feature interview by SBS News sums up the conundrum of autistic sensory meltdown in young children, too often erroneously mistaken as temper tantrums:
“If you were non-verbal, a young child, and in grief and pain all day, wouldn’t you be violent?” – Dawn-joy Leong
The poem quoted in Chapter 2, under the sub-heading, “In the realm of the senses”, “your aura is ringing in my ear,” was written in response to one particular social occasion. In order to better cope with the flood of internalisation that inevitably follows sensory encounters during interpersonal exchanges, I often write poems, as I find this the more flexible form of linguistic expression for immediate sensorial expressivity. The scene for this occasion is the living and dining room of a small apartment.
There were two people in the space: a friend of mine, non-autistic and very much social-minded, and myself. I cannot recall the topic of our spoken conversation, as my senses were too inflamed at the time. The sensorial dissonances were all I could recall, and their effects on my nerves are still vivid in my memory bank. As we chatted, my friend began to scratch herself along bare arms with her long fingernails. The sound of fingernails scraping against skin, with accompanying ‘echo bubbles’ from tiny reverberation chambers situated under concave nails and fingertips, was like a jagged quivering blade drawing lines back and forth on my eardrums while miniscule explosions go off underneath the jarring tonalities, sending sharp shattering pain signals through my entire body. Adding to the auditory discomfort, there developed unheeded a sympathetic resonance for the skin that was being mauled so casually and mercilessly.
Were I not (by now) well-trained to ignore my own intrinsic autistic senses to the point of self immolation, I would have let out a long, melismatic high-pitched scream, its frequency, tonality and intensity matching the effect of her scraping fingernails upon my senses, as a spontaneous conversational reply much like in a musical ‘Call and Response’! Indeed, the physical body of that wailing scream did actually form like a foetus inside my mental-corporeal space, but I willed myself not to allow it to be released into the shared atmosphere. I was also desperately controlling my facial muscles so that I would not grimace and wince from unsolicited empathy for her skin, which surface layers were being ripped apart by the nails. My friend obviously felt no pain, in fact, it was probably a comforting feeling for her, but I was not cringing in symbiosis with my friend per se, I was doing so for her skin. Then, there was the element of olfactory reception and riposte. I was wrapped in the acrid blanket of her smell, which became so overpowering that the tentacles of nausea crept up on me, wound around and threaded through me, and began to squeeze me till quelling the urge to vomit became the other internal battle that I had to wage. I could not allow my body the license to interrupt my friend mid-words and run to the toilet to dislodge the demons, nor did I dare to show the slightest hint of its sickening existence.
Why this almost brutal self-suppression? The reasons are simple, one to which many autists, if not all, will readily attest: the desire to not offend Other, and long-term subjugation of Self in deference to the schema of Other, because Other is unable to understand and accept modalities of Self. In even more straightforward terms, “I have to endure your cultural preferences because you have no idea how to endure mine.” The forcefulness of this deliberate tolerance becomes all the more pronounced when it comes to people I value highly in some way or other.
What most people in social contexts seem not to understand about autistic hypersensorial reflexes is that they are involuntary, and not indicative of personal preference. The senses do not respond to stimuli according to an emotional or social ‘like or dislike.’ In the same way as inhalation and exhalation are autonomous reflexes – that is, one does not breathe according to an emotional or social prompting – the sensorial system functions in the way it is designed to function as an entity unto its own. In simple terms, just because my senses recoil at a person’s scent, it does not necessarily mean that I dislike the person, or that I do not wish to be friends. My senses sometimes feel revulsion at the smells emanating from my own body too, depending on the specific circumstances. Sensing – ‘thinking through the body’ – is not a sentimental function, although some strong sensations may evoke emotion-based reactions like fear, longing or amazement. On a social level, it is no wonder, then, bearing the weight of too much sensory information, that I usually have scant recollection of the verbal interchanges that transpire during casual exchanges.
Focusing on the Senses
Autistic self-advocates have been repeatedly emphasising the need to seriously address the issue of sensory anomaly for some time now. In her many public lectures, Temple Grandin vocally and vehemently draws attention to the need for more research about and recognition for sensory perceptual differences inherent in autism. Here, she draws a clear line between sensory disturbance and perceived ‘bad behaviour’:
“You must never mix up sensory problems with bad behaviour. We need to do a lot more research on sensory issues. A lot of these sensory issues are very very disturbing.” – Temple Grandin
Grandin is perhaps the most well known autistic figure speaking on an international platform, but she has not been the only vigorous advocate. Many other autistic voices have added to the call for greater emphasis on autism-specific sensory idiosyncrasy. Non-speaking autist, Amanda Baggs, writes:
“You’ll notice that I haven’t mentioned social skills. That’s because I don’t think autism is fundamentally about that. It’s about differences in sensory perception, cognition, and movement. And the way they interact and blend together. The social problems are out on the periphery” – Amanda Baggs
Yet, practical focus on sensory aspects of autism has been muted in comparison with much more robust focus in areas such as social behaviour and adaptation. On the surface, it seems as if the current lack of emphasis on sensory atypicality may be partially attributed to its exclusion from the diagnostic standards, and this is a view shared by some clinicians and researchers. However, it is my belief that there exists a more cogent underlying aspect to this disproportion, which is rooted in the ‘outside looking in’ perception of autism, where autism is approached from the paradigm of the social establishment as a dilemma to be solved, or even an abhorrence to be eradicated. While effort has been made to understand the unusual sensory world of autism, it is nevertheless examined largely as a phenomenon of unwelcome dissonance, under the microscope of the pathology, which eschews autism’s internal, empirical and experiential domains. Hence, even among the occupational therapies that recognise the importance of addressing the senses and therefore claim to centre their efforts around sensory integration, a closer look at approaches and language employed by practitioners reveal that these, too, are fundamentally aimed at ‘re-calibrating deviance’ in order to better align with acceptable social standards.
It is disturbing, to say the least, for any autist searching the internet for help with sensory related struggles, to find descriptions such as these. (I have underlined the specific words for ease of visual access and clarity, and my responses follow the quotes.)
“Sensory-based approaches to treating Autism Spectrum Disorders (ASDs) concentrate on correcting or improving the body’s abnormal response to external stimuli.”
What are we ‘correcting’ and who dictates the perimeters of ‘abnormal response’? To the autist who is stimming as a means to calm overwrought senses, the flapping of arms and hands is actually a normal, positive response, and thus not in need of correction. In addition, when this natural way of self-calming or self-regulation is ‘corrected’ and taken away, what can be offered in its place? Is the purpose of this ‘correction’ to make the autistic person more socially acceptable to the neuro-majority, or for the intrinsic wellbeing of the individual?
“This therapy uses repetitive exercises to help a child experience touch and other sensations more accurately.” “Sensory integration therapy is intended to teach the brain to react more efficiently to sensations.”
The term ‘repetitive exercises’ begs the question whether this may be a socially acceptable reference to rote force. As for the claim regarding touch and sensation, it is hard to see how a non-hypersensitive therapist may be able to teach greater accuracy and efficiency in response to stimuli. What and whose measure of accuracy and efficiency does this statement refer to?
“The goal of Occupational Therapy is to foster appropriate responses to sensation in an active, meaningful, and fun way so the child is able to behave in a more functional manner.”
Again, the question arises: what constitutes appropriate response, and who is the authority that decides the measure of meaning in the ways the autist senses the world? How is a behaviour certified as functional in one context and not in another? As for the claim of ‘fun,’ one wonders whether this is skewed towards neurotypical perspectives of what constitutes fun, or the autistic person’s frame of reference?
