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I am about seven years old. I am standing in the passage in front of my bedroom. As usual, I see everything in clear detail, the grains in the wooden boards under my feet, the busy-ness of the wallpaper, the brush strokes in the paint on the door frame, the dead fly on the floor in the middle of the doorway. But today also I suddenly see, become aware of, something else – I am different. How, I don’t know, why, I don’t know, and what the words are for it I don’t know, but I know I am different. And I experience this difference as a lack, something others have but I don’t. And I know I need to hide it.

This is the story of my life, in part.... a chapter of Penni

But the one thing above all that has dominated and defined my life is the quest to discover, to understand, to make sense of a world I frequently found confusing, frightening, overwhelming and chaotic; to make sense of my life, and of myself. Or failing that, to simply find somewhere in the world I ‘fit’.

When I was very young, I wasn’t especially aware of other people. If there were frowns and other non-verbal disapproval sent my way, I was oblivious to it. Those early years now seem calm and peaceful in retrospect, devoid of the anxiety, angst, confusion and low self-esteem that later became my habitual response to the world. But as I grew older pressure began to build – I was no longer ‘shy’ or ‘quiet’; but ‘rude’, ‘unfriendly’, ‘stand-offish’, ‘strange’, ‘day-dreaming’, etc, etc. Perhaps this was when I first realized my ‘difference’. But my search had barely begun.

I tried to perceive some pattern or order in the chaos, or to at least create some order in my own small corner of the world. I played dolls tea parties with other little girls – and was very disconcerted when they actually wanted to play with the dishes, cups, etc I had so neatly arranged! I stopped playing dolls tea parties. I climbed trees instead, and played hard running games, and rugby with my siblings and my father on our back lawn. I got called a tomboy. For hours at a time, happily alone, I would swing on our backyard swing, back and forth, back and forth, it seemed to soothe something ‘jagged’ in me. I read anything and everything I could lay my hands on, getting lost in adventure stories, also a kind of questing, and got called a bookworm. Also ‘away with the fairies’, ‘lost in her own little world’, a ‘dunce’, a ‘strange child’, and more.

When I was about eight or nine, my parents bought a set of Reader’s Digest encyclopaedias. I would immerse myself in them for hours, reading about all kinds of things, educating myself, reading Big Words I had no idea how to pronounce let alone what they meant. But nowhere in all those twenty-something thick volumes did I ever find anything that explained me. I was, I assumed, one of a kind. A deficient kind.

As I grew older, the list of names grew – weird, peculiar, anti-social, aloof, odd, not on the same planet… I tried to conform, to please, to be what people seemed to want me to be, I truly did. Increasingly, as puberty marched into my ‘little world’, I bumbled and stumbled my way through life, conversations and social situations, trying vainly to grasp what I was doing wrong, only knowing that I was. There were so many unspoken rules which others seemed to ‘just know’, and which I did not. Others seemed as confused by me as I was by them. I added to my quest the search for a means to transform myself into ‘normal’.

When I was about fifteen, I even became a little paranoid for a while. It seemed to me there was some Big Secret, something everyone else knew but me, and which, if I could only discover it, would affect the needed transformation. I would be able to be just like everybody else. Able to talk, to relate, to interact the way everyone else did.… I tried to ask people, or trick it out of them, but they denied there was any secret. So I decided to try watching people instead, to try and figure it out from observation. (Besides, I was, and am, too rational to really believe in conspiracy theories. The idea that heaps of people, over many generations and/or in many countries, could keep a Big Secret, and why on earth they should, is too ludicrous for words.) I didn’t learn it. I learnt instead how to joke, to clown around, to use sarcasm and other means of verbal self-defense, and generally how to fake and bull my way through situations when I didn’t really have a clue what was going on. Some called me a bitch, and worse names. Plenty still called me weird. As I moved into the adult world of jobs and dating, I continued to flounder, feeling increasingly lost, alone and confused.

In my late teens, exhausted and more confused than ever, I retreated into marriage and motherhood. However, as much as I adored my gorgeous infant daughter, it seemed I was a failure at marriage and domesticity too. Then I discovered feminism, which told me that I had not failed marriage, but marriage had failed me, it was an oppressive institution, part of the patriarchal rule of men over women. Right on sister! I got out of the marriage, and along the way began, tentatively, to realize my attraction to women…

I am 24 years old. Having left my marriage a few months ago and joined the feminist movement, I am now at my first feminist conference. In one of the workshops, I meet ‘real live lesbians’ for the first time, who are not the humourless monsters of the popular image, but women I can identify with. The last act of the day is seeing the Topp Twins perform on stage – this is long before they go professional and take their unique talents to the nation. As they sing and prowl across the stage in leopard skin pants, I finally admit to myself that yes, I’m a lesbian too. As I leave to pick up my daughter, I am delirious with joy. At last, I think, I’ve found the answer to why I feel like a square peg in a round hole – I’m a woman in a man’s world, a lesbian in a straight world! But now I’ve found my ‘own kind’, and life, I assume, will get much simpler and easier from here on in.

