Jessica Kingsley Publishers

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A Blessing and a Curse

Autism and Me

Caiseal Mór

Paperback: £15.99 / $25.95

2007, 234mm x 156mm / 9.25in x 6in, 208pp
ISBN: 978-1-84310-573-2, BIC 2: BGA JM

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Chapter One

I've been a zombie. I've marched among the ranks of the walking dead. For a long while I muddled through my restless existence enshrouded within a thick, heavy fog of dreamy amnesia. I was lost to the world. Every now and then I might snatch a brief glimpse of my surroundings, but it was never enough to break the powerful spell that bound me.

Mostly I've been so shut down I didn't know who I was, what I was doing or where I was going. Whenever circumstances overwhelmed me I lapsed into a crippling catatonic state that could last for hours or days. Until three years ago when the enchantment began to lift, I was mostly ignorant of my predicament. As I stirred from my weird, stumbling slumber I began to look at the world through new eyes.

I don't fit the clichéd stereotype of autism. I'm not physically disabled. I'm not deaf, dumb or blind. I don't stutter uncontrollably. Nor do I compulsively twitch and cower. I'm not the Rain Man, for pity's sake. If it weren't for my eccentric fashion sense I probably wouldn't stand out in the crowd at all.

In my humble opinion autism is a wondrous gift - a blessing of sorts. As far as I'm concerned, autistic benefits far outstrip any drawbacks you can imagine. But it's taken me a lifetime of self-examination and inquiry to arrive at that conclusion.

Parents, peers and psychologists made sure I knew I was a defective child. I was very young when I adopted the view that I'm of less value than everybody else. It's a view I've been unable to shake. I've long accepted that I'm a deeply flawed individual, inherently faulty and, therefore, not quite human. It was drummed into me day and night: reinforce an assertion to someone enough times and eventually they won't question it.

My resulting sense of unworthiness was reinforced through the excessive use of a powerful tool known as shame. These days I regard shame as a weapon of mass destruction in the battle for conformity. I know that if I'm ever to heal the splintered pieces of myself I must first stare down the dragon of my shame and subdue him; even if the blood-sucker can't be slain.

My original intention in putting all this down on paper was to release the terrible burden of shame from my shoulder. What I've discovered is that real shame - regularly reinforced, industrial strength, 60 gigahertz shame - doesn't just melt away with a mumbled confession. That sort of shame is a wicked little beastie who digs his claws in deep. He stays forever close, clinging tightly to your back no matter how much you squirm and struggle.

I often dream of a time when the shame-dragon was not my constant companion. In my dream I'm four years old or thereabouts, in the days before I spoke my first words. I'm seated at my bedroom window staring at a tall gum tree outside in the empty paddock. The tropical night air is heavy in the stifling humidity of the Australian summer. Suddenly an intense white flash briefly parts the darkness. The dry top-branches of the tree burst into flame, exploding like an enormous Roman candle. I love the scent of burning eucalyptus oil. Fearlessly I run outside to bathe my spirit in the brilliant orange light of the burning tree.

That vivid dream still visits me at least once a week. I believe it may hold a clue to my mystery. I get great satisfaction from discovering hidden meanings in messages. I love deciphering symbols and secret signs. I could spend all day joining the dots if I was allowed to. Perhaps that's why I was drawn to the craft of the storyteller.

Storytelling has been the most satisfying experience of my strange life. I regard it as a kind of spiritual practice akin to meditation. I'm told I've got a gift for it. So to begin with I'd like to share one of my favourite tales with you.

There was this young man I used to follow around from time to time. His name was Marco. Marco Polo. Marco Polo was me.

***

[Story not included in online extract]

***

My early childhood has always been a bit of a blur, so when I got curious about my origins I had to do some research on myself. Before Mother passed away, 15 years ago, I had a few opportunities to speak with her. In one of our final conversations she revealed some facts about my early life that I hadn't previously been aware of.

I was an unusually quiet baby. Within a few days of my birth the doctors realised there was something very wrong with me. I had no obvious physical defects but I wasn't responding to stimuli. According to these experts, that meant I was severely brain damaged.

I wasn't expected to live. Mother was told to expect the worst. As a result, even though I was an extremely beautiful child - some said angelic - she never allowed herself to become attached to me.