It is not that autists do not feel the need for well-designed and effective help to address the difficulties of balancing and coping with divergent sensory perception and daily living, quite the contrary. However, the language employed by the Collective reflects the prevailing attitude of those claiming to offer science-based mitigations, which is biased against intrinsic functionality, and leaning heavily towards the deficits-based model of fixing what is widely (mis)perceived as a grave social predicament. When viewed from within the intrinsic domain of autism, such forms of rigid ‘correction’ and ‘rehabilitation,’ many boasting data-based success statistics, come across at their most benign as “aimless buzzing around the campfire of neurotypical bonhomie” and at worst, oppressive forms of despotism.
Very often, unorthodox sensory-cognitive systems have contributed to richly unique ways of observing, assimilating, and re-presenting internal and external domains. In fact, a great deal of creative achievement by autistic persons stem from atypical sensorial characteristics. For example, in Temple Grandin’s case, hypersensitivity to touch – aversion to unsolicited touch, yet craving the comfort of intense pressure – led Grandin to design and construct her “squeeze machine,” which has inspired many other devices based on similar concepts of deep pressure stimulation. Her empathic awareness of the sensory realm of animals and the ability to visualise and draw precise plans led to groundbreaking animal behaviour research, while Grandin’s humane restraint systems and cattle loading methods for the lifestock industry are world renowned. In my case, my relationship with my dog, Lucy, has led me to explore trajectories of thinking and approaches in my artistic practice which I would not have been inspired to notice if I had confined myself to the domain of human interaction.
There is no question, however, that the unusual sensory features in autism cause a great deal of discomfort (and even agony, at times) to the autist on a constant and daily basis, and this most definitely needs significant and effective mitigation. The difficulties faced by autistic persons with sensory atypicality are numerous. Among these challenges, two main areas in need of systematic attention are modulation for the purpose of alleviating negative aspects on Self, and nurturing unique abilities by channelling sensory differences into viable and satisfying creative output. These ought to operate symbiotically and simultaneously, with equal consideration, and the fundamental goal should be the wellbeing of the autist, rather than fitting in with comfortable expectations of society. Perhaps, if there were more regard and empathy for the innate autistic embodiment, society at large may reap far greater benefits from reciprocal co-existence than does the current preference for anachronistic and discriminatory perspectives and pedagogies.
In essence, what is at stake is the fundamental priority of focus that pervades current autism research and practice. One wonders whether this imbalance in primacy of attention is simply because the multidimensional intensities of the autist’s sensory world holds little meaning and interest to anyone other than the autist, whereas the accompanying ‘odd’ behaviours challenge and impinge upon wider society in ways uncomfortable to general expectations of the ‘acceptable normality,’ and hence deserve punitive ministrations. Does research and practice strive for better understanding of autism as an intrinsic nature-of-Being, or is the sole focus that of solving an uncomfortable and undesirable ‘problem intrusion’?
“I have nothing to say, and I am saying it.”
Autistic persons suffer overwhelming strains on capacity for socialising within the prevalent, acceptable and popular frameworks. The side effects of such effort can be debilitating and longlasting. Prevalent modes of interaction, expression and communication lean heavily towards linguistic semanticity. It is largely through the spoken word that emotional significances, communal messages, interpersonal reciprocities and crucial information are relayed and exchanged. For example, it is common to come across complaints in social media forums from non-autistic parents of autistic children about the lack of verbal utterances that, to the non-autistic parents, signify love and emotional bonding. For example, in an article on the Daily Mail, an actress touting a pseudo-scientific diet ‘cure’ for autism was quoted as saying this about her autistic son, “Like lots of mothers of regressive autistic children, I was desperate to get my child back. I would have done anything for a smile or a cuddle, or to hear him say: ‘I love you, Mum.’ ” Reading the threads on this topic in online forums can be distressing to the autist. It seems as if, for these parents, to hear their child utter the words “I love you!” represents the ultimate in human closeness, and the depth of emotion and rich tapestry of connectedness of the non-verbal or non-speaking autistic child is rendered valueless because of the absence of these three spoken words. In some cases, the parents admit that they know their child loves them, but there is nevertheless a great need for verbal reassurance. Autistic writer, Amy Sequenza addresses the thorny issue succinctly:
“Some parents might find that listening to a child they don’t understand is too hard, they might fool themselves into believing “experts” will give them the correct, fast answer. They would be wrong. As parents, they should be thinking of their children first. Thinking about how the Autistic child is being forced into interactions they are not prepared for, into communicating in ways they still cannot grasp, even as they ARE communicating, even as they ARE interacting, even as they DO have a lot to say.
If you can do this, if you can really listen to your Autistic child, you will never be worried about when they will say “I love you”. You won’t even think about these words being SPOKEN because you will be LISTENING to them in so many different ways.” – Amy Sequenza.
It is encouraging to note, however, that there are increasing numbers of parenting groups and individual parents of autistic children who are keen to glean insights from adult autists and parents who are themselves autistic, and enter into meaningful, mutually supportive conversation. One parent of autistic children, whom I met during my research group’s event, Autism MeetUp 2016, recently sent me a very useful link to a blog post with a list of autism organisations which are disrespectful to the native autistic paradigm and that promote eugenics or a cure for autism, and a list of resources that address autism from an inclusive perspectives, managed mostly by autistic persons. These parents of autistic children may be in the minority at this point of time, but it is encouraging and heartening to know that the groundwork towards reciprocity is being laid for a more promising dialogue surrounding autism.
The sensory-cognitive modality of the autist conveys messages in a very different parlance, and its nuances are too often misinterpreted by the neuro-majority as social aversion, social phobia, or a selfish disregard for the non-autistic Other, because the paradigm of the social-emotional person is different from that of the detail-focused sensorially-connected person. Many non-autistic individuals would readily admit that not all communication needs to be worded, yet there remains an innate reliance on wordedness to satisfy emotional and mental needs. On the other end of the verbal vs. non-verbal quandary, autistic individuals who are not categorised with ‘verbal impairment’ are also often ridiculed and declared socially inept when their use of words tends towards the bluntly honest and/or precisely pedantic.
There seems to be an ironic impasse where worded intercourse is concerned: the autist who is non-verbal, non-speaking, or struggling with the language of words in an intensely verbal world is callously labelled an indescribable tragedy, while the autist who has mastered the technicalities of linguistic execution but without its accompanying social applications are pronounced offensive travesty. It is no wonder that the vast majority of autists report deep dissatisfaction with this dominant interactive modality. The opening sentence of Grandin’s now famous book, “Thinking in Pictures,” is characteristically direct and to the point:
“I THINK IN PICTURES. Words are like a second language to me.” – Temple Grandin
Donna Williams had this to say about words:
“Without the use of gestural signing, my brain seems to struggle to keep up with putting any concepts to words, and I seem unable to hold them consciously. Even when I do understand them, after three seconds, the meaning of what I’ve heard is mostly jumbled and large chunks of it seem to have fallen away.”
Many autistic persons struggle to grasp not only the locutory lingua franca of the prevalent social world, but even those who have managed to grasp it well, like Grandin, are nonplussed by the apparent overwhelming need for and dependency upon verbality in achieving any acceptable semblance of meaningful interactivity. Temple Grandin frequently refers to the general social populace as the “Yakkity-Yaks,” humorously alluding to their preference for a verbal-focused approach to socialising.