Someone up in the heavens must have had a good cosmic belly laugh over that one. Lesbians and feminists, I slowly discovered over the next several years, were the same as everyone else. And I was still the same – me. This was the period of my life when my immovable ‘difference’ really became borne in on me. I tried to understand what those around me wanted of me, tried to guess what they expected, tried to give them what they wanted, do what they wanted, be what they wanted me to be. All efforts seemed doomed to failure. I could not learn The Secret. Relationships imploded, fizzled, or just never happened. Friendships withered or crashed or never really got off the ground. Several years of involvement in the feminist and the anti-racism movements convinced me I did not have what it takes to be a political activist.

At this same time, I was fulfilling my dream of attending university. I had a pre-conception here too, that I would find others ‘like me’, interested in the things of the mind. Well, yes, they were, but… ‘not like me’. It was during these years I first tried to label my difference, if only to myself. ‘Book Smart and People Dumb’, was one such label. ‘Marching to the beat of a different drum’, was another. And the trouble was, I couldn’t seem to hear their drums, or they mine.

The questions in my mind multiplied. Why was I so awkward, so tongue-tied at times, and naïve or babbling stupidly at others? Why could I never seem to catch on, until it was too late, when others were bored, displeased or even angry with me? Why did I always seem to say and do the wrong things? Why – when I felt my intentions were always good – did I so often seem to end up being ridiculed, reviled, rejected, criticised, exploited or just plain ignored? Why did I find difficult and frightening, so many things which others were casually nonchalant about? Why was it that the things which interested me, didn’t interest others, or if they did, not in the same way? Why didn’t anyone want to discuss things the way I did? And above all, why did I feel so different?

I continued to watch people. I tried to copy them, sometimes to the point of mimicry. I listened to their criticisms or well-meaning advice, and tried to follow it. I tried so hard to push through the ‘glass wall’ that seemed to separate me from others, I tried to become others, to transform myself, by sheer force of will, into ‘normal’. I went to counsellors, to self-esteem and assertiveness-training, to this class and that workshop and the other seminar. I learnt much and changed a great deal from the innocent I had been when I left my marriage, but I was still …different.

I read voraciously almost anything I could lay my hands on that seemed like it might have some answers, but though I found something of myself there, nothing seemed to describe ‘the whole package’ that was me. At university I studied languages and linguistics and history, education and politics and the great works of literature, and read far, far more widely than was strictly necessary to complete assignments and pass my papers. I figured the world was like a huge jigsaw puzzle. If I could just find all the pieces and put them together, then the underlying pattern would surely reveal itself, the way a puzzle picture does when it’s completed, and the world – and surely myself – would make sense at last. Yet somehow that pattern eluded me, and the world remained a stubborn mystery, no matter how many facts I learnt, or theories I studied.

I became progressively more disillusioned and broken in spirit, prone to depression and self-hatred, veering between anger at myself, vehemently blaming and condemning myself for all my failures and lacks and stupidities, and anger at the world, unsure if the lack was truly with me or with others. I craved acceptance, without knowing what it was I was wanting people to accept. I knew I was different, but even I didn’t understand the depths of my difference, or just how far removed my mental/emotional processes were from those of others. My health began to break down, and I withdrew more and more from the things I had been involved in, eventually leaving the city, thinking life would be better in the country, that people there would be nicer, more friendly, more accepting.

Well, yes, they were, but still …not like me. Living ‘on the land’ with other lesbians proved less than successful, and I retreated into another relationship, once again making the mistake of thinking it a refuge. I threw myself into making it work. I craved love, and convinced myself I had found it, even though the cost - a decade of verbal and emotional abuse, emotional bullying and domination, mind-control and manipulation so extreme I sometimes didn’t know what was truth and what wasn’t – was extremely high. Her manipulations saw me distanced from the few friends I did have, from my own daughter and family, and even from my own creativity; and under a barrage of constant belittling and criticism, my self-esteem plummeted to new lows. My health plunged to new lows too, and I was finally diagnosed with Chronic Fatigue Syndrome.

