Inside Undiagnosed Asperger’s Syndrome: the high school years.

This is the extended version of the lecture I delivered at the School of Education, UNSW, on 14 August 2012, to an undergraduate class, at the invitation of Dr. Iva Strnadova. Some of the content are repeated from an earlier lecture. The actual lecture was deliberately shortened to make time for a more interactive question and answer session. I thoroughly enjoyed the wonderful response and rapport, and any further communication on the subject is welcome!

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Inside undiagnosed Asperger’s Syndrome: the high school years.

Thank you, Dr. Iva Strnadova, for inviting me to the class, and thank you all for open ears and minds.

Iva has requested that I focus my talk on my experiences during the high school years, as I was given to understand that you are all currently or going to be teachers of high school students. Before I begin, I would like to state that I prefer to use the term “Autism Spectrum Condition”, rather than “Autism Spectrum Disorder” – because it is, after all, a condition, a neurological state of being, not a vile infectious disease, and because of its widely heterogeneous nature, it is not a “disorder” to many of us. Therefore, I would strongly recommend this alternative, more inclusive and respectful terminology, which I myself have now adopted in my research and writing.

I am a music composer and singer, visual artist, and performer in many dimensions of the word. I authored and illustrated a series of music textbooks for use in primary schools in Singapore, co-produced and recorded my own songs, produced and directed full scale music concerts, taught preschool for almost twenty years, as well as been a high school teacher for a short period of time. My current Ph.D research and artistic practice investigates the influence of autistic sensory and cognitive idiosyncrasies on creative process, and how artistic research and practice may be a means towards creating mutually empathic platforms between neurotypical and neurodiverse worlds.

I was diagnosed with Asperger’s Syndrome at a very late age, in my early 40s. I grew up not knowing that there was a name and a reason for my eccentricities. All I knew was that I was ‘odd’ and not like the others. I also have hypersensitivity and I believe that sensory issues are an under-examined influence on most of the hurdles faced by individuals with autism across the spectrum. It thus became part of life, for me, to be actively and consciously developing my own self-intervention strategies and coping mechanisms for every aspect of life inside an alien and very often very harsh social-relational landscape. In my case, necessity was the mother of invention, and I engaged in a great deal of invention!

As a direct result of my own experiences, I am a firm advocate for not coddling a special needs child (or any child for that matter). Instead, applying logic, knowledge, understanding, consideration, patience, affirmation, encouragement and a whole lot of kindness would be far more beneficial than being overly protective just because of the child’s special needs. I see too many spoilt, yet grossly misunderstood children nowadays, where an autism diagnosis is used as a blanket excuse for terrible bad behaviour and sloppy parenting. I have met parents of young people with Asperger’s, who have never bothered to read a single book about the condition of their own volition, and rely solely on advice from once a week sessions with the psychologist, or well-meaning hearsay from other parents. On the other hand, there are many others, parents and autistic individuals, struggling to survive intact, victims of mainstream education and a bigoted social system that marginalises whoever appears to be different from the perceived general norm.

I was fortunate in that my home environment was very conducive to learning, and I grew up with a healthier self-confidence than many others of my generation with Asperger’s. My father was an important mentor for my early development, and mother greatly encouraged voracious reading and the pursuit of knowledge in the home.

It is not surprising then, that most of my valuable education from primary to high school took place at home. I can honestly say that I learned next to nothing at school, and going to school was a great trial for me. I spent almost every excruciating hour in school longing to go home and indulge in the kinds of learning that truly fascinated me. Home was where all my interesting books were, where I could draw, paint and create and do my chemistry, biology and agricultural experiments. I do not shun the idea of structured schooling per se, though I am equally convinced that there are some, like myself, who would benefit much more from home-schooling, provided there was the right kind of home education put in place.

Apart from having to attend school and the combined horrors of sensory overload and social confusion, my childhood was mostly rather idyllic, and my home life very well suited to an inquisitive, detail focused mind with intense interests, hungry for knowledge, and a preference for learning in relative isolation at my own pace. However, the world changed quite dramatically when I entered high school.

I had realised very early on, before becoming a teenager, that “acting” was imperative to my survival in a contrary environment. I grew up with two neurotypical older sisters and a neurotypical mother, who incidentally was a teacher. As a child, I hated to be teased or berated by mother, teachers, older siblings and peers for hearing sounds that were ‘not there’, gagging at smells that ‘didn’t exist’, ‘overreacting’ to loud noises, complaining about too bright light, being averse to going to school, and being distracted too easily by every little sound or movement. Sensory meltdowns were viewed as tantrums, and met with harsh punishment. Hence, I quickly learned to utilise my special talents to the fullest, to offset whatever it was that disadvantaged me. Meanwhile, in order to mask and play down the constant sensory stress and anxiety, I was ‘acting’ my part too. Essentially, I was “performing life”, and doing quite a good job of it!

