Autism and me: a lifelong quest for Beingness and clemency of Being.
Guest lecture, 27 August 2015, School of Education, UNSW, Australia.
Thank you, Dr. Iva Strnadova, for inviting me to deliver this guest lecture since 2012. It has become an annual event I look forward to greatly.
I promised Iva I’ll tell as many personal stories as possible within the time limit, and so I shall. But before I launch into the dramatics, I’d like to begin with some basic terminology.
When I first began on my research journey, I adopted the prevalent deficits-focused, pathological perspectives and terminologies, because that was all I knew at the time. However, I henceforth prefer to use the term “Autism Spectrum Condition” instead of “disorder,” because this better describes the neurological culture that autism actually is. I also no longer use functioning labels – “high” or “low” functioning – as they are not only insulting to autistic persons, but more importantly they are based on a system of measurements that does not properly respect the innate autistic functional modalities and paradigms.
Now for my fabulous stories.
I grew up cocooned inside a relatively idyllic childhood where education was concerned. My home was filled with a lot of learning and hands on ‘doing.’ Mum was a primary school teacher and dad a practising dental surgeon. Both had a thirst for learning and many hobbies. There were not only a wide variety of books at our perusal but also plenty of things to do. I was folding origami shapes before I could read text, simply silently following the visual diagrams in mother’s craft books. Dad was a polymath who dove into his interests with professional focus – dance, art, music, gardening, woodwork, carpentry, literature, electronics (he also held a degree in electronics and electrical engineering) and computers were just some of his indulgences. Dad had a workroom full of fascinating equipment and tools, and I was his little apprentice. I had my own mini biology and chemistry lab in the back, where I learned how to dissect small animals, and the fundamentals of chemistry, as well as basic safe practices when handling sharp implements and chemicals. I experimented with simple food chemistry long before molecular cuisine became the fad it is today; read unabridged Dickens and Chesterton by the age of 10; and played piano ‘by ear’ before I began formal lessons.
My casual ‘homeschooling’ was in fact perfect for the hands-on sensory connectedness of the autistic mind. The problems began when I entered mainstream education, and was confined to the tyranny of the classroom, tortured all day in a sensorially assaultive space with dozens of smelly, noisy human bodies, and forced to listen to utterly boring teachers drone on about things I had already grasped in far more concrete and vibrant ways.
The biggest obstacle for me was the all encompassing body of sensory difficulty, which was painful and undermining, while also facing strong autocratic opposition to my natural learning style. However, I tried to look for attractive things to get me through the day. I liked interacting with friends who shared similar interests, for example, animals, music, theatre, art and more animals. Some of these social connections remain my friends to this day, which is quite a lovely thing really, considering I went through most of school life in a state of high anxiety (and hence dissonant disconnection).
At this juncture, I’d like to conduct a little experiential exercise in sensorial empathy. I will play a video of my exhibition in November last year. Take this to represent the more pleasant aspects of daily sensory bombardment – the best case scenario. Inside this space, there are yummy and free cupcakes freshly baked. You can only get these cupcakes if you make it through this wonderland of overload. As an added layer of disturbance, the video will proceed as I speak, and you shall have to multitask mentally as well as sensorially, much like how autistic people live every moment of their lives.
Here we go!
(More information on the exhibition can be found here: Little Sweets 小甜心 )
I fared remarkably well in the early school years: I topped my class twice; I wrote, produced, directed and acted in my first musical theatre at the age of 9; excelled at debate and trivia quizzes; won prizes in interschool drama and storytelling competitions; and aced almost everything apart from sports. These were the ‘yummy cupcakes’, incentives, that kept me going. Of course, being able to return home to my wonderland of hands-on learning was the overpowering goal. Every day, I looked forward to getting through the surface layers of frothing seething flotsam and jetsam so that I could dive back down, into my calm sanctuary underneath, at the bottom of the ocean.
However, the struggle between development of Self and pandering to the systems of Other eventually proved too overwhelming and detrimental to my overall health and wellbeing, and I suffered a complete educational meltdown upon entering high school.
The autistic teenager not only grapples with the angst riddled mental-physical-social transition from childhood into young adulthood that every human inevitably experiences, but also battles with the juxtapositions of individual autistic traits upon already volatile circumstances, and the sheer force of the frictions created.
In high school, lesson times were longer, pain levels increased, as did anxiety and distress. Imprisoned in classroom, chained to desk and chair for the entire day was indescribable hell. As subjects became increasingly complex, the teaching became more detached and disconnected with my reality. There was a frenzy of ridiculous and meaningless homework to complete. I could no longer retreat into my own little world of hands-on sensory learning and catch up at home. I became more and more physically unwell, with less and less time to just exist in any level of intrinsic harmony at all. This meant no more indulging in my biology and chemistry lab, no more food experiments, no more hiding in my art studio to draw, paint and create, and even once beloved music practice became a nauseating process of meeting with the demands of examination syllabuses.