By contrast, personal accounts of autists describe comfortable communication as a tangible awareness of ‘live connections’ between internal corporeal ‘sensors’ and the external material and natural realm. I refer to this as a kind of “crisp consciousness” that undertakes an intrinsically sensory approach towards interpreting, connecting and experiencing empathy with the world of animate and inanimate forms. Perceived from within the sensorial domain, verbal conversation consists of words formed by combinations of mouthed consonants and vowels, threaded into chains of sentences, which semantic meanings unfold sequentially in space and time as they are launched into the atmosphere, punctuating the air at varying frequencies and decibel levels. Verbal parlance, from this viewpoint, constitutes an activity of effort and coordination between brain and body, manipulating and directing palpable physical entities that are being freed from out of the nebulous abstract regions of the mind, now given shape and form, competing one with another for attention and interpretation. It is a phenomenon that, for the autist, can be fascinating, yet disturbing and confusing all at the same time.
I have been asked on many occasions to describe in words what a ‘non-speaking’ or a ‘non-verbal’ day feels like. The two are vastly different states. ‘Non-speaking’ refers to not enunciating words, while ‘non-verbal’ denotes the absence of words entirely. That request is paradoxical in itself: while one may still use typed words to explain the non-speaking state, how does one verbalise the non-verbal? Using words to illustrate any of the two modalities (non-speaking and non-verbal) would represent at best loose generalisations of intricate fabrics made up of interwoven and overlapping combinations, permutations of mind-body states. Words, however, are necessary to convey detailed semantic meaning from Self to Other, especially when wordedness is the main form of communication of the Other.
The written word is far more conducive to the autistic modality than the spoken. Many autists previously considered ‘low-functioning’ because they were unable to speak in words are now communicating via typing programmes on electronic devices. The revelations from this group of autists have hit hard at the rigid and bigoted word-centric framework of functional labeling. Autistic blogger, Astrid van Woerkam, communicates via typing.
“Typing allows me to access my thoughts more coherently than speech. To me, even if when under stress my typing is still grammatically incorrect, it is still more authentic than my speech. Typing, for one thing, allows me processing time. If I use speech, I will forget what I needed to say in the midst of getting it from an idea in my brain to words out of my mouth. For another thing, typing allows some distance, which is what I feel I need to be, paradoxically, more myself. This may be more of an anxiety-related thing than an autistic thing, I don’t know. I just feel that the medium of typing allows me to express myself much more eloquently than speech.” – Astrid van Woerkom
Writer and autism advocate, Amy Sequenza, appeals to the speech-dominant world for acceptance of unconventional expressive modalities:
“Let’s focus on what people say, instead of valuing speaking, or only one method of communication over any other. Everybody communicates. Words are beautiful. Our words have value.” – Amy Sequenza
Julie Endow, another prominent autistic advocate, explains the sensory element in her communication:
“My way of thinking isn’t with words, it’s like words is a second language. In my mind, when I have ideas, it’s in the form of moving colours.”… “In order to be part of the world, I have to translate the sound and movement of the colours of my thinking into words, to connect with other people.” – Julie Endow
DJ Savarese eloquently describes the necessity for a facilitator to help him communicate through typed words:
“… the person fearlessly helps me not to greet the kids directly. If I greet them directly, I get over stimulated, and my feelings grow so strong that holding them inside me is impossible.” … “Another reason why I use a facilitator is to help me focus.” – DJ Savarese
Amanda Baggs offers another angle on a similar theme:
“…language was built mostly by non-autistic people, with the obvious results, and my biggest frustration is this: the most important things about the way I perceive and interact with the world around me can only be expressed in terms that describe them as the absence of something important.
The absence of speech. The absence of language. The absence of thought. The absence of movement. The absence of comprehension. The absence of feeling. The absence of perception.
Focusing on absence is the easiest way to describe the presence of something much more important to me than what is absent.” – Amanda Baggs
The concept of focusing on perceived absence as an alternative sensory space in which is fulfilled richer resonances brings to mind a famous statement by perhaps one of the most influential musical and artistic minds of the twentieth century, music composer, artist, philosopher and mycologist, John Cage:
“I have nothing to say and I am saying it,
In his writings, lectures and musical compositions, Cage vigorously challenged notions of sonic ‘emptiness’ and ‘silence,’ bringing to the fore ideas rich in eclectic diversity not found in traditional Western European Art Music practices. Although Cage’s exploratory and experimental approaches are still seen as stark confrontations to entrenched musical conventions, when contemplated from within autism’s paradigm of sensory-based connectivity and elemental-material reciprocity, his legacy does not seem at all out of place. To the autist’s hypersensory perception, silence is a non-verbal interstice brimming with palpable multidimensional sensory engagements, a richly eloquent ecosystem of meaningful correspondences sublime in unworded cogency. In fact, Cage seemed to associate and relate with sonic elements via intimately personal sensory-aware conduits very similar to that of many autists. To Cage, each articulated resonance bore a characteristic that individually impacted him, he was able to form ‘bonds’ with sounds, tones, combinations of tones, and was inspired by their intrinsic qualities.
“I remember as a child loving all the sounds, even the unprepared ones. I liked them especially when there was one at a time. A five-finger exercise for one hand was full of beauty. Later on I gradually liked all the intervals. As I look back I realise that I began liking the octave; I accepted the major and minor thirds. Perhaps, of all the intervals, I liked these thirds least. Through the music of Grieg, I became passionately fond of the fifth. Perhaps you could call it puppy dog love, for the fifth did not make me want to write music: it made me want to devote my life to playing Grieg.” – John Cage
In the realm of the normative, verbality is so prized that the ability to wield words is a mark of intellectual and functional aptitude. Where autism is concerned, the imposed standardised demarcation between ‘high’ and ‘low’ functioning autism is largely based on the autist’s ability to verbalise and articulate within the framework of prevalent social communication. Herein lies yet another flaw in the reasoning of current systems of measuring autism: functional labels are at best arbitrary, and at worst demeaning. This benchmark is limited and restrictive, it fails to take into account the wealth of intellect and profundity of wisdom that may be inherent and thriving within a different dimension, that is, one which does not place the same emphasis on the communicative systems used by the social majority. According to this traditionally accepted measurement, an autist is therefore considered ‘high functioning’ if verbally capable, while concurrently successful at masking inherent autistic traits so as to appear indistinguishable from the throng in social settings. However, what is not duly acknowledged is that the expectation to perform extrinsically in compliance with the demands of a neurotypical social script places a great deal of stress upon what is intrinsically a sensorially-connected system.
Emma Zurcher-Long is a teenage autistic girl living in New York City. Emma communicates mainly by typing. She is a published author and gives public presentations as part of her passion for advocacy and educating people about autism and neurodiversity. In her blog post, “I am Emma,” she describes her experience and frustration with speaking, what she calls “mouth words.” This is most definitely not the mind of a person who can in any way be classified as ‘low functioning,’ however, that was what Emma was pronounced by ‘experts’ in the field of autism, because, among other things, she could not speak as other children did.
““What is your name?” someone might ask. It’s a simple question, but when I try to make the sounds that form my name, other words push and shove their way forward. Instead, “you may not spit,” or “Rosie’s not here!” are examples of seemingly random nonsensical, declarations that come out of my mouth. I call these utterances my “mouth words.” They could be seen as traitors, belligerent bullies who seek the spotlight, but they are not. My mouth words are funny to me, but misunderstood by others. My typed words are hard for me, but understood by many.” – Emma Zurcher-Long
Apart from the internal tensions generated by a predominantly verbal-centric system (speaking and listening to, understanding and responding with words), for many autists, an over reliance on word-based interaction also fails to adequately match and support the richly intricate concrete-intuitive relational topography of autistic embodied experience. Endemic communication systems are insufficient and even ponderously clumsy for the purpose of expressing and communicating the wealth of multidimensional nuances and textural complexities of the autistic domain. For the purposes of conveying the magnificence of such exquisite simplicity, many autists naturally employ symbolic and allegorical vocabulary.
