My Life with Hypersensitivity and Asperger’s

My Life with Hypersensitivity and Asperger’s – lecture notes from a session with professionals in special education, specifically about sensory acuity and coping with hypersensitivity. (UNSW, School of Education, 14 May 2012, 5-7pm.)

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Thank you, Dr. Iva Strnadova, and everyone here, for inviting me to share my personal perspectives and experiences of hypersensitivity and autism, how it has affected and continues to affect my daily life, the ways in which I have learned to cope with it.

I prefer to use the term “Autism Spectrum Condition”, rather than “Autism Spectrum Disorder” – because it is a condition, a neurological state of being, not a vile disease, and I personally do not view it as a “disorder”. Hence, I recommend this alternative terminology, which I myself use in my research and writing.

From observations of my own patterns of sensory and cognitive idiosyncrasies and that of others with similar quirks, I am now of the opinion that a great deal of related comorbids of autism have sensory bases and/or links.

I was not officially diagnosed with Asperger’s until well into adulthood. I was, however, always referred to as an ‘odd’ child. Growing up was both bitter and sweet. I did not have any language delay, although I am told that I preferred to be on my own most of the time, engrossed in solitary play. I learned by observing others around me, taught myself origami at the age of three just by looking at the diagrams and pictures, and I was reading Charles Dickens by the age of 8. I still have vestibular issues, i.e. inner ear imbalance, vertigo. In the area of proprioceptive disabilities, I never had any difficulties with fine motor skills, I play the piano, I like to dance, but to this day, I am unable to catch a ball or any other objects being thrown at me, or play any ball games.

Much of my earlier education took place at home, where I had a mini art studio, and a small chemistry and biology lab at the back of the house. My father, who was the epitome of the modern polymath, was my inspiration and mentor in many ways, and I am quite certain that the autism gene came from his side of the family. A dental surgeon by profession, he indulged in serious, intensely focused interests, which ranged from hands-on projects to highly intellectual pursuits. Some of these included carpentry, gardening, cooking, music, art, ballroom dancing, classical Chinese literature and traditional Chinese medicine. My mother was an English language teacher who loved the British classics. She had a library of books, which she encouraged us to help ourselves to. This childhood learning atmosphere of synergetic diversity laid the foundation for my lifelong multidimensional approach to learning, articulation and artistry. I now believe, given the right kind of environment, some higher functioning, hypersensitive autistic children may benefit more from homeschooling rather than forcing them into mainstream general education.

Growing Up inside Mainstream Education:

As an individual growing up with Asperger’s Syndrome (undiagnosed until adulthood), I have had to devise my own strategies for learning and adapting in a socio-relational environment based on functioning neurological systems that are foreign, and often hostile, to my own, as well as acquire a level of self awareness so as to turn idiosyncrasies, commonly perceived as ‘weaknesses’, into ‘strengths’. One of my greatest challenges was with a rigid, exam-oriented general education system, where my Asperger’s tendencies towards detailed focus, intense and exclusive interests and unconventional methods and ideas, led to excellent grades in some subjects at the expense of others. This resulted in combined, overall scores well below my actual intellectual abilities.

Much as I loved learning and discovery, I absolutely abhorred going to school. From preschool, primary, through secondary and junior college – mainstream education was a nightmare for me. Every aspect of being in school and engaging in interaction with the people who inhabited school, was torture. The physical environment alone was a guarantee for sensory overload. Imagine, 40 sweaty bodies in various stages of rancidity, sitting inside a room in the tropical heat, with no air-conditioning in the 1970s and early 80s, but only an irritatingly old, rickety and groaning fan that stirred the hot air around the stinking room, chalk being scraped across blackboards, tables and chairs being dragged across concrete floor, and flickering fluorescent lighting. I also remember the forced social interaction, bullying or teasing by peers (especially one particular girl), and being punished, berated and belittled by teachers who could not understand my eccentricities as innate but rather insisted that these traits were acts of purposeful rebellion.

It is normal for very young children to cry at school, and the usual assumption that adults have is that they are upset because they feel insecure, have no friends, or are having separation anxiety issues. I cried in school, during the earlier years, not for any of those reasons. I was suffering from acute sensory stress – the noises, the smells, the encroachment into my personal space, the frustration at learning next to nothing because everyone was talking at once, only interested in play, and, to me, the teachers were loud, defensive and accusatory, and / or just not engaging at all. I had already learned at home whatever it was they were trying to teach, and I remember consciously longing to escape from this horrible environment, and go back home to get on with the real learning! I was overwhelmed at the same time as frustrated.