From the time I could read (at an earlier age than my peers), I read books about human interaction and socialising, what others do and think in a social setting, how to behave, what to say and 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 and high school days. They recall many details about me, and positive incidences and enjoyable situations in which we had interacted, but I found that I had no conscious memory of most of these, especially the interactional ones. I had no fear, per se, of social encounters, but the constant sensory overload that these brought, together with the relative disinterest (I wanted to be far away, one my own, engaging in much more fascinating and captivating activity) had caused my brain to gloss over all those events. So focused was I on just surviving and ‘getting it over with,’ in actuality, I literally lived the phrase: “Art performs life, as life performs art”.

Being a teenager is difficult for anyone, and the high school years are terrifying and confusing for most, regardless of neurological make up. We are all, at the same time, grappling with a myriad of external and internal issues: physiological changes, huge emotional and mental transformations, socio-cultural shifts in our immediate personal spheres due to our changing statuses from childhood into young adulthood. We are, as if, in a ‘no man’s land’, where we are no longer children in many aspects or positions, but not yet independent adults.

Neurotypical society is based largely on the idea of conformity, ‘sameness’ is more acceptable and desirable than diversity, hence the term, “sticking out like a sore thumb” and not something more edifying! In the area of socialising, for a teenage autistic person with very little Theory of Mind for neurotypical contexts, becoming at one with the crowd is not only unnatural but high nigh impossible at an innate level. Many other individuals with Asperger’s have written about similar experiences in the social-interactional dimension, agonizing over inability to make friends, social confusion, being bullied because they were misfits and outcasts etc. They often cite lack of self-confidence, poor self-image, self-loathing, and social fear as some of their major hurdles. Teachers and carers should take due note of these issues. However, my own experience of social stress points more towards sensory difficulties. I actually loved the eccentric person that I was, and quite delighted in being ‘odd’ or ‘apart’ from the common crowd. I had a rebellious streak that became more and more marked in my teenage years, the idea that most of adult authority was not worthy of my respect unless they earned it was a pervasive mental attitude. This may be common in all teenagers, but for me, it stemmed not from being unsure of myself, or my inner mental and emotional positioning, but from being aware of other people’s lack of ability to perceive my mental state and from distrusting the intentions and intelligence of others.

My one great difficulty, from teenage to young adulthood, was dealing with the growing realisation that the majority of others were extremely limited in their perspectives, and they just could not understand nor accept my eccentricities. Instead of fighting internal demons of self worth, then, I was constantly extremely stressed at having to devise strategies to survive external un-empathic social interactions, having to extend myself in order to meet others where they were, because other people were unable and unwilling to come to my perceptual level and/or dimensions. (The lack of empathy seems to me to be a general human impairment, not one exclusive to autism at all, in fact, quite the contrary!)

During my teenage years, an idea began formulating in my mindscape, and has finally found some concrete shape and structure now in my current research. It was during this period of my life that I began to consciously and deliberately ponder the enigmatic question of whether it is possible to create mutually empathic states between people with different mind-sets or cognitive make up.

Much has been postulated about the autistic ‘lack of Theory of Mind’, that is, the inability of autistic persons to innately intuit the mental states of non-autistic people. My basic problem with the hype surrounding this finding, first proposed by Simon Baron-Cohen, is that it hinges solely upon the neurotypical social, relational and emotional constructs. Given what we now know about marked differences in cognitive and sensory processing patterns between the autistic and neurotypical, it should not be surprising that there may be a breakdown in intuitive ability to quickly grasp the nuances of a completely different system of communication than our own. It is akin to being thrown into a foreign country and culture, and being labelled somehow inadequate because one is unable to immediately grasp the subtleties of their language and cultural innuendos. Ludicrous, you say? Yet, this is the prevalent attitude towards Autism Spectrum Condition. There is so much focus on lack of social reciprocity of the autistic person, but none is said or written about the neurotypical’s inability to instinctively understand the mental and elemental realm of an autistic individual.

As a teenager, I was becoming more and more aware of my relationship with other people, the necessity of being connected to a larger collective, and even began to desire to identify with others. However, to me, it was not about ‘fitting in’, it was more an ardent quest to find like-mindedness, people I could communicate with on an equal level, without my having to make most of the effort and derive very little out of it. I wanted these friends to be like myself in some ways, and yet be eclectic and individualistic enough to retain my interest in them. I did find a group of friends, and I am pleased to say that they remain my closest friendships to this day. I met them in Junior College, that is, the final two years of high school, when I was 16 years old. They were a group of outcasts themselves, because they were gay young men, struggling for similar acceptance and validation inside a conservative, right wing Christian and Asian social setting. Here, my eccentricities were readily accepted, even appreciated. One of them recently told me that they had felt I was rather glamorously aloof, like an “Ice Princess”, and they admired my sense of the dramatic and timing. Little did they know at the time that I was ‘aloof’ because I was suffering from terrifying sensory overload, I was socially confused, and that the ‘dramatic sense and timing’ was merely a necessary survival skill! Of course, I have since divulged my autism diagnosis to all, but it didn’t matter anyway, because to them, I was already accepted as “me”, my existence didn’t have to have a label or a reason. Again, I count myself one of the fortunate few. There are more lonely, disengaged and unhappy autistic teenagers than there are those who have found comfortable social niches with similarly unusual youngsters.