Metaphorical language is of course closely associated with and intrinsically connected to poetry, which allows much more flexibility than prose. It is thus unsurprising that a number of autists feel more comfortable inside this medium. With poetry, one is able to wield typed words to better describe sharply articulated sensations, and at the same time, when spoken aloud, poetry can be a most delightful sensory engagement and performance. Ralph Savarese described this style of communication as “autie-speak,” “a highly poetic language that many non-verbal Auties produce spontaneously on their computers, whether in conversation or in actual poems,” more common among non-speaking autists who use facilitated typing methods.
I do not fit into this category, I was purportedly verbally adept well ahead of most ‘typically developing’ children, and during my early school years, I expertly played the part of the prattling “Little Professor” commonly attributed to Asperger’s Syndrome. It may well be that the linguistic style of the non-speaking autist veers more towards poetic expression than that of the speaking autist, however, although not non-speaking, since a very young age, I have gravitated towards poetry. While I had no problem fulfilling the requirements of essay writing at school, I remained vividly aware of my own proclivity towards worded-fragments, especially when feeling distraught, during a ‘non-speaking day,’ or simply as a response to extreme weariness from the weight of duty to engage in active and entertaining social confabulation.
When I was introduced to the work of Ralph Savarese, it was as if a large doorway to a vast and resonant world had opened before me. The door was a heavy one, which creaked loudly on rusty hinges. I had waited very long for this, and although I began to plunge excitedly into the expanse of literature suddenly made available to me, my ability to read vast swathes of text devoid of visual illustration is somewhat volatile – there are times when my brain seems to disallow any connection between physical text and mental comprehension, and then other times I find myself devouring words with voracious force. Discovering (via Savarese’s writings) that someone else was aware of the autist’s ability to understand, peruse and execute metaphor in language was a thrilling affirmation of what I had already known all my life to be true, but was told otherwise by ‘experts’ in the field of autism. The prevalent stance of autism research is that autists are dispossessed of meaningful language, slow to grasp metaphorical expression,and communication is considered a primary deficit in autism.
Poetry possesses what I perceive as a bodily incarnation with proprioceptive cogency, while lending itself to the fragmented pastiches and montages of sensorial ebb and flow. With poetry, it is almost as if I am physically ‘inside’ the communication, like a dancer, actor or painter, and I am able to touch, taste, smell and feel the movement of the words, along with their embedded fragments of meaning. In that way, I feel an immediate corporeal connection as well as a stronger emotional connectivity with that being expressed. The rhythmic-tonal undulations help to soothe frayed and tattered nerves, while word fragments provide adequate expression without the ponderous labouring of structured sentences. There are no extraneous encumbrances like ‘debris words’ to trip over. Indeed, poetry, according to Savarese, lends itself well to the autistic sensory-infused style of communication because of its “plastic and permeable approach to language.”
Non-speaking autist, Tito Mukhophadyay, describes his sensory-elemental connection in a poem about a cup, “A Simple Cup.”
“Nothing could make me
Its inside was white
and its outside
some patches of colors—
orange and yellow,
here and there
by some one who was perhaps
entertaining his vision
with orange and yellow creation.
It lived on the kitchen shelf
like a smile,
watching all the food preparation
from the kitchen shelf.
Who knows what the smile
No one fed it anything but tea.
Nothing could stop me
from staring at its smile,
its orange and yellow,
randomly patched smile.
It entered my heart
from the kitchen shelf
until it turned into
wanted to leave the kitchen!
Who knows what might have
happened to the cup
The cup, white on the inside,
patches of yellow and orange
on the outside,
turned into a memory.
It returned one dream
to begin this poem.
And ever since then,
at a moment called When,
I began my thoughts
of filling and emptying
that cup of memory—
in orange and yellow patches—
with my story.” – Tito Mukhophadyay
SPACE OF MIND
When I first began on my journey of Self-Other research in Autism Spectrum Condition, writing under the pseudonym “Spunky Kitty,” I pondered in a blog post, “Theory of Mind – Whose?”, the possibility that perhaps autistics possessed a different socio-relational system, a separate ‘Theory of Mind’ from that of the widely accepted majority’s.The more I observed about my own sensory-cognitive functioning with respect to how I relate with the world within and without, and as I read and listened to numerous accounts by fellow autistics, it became increasingly apparent that the relational mind of the autist exists very much in the realm of the sensory.
“There are no words, but instead a beautiful environment where feelings, sensations, colors and sounds coexist. I often think if all humans could experience the world in hi-res, technicolor, surround sound as I do, everyone would be happier. I have come to understand that my mind is not like most people’s. I am Autistic.” – Emma Zurcher-Long
The autist inhabits a Space of Mind. The term, ‘Theory of Mind,’ viewed in the neuro-cultural context, is by now mired in rigidity, bearing somewhat negative connotations because of its contentious imposition upon the measurement of autistic empathic mentalising ability. There is a need for another description for the autistic mentality, a different terminology that will open up new perceptivity. I coined “Space of Mind” because it invokes a sensorial, palpable expanse within which a fecund eco-system flourishes, and an aperture through which flows a wealth of communication and dissemination of ideas. As an artist, space and its inhabitation is of endless fascination to me. As an autist, space brings infinite tapestries of tangibility and engagement.
Within the sensorially ebullient expanse, the preconscious or intuitive autist’s mind is able to learn osmotically, communicating with and responding to elemental and material minutiae in the environment. For example, many autistic persons show a predilection for learning skills and acquiring knowledge instinctively, rather than via common methods of teaching. Donna Williams calls this a “post-hypnotic suggestion,” and recounts how she learned the techniques and skills of sculpture, painting, writing and playing the piano all without needing any formal instruction. When I was three years old, before I was able to read words, I was discovering the wonderful art of Japanese paper folding on my own, spending hours silently deciphering the diagrams in my mother’s Origami books. I became such an earnest disciple of the art that every piece of paper that crossed my path was subjected to metamorphosis by my little fingers, which did not go down well with an older sibling whose sheets of homework were lovingly re-crafted into what to me were vastly improved structures. When I was six, my father bought a piano and engaged a private teacher, thus beginning my journey into the amazing world of ordered sound which people call ‘music.’ However, I much preferred to learn tunes via sensory channels, and gravitated towards ‘playing by ear’ instead of reading the notes on the page, much to the chagrin of my tradition-minded instructor.
Detail-focused cognition is inextricably entwined with the intensity of autistic senses. This perceptual style, called ‘monotropic attention,’ is often misunderstood in a negative light and viewed as undesirable impairment in mainstream educational contexts.
“I can spend all day with one marble. Looking at it, feeling it on my face. One problem with trying to describe this is that there are far more possible sensations than there are words for sensations. So an entire day’s worth of experiences can come out to only one sentence. And it’s harder still to describe the patterns formed between those sensations. Not abstract, logical patterns but concrete, sensory patterns. And those are how I understand and interact with the world.” – Amanda Baggs
While the above perceptual style is far from ‘infertile’ and does not in any way perversely affect the flow of normative social activity, it is nevertheless frowned upon, and expensive ‘therapies’ are prescribed for the purpose of eradicating the outward manifestations of this richly sensorially connected proclivity. Ironically, this modality lends itself most suitably to research and professional practices requiring intense focus and sensitive awareness of novel paradigms, and are qualities most admired in those autists who somehow manage in later life to defy the odds placed upon them by normative social structures. Unfortunately, a great many potentially brilliant minds are frustrated at the very basic level by educators and clinicians, who whose ‘expert’s’ analysis commonly echo the one caricatured in Steve Silberman’s review article, “Autism Inside Out.”