In my first few years I rarely cried or made a sound - not even when, at 18 months, I rolled my pram down the stairs and cut my forehead. After that tumble I quietly crawled off and went about my baby business with blood dripping off my chin.

In my second year I suddenly stood up on my own two feet for the first time and ran. Mother reckoned it was as if I'd been biding my time, waiting my chance to escape. We were in the city on a shopping expedition. I leapt out of my pram when she wasn't looking and sprinted off down the street as fast as my little legs could carry me. I crossed dangerously close in front of a tram and disappeared into the crowd, tearing my clothes off as I went.

I would have got clean away too, if I hadn't run straight into the arms of an enormous fluffy panda bear that hugged me so tight I couldn't move. I opened my mouth wide struggling to scream; but nothing came out. I hadn't started speaking at that stage.

That panda bear is still very vivid in my mind - the man in the panda suit haunted my nightmares and my waking life for years afterwards. He was very angry with me. I'd knocked over all the free samples of potato crisps he was giving out. His wares were scattered over the pavement.

I remember him holding on to me, even though I squirmed desperately to get away. Then, suddenly, he was laughing. The change was so terrifying I froze, stiff as a board. My bowels turned to water, spilling runny shit down my legs. I vomited up my breakfast porridge and he pushed me away in disgust.

Mother said she caught up with me at that very moment. She smacked me hard across the backside again and again until I fell over. No matter how hard she hit me I didn't make a sound. I ended up naked on my back on the pavement with my arms tight by my sides and my legs straight. I was staring up into the sky with my unblinking eyes wide open.

It cost her ten shillings to replace the potato crisps - an enormous amount to a struggling family in those days. She never trusted me again and never forgave me to her dying day for the awful embarrassment I caused her. Whenever we went anywhere after that I was put on a leather dog-leash secured under my arms and around my chest.

Soon after that incident my hearing was tested. I remember some of what happened. I had to wear headphones and the loud beeps left my ears ringing painfully. I had all sorts of impressive medical paraphernalia taped to my head. I have a vague recollection of the room. It was dark and I felt safe.

When they left me alone, pretty lights flashed in front of me and a big machine hummed. I liked its song and I loved the colours of the lights. I remember the nurse because she hummed a little melody in tune with the machine.

In my early years I didn't blink very often; if I did, it was mechanical. I often flapped my arms about like a stranded pelican, but I almost always had a blank expression on my face. The sight and sound of steam trains made me clap like a performing seal, and I'm a little embarrassed to admit they still inspire the same delighted reaction.

I knocked cups and plates off the table because I liked the sound of china smashing. I stared endlessly into the mirror. I compulsively licked my lips and picked congealed snot from my nose. Snot was the only thing I voluntarily ate without putting up a fight.

I sat with my head pressed close to the radiogram speakers whenever a record was put on - unless it was fifties jazz. I hated jazz and I'd hide in the closet whenever I heard it. I still get very upset when I hear jazz of that era. It frustrates me and I have to fight a strong compulsion to find a dark place to hide. When there was no music I tapped my feet on the floor creating intricate rhythms.

The doctors couldn't work out exactly what was wrong. It was the sixties and few, if any, medical professionals in Australia had an awareness of autism. The diagnosis, once again, was irreparable brain damage. Mother put me on a waiting list to be permanently admitted to the state mental hospital.

My parents had a house in the outer southern suburbs of Brisbane; the capital city of the sub-tropical state of Queensland. My father's mother, a widow, lived nearby in a poky, two-room, fibro shack. Father's sister, my auntie, lived on a large chicken farm on the other side of a narrow, trickling creek, a stone's throw away.

Auntie was an enthusiastic evangelical Christian. Father often insulted her behind her back or told derogatory tales to illustrate her stupidity. There was no love lost between them. Auntie's husband was a tall, dour Scotsman who had more wrinkles than anyone else I knew. They had two children.

Mother's parents shared our house. Everyone called my mother's mother Nanna. Later, she was the first person I ever addressed by name. I hated using names. This quirk is typical of me even today. I still avoid using names whenever possible. When I eventually started talking I called her Nanna because I worked out it was her nickname. That made it okay.