This quest for like-mindedness extended into the area of romance. Everyone was beginning to experiment with dating in the later part of high school. I was extremely thin and waif like at the time, a figure that only fashion-loving gays appreciated, but not heterosexual young men with awakening raging hormones. I also never quite understood the nuances of flirting and what the other girls referred to as “the art of cute”, but instead had a terrible talent for somehow saying things that would make the young man’s lack of intellect all the more evident. No, young men do not like that at all, not even those with robust intellects, because their egos (or self-confidence) sadly did not match their intellect at that stage of development. Needless to say, I had dismally few dates, which never lasted, and my gay friends would tell me that was because I frightened the boys away by my intensity and opinionated ‘smarts.’ On hindsight, I now realise that my father had unconsciously become a kind of Golden Standard for me. Even though father passed away several years ago, I still hold him up as an ideal for companionship – a highly intelligent ‘Renaissance Man’, with multimodal, multidisciplinary, intensely focused interests, who engaged me intellectually, and with whom I spent many wonderful hours working on practical projects together. I never outgrew my childhood admiration for father in my teens, and in many ways, he is still a powerful force in my life now. (Yes, I am still single!)

My academic life in high school evolved into a nightmare of epic dimensions.

The subjects were becoming more and more complicated. I could not longer cruise along, waste time in school, continue to indulge in my own interests at home, and at the same time maintain good grades. I fell behind in my schoolwork. I just wasn’t interested in some of the subjects being forced upon me. English Literature was one of them. I loved reading, but I couldn’t become engaged with the process of analysing texts and social plots and characters. I only liked to read very specific kinds of fiction – G.K. Chesterton, P.G. Wodehouse, Charles Dickens, Arthur Conan Doyle, and children’s classics by A. A. Milne and Kenneth Grahame – and I would read these over and over again. My mind fought against the imposition of a syllabus that dictated my reading. I also much preferred to immerse myself in non-fiction, factual books. These were books that contained and delivered a wealth of information about things I wanted to know, and preferably with illustrations and diagrams, because, as a visual thinker, I wasn’t all that quick with vast swaths of dry text. (To get through my study of Shakespeare, I drew detailed illustrations in my textbook, which did not amuse my teacher one bit, but these were important visual aids for me, not to mention a good way to alleviate boredom in class!) One of my prized possessions for many years was my father’s human biology sketchbook, which contained all his medical school drawings of human anatomy and cross sections. I wept for days when I discovered that mother had carelessly thrown it out in a fit of house cleaning while I was away at university, and I still feel a tinge of resentment as I speak of it now.

A series of unfortunate events eventually led to serious and devastating underachievement. Midway through high school, I was relegated to the ‘arts stream’, where they throw everyone deemed ‘too stupid to study science’. Like most people with Asperger’s, I do not have a strong general intelligence but rather very skewed abilities, centred on my focused interests. I was very good at biology, I could manage chemistry because there was the visual and sensory dimension to hold onto, but mathematics, at that time, was of paramount importance if one wanted to study science subjects, and I just could not manage abstract mathematics even though I was good at geometry. At the same time, I excelled at visual art, music and English language, but fared dismally at English Literature, history and economics. My talents did not fit well into the system, because they straddled what was an irreconcilable divide: the sciences and the arts, heuristic as well as hermeneutic practices. Both my ‘O’ and ‘A’ level results were appalling, and I was accused of purposely rebelling against the system. Was this rigid resistance deliberate or merely a reflex reaction stemming from intrinsic autistic cognition? Now, with a diagnosis and with all the knowledge I have gleaned about Autism Spectrum Condition, I know that my problem was that I did not have sufficient academic guidance in high school. There was nobody insightful and qualified who cared enough to identify and help me develop my innate talents, according to my unique cognitive style and intense interests, and yet at the same time, help me to devise ways to compensate for my learning weaknesses, especially where it came to subjects I had little interest in.