“How might a clinician describe this experience from the outside?
“Patient Amanda B., a 32-year-old female with a pervasive developmental disorder and significant verbal impairment, perseverated with a marble for more than six hours under observation today. (The patient’s mother reports that marbles and other small spherical objects are one of her daughter’s ‘special interests.’) Amanda fixated on the marble for an extended period of time and pressed it against her cheeks for the purposes of self-stimulation. This behavior (not significantly self-injurious) was accompanied by nonsense vocalizations.”” – Steve Silberman
The quote above is a profound piece of satire, which made me chuckle aloud, yet acted upon my emotional senses like a long jagged spear making a slow trail across my corporeal entity, while humming a repeated four note sequence in a Lydian mode, with a sad squeaky vibrato voice.
Personal anecdotes: is anyone listening?
“Many people believe autism describes a simple mind, and that someone like me has no understanding or awareness of my surroundings. My hearing is excellent. Things like the honking noise made by impatient drivers who think the sound of their horn will miraculously clear the road ahead is so intense I can become lost in the key of their horn.”
“It’s the same with light. The harshness coupled with bloated heavy air is so intense I become overwhelmed. I wonder if I am too aware of my surroundings.” – Emma Zurcher Long
I presented a paper at a conference at Mansfield College, Oxford, U.K. in 2013. There were two other conferences running simultaneously, and presenters were invited to sit in if any of the topics interested them. I decided to attend, as an observer, a session on the theme of Communication and Conflict. One speaker stood out from the others. The focus of his presentation was on achieving “broader engagement with the world around us” through willingness to embrace “fundamental mind shifts.” According to the author, one of the channels through which to access this transformation was the practice of meditation. At the end of the verbal presentation, the author asked the occupants in the room to participate in a brief meditation exercise. For three minutes, everyone was instructed to close our eyes and shift our focuses away from Self, and enter into a peaceful middle space of ‘self-voiding,’ with the aim of achieving a finer awareness of interconnectivity. I obediently closed my eyes, along with everyone else in the room.
As soon as the visual conduit was shut off, however, I became even more consciously aware of my already heightened senses. It was as if I had lost the privilege of a distracting filter, and instead of being able to enter into any semblance of ‘meditative blankness,’ the floodgates flew open to herald an aggressive barrage of sensory details rushing into a small timid space. My mind could still vividly ‘see’ the fluorescent lighting flickering above, the four walls seemed to inch their way ever closer towards me, as every occupant in the room remained in their varied positions around the rectangular arrangement of tables. All my other senses began to scream messages of panic about assaultive intrusions. With my eyes closed, I could no longer utilise the visual sense to distract from the constant flow of eclectic sensory conversations, and I soon became increasingly acutely aware of the bodily smells of people seated around me. As a consequence, nausea slowly wound its tentacles around my diaphragm. I felt asphyxiated by the dense heaviness of the air in the room, my skin trying frantically but unsuccessfully to retract from the tiny droplets of damp settling upon its quivering surface. The lady sitting in front of me coughed, and a rancid regurgitated odour of partially digested lamb korma and curried basmati rice from lunch exploded through my olfactory channels, shooting its way upwards into an already pounding headspace and downwards like a searing fire to join the viscid growl of nausea. A sickly sweet smell of cheap synthetic perfumed shampoo blended with sour perspiration emanated from her long hair. Someone across the room dropped a pen, and the sound was like a sharp crack of thunder splitting the charged atmosphere. The texture of the chair covers suddenly started to excoriate, taunting and daring me to scratch and tear at the itch in what would be deemed either most indecorous or labeled as an act of ‘self-harm.’ A little over the one-minute mark, I could no longer bear the horrifying intensity of sensory attack, and I opened my eyes in an attempt to stem the tsunami. I spent the rest of the ‘meditation time’ trapped in my seat, pain suddenly shooting through my legs, writhing in sensory and mental agony as my visual sense was not longer effective in filtering the overstimulation of the other senses.
At last, the three minutes were up, and the presenter asked us to share our experiences. Some members remarked that they were unable to fully concentrate on the act of ‘voiding’ the mindscape, as their minds wandered off to thoughts about food, places to visit afterwards, etc. Many others reported achieving a great sense of peace and serenity, affirming the presenter’s theories on the role of meditation as an agency towards achieving better understanding of and connection with the concept of Other. Mine was the lone testimony of a completely separate experience. I related my horrifying sensory dissonance to the group, and explained how persons such as myself, with sensory atypicality and perhaps also autistic at the same time, may not benefit from this model of approach towards social empathy. A few people entered the discourse on alternative empathies and embodiments with great enthusiasm and interest, in particular, an anthropologist among the group who welcomed my views and drew parallels with the cultures he was studying, and a PhD researcher who vehemently disagreed, insisting that there was only one ‘correct’ and universal social system dictating acceptable ways of communicating, and all deviations were simply ‘wrong.’ At the end of the lively discussion, the presenter politely expressed his reservations about my perspective, and, at the social level, avoided me thereafter at luncheon for the rest of the conference, as did the PhD researcher who insisted on there being only one ‘proper’ social system to embrace. This was a sharp contrast to both their exuberant amicability and almost overpowering friendliness towards me before this session. I found the situation ironic, to say the least, since the main subject of interest in this session was about communication and conflict, and the presenter’s paper claimed to point towards a more heartfelt empathic connection with states of mind outside one’s own. However, it is a social situation with which I am by now quite familiar. Scholarship does not protect one from decisive ignorance, and researchers are humans after all, living under human-centric social-cultural perspectival constraints.
The experience brought a few questions starkly to the forefront. At which point in research and praxis is one novel paradigm superior to another? How does bypassing or sidestepping the clear and vocal enunciations of lived-experience make for better, unbiased and focused research? Is it even possible to achieve a state of complete lack of partiality, even in the so-called non-emotional, neutral scientific disciplines?
‘Data-based’ study – whose data?
In 2014, I took part in a study conducted by a PhD researcher who claimed to specialise in aspects of physiological and psychological empathic and social motivation in autism. I was told in advance that the study would be about emotional vs. cognitive empathy. I remember thinking that I had read a few similar studies on this same subject, but couldn’t recall the exact titles of those papers. “Replication enforces truth,” I recall the words ‘auto-writing’ on my mental blackboard, for no apparent conscious reason. The laboratory was situated in a building tucked away behind another more prominent block. To access the lift that would take me up to the laboratory, I walked through a tunnel-like corridor in the middle of a food court occupying the ground level of the block in front. The combined smells of hot food wound around my neck like a hastily knitted scarf of cheap synthetic yarn that had been retrieved from vats of stale cooking oil. Greasy scent bubbles settled themselves on my hair, and seeped into the fabric of my clothing as I traversed the passageway. The ceiling was low, there was a stifling thick air of oppression hanging around the lift lobby. I sat down on a slimy vinyl seat to compose myself, which was a juxtapositional irony because the grime from the seat hurt the fabric of my jeans, the stale thick air wrapped around me in sickening mockery, and I felt my senses already begin to go into high-alert mode. Thankfully, Lucy, my greyhound psychiatric assistance dog, was with me. Her calm concrete presence, leaning against my legs, reminded me to stay focused on the mission, and being able to establish tactile connection with her warm body and silky soft fur temporarily disconnected my senses somewhat from the assaultive sensory effects.