One incident in primary school still stands out in my memory: my art teacher tore up my artwork and told me I wasn’t good at art, because I couldn’t colour within the lines! What an irony indeed. Teachers and caregivers need to be aware of what kinds of impressions and memories they are implanting into young, vulnerable minds.

How did I circumnavigate my nightmare years in mainstream education? The keyword is performance, or the art of performance. I realised very early on that “acting” was imperative to my survival in that contrary environment. I hated to be teased or berated for hearing sounds that ‘were not there’, gagging at smells that ‘didn’t exist’, overreacting to sudden loud noises, complaining about too bright light, and being distracted too easily by every little sound or movement. Hence, I quickly learned to utilise my special talents to the fullest, to offset whatever it was that disadvantaged me. I wrote my first musical at the age of 9 and persuaded my teacher to allow me to stage it. I produced, directed and acted in it, and by the time I entered secondary school, I had established myself in this niche, which earned me a good measure of respect from teachers and peers. Meanwhile, in order to mask and play down the constant sensory stress and anxiety, I was ‘acting’ my part too. I was performing life.

I read books about socialising, what others do and think in a social setting, how to behave, what to say when, and how to say things in public. I secretly practiced in front of the mirror every chance I had. I also learned from the many hours spent watching dad’s MGM musical videos, ways in which to project my voice and my personality, and I literally dramatized my entire public life. However, inside my own brain, I was not fully connecting with most of the social aspects of life. This was not because I did not find friends whom I liked and who liked me too, but because I was suffering from sensory overload most of the time. Recently, I attended a few reunion gatherings, with former classmates, who date back to primary school days. They recall many incidences and details about me, and situations in which we had interacted, but I found that I had no conscious memory of most of these, especially the interactional situations. The constant sensory overload had caused my brain to gloss over all those incidences, so focused was I on just surviving. I literally lived the phrase: “Art performs life, as life performs art”.

Many other individuals with Asperger’s have written about similar experiences in the social-interactional dimension. They often cite lack of self-confidence, poor self image, and social fear as some of their major hurdles. However, my own experience of social stress points more towards sensory difficulties. I never had deep-seated issues with self-confidence, I actually loved the eccentric person that I was. This had a lot to do, again, with my father, who was, himself, unapologetically maverick, and I admired him greatly. Only my mother tried to make me more ‘conformist’ and ‘normal’, but she never quite succeeded. My difficulty was dealing with the knowledge that others could not understand nor accept my sensory and cognitive eccentricities. I was constantly extremely stressed at having to devise strategies to survive inside un-empathic environments.

Ongoing Challenges as an Adult with Autism:

What is it like to be an adult with higher functioning autism and hypersensitivity?

Let me share with you two basic types of common comments I hear whenever I tell people that I have Asperger’s Syndrome, and hypersensitivity.

“But you don’t seem autistic to me!”

And variations on this theme:

“You are too confident, too much of a social diva!”

“You can’t be autistic, your movements are smooth, confident and spontaneous, you engage in conversation very well, you are not stiff and awkward like Temple Grandin!”

Well, what is your idea of an adult with autism? There are many textbook descriptions of sensory, cognitive and behavioral idiosyncrasies associated with Autism Spectrum Condition. Hence, you would naturally be looking out for these properties.

However, many adults with higher functioning autism may be right there in your midst without you realising. A good friend of mine is a young autistic man who juggles a part time job at his local supermarket, while working towards a Bachelors degree in History. Another friend has physical disabilities which are obvious, but whose autism goes unnoticed because she is extremely vocal and self-confident. She is a voice-over artist and talented visual artist, among other things.

However, many of these features can easily be methodically and expertly hidden from the public eye, by an autistic individual whose intense focused interest is creative performance, and who has spent an entire life mastering the art of masking these idiosyncrasies. Does it mean that I have successfully ‘cured’ myself of autism? Absolutely not! You never do ‘get over’ autism. It is, as earlier stated, a neurological hardwiring, and not an illness. However, the obvious outward symptoms can be toned down, and concealed most cleverly, in ordinary superficial situations, with the right kinds of self interventions.