Eventually, I had just enough strength left to get out, a physical and emotional wreck. I took stock of my life. I had no money, no job, no health, no friends, and few possessions. My daughter was grown and left home, I was free, but free to do what? Burnt-out and weary, I knew I could not go as I had before. I needed a different approach to life. For some years, I had been involved in women’s spirituality neo-pagan activities, but they didn’t go deep enough for me, and I had been spiritually searching. At the same time as I was ending the relationship, I sought out a spiritual centre and learnt a method of meditation, consciously stepping onto the spiritual path. Through this Centre, I met a number of beautiful and deeply spiritual souls, but …not like me. Still, still …different.

Over the years I had moved from looking at political explanations for my difference (sexism, homophobia?) to intellectual (was I simply more intelligent or creative than others?) to psychological (schizophrenia, multiple personalities, manic-depression…??) But none of these seemed to really fit. It was as if there was a little bit of truth in all of them, but not enough to describe the core ‘otherness’ of me. I had read and studied widely on a wide range of topics. I had lived in many different environments, and encountered many different types of people, from suburbanites to student radicals, university lecturers to factory workers, wealthy people to beneficiaries, latte-sipping yuppies in their city villas to ‘Fred Dagg’ farmers. I’d known lesbian feminists and political activists of all stripes, ‘back to the land’ ageing hippies and spiritual seekers and teachers, a psychic or two, quite a few foreigners and salt-of-the-earth Kiwis everywhere. Many were kind, some tried to help, a few were nasty, most were indifferent. But nowhere had I encountered anyone quite like me, or even anyone who seemed able to understand me. I had spent years, decades, watching people, and it had taught me WHAT people do, and how to mimic that, how to ‘pass’ as normal, but it had never revealed to me what that difference was, or how to BE normal.

I retreated. I curled into my little country hideaway, making little or no attempt to find new friends, make new contacts. Isolated, with plenty of time to think, and having stepped onto a spiritual path, there was an inevitable facing-up to my Self. I lifted the mask I had worn for so long… and underneath it I was raw. I realized how so much of what I’d become was a sham, an elaborate act, one I’d perfected out of sheer desperation, yes, but riddled and rotten with Ego just the same. The next few years, I was put through the emotional mill, with every part of myself, my life, held up for ruthless examination. Sometimes long-suppressed pain would overwhelm me, and I would sob so hard and so long I thought I might rupture something. Sometimes I raged, feeling like I wanted to bang my head against the nearest brick wall, just to let the pulsing feelings, many of which I had no name for, out. At other times, I would lie awake at night staring into the dark, feeling as if all the sorrows of the world were pressing down on me, struggling to breathe, wondering how I could go on. I realized I was terrified of people, of life, of the world. I saw how I had created my own reality, how I was my own worst enemy. Going round and round in circles of angst, I tried to numb out or avoid what was happening, even once or twice stopping the meditation practise I knew was driving this turmoil, but this only resulted in even greater misery. I had to go on.

And slowly, gradually, something began to happen. My wild emotional excesses began to stabilise. The depressions I’d been prone to for so many years steadily became less dark, less deep, shorter and less frequent. I began to get a grip on my fears, letting go of the worst and lessening or being able to handle the rest. I processed and let go of many of the hurts and abuses of the past. I was changing, settling, unwinding, becoming less highly strung… and yet somehow becoming more myself, my true self… whatever that was.

Eventually, when the worst was over, I moved to another town to be closer to my family.  I started a new life, made new acquaintances, got involved in new activities. On the surface, things seemed good. And yet, and yet… at heart, i still knew something was not right. I had given up trying so hard to be like others, but the more I became my true self, the more my feeling of ‘difference’ grew, more and more I felt as if I was somehow a ‘mistake’, a colossal misprint on the page of life, a reject from the assembly line that had produced everyone else. I had found nothing that explained me, ever. I decided that there was no explanation, there was only me, deficient, strange, different, and all wrong. Wrong, wrong, wrong.

It is 2005, and I am working as a part-time teacher aide at a local school. I have been put to working with a young girl who has Aspergers Syndrome. Having heard of the condition, but knowing little about it, I’ve decided to do some research. But as I read, to my shock and horror, I recognize in the descriptions and symptoms not only my student, but myself. Autistic? Who, ME? Up till now, the only real acquaintance I’ve had with autism is when working with intellectually handicapped kids back in the 70s, and my first reaction is – I’m not a flaming RETARD!