Everything I loved and thrived on was taken away from me. I loved biology, chemistry and geometry, but could not master physics or abstract mathematics, so I was relegated to the arts stream in senior high school, even though I detested history and English literature. Then, I was denied the chance to take up music as a subject because my overall grades were not good enough, despite possessing an obvious talent for music.
I struggled to cope as best as I could, but even my most avid self interventions were attacked as deviant. For example, I was chided and derided for drawing on my text books – it was deemed childish and defiantly inattentive. My teachers could not understand that I needed to create images for the deluge of words, to flesh out the characters and connect with the subjects. The more complicated the concepts became, the more I needed this connectivity, yet the more it was denied to me. I was even told by my art teacher that I would never make it as an artist, because I couldn’t colour or paint within the lines! (Ironic, because here I am, working on a Ph.D in art.)
My high school teachers, who had heard all about my exceptional brilliance in grade school, just could not understand why I fared so dismally, and they just put it down to “rebellion”! Needless to say, my attendance in school became erratic, I would take every chance I could find to either not attend class, to play truant, or just use my physical illnesses as excuses to leave class and go home. Once home, I was so spent and distressed that I could do nothing but sleep. My older neurotypical siblings were all excellent students in the most traditionally correct ways, and they labelled me the “lazy bum”. My mother called me a disappointment, harping on and on that I was deliberately underperforming.
Mainstream education practically ruined my mind and nearly destroyed my learning journey. I failed miserably at O and A levels, and nearly did not make it into university. Fortunately for me, a combination of dogged autistic persistence and clemency at finding the right mentors propelled me through, in fits and starts, across a vast expanse of time, to where I am today. I wish it didn’t have to take me this long to get here, but I am happy to even be able to see a glimpse at last of what I always knew I was meant to do and be.
At this juncture, I’d like to frame my educational history in the context of what I currently know about autism. I cannot offer you quick solutions to the ‘problem’ of autism in your mainstream classrooms, but I would like to suggest a novel paradigm to you, from which you may find the answers to many of your questions, and upon which I urge you to build new and innovative programmes that no doubt many of you will have a part in creating, which will move and shake the world of education in the future!
Take time to know your student – Nothing About Us Without Us
When I first began studying autism, I approached it from the traditional and prevalent deficits-focused model of pathology, because I knew no better way. However, I always felt there was something missing in the way autism was being presented. The more I employed the labels and parameters while trying to be inclusive, accepting, embracing and encouraging of innate abilities (my own and that or my autistic students), the more I felt I was being shoved back in time, into the quagmire of the system of education that nearly ruined me, where every single thing about me that I was proud of and that felt natural was deemed deviant and defective. This just did not feel right.
In recent years, my research has led me to embrace neurodiversity from the inside out.
I now view autism as a neurological culture. My PhD dissertation, Scheherazade’s Sea – autistic parallel embodiment and elemental empathy, presents autism as a Parallel Embodiment. Along with a few fellow researchers (including progressive neuroscientists), I urge the new generation of educators, care givers, mentors, parents and siblings to rethink and review autism from intrinsic perspectives, rather than a collection of abnormalities.
Empathy is after all the ability to step into the shoes, so to speak, of another entity apart from yourself. Would you like to find out what helps us to function better? What creates the right kind of calm space in which we may flourish? What is the language of our communication?
Autistics are forcefully ‘ABA-ed’ into mimicking neurotypical behaviours considered ‘more acceptable’, and only considered half decent humans if we manage to achieve some level of mimicry of a culture that is not our own.
Why should a conglomeration of strangers from a foreign culture create and dictate the descriptions, functional standards, and paradigms?
Nobody in the right educated circles these days would think it logical to create a measurement for oranges based on the properties of apples, or actively promote any programme that explicitly seeks to create Europeans out of Asians. Yet programmes and therapies aimed at making autistic persons more neurotypical are taught in universities and applauded as immensely successful (with a proud body of “data-based” evidence of ‘success’ to brandish too), and so much money is spent on these absurd and horrifying dehumanising methodologies. Should there not be a more empathic way to achieve cohesion and teach coping strategies?
I have a better suggestion.
What if we work together at the Endeavour of Empathy, to create a mutually reciprocal social milieu, a Neurocosmopolitan hybridity? I am talking about a seismic shift in mental attitudes, not in a LaLaLand empty philosophical fantasy. Science will be better served if new perceptual and attitudinal modalites were introduced. And artistic thinking may yet lead the way. It wasn’t so long ago when medical professionals were up in arms when told to wash their hands in between consultations, examinations and operations! Would not all the money and time and energy be better spent towards developing programmes intended to help neurotypical and neurodiverse (not only autistic) cultures to embrace diversity and strengthen our humanity through this new paradigm? After all, in the words of one famous autistic person, Temple Grandin, “The world needs all kinds of minds!”
I end with a quote from my own MPhil thesis, a statement that has become the raison d’être for my life’s work henceforth:
It is not my intention to ‘fix’ what is ‘broken’ but to empower beauty…