To illustrate better my internalisations, let me read to you a short, humorous musing of mine, written two years ago in my journal:

“6 hours out of the home yesterday. Listen, I love my friends, I’d do a lot to help a friend in need, and to reassure my friends that I love them… but most do not realise the price I pay, just for that small amount of person to person interaction.

I went to help my friend with his new internet set up at 9.30am in the morning. It was raining cats and dogs, and I usually do not even go outdoors if it is raining this hard, but he is a loyal, supportive friend, who has been very kind to me, and I want to return the goodness.

After the setting up, we had lunch in the mall nearby. Then, he wanted to do some shopping. Following that, we had a teatime snack. The mall was full of chattering, sneezing, coughing humans milling around, my senses were reeling from the smells of people in various states of un-wash, children screaming and dashing around, big screen visuals of the World Cup, mega loud noise being blared from huge loudspeakers in the main lobby, and horrible muzak playing nonstop inside each individual shop. At one stage, I really felt like screaming! But I had to control these instincts, I had to summon all my physical and mental strength to behave as ‘normal’ as possible, to quash the urge to faint or break down. What do I do? Silent deep breathing exercises to lower the heartbeat, force my brain into semi-shutdown, go into auto-pilot.

I didn’t get home till 5pm, and that was only because I finally told my friend that I really couldn’t stand it anymore and needed to go home. Yep… I suppose this sort of thing is very ‘normal’ stuff for ‘normal’ people? But I got home with a fever, throbbing headache, aching all over, coughing incessantly, left Transmandibular joint swollen and felt as if it was screaming bloody murder into my left inner ear, plus a sudden outburst of angry ulcers. As soon as I arrived home, my entire mental state went into meltdown from sensory overload. I broke down in tears, illogical angry tears, upon reaching the sudden contrasting atmosphere of peaceful solitude. This morning, I am still struggling with fever, sore throat, migraine headache, vertigo and severe ulcers. It is stay home day today, to recover.

I do not blame my friend. It is not the fault of my friends. In a way it is my own fault, that I am so well trained NOT to show my sensory discomfort, I am so well socialised into insensitive normalcy, and so very good at masking the physical aspects of meltdown, that nobody can tell what is happening inside me. I can be breaking down, and people around me will only see at the very most that I have become a little quieter and am walking a little slower, with a slightly dreamy tired look in my eyes. And I am the one who pushes myself sometimes beyond my own limits.

This is why I am against over-normalisation of children with AS (apart from teaching them basic manners how not to encroach upon or throw their own crap into other people’s space, not to spit at people whose faces annoy you, not to throw food around etc). What this over-normalisation does is merely to make life easier for the other people, the non-autistic parents and teachers and friends, but it creates an invisible cage of absolute sensory hell for the child.

Sometimes, it seems that the more ‘normalised’ we become, the more we are made to feel guilty at being who we are, our innate needs are ignored, even by ourselves, or worse still, derided, because they are not ‘normal’ and they inconvenience others who do not have the same needs.

The irony was, inside that crazy cacophony in KFC, as we were tucking into unhealthy, greasy fried chicken, my friend was telling me all about the greater sensory awareness that my recent performance work had evoked in him, how he’d never known there existed different sensory states and how much he’d learned from the message embedded in my work. I guess it was worth it after all. I do love my friend, and I am passionate about my advocacy and my work!

Temple Grandin is very right – not enough attention is being paid to the real and pressing area of sensory issues in AS research, learning and development!”

Here is another phrase that I hear all too often:

“BUT I HAVE THAT TOO!”

In response to hypersensitivity:

Well, I know that hypersensitivity is not the sole premise of Autism. Some non-autistic people have hypersensitivity too. So, perhaps, they DO get that too! Not all autistic people are sensory acute. Some are hyposensitive – but, I notice that nobody likes to say, “But I have that too!”, about hyposensitivity, although many neurotypical people I know are extremely lacking in sensitivity! Such a person once actually cooked and ate a huge bowl of mouldy oats, without suspecting in the least that it was more mould than oats she was imbibing, and of course, had severe food poisoning as a result. She just couldn’t smell the rancidity at all, but when the same bottle containing the offensive oats was presented to me, I gagged and ran off to the bathroom to throw up in less than a second after the lid was opened. Incidentally, this happens to be a non-autistic person who loves to say, “Me too!”, to every anomaly that I have.