After checking my iPad for the umpteenth time to make sure I was in the right place, I entered the lift. I do not have a phobia for enclosed spaces, in fact, I actually enjoy being in some cosy spaces, provided the other sensory elements are pleasant. However, lifts in public spaces usually contain myriad smells that gather and stew inside, layer upon layer deposited by each new transient occupant. Thankfully, the journey was not a long one, and I was greeted at the landing when the lift door opened. The researcher showed me into the laboratory, chatting away in a most friendly manner. She held open the first door, and it groaned in mid-tonal jaggedness. I managed to not register the exact pitches, determined to focus on her verbal chatter. A smell of damp and rot, however, rose from the floor carpets in forceful affrontation. I placed Lucy’s mat in a corner, and told her to settle. She looked uncomfortable – she is my sensory-alert dog, after all – but she complied. It was a wet winter’s day, I felt cold, and the researcher switched on a tiny electric heater for me. As it rotated unsteadily on its cheap plastic axis, it grunted and cackled. The mix of damp in the wider atmosphere and the directed drafts of dry air from the heater began to trigger headache and pain in my respiratory passageways.
The cacophonic counterpoint of sensory distress continued.
I am moving between the realm of past and present, the vivacious alacrity and the desperate dismay still a living vocal entity in my memory. It was a very long questionnaire. Tick, tick, tick the boxes. More listening to verbal words. Poco a poco– little by little – the semantic meanings become too difficult to register. I think I am still understanding the gist of it, but truly, I know I have lost the battle for finer detail. The pain mounts, I do not know from where, but it is at this point dancing around my head, like monkeys fighting over a piece of bread tossed carelessly by gawking human tourists. I am filling in the form, at first carefully, but very soon, just fast and furiously because my senses are beginning to tell me that it is imperative to leave the room. Then we move to the computer screen. It is an old, stain and grime encrusted tungsten-tubed box. The screen flickers alarmingly, but the researcher seems oblivious. The lights above are screaming, and still the researcher takes no notice. She affixes onto various parts of my skin little electric sensors, for data gathering – something about heart rate and whatnot. I felt myself slipping into illucidity. My body was there, my trained responses intact, I knew I just had to continue with this performance of normalcy, because social compliance has been so deeply and forefully ingrained into my consciousness. Then began the numerous tests on the computer. Poorly drawn green and blue stick figures (which I am told ought to represent human beings) appear on the flickering screen, while the light from the window reflects against the screen obscuring some parts. Then a few short video clips appear, and I notice with a wry grimace the vintage style of their clothes, the grainy texture of the images, all probably very old clips from the 1970s or 1980s. I am supposed to make judgments about what they are trying to convey, and about my ‘feelings’ at the time. I struggle bravely onwards.
The minutes turn into hours. Tick, tock, tick, tock. Lucy gets up from her mat, she is doing her job as my sensory alert dog. She is telling me to leave this terrifyingly oppressive space. She is telling me that I am verging on meltdown and I need to perform some form of Self-intervention to interrupt the process. However, the tests are not completed yet. No. I have to stay. I am sorry, Lucy. I feel the rippling vibrations emanating from her being, they are expanding, getting louder and louder, poco a poco. I know she is becoming extremely anxious for me, and perhaps even for herself. The door of the toilet in the next room utters a long, shrill and slightly warped C-sharp every few minutes, announcing the arrivals and exits of perusers. That dreadful little oscillating heater is droning a low, somewhat irritatingly wobbly tritone of E flat and A – scratching, bumping, teetering as it turns. The room becomes too warm, the smell from the carpet begins to reach beyond olfactory channels and permeats my skin, wrapping around my eyes, and I taste it in my tongue as I exhale. Empathy? What is empathy? Oh, yes, I am here as a test subject in some study about empathy? The space between my eyes contract into a tiny tight earwig. I do not remember anymore what I am instructed to do. I just click at the buttons before me while the poorly drawn stick caricatures perform their grisly contortions.
Finally, I am informed that I have come to the end of the ordeal. The sensors are removed and I am allowed to leave. I literally force polite social words out of my mouth, my tongue and lips felt soaked in a sour yellowish mire, swollen and heavy with air-borne filth such that they detach from my conscious sense of belonging in the body. I think I thanked the researcher, I must have, though I cannot be certain, and left. Lucy was most relieved too. However, it was not yet the end of the sensory nightmare for me. We had to make out way back to our lodgings, but that is another story, another mini-chapter in the ongoing never ending saga of life with autistic hypersensitivity, set in a world that seems so lacking in sensory awareness.
A couple of days later, after my brain had recouped some of its lost verbality, I wrote an email to the researcher, simply informing her that I felt the session was overly long, the physical space was inclement, and the data she was gathering would be compromised, because she failed to take into account the sensory acuities and possible integration challenges of her subjects. Her reply came about three weeks later. “Obviously being a PhD student I don’t have a lot of control over the lab and I share it with many other people.”She signed off with, “I have passed on this information to my supervisor.”I was unsure what to make of it then, and I remain somewhat nonplussed and perplexed even now.
Some months afterwards, I noticed that the researcher had presented a paper at a supposedly well respected autism conference, and later, an article on the same subject appeared in a journal. I note the claims made and realise that she had already predicted the outcome during her conversation with me, that is, at the beginning of the test session when my mind was still able to coherently register spoken chatter.
The experience was disturbing on more than just a personal level. I wondered about the many other autistic participants in this study, how they managed to cope, and whether I was the only one who detailed the sensory challenges. It would not be surprising if nobody else brought the issue to the foreground. The study asked for “high functioning” autistic volunteers. Autists, especially those living and functioning in normative settings such as this, would have by now been ‘programmed,’ either casually or systematically via therapies like ABA (Applied Behavioral Analysis) to ‘de-sensitise’ and not react in ways that may cause offense or alarm to the general populace. The reality for many autists is simply that of deliberate self-suppression, and the effort, whether conscious or subconscious, can often be so considerable that the person fixates upon getting through the task at hand in order to escape the overloading situation. Perhaps the majority of autists participating in such laboratory tests may not even be consciously aware that their sensory dissonances would affect the study. In addition, since vocalising the facts of autistic hyper-reality is frowned upon in the wider social context, there would be absolutely no incentive to speak out. Viewed from this perspective, the autist exists as the subaltern acculturated to neurotypical colonial dominion: innate identity is suppressed, and deemed unworthy of notice or affirmation.
Why is the voice of lived reality being deliberately silenced against the enacted façade of ‘superior’ scientific knowledge? What is the purpose of studying a human subject if the researcher does not take time and make sincere efforts to listen to and consider seriously the importance of personal insights from the subject of study? The unfortunate irony of the situation is that if the articulations of autistic persons were better heeded, more accurate data would be gleaned about the nature of the so-called ‘social impairments,’ which have puzzled researchers. Research needs to place greater focus on extant features in the context of comprehending autistic embodiment, examining autism from an organic perspective, instead of persistently looking at aetiological irregularities from a biased, non-autistic viewpoint with the aim to repair what is essentially viewed as broken.
Sensory atypicality may be extremely challenging, however, the ability to perceive outside conventional infrastructures definitely has many powerful benefits. Ignoring this key functional dimension, and trying to counteract its cogency is not only damaging to the autistic individual, but also deprives the wider society of potentially valuable reciprocity.