Nanna was a gentle soul who'd had an extremely hard life. Most of her hardship was caused by my grandfather - Pop. She was absent-minded and often fell asleep in the middle of a story or while contentedly chewing her supper. She was made fun of for being slow-witted but I liked her more than anyone else in the world. She told marvellous stories.

Pop was a tough, strong, belligerent man whose wiry hands always reeked of tobacco. He had a sun-tanned face with golden blond hair that was only just beginning to grey. He could roll a cigarette with one hand. When I was older I found that fascinating. I learned how to do it. Pop also had a wicked sense of humour; but he could turn violent at the drop of a hat. Nanna blamed the rum for that.

In his time he'd been a blacksmith, a horse-breaker, a cattle-drover, a coal-miner and he'd wielded a cane-knife in the sugar fields. In the early sixties, when mechanical harvesters replaced the cane-cutters, he was reduced to living in the city and working on the wharves unloading ships.

He hated living in Brisbane. He said the place brought back too many painful memories for him. In summary he inhabited a kind of living Hell and he made sure everyone else did too.

In one of our last conversations Mother told me she'd been physically brutalised by Pop as a child. A few times I saw him raise his hand in the air as both Nanna and Mother ran for cover. I believe Pop was behind Mother's propensity for cruelty.

I was lucky. He usually ignored me. Rarely did his gaze fall in my direction. The worst thing I recall that he ever did to me was to stub out his cigarette on my arm and call me an idiot. I didn't cry out. I never cried out. He must have thought that was hilarious because he doubled up with laughter.

I was instinctively very frightened of Pop right from the start. I didn't like anything about him. In fact I hated being in the same room as him. I'd often run outside to escape the sound of his voice. If he gave an order, it was instantly obeyed. He commanded a huge amount of respect. It may have been born of fear but it was respect nonetheless.

Despite my overwhelming fear of the man I was also intrigued by him. His behaviour threw into sharp contrast the weaknesses in Father. The two of them never got along. Pop was always playing nasty little practical jokes on Father.

He'd lift all the lids on the paint tins in the shed then loosen the screws on the shelves so they were balancing precariously. Father would close the shed door behind him and you'd hear the paint tins and the shelves come crashing down. It was clear Pop got a kick out of tormenting Father.

When I was three my little sister was born. I cried for the first time shortly after her arrival. I can't say whether the two developments were in any way related, but I don't see any connection. There was a party the day she was pronounced healthy and normal. I stayed in my room and listened to the glasses clinking; the laughter and the singing. I didn't like crowds. I was overjoyed to be forgotten for the night.

Within a few weeks my whole life was turned upside down. First Nanna and Pop moved into their own housing commission place on the other side of town. I was glad he was gone. What I didn't understand at the time was that Nanna had been my guardian.

Without Nanna to keep watch on her, my mother slipped into neglecting me. Mother had a new focus of interest that took up all her energy. My sister cried all the time to be fed. Mother was always exhausted and cranky.

Father got promoted and had to work longer hours. He'd been accepted into a higher degree of the Masonic Lodge as well. He had more responsibility and privileges. The mood in the house was suddenly much brighter. I heard Father laughing for the first time.

I copied him. I started laughing. I'd laugh the moment my eyes opened in the morning, and sometimes I wouldn't stop even when all the lights went out that night. I'd laugh when Mother slapped me. Much to her embarrassment, I'd point at strangers in the street and laugh.

Mother told everyone I was desperate for attention. She often explained my odd behaviour as jealousy over my sister. That wasn't at all true. Quite the opposite in fact. I was so relieved when my sister came along. I hated attention. I loathed being touched, fondled, spoken to or cooed over. I preferred to be left alone in my room in the quiet. I couldn't work out why no one understood that.

Before my sister I'd been forced to be sociable. She took up my share of the attention and the resulting freedom was joyous. Much of the fear that had haunted me up to that point seemed to melt away.

I never spoke to my sister much. In later years she pretended she didn't know me. Even though we shared a house and family I don't recall ever looking directly at her more than a few times.

Mother became increasingly worried my mental problems might be contagious. She often warned me to stay away from my sister. She needn't have bothered. We were never close. To begin with, I didn't like what I saw. In my eyes she appeared sickly and weak. I had a sense she wasn't going to be around for very long. So I was determined to make the most of her presence while it lasted. While my little sister was being fussed over I could drift off into my own world. I was suddenly free to explore my surroundings.