In response to social overload:

Social Phobia is another feature that is not the sole premise of Autism. A great number of non-autistic people suffer from various forms of social phobia, or have a lower threshold for socialising than others. On the other hand, many individuals with Asperger’s actually enjoy making friends and being in the company of their friends. I do. However, their thresholds are extremely limited, and this, I suspect, can be largely due to sensory idiosyncrasies, more than actual social aversion. The act of social interaction is not merely psycho-social in dimension. Socialising exposes the hypersensitive individual to a literal smorgasbord of sensory stimuli, and this is made all the more confusing and overwhelming because sensory acuity almost always comes with varying degrees of difficulty with sensory integration. Social gatherings inevitably confront the senses with having to keep up with semantic meanings in verbal conversation, repartee, external stimuli like lighting (too bright, too dim), background sounds (music, traffic and other people’s voices and conversations if in a public place), and various spacial and proprioceptive stimulation. The hypersensitive person has to sieve through all that information and sort them out as quickly as possible into coherent information, while trying not to break down in a state of overdrive. This is extremely exhausting. I often compare this sensation to being forced to listen to a Wagnerian epic symphonic opera and trying to identify every individual instrument, melodic and harmonic sequence, vocal nuance and semantic meaning, while keeping up with the narrative and trying to explain it all coherently at the same time!

Attention Deficiency is another trait which is not exclusive to autism, but which is very prevalent in Autism Spectrum Condition. It is a complicated phenomenon, but I again suspect, that for many, there is probably a sensory link to this as well. I would recommend checking the sensory environment, if a child displays signs of attention problems.

One of my professors made this poignant comment: “I actually wondered, since your disability is ‘invisible’, if you ever get fed up with people saying “oh I have that” when you describe your condition?  The act of conveying your experience to others must be extremely difficult at times.”

Well, yes. Trying to explain any kind of concept, which is alien to the other person, is undoubtedly difficult and frustrating. The human mind is not good at empathising, especially when presented with situations or ideas completely foreign to their own personal experience. I used to be very upset indeed. However, I deal with it nowadays with a wry but patient smile. Then, I take a deep (often silent) breath, and tell them:

Autism is a combination of factors, and how it affects each person depends also on the exact intricate and complicated configuration of that combination, and not just one or two of those features, which non-autistic people may have too. There is no “one size fits all”. However, if you sincerely wish to know more about me, let’s spend more time talking and perhaps you should also spend some time reading about the subject?

Asking people to read never fails to throw the insincere ones off. Most social-minded people do not like to read, especially not about someone else’s condition other than their own. In addition, many of the people who are too ready to declare, “But I have it too”, are not really interested to find out about someone else anyway, not even someone they profess to care about.)

Why are so many people claiming to “have that too” whenever I talk about traits in autism? Is it because we are now perceived as especially smart and talented people? Has it now become somehow ‘trendy’ to be differently hardwired? Are you afraid to be common? I say these half in jest. However, I suspect that one or more answers are probably true. The other possible reason for this “But I have that too” response, may be a subconscious (or deliberate?) impulse to deny us our diagnoses, our states of being, because these “But I have that too” people are insecure about who they really are, and thus feel threatened by what they perceive as those with ‘special’ abilities (or disabilities). Perhaps, they are afraid of the very idea that, once they recognise and admit we are indeed different, they may just have to treat us with a different kind of consideration and respect?

Right, I think I have waffled on enough.

I would like to end with a short introduction to my ongoing research in the influence of Autism Spectrum sensory and cognitive idiosyncrasises on creativity and artistic process. I shall use my most recent performance work as an illustration.

SCHERAZADE’S SEA (2010) – A BRIEF PRESENTATION

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Autism and Creativity – your story or mine?

There is currently a growing interest in Autism and creativity. However, most of the available literature in this area is either anecdotal or research done by non-autistic persons. While there are a few first person accounts by autists in the fields of mathematics and science, the most famous examples being animal behavioral scientist Temple Grandin and mathematical savant Daniel Tremmet, there remains a dismal lack of scholastic publication by autistic artists. Scheherazade’s Sea is my humble introductory foray into this as yet uncharted area of Autism research.