One may question the importance placed on sensory atypicality where it comes to the autistic experiential dimension. After all, sensory divergence is not the domain of autism alone. However, probing deeper into the autism-specific studies and personal anecdotes about aspects of sensory idiosyncrasy when combined with autistic cognition and essential differences in interactive and communicative proclivities, there seems to appear consistently a crucial, organic contrast between the way the non-autistic person with hypersensitivity processes the world and the manner in which the autist interacts. The social world at large emphasises the centrality of human-to-human interactivity: normative social behaviour remains the central point, and the enjoyment of social activation is an overarching goal. By contrast, autistic sensory-focus appears to concentrate around encompassing connections with and between the animate and inanimate: that is, autists demonstrate a predilection for interconnectivity that is neither confined to nor defined by the human realm.
“My first comfortable means of communicating came from that. It had to do with the way I interacted with and arranged objects. It could be anything from tree bark to a book.
Objects have always been alive to me, and my interaction with them has always felt like communication. Weirdly enough, this has inspired anger in other people. And an intense, condescending need to try to teach me that the whole world is dead and I’m an idiot for thinking I can communicate with things. Someone once said to me, “The way water responds to you is the laws of physics, not communication.” I ignored him, but I wanted to ask how exactly those two things were different. I seem to come with an entirely different set of assumptions about the world than most people do.” – Amanda Baggs
The human to animal dynamic is another common feature in autism. Temple Grandin has documented her connection with animals in great detail and attributes this affinity to her hypersenses and the ability to identify, empathise with and form associations while operating chiefly in the senses. Dawn Prince’s bond with the primates that she has studied is threaded cogently through her compelling narrative, “Songs of the Gorilla Nation.” In a powerful interview, Dawn Prince-Hughes described the moment when she first encountered the gorillas with whom she would eventually spend many years as an anthropologist:
“But then, when I turned the corner and saw the gorillas, I just sat there. I just sat there that day. And I sat there for hours, and I just watched them. And there was just this epiphany, this flood of identification where I thought, these are people, and more importantly, these are people that understand me, and they’re people that I am going to understand for the first time in my life. I’m guessing that’s what most people feel like with each other – most human beings feel like with each other. But I hadn’t felt that before. It was just amazing. They didn’t look me right in the eye for about an hour and a half. They very tenderly waited and kind of felt where I was, eventually glancing over at me really quickly and then putting their heads down again. It was just a very slow-moving, tender social interaction. It’s so much different.” – Dawn Prince-Hughes
Like Temple Grandin and many other autists who have formed intimate connections with animals, Prince-Hughes had this to say about the role of the gorillas in her personal development as a human:
“Yes, the gorillas gave me my humanity.” – Dawn Prince-Hughes
My own experience with animals is similar. As a child, I always felt more emotionally and sensorially connected with animals than with humans. The best memories of my childhood was the part filled with vivid and dynamic interaction with the elements and with the animals that inhabited my home. I collected tadpoles in bottles and glass tanks, avidly watching them grow and transform, documenting the process. There were lizard eggs that I found in the garden and tried to incubate under my bed, sometimes successfully; ducks and chicken in the backyard; and a very special bunny called Floppy who lived in a box in my bedroom. My favourite animal is the dog, though I never really had my own special canine companion until recently, when Lucy entered my life.
LISTENING TO LUCY – an intimate narrative
rise and fall
(Ode to Lucy – Dawn-joy Leong 2014)
My canine child is unwell. I am straining my senses to listen. I am listening to Lucy.
She does not speak the human libretto. Hers is a language of the senses and body. Similar to my intrinsic autistic sense, yet very different, hers is a parallel embodiment to my parallelism. An ironic parody of the autistic-neurotypical interplay: Lucy seems to grasp my nuances far more readily, more eagerly, and with more determined application, than I do hers. As my assistance dog, she is able to sense when I am sensorially overwhelmed and approaching sensory-anxiety overload, and will communicate that information to me, so that I may take practical steps to mitigate the situation and prevent myself from a meltdown. In this respect, Lucy appears to be much more aware of my world than I am of hers, displaying a deeper ability to empathise with me than I am capable of for her. Is this because she works far harder to fathom my world, than I do hers, utilising her superior canine senses to soak up the nuances surrounding my existence whereas I am mired inside my own Business of Otherness? Perhaps the answer lies in an interwoven combination of both, or far deeper reason than I can grasp in my limited human mentality.
I am listening to Lucy.
Her canine realm is hard for me to understand, because she does not speak the worded semantic language of humans. Yet, empathy is an endeavour after all – a labour of will, commitment and, in some cases, an undertaking of deep resonance, a kind of intense connectivity that humans often refer to as “love.”
“Tell me where it hurts, my love!” I utter in hapless human babble, fully aware that she is unable to reply to my enunciation of gibberish. How much does she understand of my wordsome expressions? Scientists say that dogs do grasp a limited vocabulary of human words.Yet, I wonder, how exactly do they process it all? Ah, but it is not my concern today to muse overly long, hovering ignorantly around the science. Right this very moment, all I want is to soothe my canine child.
Pressed against her length – human skin against warm canine be-furred body – I inhale her sensory messages through tactile, olfactory, visual, aural senses with as much profundity as I am able to muster. I watch her with growing concern, she is quivering with tiny imperceptible spasms of muscular contractions, drifting in and out of slumber.
I am listening to Lucy.
Her breathing – rhythmic flow, the sound of air being inhaled and exhaled – seems different. My ears tingle with disquiet, my heart beats harder, and a small nebulous cloud of distress forms just beneath my diaphragm. As if on cue, Lucy’s ribcage moves up and down with every breath, its gestures seem laboured. She stirs, shifts her body and places her head upon my lap. I stroke her, gently massaging soft silken velvet ears. A small groan emerges. After awhile, she moves again, her head now on the bed and pressing against me, an indication that she has had enough.
My senses so inferior, gyrating fears, I know something is not right, yet, I cannot discern clearly enough through the thick smog. I know all is not well, but I am unable to translate into wordedness what little my senses tell. Nobody can help us – who is able to understand our tapestry? We are two, alone together inside our shared cocoon, speaking unspeaking, a strange foxtrot.
Parallel embodiments – in propria persona
Notes for the Worded Other:
This is not a fairy story about ‘anthropomorphic love’. Lucy is a Greyhound. A Greyhound is a dog. To me, Lucy Greyhound is a very special kind of dog, but a dog, nevertheless. I have no fanciful emotional urges to create a humanised caricature out of Lucy. She is not a four-legged human with a fur coat, she is a dog that lives within the confines of a human ecology, dependent solely on human care, consideration and conference for her survival and wellbeing. In other words, she is living in my world, a vulnerable sentient creature of Otherness, whose existence is solely reliant on my providence as her human companion. Hence, where she is unable to make qualified decisions, it falls upon my shoulders to do so. I feed her the best diet that I can afford, taking into account her individual needs. I see it as my duty to make sure she gets enough exercise, and provide proper medical care. When it is cold, I put warm clothing over her, and when it is hot, I sponge her and keep her in a cool, dry place – simply because the Greyhound has very little body fat, and she can suffer easily from extremes of temperature. Of course, apart from basic health and safety requirements, I also make sure that her clothing and accessories meet my own personal standards for beauty. The aesthetic choices are purely my own, to satisfy my need and not hers. I am very clear about the difference between the two. I call her my “baby girl” and my “child,” but that is because the human worded language is too limited, and lacks the depth and expanse to describe the interspecies relational bond that I share with Lucy. In my mindscape, she is a dog, and she also has her own unique Beingness.