I knew this reaction was silly – my student wasn’t retarded, and nor were the others I was reading about – but still… It seemed a very heavy sort of label to wear, with the popular images being overwhelmingly negative. Mute children rocking endlessly, entranced by their own fingers fluttering in front of their face. Rainman-type adults, tonelessly reciting lists. Males who talked endlessly in loud, flat voices about boring subjects. Or, at best, computer nerds with BO, thick glasses and zero social skills. Confused, but wondering, I kept reading, and researching on the Net, going deeper and deeper, coming back to the subject again and again.

And slowly, gradually, a different picture of Asperger’s, and autism, began to emerge. One of a group of people who cover the widest range of capabilities and intellectual levels imaginable. At one end of the spectrum, yes, there are the ones with ‘classic’ or ‘Kanner’s’ autism; children who scream all day long, teenagers who are still not toilet trained, and ‘low-functioning’ adults who must be institutionalised when their families can no longer care for them. But at the other end of this spectrum are the Asperger’s and ‘high-functioning’ autistics group; among them can be found Nobel Prize winners, university professors, a lot of ‘eccentric’ types, and many ‘ordinary’-seeming men and women who hold down jobs, marry and raise children.

My research, including every online test I could find, began to reveal for the first time the full extent and radical nature of my difference. And time and time again in my reading, the shock of recognition came. “I do that!”, I would realize, or “I did that as a child!” Or, “that’s how I feel, how I think, how I react to this or that, that’s me, this is me, this is … me”.

This is me.

Slowly, gradually, I began to accept this truth, and many things about myself, which I had never before thought of as connected, began to look like part of a larger picture, pieces of the puzzle. My perpetual clumsiness for example, or my love of swinging as a child, and of hanging my head over the edge of beds or couches. Or how, in new environments, I can feel as if every part of it is ‘shouting’ at me, so that my eyes can’t sort it out, or my mind ‘map’ it. Or my difficulty – absolute inability as a child – with transferring knowledge or skills learnt from one situation to another; my lifelong struggle to ‘read’ people and situations; and the way even small changes can upset and frighten me - despite my life having been full of change, the only way I’ve been able to cope is by coming to ‘expect the unexpected’. And then there’s my ‘obsessive’ tendencies, where I can get so absorbed in a current interest I don’t want to stop even to eat, sleep, or do housework. And more, and more…

Of course in many ways I do not fit the standard image of an ‘Aspie’. I’m female for one. The current figures are about three or four males to every female, but as more women and girls are diagnosed, this keeps changing – it used to be ten to one. Who knows, it may end up equal or near-equal numbers. (We females manifest the symptoms differently too – less boring everyone with our current obsession, and more anxious watching and mimicking of others’ social behaviour, for instance.) And when I am in ‘overload’, I ‘freeze’ or go blank rather than throw huge tantrums. I have to be pushed pretty far before I start yelling or pushing people away. I know how to ‘behave properly’, and I have social skills well beyond what is considered ‘normal’ for an Aspie. But these have been deliberately and consciously acquired through many years of observation and imitation – they are not instinctive, as they are with non-Aspies, and hence frequently prove inadequate to new situations, or if the contact goes beyond the superficial.

And it seems even the so-called ‘experts’ don’t always agree on the list of symptoms or how they are typically displayed. The field is a comparatively new one, many of the blanks still being filled in. Tony Attwood himself, the ‘guru’ of Asperger’s, has said that most of his knowledge comes from the people with Asperger’s themselves. We are the real ‘experts’ on the syndrome.

So, despite differing from the ‘standard’ Aspie image, I have come to embrace this new identity, this new wholeness of self. My difference, at long last, has a name. And there are others like me out there, I am not alone.

I am not alone.

As I explored online, I found forums run for and by other Aspies, joining Alyson’s one, and making new friends. For the first time, I have found others who think, feel and react the way I do, have many of the same difficulties I do, and who’ve have had many of the same experiences I’ve had. To someone who spent years feeling ‘lost in the wilderness’, this is treasure beyond counting.

This new identity has not made, not is it likely to make, a huge difference to the external circumstances of my life, or how people relate to me. My daughter, for instance, simply shrugged and said ‘you’re still just my mum!” But internally, it’s made a huge difference. I no longer feel like a mistake. I am not ‘all wrong’, not weird, crazy, stupid, deficient or arrogant. I am simply wired differently.

The world at large may never make sense to me, but the puzzle of my Self is complete, I make sense at last.

I am an Aspie

By Penni Winter 

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