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Scheherazade’s Sea is made up of nine interlocking segments, each one with its own sub-theme, instrumentation and media, sensory and artistic features, presenting different aspects of the my artistic raison d’être.

Due to time constraints, I shall present only the more apparent features of Autism in Scheherazade’s Sea.

1. Scale of Work: small scale, detail focused style – less social interaction, avoid sensory overload.

I created Scheherazade’s Sea entirely on my own, working in isolation. Collaboration occurred only at the final stage of presenting the performance itself. This differs from the norm, where most interdisciplinary performances are highly collaborative productions, reflective of the social nature of typical human interaction, which can be challenging to an artist with the unusual sensory and cognitive characteristics of Autism. Despite having produced performances of substantial size in the past, my personal preference is to work mostly alone, on smaller scale, and more intimate projects.

2. Sensory Opulence and Painstaking Detail Focus – an expression of multimodal perception.

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As you can see in the photograph, the set of Scheherazade’s Sea is a smorgasbord of visual and tactile offerings of eclectic objects, vibrant colours, rich textures and whimsical installations. This is an expression of a constantly heightened state of sensory acuity and inherent cognitive propensity to take in and dwell on details.

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Hypersensitivity thus predisposes me towards interest in multi-sensory artistic expression, as an extension of my reality. In the segment Oranges and Milkshakes, with a silent looping video of busy city streets in the background, I served freshly cut oranges and blended strawberry milkshakes to the audience, while drawing their attention to the sounds, images, textures, tastes and smells in daily life which are ignored and pushed to the subconscious. For an individual with hypersensitivity, the mundane and innocuous can become inordinately amplified.

3. Strong localised bias -working from inside out.

Another reflection of strong localised bias lies in the conception and construction of this work. Apart from a single visual seed, the image of a little girl lost at the bottom of the sea, I did not have an elaborate blueprint in mind. The eclectic components of Scheherazade’s Sea were slowly developed, initially as seemingly separate organisms. Later, when the various parts were progressively more and more fleshed out and near completion, I began to organise and construct the comprehensive plan for the structure of the work. It is a process much like putting together a jigsaw puzzle, without first knowing what the complete picture would look like – a task which many Autistic persons excel at. This fragmented style of creativity supports the theory of strong localised bias, which is underscored by attention to and abundance of detail. However, the predilection towards intense detailed focus does not, in my opinion, indicate a lack of global coherence, but rather it presents a different route to which a centrally coherent structure may be arrived at, that is, working from inside out, instead of outside in.

4. Creativity and Imagination in Autism: Autistic Fantasy – a kind of hyperrealism?

Studies suggest that creativity in Asperger’s is based more on elaborate alterations of reality than on the conjuring of completely new, previously non-existent material. This assertion seems to be true to my own approach to fantasy, which is very firmly rooted in reality. Each interwoven thread of fantasy and drama in the rich tapestry of Scheherazade’s Sea is spun from real life events, characters, experiences and emotions.

5. A Different Perception – welcome to my world.

From the many positive audience reviews, I felt that I had largely achieved my goal of creating a personal expression of my atypical sensory and cognitive world and conveying it to others. The only one dissenting voice was that of a visual artist, who criticised the work as being too “too busy!”, with an over profusion of details. She also complained that the videos were tilted and not properly aligned with the screen. My reply to this? “Exactly! Welcome to my sensory world!”

When I conceived Scheherazade’s Sea, my objective was not a work of entertainment, nor display of artistic virtuosity in conformance with prescribed norms, but rather to create a simple doorway into a different paradigm of existence, a different way to see, hear, touch, taste, smell and be. Herein lies the purpose for my ongoing interest in the study of Autism and the creative process: it is not my intention to ‘fix’ what is ‘broken’, but rather to embrace and empower a different kind of beauty, offer an alternative approach to learning, exploring and experiencing, and to promote the acceptance of a neurodiverse aesthetic.

To close, here is a video of selected highlights from the premiere performance of Scheherazade’s Sea.

[This video is an extended version of the one I showed the class. More videos can be viewed in my youtube channel, or my website.]

Wake Up in My Dreams (Dawn-joy Leong, 2010)

Dancing with my shadows,

Whispering good night.

Humming silent wishes,

Smiling deep inside.

Dancing with my shadows,

Jarful of moonbeams!

Come, lay down beside me,

Wake up in my dreams.

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