A famous quote from William Wordsworth says, “The child is the father of the man.” According to Maria Montessori, the first seven years of a child’s life is crucial to learning. We all agree that childhood is where the seeds of life are planted. However, the teenage years are when these seeds grow and mature, and the strength and vibrancy of their development depends on how they are nurtured during this delicate, fragile period. My own seeds were planted in my childhood, but were stifled and prevented from growing fully during my teenage years. It has taken a very long journey, throughout my adult years, to return to a state of quintessential existence. It is somewhat ironic, but not the least surprising, that I am now engaged in interdisciplinary research and practice.

I actively advocate for the cause of autism awareness because I have great hope that the experience of education, socialisation and acceptance will become better and better for future generations of autistics. The system may need to be changed, but a system is a human construction, and hence, all real, dynamic and potent change begins at the level of each individual believer and executor of this change.

Each time I tell someone I have just met that I nearly didn’t even get to enter university at undergraduate level, there is an immediate reaction of astonishment. They usually say, “But you are working on a Ph.D!” Indeed, I am, but it has taken me more than half my life to arrive where I know I should be at last. It is my hope that with better understanding of Autism Spectrum Condition, the educational and emotional needs of unusual minds, and with greater active, willing, mutual empathy, there will be fewer and fewer autistic (or different minded) individuals failing to achieve their fullest potentials, but instead more neurodiverse individuals being emancipated to develop their talents and become cogent contributors to human society as a united whole.

This, then is my reson d’ete, a favourite phrase of mine:

“It is not my intention to ‘fix’ what is broken, but instead, to empower beauty in the unusual and the different.”

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7 thoughts on “Inside Undiagnosed Asperger’s Syndrome: the high school years.

  1. Wow! I found your article very compelling. I am a home educating parent who has encountered many young people who learn and think differently. I am going to share your work with them in the hopes that it will light their parents choose educational methods for them. It would be fascinating to have a private dialogue with you if you are amenable. Thank you!

  2. Wow I have been reading so much on this subject because I am sure to my core that my teenage son has Asperger’s. I have found very little to describe how he is experiencing daily life, this is my biggest concern. He is an amazing, kind, talented person who spends every single day of school ” just getting through the day” surviving… he is different form other boys, he is a thinker not a violent streak in his body, hates most sports except canoeing so has never been a part of a team, always loved nature and marine life. lately he seems to have become more Like everyone else… The teenage years seem to have awakened in him the need to ‘play the game’ to fit in he has begun to conform to what is expected….I know it’s an act and hard hard work as he is exhausted by it. I’m angry that he has to do this to survive, he shouldn’t have to. There must be a huge internal struggle going on. He would have been considered depressed as a ten year old, but he told me he just gives up and tells teachers what they want to hear and his blank expression masks his inability to offer the correct non verbal responses. if he’s being yelled at (again and again) by a teacher for ‘forgetting and being unorganised’ or ‘daydreaming’ even falling asleep…He just keeps his face blank as he knows that any expression will be wrong and any words will be wrong, the yelling will continue (HATES yelling and injustice). But he quite enjoys the frustration this brings out in his teachers, It’s his little one up on them, they are a bit stumped by it…he does it to me and I know how infuriating it is to have no comeback during an altercation…everything I have read has been focusing on teaching these kids to adapt and fit in so that they have a more normal and easier life…. as a mother that is so enticing because the hard road is being true to yourself even though that’s really what I want for him because having to hide his true self is as much a struggle as being his true self. But as I watched him go off on a summer camp to Irish school with 200 other kids my heart broke when my son, although milled among the throng of kids, was the only one sitting alone on the bus, instantly plugging in his earphones to block everything out. He wanted to go, the two weeks of Irish speaking is done on a water sports course, no football or hurling, for once he will be better than his peers at the sport, but there will be nowhere to hide and no escape onto his computer… this will be make or break ……. I read your article I think to try and get an insight into what life feels like to him. Everyone has always said he grew up on the inside and is waiting for everyone else to catch up. I think we are waiting for the ‘normal’ world to evolve and accept … I think he is exceptional, brave and inspirational and I will always have his back until the majority see this in him. Thank you.

  3. Thank you for sharing, Melanie. Your son sounds like a wonderful young man. It makes me very glad each time I hear about the kind of parental understanding, love and support such as you have for your son. Indeed, like you, my hope is that we will move towards a more embracing and neurocosmopolitan future.

  4. An embracing neurocosmopolitan future….. What a beautiful thought 🙂

  5. What a wonderful lecture!
    You could be describing me here, except for one thing: I did not have your awesome home-life, with intellectually passionate parents.
    Until very recently (I am now 58 years old) I never thought of myself as on the Spectrum; my passion, however, was, from the age of 18 when my aunt gave me the book “Dibs” to read, to understand Autism! Sadly, the wheels came off. My biggest regret in life is that I was never able to complete a line of tertiary study that would ultimately have led to Neuroscience, specializing in Autism. I can, however, still read the papers done by researchers such as yourself.
    Thank you.

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