Lucy is a parallel embodiment: in propria persona. I would never wish for her to take on a human personification. That latter concept, though widely popular, especially among mainstream social-focused society, is actually most frightening to me. My connection with Lucy is all the more treasured because of our inter-species interdependence, and I am very certain she is able to discern at the same time that I am not a dog. I do not consider myself, by virtue of being human – nor because I am her caregiver in human domains where she is unable to effectively contribute independently – in any way ‘superior’ to her embodiment. Lucy contributes to my wellbeing in ways no human person, not even myself, is able to do. She has a respectable position of worth all of her own: and this is not because she has been ‘trained’ by humans to be my assistance animal, but merely because of our symbiotic relationship. The richness of our life together lies in the crucial recognition of parallel embodiment, as well as our shared appreciation of the material and elemental world around us – our endeavour of empathy. My perception of our symbiosis may be summed up in the following passage taken from a post in my sensory blog:
“It can be extremely frightening, not understanding the language of the Other. A parallel embodied creature, yet her worth cannot be calculated in human terms. The universe knows, and its measurement remains a mystery. Benighted human beast, contemptible nescient caretaker of such magnificence… I am ashamed… yet… she never gives up on trying to communicate with me.
Lucy has taught me more about my own autism than any words gathered in careful order on pages ever could. She reveals the Self-Other conundrum in ways so tenderly beautiful, no ponderous philosophical text would measure up to.” – Dawn-joy Leong.
My narrative finds sympathetic resonance in Dawn Prince-Hughes statement about her bond with the gorillas she studies:
“You know it’s funny because I’ve been accused of anthropomorphising gorillas, but I think in fact what I have done is I have gorilla-morphised human beings. I didn’t see all these great traits in human beings before I saw them in gorillas. When I look at gorillas, I see people. When I look at human beings, it’s a little daunting.” – Dawn Prince-Hughes
EMPATHY THROUGH SENSORIAL RESONANCE
I have found myself having to explain to my social-focused friends my own connectivity with the seemingly inanimate or ‘non-sentient’ elements. To them, my habit of apologising to the table when I bump against it, becoming ‘inordinately’ upset when a part of a valued object is broken or destroyed, and muttering to the tomato plant seem either overly sentimental or simply irrational. Perhaps their assessment of my predilections stems from their own human-social-centric priorities. What most do not seem to grasp, even after lengthy explanation, is the difference in fundamental modality and operational approach. The human-to-human bond is neither all encompassing nor paramount to my autistic existential realm. I am not averse to the human affiliation per se, I have deep emotional feelings and strong loyalties towards the humans in my life, I am capable of gratitude for the grace offered to me by humans, but the domain that we inhabit together is not the only one that plays a crucial role in my Embodiment of Self.
When operating in the senses, there is no absolute semantic specificity conveying ideas from one to another. Wordful interaction seems unnecessary for mutual empathy. Not sensing the exact same sensations, yet, fully conscious of the richness and fullness, this concrete ambiguity is enough for an empathic attachment, that is, in merely knowing the Other’s ‘state of sensation.’ After all, even in the heavily worded realm of communication, the degree of empathic understanding is not absolute, but rather more an act of sonorous guesswork, with worded language acting as a facilitation channel for thoughts and feelings. Just being aware of possessing a vibrating consciousness of the other’s consciousness, understanding within one’s own domain the frameworks, draws Spaces of Mind nearer and nearer, until there begins to be overlaps and intersections of harmonic soundings.
Much has been done to instil and often forcibly coerce the autist into the realm of the typical. Established programmes and support therapies are aimed at helping autistic persons to adjust to and assimilate within normative systems, with varying degree of ‘success.’ Yet, there are no structured schemes offering or encouraging the non-autistic community a systematic approach towards comprehension and apprehension of the unique autistic domains in an equally reciprocal way. Interested and concerned parties – parents of autists, relatives, friends, and even caring professionals – have had to find their own ways across the quagmire of conflicting scientific information, sieving through dubious and even dangerous advice from pseudoscience and nefarious profiteers jumping on the autism-bandwagon.How may the sensory realm of autism, so critical to autistic experience, be transmuted in such a way that may engender any degree of empathic sonority?
Do not despair
The concept of an intrinsic sensory mental state, “Space of Mind,” and an alternative system of empathising, is not anti-speech. It merely eschews the prevalent veneration of the spoken word, while at the same time offering a poignant glimpse into an alternative system of sensory-focused relatedness. In a beautifully poetic and tender video, “Do Not Despair,” autistic advocate Maxfield Sparrow reaches out to the neuro-majority with a blend of autistic elemental, sensory-resonant empathy and deliberate consciousness of the non-autistic need for verbal reassurance – the kind of empathic offering that autists often wish the normative world would offer – while gently and reassuringly presenting the autistic paradigm.
“If I do not look into your eyes, do not despair.
I do not look into the sun, but I love it,
And I love you.
If I do not say your name, do not despair.
I do not name each minute of each hour,
but I love this time I live,
And I love you.
If I do not hold you in my arms, do not despair.
I do not grasp onto the wind and the rain,
or to the snow, or to the towering mountaintops,
But I love all of these, and I love you.
If I do not show you love in the language
you are accustomed to hearing,
Do not despair.
I speak my love to you constantly in my language
And I do love you.”
(Do Not Despair – Maxfield Sparrow, written as Sparrow Rose Jones)
It may be difficult for the autist to describe this Space of Mind in words, yet semantic language is the most commonly acceptable channel through which the autist may establish contact with the social mentality of the neurotypical realm. As an autistic researcher, I am nevertheless obliged to abide by the prevailing frameworks and protocols put in place for acceptable propagation of my research findings and ideas. However, the available linguistic grammatical systems are, to me, not only awkward and circumlocutory, but simply lacking in sensory cogency to accurately convey the opulence of the autistic mental and elemental state. This is where a more immediately tangible and accessible approach is essential: I call upon art as the agency.
The Autism Self Advocacy Network (ASAN) has adopted the motto, “Nothing About Us Without Us,” from the Latin “nihil de nobis, sine nobis”. At the moment, the climate of autism research, teaching and service provision seems to operate in the opposite direction: Everything About Us Without Us. This is slowly changing, however, with more and more inclusion and collaboration with autistic researchers and practitioners. Here in UNSW, I belong to a research group made up of members from different disciplines – interdisciplinary artists, psychologists and educators – with a common vision to effect positive change, beginning with our own research. It is interesting to note that this initiative originated within UNSW Art & Design, with artists leading the way ahead as visionaries.
I believe that the discipline and practice of art in all its incarnations is crucial to innovative and empathic revolution.In order to understand autism better, one has to empathise with the autistic embodiment. Reciprocal empathy may be facilitated through artistic thinking and expression, bypassing the need for excessive wordedness. In the unfolding chapters, the art of agency and agency of art, as demonstrated in my artistic practice of employing approaches native to autistic functionality – that is, hyper acute, multi-sensorial, elemental connectivity – will be discussed and examined in connection with addressing this howling void in the field of autism studies.
“Artistry is intuition, and intuition dwells not only within theoretical contemplation, but is at the same time embedded in our fingertips, inspiring the rhythm of our breath, communicating through the sensation of dust particles upon our skin, or the sound and feel of water running from the tap. To us, all creative energy is multi-sensorial.” – Dawn-joy Leong.
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We both share a similar fascination for proprioceptivity, a love for dancing, and are avid fans of the two iconic figures of ballroom dancing in the 1930s, Fred Astaire and Ginger Rogers.
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Quoted verbatim without added punctuations.
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Established science offers conflicting perspectives on autism, which can be confusing to the lay person. Pseudoscience makes assertions that are potentially harmful. Until recently, Autism Speaks was a proponent against vaccination. Generation Rescue promotes interventions like hyperbaric chambers, chelation and essential oils as ‘cures’ for autism, they are also anti-vaccine.
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